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Episode 7: Amplifying Voices of Disabled Women Wednesday, February 24, 2021 GUEST: Alannah Murray https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/S1_E7_Amplifying_Voices_of_Disabled_Women_Alannah_Murray_Final.mp3 Our guest this week is disability advocate and postgraduate researcher, Alannah Murray. She brings insights and experiences from Ireland to our conversation about uplifting the voices of disabled women around the world. We explore the relationship between feminism and disability. And discuss reproductive health rights and social inclusion of disabled people, the inclusion of disabled people in LGBTQ+ spaces, and much more! QUICK LINKS As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability. OUR GUEST: Alannah Murray Alannah Murray is a disability advocate and postgraduate researcher living in Ireland. Her advocacy mainly focuses on key social issues such as social inclusion of disabled people, reproductive rights and promoting greater inclusion in LGBTQ+ spaces for disabled people. She holds a bachelor’s degree in film and television production and is currently writing a master’s thesis on Disability and Culture in Film. She is the co-founder of Disabled Women Ireland, and in 2019 completed a placement in Washington, DC, as part of the Washington Ireland Program; a program aimed at engaging young leaders across the island of Ireland. She started her activism journey in her second year of college, while researching her award winning documentary Roll Camera, a documentary exploring representation of disabled people in Irish Film (which you can find here). She has campaigned extensively for equal accessibility to transport, greater funding for students, the need for inclusive education and reproductive healthcare for disabled people. She delivered a TEDx Talk on Disability and Social Inclusion (which you can find here) , and has delivered numerous workshops on Disability & Sexuality, as well as the need for greater accessibility for disabled people in LGBTQ+ spaces. TRANSCRIPT Sarah Kirwan Hi and welcome to Incluse This! I’m your host, Sarah Kirwan, and this is a movement for disability equity. Today, we’re talking with Alannah Murray and we’re talking about uplifting and amplifying the voices of disabled women. Alannah Murray is a disability advocate and postgraduate researcher living in Ireland. Her advocacy mainly focuses on key social issues such as social inclusion of disabled people, reproductive rights and promoting greater inclusion in LGBTQ+ spaces for disabled people. She holds a bachelor’s degree in film and television production and she is currently writing a master’s thesis on Disability and Culture in Film. She is the co-founder of Disabled Women of Ireland, and in 2019 completed a placement in Washington, DC, as part of the Washington Ireland Program; a program aimed at engaging young leaders across the island of Ireland. She started her activism journey in her second year of college, while researching her award winning documentary Roll Camera, a documentary exploring representation of disabled people in Irish Film. She has campaigned extensively for equal accessibility to transport, greater funding for students, the need for inclusive education and reproductive healthcare for disabled people. She also delivered a TEDx Talk on Disability and Social Inclusion and she has delivered numerous workshops on Disability & Sexuality, as well as the need for greater accessibility for disabled people in LGBTQ+ spaces. Sarah Kirwan Welcome to Incluse This! Alannah. I’m really, really excited to have you and I’ve really been looking forward to our conversation. Thanks for having me. Sarah Kirwan I love your accent, too. So, if I just stop and listen to that, everyone will know why. ha. I think the first time we talked, I said that too. Oh, it’s so soothing. One of the reasons I’ve really been looking forward to having this conversation with you is because the areas that you work in are areas that I really want to and need to learn more about. So, we have limited time and I just want to dive in because we have a lot to cover. One of the areas that you focus on is the connection between feminism and disability. And, I want to read a quote from Buzzfeed contributing writer, Lucy Webster in her article titled the Politics of being me. I have a university seminar on gendered security to thank for one of the biggest epiphanies I’ve had about myself or rather about the politics of being me. In the midst of a heated debate about how gender is used to control people’s movements. Sarah Kirwan Suddenly it hit me so much of modern feminism relies on the ideal of female bodies that work as expected. For me and lots of other disabled people, that’s a model we simply don’t fit. I’m a lifelong feminist and disability activist yet it took until that very moment for me to see that I am not simply a woman and disabled. I am a disabled woman that well-known feminist rallying call. The personal is political suddenly took on new meaning. I realized that things that had always seemed to mere facts of life like inaccessible shops or restaurants that didn’t provide a disabled toilet are obviously exclusionary. That every time someone is patronizing to me say, or assumes, I am unable to read, they are not just making unfounded assumptions about the clinical nature of my disability. They are also labeling me as different as abnormal. Nothing could be possibly more political than applying these labels, not just to me, but to a whole group of people who are consistently devalued and dehumanized and feminism showed me how I should respond to this by asserting my humanity and being proud of my differences. Sarah Kirwan Alannah, can you explain the connection between feminism and disability for us? And talk about your own experiences with both of them and what this writer is referring to? I’ll do my best. So, basically I suppose from my perspective, I’ve always kind of connected the two because, I can’t be disabled and a woman separately. Like I am a disabled woman and everything, comes back to my disability and my womanhood really like, the idea that, we’ll grow up and get married and have babies, but as a disabled woman I’m told, that I’m not supposed to do any of those things, like I’ll never find someone that, would take me on. If they do, they’re a Saint and heaven forbid, I should have kids, because disabled people are seen as a burden and women are seen as that. They take on the burdens of their husbands and it’s their job to be the person that’s the person that’s there that does all , that does all the cooking, the cleaning, and really carries the house. At least in Ireland anyway, we’re still a very kind of patriarchal country. I think for me, it was really important as a young woman to really challenge those ideas. Really I got into kind of disabled feminist activism, during Ireland’s fight to repeal our abortion laws. Basically abortion was illegal because the Catholic church still very much has, or had at least control over most of our Ireland or most of its like education and healthcare were very religiously based. That is so interesting and really leads into my next question for you, which is the work that you do around reproductive rights. This is such a broad term. So, I’ve done a lot of research around that and on what that means as an issue for disabled women. I would just want to read this abstract from an article that, or excuse me, it was a study that’s titled Disabled Women and Reproductive Rights, and it was conducted by Virginia Kallianes and Phyllis Rubenfeld. The abstract states, both the women’s and disability rights movements have paid scant attention to the concerns of disabled women, especially involving sexuality, reproductive freedom and mothering. Although their concerns may seem opposite of the women’s movements, primary agenda, they are based on the same position. Women must not be defined solely by biological characteristics and have the right to make decisions about their bodies and lives. Disabled feminists often support reproductive rights, but also have different perspectives on abortion and reproductive technologies than non-disabled feminists. The literature indicates that the reproductive rights of disabled women are constrained by the assumption that disabled women are asexual, which you just mentioned, the lack of reproductive healthcare, contraception, and sexuality information, and social resistance to reproduction and mothering among disabled women. Disabled women are at risk for a range of undesirable outcomes, including coercive sterilization, abortion, or loss of child custody. What does this mean for the day to day life of a disabled woman? Can you explain that in plain language? So we can really understand what we’re talking about and why it’s important to educate that we educate on this area of activism. So, I first started working, in this in this, kind of the, this space where were fighting against… Nobody was allowed abortions. People were getting on a plane and flying to the UK to have their abortions. There was 12 people a day flying to the UK to get an abortion, access and healthcare in a different country. We noticed that nobody was talking about disabled women. Like they were disabled people in general. I don’t like to use the word women in this kind of case because not everyone that needs an abortion as a woman. Nobody was really talking about disabled people in that space. We really wanted to kind of get a handle on that. Our main focus was education, because were saying, look, disabled people, disabled women. These are the issues they’re worried about their child being taken away from them. Ireland had a history of putting disabled people institutions and in those institutions, they would be sterilized. It’s a very kind of common thing that people would have experienced, but now kind of were able to bond together and kind of say, this is the idea. We gathered our information, from Europe and, on the different studies that were done. As feminists, we kind of said, this is an issue that you need to take seriously because abortion rights are so important, but equal and equity, in access to information to, because some people are living with parents that, wouldn’t let them have a child, so they’d get them an abortion. There’s so many things to consider there when you take disability and reproductive health care. And, so many people would kind of would push for the sterilization and would withhold the information on abortions because they didn’t want disabled people to know about it. At the end of the day, the maternal, mortality rate, I think it was 60%. When you kind of looked at it through a disability lens. At the end of the day, when you don’t take disability into the equation, like people will die. It is incredibly important that people have all day have all the information when it comes to, disability and reproductive healthcare. I think it’s a really important issue. It was kind of the catalyst, or it was the catalyst that moved you and another group of young women to create disabled women of Ireland. Yeah, exactly. It was born during that movement of repealing the eighth amendment. We kind of decided look where a group of young ones that, care about disability rights issues through a feminist lens. We didn’t have that in Ireland at all. Most of the voices that we kind heard it was men. I think when Disabled Women Ireland, we had a few people that were like, Oh, why women specifically? And were conscious that we’re for everyone. Even though we are disabled women, we are inclusive of trans and non-binary people, but we wanted somewhere where we could kind of look at our specific issues and kind of look at reproductive healthcare, look, LGBT issues, even stuff like conservation or ship, like I’m not part of disabled women Ireland anymore. When I was there, it was about feminism and it was about, it was a family. We wanted to create a community on a family where we build each other up and we elevate each other. They’re running a really great campaign. Now at the moment called “Disability Isn’t a Dirty Word.” It’s kind of pushing back against the notion that there’s a whole lot of ways to say disability. People say differently abled, special needs, all those different things when really they can just say disabled, but they’re afraid to say disabled because of the negative connotations associated with the word. Really what they’re doing at the moment, I think is incredible on, I think, they should be applauded for all the really hard work that they’re doing. Yeah. I love that campaign disability. Isn’t a dirty word. I, I’m curious to know given how Catholic Ireland is and how much… I love Ireland, by the way. I, my last name is Kirwan. My family is historically from Galway. I visited about, gosh, must’ve been seven years ago and I just fell in love and they had Kirwan Lane. And so that was fun. Anyway, as it stands in Ireland with the Catholic church, having so much control and reach into the political landscape of the country, what was the reaction, the country’s reaction to this group of women, young women coming forward with disabled women of Ireland and bringing these issues to the forefront. Disabled women Ireland, I think came after the referendum. People were still very, there were so very raw, there was a lot of, in a way, there was a lot of trauma around activism and people were so exhausted after the repeal referendum and, we’d went through so much, like, it was a lot of abuse kind of online, saying that we never would have been born if it weren’t for the eighth amendment. And, if abortion had been legal, we would have been aborted and all of these things. We had to go through a lot, but people have been overwhelmingly nice when it comes to disabled woman, I’m done, they were overwhelmingly supportive, but we do kind of get the odd one where it’s like, Oh, I don’t see myself as disabled. I meant differently abled and you shouldn’t use those words. So, there’s still a little stigma around disability and disabled women’s issues. Like I think a lot of people are Oh, why is it just disabled women? And, we had disabled men kind of coming in and saying, Oh, what about men? And I think that’s a very common thing in all the feminist circles. They’ll want to talk about an issue all of a sudden men will come along and think that their opinion is valid when it isn’t. Nobody asked, but I think it was really important that we made a name for ourselves and we kind of, we staked our claim that weren’t going away after abortion rights. There were so many different issues that were disabled issues, and disabled women’s issues. I think it was important…that traditionally able-bodied feminists, we kind of said, look, we’re here as well on you need our help. Not that we need your help. You need ours. Online, I see a lot of articles about just the divide that the feminist movement hasn’t included women with disabilities. Can you explain that a little bit more? How has that worked historically that disabled women have not been included in women’s rights movements? Like I think there’s naturally this, idea with feminism that, because one person, is fighting for one issue, nobody else is allowed in and there’s this kind of misconception. And, I think the articles don’t really help that, one group is against another group, like disabled women can’t, support like trans women, like we’re all fighting for this kind of piece of the feminist pie really. But, in terms of like feminism and disability and kind of what I noticed is that it was little things like having a venue for traditionally kind of able-bodied feminist organizations were having events inaccessible areas in accessible buildings, or they wouldn’t have an interpreter and some would be great and they’d be like, look, we couldn’t get one. We couldn’t get an interpreter in time, or this is the only space we had, which was fine until it became a regular thing. And, it was clear that it, there was hostility nearly. We had some issues or I had some issues I should say, with people that were kind of, they were like, Oh, we have enough to be doing without worrying about access, but I think it has improved, since, they became aware of the issues. And, they kind of realized that weren’t going to stop irritating them and annoying them until they became inclusive, that it kind of, it got better because at the end of the day, you can get anywhere by just being stubborn. I think you can really make a difference by just refusing to, I suppose, bow to able-bodied people. My life got a whole lot easier once I stopped trying to make people comfortable because I just had no interest in it anymore. You know, it’s my fight too. And, I think that once people kind of realized that I wasn’t going anywhere, they made the access ability needs because it wasn’t worth the headache ha of listening to me if they didn’t. Laughing. Right? Yeah, I totally understand that. It’s really interesting that you would talk about the accessibility point, because again, I go back to my research because, I just love research and data. I was reading this article titled inclusion of disabled people in the LGBTQ plus community is about more than accessibility. The writer Yolanda Vargas says accessibility at major queer events, like pride is extremely important to disabled LGBT2SQAIP people, and many of us are willing to provide guidance to make it happen. However disabled people can offer more to the queer community than just insight on how to create accessible spaces. Unfortunately, it often seems like the community at large doesn’t want anything else from us, and that we can only exist in queer spaces. If we agree to provide free labor and focus only on addressing questions and concerns about disability from our non-disabled queer and gender queer siblings, this connects to exactly what you were saying. And, you’re very active in promoting the greater inclusion in LGBTQ plus spaces for disabled people. So, can you tie that back into the feminism and just share with us what your experience has been with this community as well? Obviously, I am a young, disabled, bisexual woman. The LGBTQ plus community is my community, but particularly in an Ireland where there aren’t a lot of LGBTQ spaces, people will call it, new that it’s a new thing, but, gay people have always existed and by extension disabled gay people have always existed. You just haven’t seen us because we haven’t been able to get into the door. There are currently no fully accessible LGBT spaces in Dublin where I’d kind of do most of socializing. The only, sober LGBTQ space is upstairs it’s up steps. So, it was really important to me, that as a young gay woman, that, I have that community because the LGBTQ plus group as a whole is a community and is a family and, I really, I felt it was important that disabled people should have access to that and they should have access to that community. So, it was really important that any kind of activism I date, it was really about making sure that you, disabled people weren’t excluded because being young and gay in a traditionally Catholic country, you feel like you’re by yourself. And, you feel like nobody can understand because you have the layer of being gay and then also the added layer of disability. So, I think that for me was kind of the main reason that I, I decided to take up that fight, but, it hasn’t been unreceptive to say like, nothing has changed. But, people have been willing to learn. So I think that’s good. Yeah. You were just talking about your experience in Ireland, and I know that you participated in the Ireland Washington program. In 2019, you actually worked out here in Congress, right? In DC? Yeah. The Washington Ireland program, I actually, I worked for a firm, a public affairs company, in DC. What was, how was your experience different from the experience that you had in Ireland as compared to the experience that you had in DC as a young, disabled gay woman? It was an absolute world apart. It was so different. Everything like it, wasn’t perfect. Like I could, get the Metro without having to book two days before, and I didn’t have to tell anyone, when I get on the bus or when I get off the bus, like I was just able to hop on the Metro and go on the parts that everything were so accessible on. Everything had a curb drop on my workplace was really great. Like they let me work from home one day a week, so I could rest even going out. Like there were places I could go out and socialize with my friends, whereas we would have had to plan and really researched the place before went in Ireland. We didn’t have to do that in America because it was accessible. Like I marched in pride, in DC. It was my first pride and it was the 50th anniversary Stonewall as well. All those things kind of come in together. I never had to worry about the route or whether it was accessible because it just was like, they just call it. That was never a question of whether it be accessible or not. Because of course it would be like, why wouldn’t it be? Because they were included like disabled people were included in everything. So it was miles different. And has that changed your work your activism work in Ireland that experience? Yeah, big time because I’ve kind of, I’ve seen what’s possible and I’ve seen what you can do if he, if you have a government that will listen, if you have legislation that works and you have community that even if there’s problems that they will pull together, make sure that you’re there because you’re a part of the community and they want you there. Whereas with Ireland, it can kind of be a case, obviously easier to not have you there. Our legislation doesn’t really work like we have this thing in Ireland where it’s protected structures. It looks at historical buildings and it was made to kind of help secure the history and make sure that we didn’t forget the history, but it also created a world of issues for accessibility. Like you can’t, renovate a protected structure. So, historical buildings and that kind of thing, you can put a ramp in and you can put a lift in and they’re inaccessible. Disabled people have just have to deal with it. Even, like some of our music venues are in historical buildings and protected structures under just off limits because it was like, well, we’re protected. Therefore we don’t need to do anything about it. Like, I, I understand what it was there for initially. Like, I understand why it was created in the first place, but what was created flawed. It’s very clear that disabled people weren’t part of the process because I think retrofitting something is more expensive in the long run for, you got your money back in spades by including people. Well, that’s what I was just going to say. I mean, everyone has the right to be able to access public spaces. And I, I think it will be interesting when people listen to this in the United States, because I think that for a lot of us who are activists and advocates, excuse me, in this space, feel like we haven’t gone far enough here. Right? We have the ADA, but it’s, hasn’t been fully funded. It hasn’t been fully implemented. We haven’t looked at it in years. It needs a refresh. It needs a rebrand, but we have to remember too, that we are at a different point than where other countries are at. And so, it’s good for us to know how we can support uplift each other’s work, because if we’re all together in this and we have a larger voice, we can make a larger impact and we can make a stronger movement worldwide, globally, as opposed to just in each country, if we can uplift each other’s work, I believe. Exactly like at the end, like, look at us like this is a conversation between Ireland and the U S. Just two people having a conversation, it’s making a difference, no matter how small. I think when people talk about change-making, they think too big, they think that they have to make a massive impact to, make a difference. Every single person, every single movement starts with one person. Like all it takes is one person, doing tiny things. That person can talk to another person and then they can talk to another person. If everyone kind of, done tiny things, they turn into big things. Exactly. I literally think I just said that on another episode, I can’t remember anymore. Sometimes they run together, but I was saying that sometimes we stare so longingly at this like huge impact or this big change we want to make that we forget to focus on the smaller individual one-on-one personal connections that we make that then, like you said, go from one person to another person and that spreads. I think that what has really been interesting for me throughout this process of this podcast is that I’ve been able to learn so much more about disability in other countries, Poland. They were, it was in the news that Poland banned all abortions. I immediately went back to our conversation around reproductive rights, and my mind immediately went to, the disabled population in Poland and how that was going to affect them. It starts to change our thinking. We start to understand and look at disability on a more global level, as opposed to just within our own communities, which I think is very cool when we start to have that shift in mindset. Yeah, absolutely. It’s really about international solidarity and, it’s kind of figuring out what I can do in Ireland to kind of help, someone in Poland, like people feminism, would kind of look at it and be like, Oh, I hadn’t considered disabled people, because they haven’t had to consider disabled people to the more were kind of present in these conversations. The more people are kind of becoming aware, kind of realizing that, everything is a disabled rights issue. Like whether it be housing, whether it be transport, whether it be reproductive health, like everything that people fight for affects disabled people. So, really disabled people should be involved in any and every conversation when it comes to making, because it will affect them. Whether you think that a will or not. I love how you stated that. I didn’t even really. Yes, I think about that, but not in those specific words, but yeah, everything affects disability, all of the policies. Yeah. Like everything is a disabled rights issue. Like people, when I’m talking about equal access to nightclubs and people say or like sexual health people say, well, how does that disabled rights issue? I can link it back to every time I can link it back to disabled, to disability and disabled issues. People are so surprised, but, disabled people exist in society and they live, they work, they travel, they have sex, they date, they dance, it’s all like disability is everywhere. We’re people. Who want access to things. Exactly. And I think people forget that. Yeah, they do. I think they do. Oh, I want to go back to one thing that you said earlier, not everyone who needs an abortion is a woman. I want you to explain to our listeners what you mean by that, because I think that’s a really important point for us to make. When we’re talking about reproductive healthcare, there’s always a, an instinct in us to kind of say women, it’s only disabled women can get pregnant. That really jeopardizes trans people, that can get pregnant or non-binary people that can get pregnant, that don’t identify as she, her, there could be someone who identifies as a he him, they can still get pregnant. Like they, them, they can get pregnant, it’s not a singular women’s issue. Like it is a people’s issue and it’s a healthcare issue at large. I appreciate you explaining that because I think it’s really important for all of us to understand that it is a people’s issue. It is a human issue, as you were talking about, uplifting and supporting the work globally, internationally, how can we like me and our listeners? How can we support and uplift the work you’re doing? And then on a greater level, how can we support and uplift the work that disability advocates and activists are doing internationally to build that community, that international disability community. Social media is really invaluable towards this like, disabled women, Ireland and everything they were born on social media, all kind of the work that they do is social media. In terms of kind of uplift and people at large, I’d say, make space for marginalized people. So, people think that, disability, it’s very white when it comes to, disability and activism. People have a habit to prioritize that the people that look like them on, I would say completely disregard that, uplift disabled people of color, uplift disabled trans people and really just give your platform to them if you can, because at the end of the day, I can talk about myself, but I can’t begin to understand the barriers that exist for disabled people of color. I’ll never understand that, the difference in experience and it’s not my place to speak over them on their experience. I think really just diversifying, I think is the thing that you need to focus on, like to disabled rights, need to diversify because if we don’t, then we’re going to miss a perspective on, it could be a very valuable perspective. So, I think that’s something that’s very important. I think that’ something that’s very important. Yeah. I have to tell you, I you’re, you speak with such eloquence and strengthen your voice with all of this work that you’re doing. It just is like, this is a human rights issue and your messaging is so spot on with that. I just really appreciate everything that you have had to say. What’s the most important thing for our listeners to take away from today’s conversation. It’s that everything is a disabled rights issue, whether you think it is, or it isn’t, like transports sexuality, reproductive health, housing, everything comes back to disabled people. Whether, you’re organizing an event or a workshop or a seminar or anything that it’s important to include disabled voices, but pay them as well. Disabled people shouldn’t have to work for free, particularly when so many of them are living below the poverty line and many. And many of them are in forced poverty. Exactly. I think the really important thing is to consult the table people, but respect them enough to pay them for their time and their energy, because they are invaluable sources of information. It’s so Interesting that you say that because I remember when I first started this podcast and one of the potential guests that I was reaching out to asked me if I had a sponsor and I said, no, I’m just, I said, it’s a labor of love. I was laughing, but she didn’t think it was as funny. She said, I’m so tired of hearing people with disabilities. Describe their projects as labors of love. There, there comes a point where the projects that disabled people are working on need to be uplifted financially as well to have that lived experience. Also that professional background, that education does need to come with some payment. I do think, but in this space, a lot of people with disabilities are paid below minimum wage, which is legal here. I don’t know about an Ireland, or not paid at all. Yeah. Like obviously it’s very hard. In the first place for disabled people to get jobs, the disabled employment rate is 4% here. Yeah. Our government was like, Oh, let’s, do a really good, let’s be really ambitious on in the program for government that was formed. They wanted to aim for a 6% employment. Wow. Oh, that’s a big jump. Yeah. They are incredibly ridiculous. Actually listening to, it must have been a show on NPR the other day. They were talking about how many women have left the workforce just in the last two months. I think it was, I, I’m not going to say the numbers, but really high numbers of how COVID-19 has impacted women. When you think about that from a disability perspective, how many disabled women have been impacted. Even then you go further and you look at payments, relief packages and our SSI/SSDI programs here aren’t offering any additional support for people. I mean, there’s just more people are going into poverty at this point. That means that more people are going into forced poverty. I think that we, that people forget to look at, they kind of look at the majority as that baseline. They don’t look at the outliers per se, but what they don’t realize is that the disability community is not an outlier. It’s actually a huge community. If we go back to kind of what you said about people who identify or don’t identify as a disability, that’s also important when we look at who comprises the disability community. There’s always this conversation around, disability or person with disability. Normally I’m it’s very much like pronouns and it’s very like you’re ground. You’re comfortable enough to kind of self-identify as whatever you want for at the same time. Don’t, don’t tell me how I should be identifying. Like, I, I use disabled, because it’s the label that kind of fits me. And, I’ve had lots of arguments with people are like, Oh, you should call yourself this. I think when we start having those conversations and kind of, really builds a respect between really it’s about respect, but holding each other accountable as well. Yes. It’s about, for me, I believe it’s about conversations like these so that we can be open and have I, well, I’m going to go back to when you and I had the first discussion, and I think the title for this was Amplifying Voices of Women with Disabilities. After you and I had spoken, you were very clear that we wanted it to be amplifying voices of disabled women to really have that identifier right. Of disabled, a disabled woman. In episode one, we talk about, am I disabled enough? And I’m, I stay? I say, I’m still at that point of I’m a woman with a disability. Last night I was actually talking to my husband and were talking about, when you answer questions on a job application or you answer something about a disability, it depends on if you’re, are you going by the medical? Are you going by identity model? Or are you going by a social model? It depends. All of those things come into play when you’re answering a question like that. The point I was trying to make is that having an open conversation where you and I can share that and talk about it and be like, Oh yeah, I see why it needs to be amplifying voices of disabled women. And that understanding comes through conversations. I’m very calm and relaxed when it comes to, am I disabled enough? Like obviously I use a wheelchair, so I’m very invisibly disabled, but I always say to people that if they feel, in any way, it’s like, Oh, I have this issue, but I don’t know if I’m disabled, if comfortable with using the label, then go for it. Like, I, I’ve never kind of been a fan of policing, whether, someone is disabled or isn’t disabled to know, like if they say they are then, they are, and that’s not afraid discussion, like nobody’s identity. I feel she’ll be debated. Like, if you feel like you’re disabled, then you’re disabled and that’s it. Yes, no one’s identity should be up for discussion. How much better can you say it? That’s what I’m talking about. Alana. Is there anything else you’d like to share with me and with our listeners before we wrap up today’s conversation? No, just thank you so much for having me. If anyone is kind of interested in me as a person, you can find me on Twitter @AlannahEMurray. That’s kind of where I chat about the kind of activism and, stuff that I’m up to or anything like that. If you want to keep up with me, I’m not very entertaining at the moment. I’m, I’m currently, in rehab after a stroke, but when I do eventually get back out there, I will be doing bits and pieces, so you can follow me there. Well, you’re almost back out there. I just want to say thank you for being here today for having the conversation with me. I know you’re still in the hospital, so your dedication and commitment. Even when I had to reschedule, I just I’m grateful for your time and your insights. Like I said, just the strength of your voice and your activism. And I appreciate all the work that you’re doing in this space for us. Thank you very much. Thank you. And once again to our listeners – thank you for spending your time with us and joining the Incluse This! conversation and movement. Incluse This! is brought to you by Eye Level Communications, LLC, a California-based woman- and disability-owned small business committed to having critical conversations – at eye level – that are necessary to move disability to the forefront of the greater diversity conversation. If you’d like to learn more about the work we’re doing, please visit the website at: www.eyelevel.works You can also email me directly at sarah@eyelevel.works with podcast episode ideas, as well as comments and questions. Remember to put your disability lens on when you look at the world, and tune-in next week for another stimulating conversation on Incluse This! – the podcast that’s really a movement. Take care and be well.

Episode 6: Is COVID-19 a Disability? Wednesday, February 17, 2021 GUEST: Marjorie Roberts, DBA | Certified Life Coach and Speaker https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/Incluse_This_S1_E6_Is_COVID-19_a_Disability_Dr_Marjorie_Roberts.mp3 In this episode, Dr. Marjorie Roberts shares her personal insights and experiences as a COVID-19 Long Hauler. And we discuss why she’s pushing so hard for COVID-19 to be recognized as a disability. With her life turned upside down in a matter of hours, she’s spent the last 12-months advocating for herself and others in the COVID-19 Community. She says, “We’re on a mission to be heard. And COVID-19 is a disability. This is the bottom line.” QUICK LINKS As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability. OUR GUEST: Marjorie Roberts, DBA Greetings and thanks for taking the time to find out a bit more about me. 1st and foremost I am a Covid-19 Long-hauler/Survivor/Advocate. My name is Dr. Marjorie Roberts. My husband and I recently relocated to Johns Creek, Georgia after calling Philadelphia, PA home for over 30 years. I gave birth to my very best friend Leanne who decided to relocate shortly after. I have a Doctorate in Business. Interacting with people throughout the years, I have come to understand something very fundamental, regardless of backgrounds or current situations people are looking to survive and thrive as human beings. With a strong business background in both the retail and restaurant industries, I have always focused upon an individual’s personal growth and happiness. My skills of providing structured questions to help organize an individual’s thoughts and excellent critical thinking skills for helping others set tangible objectives, have been thrust to the forefront in recent years and led to a career change to my becoming a Certified Life Coach. As a life coach contracting Covid-19 has meant personally I have to face some hard truths about my total existence and how I must now take the form of a realistic assessment of my life and how I can help others as we recover from Covid-19. As an active member of several grassroots group Covid 19 Survivor groups, my approach is life coaching is not a do this and that will happen concept for me; it is a reaching deep, planning and allowing myself and others to come through and out of this experience whole and complete as possible. TRANSCRIPT Sarah Kirwan: Hi, and welcome to Incluse This! I’m your host Sarah Kirwan, and this is a movement for disability equity. Today we’re talking with Dr. Marjorie Roberts, and we’re talking about COVID-19 and disability.   Sarah Kirwan: Greetings. Thanks for taking the time to find out a bit more about me first and foremost, I am a COVID-19 long holler survivor and advocate. My name is Dr. Marjorie Roberts, my husband and I recently relocated to Johns Creek Georgia after calling Philadelphia, Pennsylvania home for over 30 years, I gave birth to my very best friend, Leanne, who decided to relocate shortly after I have a doctorate in business and interacting with people throughout the years. I have come to understand something very fundamental that regardless of backgrounds or current situations, people are looking to survive and thrive as human beings with a strong business background in both the retail and restaurant industries, I have always focused upon an individual’s personal growth and happiness, my skills of providing structured questions to help organize an individual’s thoughts and excellent, critical thinking skills for helping others. Set tangible objectives have been thrust to the forefront in recent years and led to a career change to my becoming a certified life coach.   Sarah Kirwan: As a life coach contracting COVID-19 has meant personally, I have to face some hard truths about my total existence and how I must now take the form of a realistic assessment of my life and how I can help others. As we recover from COVID-19 as an activist member of several grassroots COVID-19 survivor groups. My approach is that life coaching is not a do this, and that will happen concept. It is a reaching deep planning and allowing myself and others to come through and out of this experience whole and complete as possible. Yeah, let’s just get started. I just want to say Marjorie. Hello and welcome to include this. I’m thrilled. You’re here. I’m really passionate about this conversation that we’re going to have about the relationship between the COVID-19 community and the disability community, and really, how can we embrace one another and support one another? And so I’m really happy that you’re on today because it’s such a curious question for me.   Sarah Kirwan: I was just doing more research this morning and came across an article that says at this point, the COVID-19 has not been designated as a disability under law. Before we dive into all of that, I just want you to share with us your story.   Dr. Marjorie Roberts I’m quickly approaching my 11th month of COVID-19. My first symptom was March the 26th. As you can see, March the 26 is just a few weeks away. From the 26 on to this very day, my life has forever changed. I don’t have the stamina that I used to have. I’m not able to do a lot of things that I used to do, and the way that I look at it now, I always say, mentally, I’m in a really good place physically I have to catch up. So my mind is sharp. I’m so thankful that my mind got saved in this thing. COVID-19 is really dark and scary. If you don’t do everything you can to protect your mind, it’ll go. If your mind goes, then everything else is gonna follow. That’s vice versa with the healing process. Now that I got my mind in the right place, I’m just doing everything that my awesome team of doctors are telling me to do.   Dr. Marjorie Roberts For COVID-19 again I say, it’s definitely not a hoax. It changed my life in one day that morning I woke up on March 26. I was fine. I was functioning fine. I was, I was living my life like it was golden. By the time the sun went down little did I know that almost 11 months later, I would still be dealing with the after effects of the storm of COVID-19.   Sarah Kirwan Yeah, that’s incredible. What are some of your day to day symptoms? Can you go back to that day? I mean, I feel like it’s been March for a year. To be honest, it’s like March never ended.   Dr. Marjorie Roberts Yeah. Like Groundhog day. Definitely.   Sarah Kirwan Yes, but you’ve been doing much more Marjorie since you were first diagnosed with COVID and you had an experience before you were diagnosed. Like, can you share with us that experience with providers that you had?   Dr. Marjorie Roberts Yeah, that was again, I did not see that coming, but COVID-19 when I first contracted COVID-19 early back in March, it was new. I get to the emergency room, it was like something out of a horror movie. Everybody was PPE’d up, everybody was all messed up and, they had a special section for people like myself with these symptoms that I had been going through, which was diarrhea, really bad nightmares, loss of balance, no appetite, spinning dizziness, nothing down, couldn’t function, and all of that going on at one time, it was a storm growing in my body. I get in the emergency room the first time, tell them everything right away. They’re like, Oh, okay, well, we’re going to do what we do when you come to the emergency, they check you for check your heart, checking lungs and everything like that. And I was just so sick.   Dr. Marjorie Roberts I was dehydrated. I was dry. I was totally dry. They, they caught that right away and they hooked me up to the app and everything. They were just doing a series of tests so fine. They come in and he’s like, well, you’re going to have to take COVID-19 tests. Now, mind you, this is early April and the only thing I knew about this COVID test is what I saw on television or what I seen on the internet or how it looks like this extra-long Q-tip that they were just sticking up the nose. To make a long story short, I went through that process. They done that. They just did one nostril. Back then, I didn’t know any better. Did the one, the results came back and they told me, Oh, well you have upper respiratory infection. You don’t have, COVID go home drink plenty of water, stay hydrated, take Tylenol if need be. You’ll be just fine.   Dr. Marjorie Roberts I left the hospital that night, thinking like, okay, this is, I can deal with this. That was not true. From that point on, from April 4th I continued to get even sicker, I just began to just explain that COVID-19 was just revving in my body just totally taking over. I couldn’t walk by myself. I couldn’t, my husband had to help me from point A to point B. I had no energy. I felt like somebody had just took a vacuum cleaner and sucked the life out of me. The diarrhea was going crazy. The hallucinations. The nightmares. It was just a lot going on. So May 28th I get sick. I get real sick. My husband was like you got to get out. They take that to the emergency room for the second time. The second time was worse than the first time, because they were like, look, you were just here, April 4th.   Dr. Marjorie Roberts We told you nothing’s wrong with you, you need to contact your primary physician. Stay hydrated. We’re not going to test you for COVID now because we told you did have it. And I’m like please help me. Help me. I’m crying, Help me. They give me more fluids. Send me home. Tell me the contract. You know, get my primary physician. Now mind you back then in early COVID the doctors are pretty much shut down. You couldn’t go into the office. It was a wait in line for them to call you back. I finally got who I thought was going to be my saving grace. I got in touch with my primary physician was able to get a phone call with her, started to tell her what was going on with me. I’m thinking, okay, the calvary has arrived because she had been my primary physician for five years. I’m going through and telling her what’s wrong and I’m crying.   Dr. Marjorie Roberts I’m hysterical. I’m telling her what’s wrong. She comes back on the other end of the phone. She says to me, it sounds like it’s stress. You don’t have COVID because you’re not sick enough. You don’t sound sick enough. You’re not sick enough if you had COVID, you would be in a hospital, hooked up to a ventilator. I’m like, but that’s all that I I’m buttoned up. But, but no, no. I don’t feel good. I can’t sleep. I can’t eat. I can’t breathe. You can hear me panting like a dog. She says to me, well, what’s wrong with you? Marjorie is you’ve been watching too much television. Oh my gosh. Yes. You are mimicking what you see in on television. If you want to feel better, I suggest lifetime movies and work some puzzles. By that point in the conversation, I just leaned over in the chair I was doing because the one person that I thought was going to help me, this woman that had been in my life for five years, that knew me. And the one time that I need her, she totally gaslights me.   Dr. Marjorie Roberts She was like, well, I can prescribe something to make you feel better. I’m like, I’m telling you, this is not stress. This is not stress. I know what stress feels like. I was a single parent. This is not stress. I went to school for nine straight years. This is not stressed. What’s going on. No help from her, no help. I was like, okay, I don’t know what to do at this point. So I’m talking to my daughter. My daughter is my very best friend in the world. I’m having the conversations with her about my death because that’s how sick I was. And I didn’t know. And this is my only child, my only 40 year old daughter that we best friend. I’m having this conversation with her about how to go on without me,   Sarah Kirwan It’s different when you’re planning and you’re aging and you understand that’s part of the natural progression of life, but to all of a sudden be having those conversations when those are not expected to happen, is incredible. What you just shared about your provider experience is to me, that is a very similar story that we hear often from people with disabilities. I was on a call this morning, a conference, about disability statistics. They were sharing about how many people feel with disabilities, feel unseen and unheard by their provider. Do you think that you’d be in a different place now today, had your providers actually provided you with the healthcare that you needed?   Dr. Marjorie Roberts Yes. Most definitely. There were nodules at that time that I had all that going on with my first position, there were things going on top of my lungs that I had no idea about. There were nodules growing and forming in my lungs from the COVID-19. There was spots on my liver from the COVID-19. I first went to the emergency room or April 4th. It wasn’t until around June 8th that I was able to get that second provider to believe me and help me. It was after that I, when she went through all of those three different visits that I went to the emergency room and did her own set of blood work. She was like, I, I can tell COVID-19 is in your body. COVID-19 has done some damage because my numbers were all over the place from the blood work. Everything was totally out of whack.   Dr. Marjorie Roberts What she saw from three different times that I had been to the emergency room, but all those other visits that she, I had to see a lung specialist right away, because she knew that something was going on in my body. Once I got to the notes. That’s when she was like, well, those nodules in your lungs. If my primary doctor back in April had not gas lit me and tried her best to get me some help, maybe that would have got caught earlier in June, because the time I got there, the nodules was in. They’re still there. They’re still there. They’re monitoring those nodules. They’re monitoring those spots on my liver. They did do a biopsy to make sure that they are not cancerous, but it’s still there. Knowing that they’re still there, it’s like, why didn’t you believe me back in April when I told you something was wrong with me and being my primary physician, like I said, she knew I wasn’t the person that ran to her for everything.   Dr. Marjorie Roberts It was my regular physicals, my mammograms, my OB GYN appointments, that thing. The only issue that I had going into COVID was high blood pressure, but that was just one pill that I was taking every day. Nothing else. Now fast forward to now present blood pressure is in such good control by my new doctor. I have a, I, I have a problem with the way that I was treated, but it also made me fight. It made be fight. It made, it made me stronger mentally because I knew what was happening to me was happening to a lot of other people that didn’t have the means, that could not speak for themselves. Also in the middle of it I lost one of my very best friends I ever had in my life to COVID-19. I knew I had to fight. I had to fight for people who have no voice.   Dr. Marjorie Roberts I have to fight for people who are hooked up to ventilators. I have to fight for people who their bodies would never be the same again. So this is where we are now. And, to see COVID-19 as being a disability is what I’m fighting for the world to see. We can’t go back to the jobs. First of all, it completely strips away your stamina, it takes away your energy level. I can’t even walk less than a block without getting winded. I still, sometimes, I feel myself getting headaches, I get a little nervous. I have to do my little breathing exercise because I don’t know is COVID coming back. I don’t know. I don’t know is COVID gonna rear its ugly head.   Sarah Kirwan Does anyone know, like, is, are those symptoms going to go away that you have now? Like for my multiple sclerosis, it’s basically the damage that’s done before I started on the medication, right? The disease modifying therapy, the damage that’s done up to that point is already done. Like you can’t go back really and reverse that you’ll have some self-healing, but for the most part, that damage is going to be there. You start from that kind of baseline, I guess, to see if there’s new damage moving forward, then it becomes an issue. Are they looking at, are they looking at that at all?   Dr. Marjorie Roberts In some cases they are because there are now a lot of long hauler, lot of clinics that are, trying to address this issue. Now, since we have, a new president in place, Kobe has been pushed to the forefront because before COVID was getting, were getting mocked, were getting downplayed with the, we get laughed at which we’re still getting a lot of those things. But now it’s real. It’s real to some people. Well, I’ll put it that way. It’s real to some people because you have everybody across the board has been affected corporate America, restaurant, everybody, all entire workforce has been challenged by COVID-19. Now, we would get pushed to the back of the bus and nobody was listening. Now we get pushed forward. Now the, now they’re beginning to listen because it’s affecting them. It’s affecting their families. It’s affecting members of it’s affecting the white house where before, when it was running rampant through the Rose garden, it was a haha.   Dr. Marjorie Roberts Now those people are now becoming they’re experiencing what we’re experiencing. COVID-19 is not going away. It doesn’t, it doesn’t just disappear out of your body. It’s still there.   Sarah Kirwan Yes. I, I have so much to say, as you were talking, there were so many thoughts that flashed into my head from the past year, the different things that have been shared, the misinformation that we’ve had, it’s just been just kind of the perfect storm for all of this. You are fighting for COVID-19 to be seen as a disability, right? To be federally stated that it’s recognized by law, that it is a disability. Let’s go back to the long COVID. I was reading an article that was published by cnn.com titled long COVID still puzzles doctors, but treatment is possible. It also States that the severity of symptoms upon contracting the virus doesn’t denote who will experience long COVID. Some of the symptoms of long COVID are severe fatigue, headaches, and brain fog. You talk about incorporating or having the government recognized COVID-19 as a disability, have you seen any work in that space? Have you seen anyone that’s talking about that from a leadership,   Dr. Marjorie Roberts From a leadership standpoint, like Mount Sinai in New York was like one of the first hospitals to set up their COVID-19 cleaning. They set the precedents where everybody, if Mount Sinai saw a need to take this thing further, then that’s the red flags for me, that is the red flag for me, because that is a world renowned hospital. Like I said, they were one of the first to say, okay, we got it. We gotta do something about this because we are getting people that are not getting better. They are not getting better. And COVID-19 destroys your organs. It destroys your heart. It destroys distortion, never extrusion lungs. It just shuts everything down. If everything is shutting down, some people are having to go on dialysis because of COVID-19. Some people need liver transplants because of COVID-19. Once you face, you come up with something like that and you’re removed from the workforce.   Dr. Marjorie Roberts Somebody is going to have to help us. So we are being heard. We just got to continue to scream out. That’s why I encourage everybody that I talk to with COVID-19. I tell them to not suffer in silence, speak up, join these groups, get out there, be heard your story. Don’t treat. COVID-19 like a dirty little family secret.   Sarah Kirwan I’m so excited you just said that. That’s my favorite line from one, we talked the first time and I feel like for people with disabilities, invisible or non-apparent, it is a dirty little secret, oftentimes that you don’t share with people because you have that choice to either identify or not identify with the disability community, right in your group COVID survivors for change. That’s actually how I, we got connected when I’m so thankful for Chris, he has been, and I’ll just say for our listeners, it’s Chris coacher. He is the executive director of COVID survivors for change. What a wonderful man, what a wonderful human being. I reached out to him months ago with this idea, because I started thinking about all of these similarities that there are between COVID long haulers and people like me with neurological diseases and disorders. There’s all these shared experiences, which got me to thinking, well, what’s going to happen.   Sarah Kirwan When people go back to work, what’s going to happen. When there are reasonable accommodations that will be needed. Are, is this going to be covered under federal law? As part of the ADA, will these people COVID long haulers, will they be able to get reasonable accommodations, things like that. Has he talked to the group or talked with your group about any policies that you’re looking into or the group is looking into regarding COVID-19 as a disability?   Dr. Marjorie Roberts Chris is on the front line. I mean, he is just, there are no words to describe the level of love that I feel for this man. He cares, he believes us and he is sounding the alarm. He is using every Avenue and every door to get us hurt. He is doing everything. The groups and the way that it’s set up, everything that you eat to function and get through this thing that this group has provided. They, they, we meet every Thursday night. We have a zoom call is open to, they have therapists on every call. There is a minister on every call, everything. They, they go through everything. They try to have training classes to teach you how to talk to media. They have training classes to train you on just the proper way to use Twitter and to use all of those media outlets that you can to be heard.   Sarah Kirwan That’s fantastic.   Dr. Marjorie Roberts Yes, he is. He is. And we are let me say like a couple of months ago we had, it’s just so many things that Chris is doing and he is so quiet and so humble. Sometimes he’ll just have pop-ups needed. He’ll just say, you guys feel like talking, just come on and let’s talk about anything and everything. This, there is nothing off limits within this group. Everything, every their resources, they have resources and there are people to help you in whatever you may need help in. When I first saw that group, I was like, Oh, I, I want to be a part of that. I want to be a part of that because all the groups that align myself with their own admission and they are serious about getting heard, they’re serious about getting us help. And it’s just phenomenal.   Dr. Marjorie Roberts I know everything that this group stands for. Like I say, Chris is just he’s, is truly a gift to us. He is a gift to us because he gets us. He understands us and surrounds us with people like himself to understand us. They don’t judge, they don’t church. That group is growing and we need, and we cry together. We laugh together. We pray together. You can scream. You can shout if you want to come on a zoom call. You’re so tired that you just wouldn’t sit there and sleep, but listen, because you need to compensate because that’s, what’s going on. Not the people at being left alone, people that are being married for 30 and 40 and 50 years, their spouses are dying and they’re left alone. This groups, these groups, they give them hope. We come together and we support one another. And I have made friends.   Dr. Marjorie Roberts We have formed bonds with people outside of the groups, because everybody, we all know we are on a mission. We’re on a mission to be heard. And we’re going COVID-19 is the discipline. This is the bottom line. Because like I say, when you’re, if you mentally, if you can’t say you can’t work physically, if you’re in pain or you don’t know what’s going to hurt today, you’re, they hurt this hurt. That hurt. You got a headache. Now your heart is a little out of whack. You know, your blood pressure can drop. Everything is changed for you. They’re going to have to make provisions for this new batch of people. That’s coming in a common with a quickness.   Sarah Kirwan It’s not going away and it’s already come with a quickness, right? I mean, it’s, it has ravaged our country in the world, but I agree with you. I just want to repeat what you said. COVID-19 is a disability. I will be so interested to hear the policy work around that, because that will be about how long does the fatigue last? Is it going to be a short-term disability or long-term disability at this point? It’s hard. How do ? We have no idea? Will it be long-term like something like MS, will it be short term that you have these symptoms? And then, two or three years, they go away or six to nine months, they go away, who knows? So I think there are so many unknown factors, but I, I definitely agree that people who are living with COVID long COVID are disabled. If we look at disability from the general definition of physical or mental impairment that can interfere with your daily activities and recognized by a law.   Sarah Kirwan Well, this obviously interferes your days have changed. You said you could walk a block and then you’re winded. Tell us about the work that you’re doing to support COVID survivors and long hauler.   Dr. Marjorie Roberts I have become an advocate. I do not. I speak up, I have started a life coaching business, geared towards people who have had COVID-19 or people who have not had COVID-19 for half of the fear of COVID 19. That is what I, because I know what it does to me. I know what had done to my life. I know that my life is forever changed, and I know that I have, by grace, I have found a way to fight that mentally I’m in a really good place. What I do, put on my cheerleader outfit and I go for it and I cheer people on. I call people, I engage with people. I talk to, people are read people’s posts are read between the lines. If I don’t like what I see, I reach out to that person and we talk about it. When I’m in these groups, I see people that are hurting people that are really hurting.   Dr. Marjorie Roberts I make sure that I write that name down and I reach out. I try to form a group with them, a group within a group, because COVID-19 is really dark and lonely and it was dark and lonely for me. I was going through the early phases of COVID-19, I was in the house by myself because my husband had to work. Our daughter had to work. I was at home and I had to find a way to function. I had to find a way to bring some sunlight back into my life. I had to find somebody to talk to, I have a therapist. I had that therapist, but I couldn’t cut to talk to her every day. What I did was I started researching. I started looking for people like myself, and I found the groups. I started to find, found a long haul. The Kobe group that was started by Amy Watson, because she was a long hauler.   Dr. Marjorie Roberts For 300 plus days, she had a fever. Over a hundred is a disability. So, I’m in a lot of groups in some of the groups I’m in, like we just bond. We just stick together. I’m in another group called the coronavirus four room curl. This young lady, she listens to our stories. She writes our stories. She talks to us and writes our stories and put some out for the world to see she puts it out there for the world to see, this is what she does. I’m out there 365 scoping, everything that I can, I’m doing everything I can mentally to support people that have gone through what I have going through. And I can’t save everybody. Every day I set out, I said, if I could save one person today, then I sleep good at night. Yes. COVID-19 like I say, I don’t know how they’re going to do it, or where are they going to do it, but they’re gonna do it.   Dr. Marjorie Roberts They’re going to have to do it because somebody has to help with it. It’s no way around it. It’s not going away. The numbers of them are going to continue to rise. Now, no, we have the vaccine on the scene, but you still have people who think COVID-19 is a hoax. You still have people who want to do what they want to do. As long as they want to party and do what they want to do, COVID-19 is going to show up and keep affecting people. That means more people are going to be disabled. More people are not going to be able to go back to work. People that own businesses now have been affected. They can’t work. If they can’t open their business, their employees can’t work.   Sarah Kirwan All of the nonprofits that exist for like cancer, cerebral palsy, spinal cord injury. I mean, multiple sclerosis, all of these different foundations and nonprofits that exist for research and funding and support for individuals who are living with that disease or disability. I wonder if, or I should say when there will be an organization that arises to address this gap in support for this community,   Dr. Marjorie Roberts They are they’re up and coming for a whole, almost the whole duration of COVID-19. Again, it was being treated like a dirty little family secret by the government. It was, it was a hoax. It’s going to go away, just take a Tylenol and you’ll be all right now, there’s people out there, but until the foot got taken off, so even doctor thought he couldn’t even speak freely.   Sarah Kirwan I feel, and again, correct me if I’m wrong. The COVID community has been grieving in silence up until the point where President Biden, was it the night before his inauguration where he had the Memorial?   Dr. Marjorie Roberts Yes, he did. Yes, yes. It brought us all to tears. Very night that very night, Chris called the meeting for all of us to come if we needed to, because he knew that was an emotional day for us. He knew that we needed him. Just like that on clockwork, the email came through. If you guys want to talk, if you come on. We came together and we cry and we celebrate it finally. It was like, Oh my God, thank you. Finally, finally got that. We, yes. That was it. That, that began our night.   Sarah Kirwan Yes, yes, exactly. Yes. For me sitting there for me not having the experience that you’ve gone through, that all of these members of the COVID-19 community of survivors have gone through, for me, it was this release of emotion that I didn’t almost like I could breathe for the first time and start a grieving process. Like something had been taken off of my back. And I just cried for two days. I mean, it really cried for two days that day, the day before the inauguration and the inauguration, because I felt for the community, the COVID- 19 community, I felt like for the first time now you’re heard now you’re seeing now your voices are going to be uplifted.   Dr. Marjorie Roberts Thank you. Thank you. Yes. Thank you. Because it is people like yourself, Sarah, that believe us, we don’t take that for granted and we don’t take it lightly because thank you for believing us, because that means the world to us, because it was so many people who did not believe us and gasoline, us and Marcus said were seeking attention and that were lazy and we didn’t want to work. We would just claim and have this thing. When, when people like you support us and believe us, it gives us hope. It pours into us spirits. It gives it, lets us know that, Hey, they’re not lying. They’re, you know, everybody’s not lying. You know, over 400,000 people have died. That’s that’s not a hoax. That’s not, that’s not a hoax. So, again, I, I thank you for your support. I just want to say to everybody, that’s listening, if you or a family member has contacted, COVID-19, if you have any questions or concerns about COVID-19, please reach out.   Dr. Marjorie Roberts There are groups out there you don’t have to be, had to have COVID to be concerned about. COVID you’re more than welcome to join our groups and, come be educated, come learn, survive. Of course long-haul COVID fighters, the Corona virus for mass with us. That’s a, that’s a movement that’s begun. You don’t have to do anything but post the picture of you wearing a mask, but we are growing in numbers. We are growing, we have members, and it’s just so many. And of course COVID survivors the change. We are going to bring a change to this thing. You can find me on all social media platforms. There’s no question is a stupid question. If I don’t know the answer, then I know to go to people who do, because COVID-19, again, it’s not a hope it’s not going away and I don’t want anybody to suffer in silence.   Dr. Marjorie Roberts Speak up, be heard, again, reach out. There is, there is hope there at the end of the tunnel, we can see it now. We still have a ways to go, but we are not far away from as were.   Sarah Kirwan No, we’re not. I always, well, I told you this, when we first got on the phone, you’re like this ray of sunshine, you’re so positive about, the change and empowered and moving forward. I just love that about you because it’s contagious and any way that I can help support this community. I also belong to the Facebook group. COVID survivors for change, just so I can hear the stories. That’s one thing that we talk about in the disability community. We should be leading that way in uplifting these voices and sharing these experiences and these stories. Really what I hope that this episode accomplishes is that people understand and connect the dots between COVID-19 and disability that people will start to understand. Like you said, given the messaging around the pandemic for the last year, there are a lot of people who don’t believe the data don’t believe the science or the scientists.   Sarah Kirwan We are not those people for the people who do believe the data do believe the scientists they can. They can recognize this as a disability and uplift voices around that. I want to see it embraced the COVID-19 community embraced by the disability community. We have experiences. We have, very similar experiences when you and I spoke. You talked about being winded, just walking around your house or having fatigue that you didn’t want to get out of bed or get off the couch. That’s something that I experienced that my friends with MS and other neurological diseases experience. Instead of seeing where there are those differences, I am truly hopeful that we can see where there are those shared experiences and we can embrace one another and bring our communities together. Right. To understand that. That’s another thing that I’m trying to work on with the podcast. I’m work that I’m doing is to bring a more collaborative spirit into the disability community and understanding that if we align our voices and our messaging and we collaborate with one another, then we will make real change in this country.   Dr. Marjorie Roberts Yes, most definitely.   Sarah Kirwan Yeah. If we continue to fight people and fight one another and oppression Olympics of this disability or disease versus that one, we won’t get anywhere. We’ve been told that by lawmakers repeatedly. So that’s my hope. I’m just really thankful that you will a, I’m thankful for just your energy and spirit and coming on here to have the conversation with me, I believe I think that those three words are so important for us to hear. I have an inner ear disease. That’s very rare that went undiagnosed or misdiagnosed for about nine years. When I finally got to a provider that said, she put her hand on my knee and she said, I believe you. It was also at that same time where I just felt this relief of, Oh my gosh, I’m finally believed when you’re not believed. You’re constantly fighting. You’re already in survival mode with your health mentally and physically.   Sarah Kirwan Now you’ve got to fight for people to even believe what you’re trying to tell them. This was done on such a much larger scale than most of us have experienced.   Dr. Marjorie Roberts There’s a letter that’s going up. We just signed this letter this week. That’s going up, that’s going up to Joe Biden. We send it up. We’d go off for the top gun. So, yes. When I read the matter, I had such a smile on my face. When I went back to the group to share with the group that I had signed the letter, that’s what I said. I signed that letter with a big smile on my face because it’s going to get in the right hands. Because like I say, Christmas, no joke. He’s not going to just, Atlantic with any nonsense or any foolishness. That letter is going to make it’s going to make it. That’s just the first of many, a note, there are gonna be many more to come because we are going to be heard. And I’m just waiting for that day.   Dr. Marjorie Roberts I’m just waiting for that day when President Biden’s people says to Chris’ people have your people call my people. Haha.   Sarah Kirwan I love your excitement. After everything you’ve gone through you are still a ray of sunshine.   Dr. Marjorie Roberts Because it’s going to work Sarah.   Sarah Kirwan I thank you for a seeing the connection between disability and COVID-19 and having the strength to speak about it, speak out about it and to share your experience. And it’s not easy. What you’re doing in the work that you’re doing to support the members in this community is just really outstanding. I’m grateful that you took the time today to just have this conversation with me. I’m excited for people to start hearing a different thought process about COVID and a different conversation about COVID. And I’m really excited for that.   Dr. Marjorie Roberts No, we’re not going to be pushed to the back anymore. We’re not standing for that. You know, we’re going to come together. We’re going to ally a disability is a disability. There’s no one. There’s no two. There’s no three. We are all ones. We are all one.   Sarah Kirwan We are all one. The best example of that is from Crip camp, which was, decades ago. That collaborative spirit hasn’t gone away, but it’s changing. I feel like we need to change it a little faster.   Dr. Marjorie Roberts Yeah, that’s right. Yeah.   Sarah Kirwan Let’s like, let’s step on the gas.   Dr. Marjorie Roberts They got you and me in the car now. Now we behind the wheel. We’re going to put a foot on the gas and we don’t pick up. Who else going to go and go try back. Who don’t want to go? We going to take this thing all the way to Washington DC.   Sarah Kirwan Yes. I feel like so excited. I want to go outside and like run in the streets with signs. We’re going to Washington. Yeah. I love it. I love it.   Sarah Kirwan All right. Well, thank you.   Dr. Marjorie Roberts Thank you so much.   Sarah Kirwan Once again, to our listeners, thank you for spending your time with us and joining the Incluse This! conversation and movement. Incluse This! is brought to you by eye level communications, LLC. Eye Level is a California based woman and disability owned small business committed to having critical conversations at eye level that are necessary to move disability to the forefront of the greater diversity. If you’d like to learn more about the work we’re doing, please visit the website at www.eyelevel.works. You can also email me directly with any podcast episode ideas or questions and comments at Sarah at eye-level dot works. Remember to put your disability lens on when you look at the world and tune in next week for another stimulating conversation on includes this, the podcast, that’s really a movement take care and be well.

Episode 5: Will the Cripples Save You? Wednesday, February 10, 2021 GUEST: Charis Hill, Writer, Speaker, Model, Being Charis https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/Incluse_This_S1_E5_Will_the_Cripples_Save_You_Charis_Hill.mp3 Throughout the past year, the COVID-19 pandemic has been the impetus for bringing the term ableism to mainstream conversations. In this episode, Charis Hill and I discuss the messaging we’ve been confronted with, the actions we’ve witnessed, and the structures in-place that devalue and destroy disabled human lives. QUICK LINKS As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability. OUR GUEST: Charis Hill Award-winning advocate for the spondyloarthritis community since 2013, Charis is a queer disabled writer, speaker, and model living with Axial Spondyloarthritis, Major Depressive Disorder, Anxiety, Post-Traumatic Stress Disorder, and Autism. Charis has been instrumental in the creation and design of spondyloarthritis disease treatment guidelines, patient-centered rheumatological research, international criteria for disease treatment outcomes, and research guidelines. They are consistently involved in national/international awareness and legislative advocacy efforts to improve spondylitis education, funding, and access to treatment. Charis serves on the Spondylitis Association of America advocacy committee and the CreakyJoints/Global Healthy Living Foundation (GHLF) Patient Council and COVID-19 Patient Leadership Council. They have spoken at numerous events and press conferences, as well as regularly with members of Congress on Capitol Hill. Charis has modeled in Los Angeles Style Fashion Week and New York Fashion Week and they’re featured on covers of Féroce magazine, Arthritis Today, and Spondylitis Plus Magazine. Their bylines appear in HealthCentral, Healthline, Business Insider, AnkylosingSpondylitis.net, and This AS Life; including cover stories for Arthritis Today and Spondylitis Plus magazine. Charis’ story has been featured numerous times in mainstream news and lifestyle media, including the 2019 documentary, Becoming Incurable. TRANSCRIPT Sarah Kirwan: Hi, and welcome to Incluse This! I’m your host Sarah Kirwan, and this is a movement for disability equity. Today we’re talking with Charis Hill, and we’re talking about all the different ways the coronavirus has impacted and continues to impact the disability community. Award-winning advocate for the spondyloarthritis community since 2013, Charis is a queer disabled writer, speaker and model living with axial spondyloarthritis, major depressive disorder, anxiety, post-traumatic stress disorder and autism. Charis has been instrumental in the creation and design of spondyloarthritis disease treatment guidelines, patient-centered rheumatological research, international criteria for disease treatment outcomes and research guidelines. They are consistently involved in national and international awareness and legislative advocacy efforts to improve spondylitis education, funding and access to treatment. Sarah Kirwan: Charis serves on the Spondylitis Association of America advocacy committee, the CreakyJoints Global Health Living Foundation, patient council, and the COVID-19 patient leadership council. They have spoken at numerous events and press conferences, as well as regularly with members of Congress on Capitol Hill. Charis has modeled in Los Angeles Style Fashion Week and New York Fashion Week, and they’re featured on covers of Feroce Magazine, Arthritis Today and Spondylitis Plus magazine. Their bi- lines appear in HealthCentral, Healthline, Business Insider, ankylosingspondylitis.net and This is AS Life. Including cover stories for Arthritis Today and Spondylitis Plus magazine. Charis’s story has been featured numerous times in mainstream news and lifestyle media, including the 2019 documentary Becoming Incurable. Sarah Kirwan: Hi Charis, and welcome to Incluse This! I’m so excited to have you here today to talk with us about the coronavirus and how it has impacted the disability community and each one of us within that community. This is something that I’ve been researching and talking about for the last year. During my research I found your article, the cripples will save you on creakyjoints.org. After reading your article, I knew that I had found the guest for this episode. I just fell in love with the truths you were sharing and the candor with which you shared them. I then proceeded to stalk you with emails for a couple of weeks. Charis Hill: Oh, I’m used to that. Hi, thanks for having me. I do want to mention, you said Charis, which is one of multiple correct pronunciations of my name. So anybody listening, Sarah actually used the correct pronunciation. We can talk about that another time. Sarah Kirwan: Thank you. Perfect. When we had our first call, we talked about everything from COVID messaging and masks and medical rationing, and do not resuscitate orders, to COVID relief measures and vaccines. Today we’re going to cover all of these, which is quite a bit so I want to get started. The title of this podcast episode is will the cripples save you? Which is basically the same name as the title of your article? I switched around a few things and added a question mark. But the original title of your article is the cripples will save you, a critical coronavirus message from a disability activist. In the article you write, “Do you really want a bunch of cripples to save you again? My friend Don Gibson wrote this in a recent Facebook post about being a chronic illness and disabled activist in the age of the coronavirus outbreak or COVID-19. I can’t stop thinking about her sentence, I can’t. Sarah Kirwan: It grabbed me hard in the gut and wouldn’t let go. Before I keep going, let me say the word cripple is an ableist slur. Many of us disabled activists choose to reclaim that word from time to time, to illustrate the labor we do as people who regularly fight society’s barriers to our full participation in the world. I don’t recommend using the word cripple if you aren’t disabled.” I love that last part that you put on there, I don’t recommend using the word cripple if you aren’t disabled. I have to tell you and our listeners, I remember the first time I heard this term used and I was playing wheelchair basketball. Sarah Kirwan: I was like, “Wait, you guys can’t use that word, that sounds horrible. Seriously you definitely can’t name your basketball team that.” With their responses, I learned some really valuable disability lessons from these friends. Today I hope our listeners will learn some very valuable lessons about the incredible emotional and physical weight that disabled people have been carrying and continue to carry throughout this pandemic. As Jourdan Saunders and I discussed in our episode two weeks ago, words are powerful. Would you like to anything to that Charis? Charis Hill: I agree words are absolutely powerful. I just want to mention that when I wrote that piece that you read an excerpt from, I was just reeling from the let’s see, from the vernacular that people were using to describe the pandemic. It’s only going to affect old people or people with underlying conditions. That first part you read, every time that I hear it read again or I read through it again I’m just reminded of the anger that I felt in that moment, and the desire for people to just hear the disabled community. Which speaks to what you said, that incredible emotional and physical weight that we carry and continue to carry. Sarah Kirwan: I think that, I don’t know if you know this, but one of the reasons why I started this podcast, one of the catalysts actually for starting this podcast was when I heard that phrase. We’re going to talk about that a little bit more, but the fact that no one recognized that as an ableist term from the get-go was shocking to me. In May of last year, Rolling Stone published an article about a now former chairman of a planning commission in Antioch, California. His name is Ken Turnage. He was ousted after he publicly expressed his endorsement for culling the herd on a personal Facebook post. I’m just going to take a moment and read his obviously now deleted post for our listeners. This is it. “The world has been introduced to a new phrase, herd immunity, which is a good one. In my opinion, we need to adapt a herd mentality. A herd gathers, it ranks, it allows the sick, the old, the injured to meet its natural course in nature. Sarah Kirwan: Then we have our other sectors, such as our homeless and other people who just defile themselves by either choice or mental issues. This would run rampant through them, and yes, I am sorry, but this would fix what is a significant burden on our society and the resources that can be used.” Wow. To see that in writing when we talk about human beings is just incredible to me, and I’m sure to you and to many others. On the flip side of that though, he’s not the only one that’s been pushing this survival of the fittest philosophy. The words, language and messaging we’ve been consistently fed throughout this pandemic are all saying the same things in a more subtle, less in your face way. I just feel like he’s the one that came right out and said it and put it in writing really. What are your thoughts on that Charis? Charis Hill: I just, as you were reading through that my blood was boiling. I know that that thinking is out there and it’s quite prevalent. It’s just, like you said, it’s not always right at the surface, people don’t always just say it. But this pandemic has brought out a lot of that really harmful, internalized ableism, and really not even internalized but very upfront in your face sort of a blatant desire for people like me to die. I’ll just say, we can talk about this more later, but I’ll say for these people to think that way, paired with our knowledge that anyone at any time could become disabled is ironic and honestly a little funny to me. Sarah Kirwan: Oh, absolutely. The other thing that we’re touching on in the next episode is, is COVID-19 a disability? We’re not even looking at long haulers or talking about any of that and the messaging that’s also impacting them throughout this. I think our first lesson today is going to be on COVID-19 messaging. Honestly, it’s hard as we just discussed, it’s hard to know where to even start with this one. When I heard the phrase I’m sick and tired of being sick and tired, I was like no shit. There’s other phrases that we’ve heard, but let’s start with the one that you just touched upon, which was I think the first phrase we all really heard that just was like oh my gosh, what a not subtle slap in the face for people with disabilities and the devaluing of their lives. That is “don’t worry, COVID-19 will only seriously impact people over 65 or those with underlying health conditions.” When I heard that the first time I was like, do they know that all of us with underlying health conditions can hear them, and we 100% know and understand what they’re saying? Sarah Kirwan: Yes, we understand because we live with ableism each day. I think this pandemic has actually helped me to understand ableism better, but Ken Turnage didn’t understand, and I’m sure that many others don’t understand what’s inherently wrong and ableist about this phrase along with the other words and language and messaging that’s being used throughout this pandemic. In addition to that, I want to point out that our Asian American members of the disability community have had an added layer of being targeted and ostracized when our leadership continuously used the phrases kung flu, China virus, and a myriad of other racist slurs. As a well-known empowering and impactful disability advocate and activist, would you please help all of us understand what is inherently ableist and wrong with saying only those with underlying health conditions, along with the other accompanying words, language and messaging that you’d like to point out that’s been used during this pandemic? Charis Hill: That sort of language it’s obvious who that language is coming from. Obviously a high-risk or disabled person who was in a position of leadership and power would not say that. So it’s clear systemically that our leadership is mostly non-disabled healthy people. What comes from that is messaging that is inherently ableist. The statement only those with underlying health conditions assumes that the only way to be a full, valid human is to be fully healthy, and if you aren’t part of that community, it’s okay if you just die off. Charis Hill: Because the only people who really matter are people who have an immune system that can fight off this virus, which caveat we know that that is not the case as we see formerly healthy people dying and having poor outcomes. It’s this offshoot systemic ableism, it’s like the racism conversation we’ve been having, where privilege just comes out. It’s very obvious who has privilege by the words they say. Even if you were to just read the messaging, you would know who said it. Oh, this is a white person who said that, or oh this is someone who has no idea what it’s like to live with disability or a health condition. You don’t even have to look at the person to know what characteristics and what privilege they have. Sarah Kirwan: That’s so true. I was looking at something or doing some research the other day, and they said that oppression is the opposite of privilege. Charis Hill: I have to think about that. I’m not sure I can comment on that, I need some time to think about that. Sarah Kirwan: I thought it was really interesting. Oppression is the opposite of privilege. We’ll have to think about that. But I really think that we would be remiss if we didn’t talk about ableist actions and behaviors that we’ve seen and personally witnessed throughout this pandemic. I think I just have to say masks. I don’t know if I need to say much more. Non-disabled and people without underlying health conditions have cited the ADA to try and get out of wearing masks, which just makes me laugh. Now all of a sudden they want to use the ADA. In addition to that, anyone who needs to read lips when they talk to people can no longer do that because the majority of masks don’t have clear windows that allow for that. Sarah Kirwan: Before we go on, can I just say that I’m seriously so tired of putting energy into talking about the ADA, because I don’t think people understand that the ADA is the absolute bare minimum for inclusion equity. It’s barely a standard and definitely not a gold standard. But now people who don’t have disabilities want to use it for their own personal gain, because they want to get out of doing something. I know this could be an entire episode conversation, but we’ll keep it short. Can you identify a few ways that the ADA has been manipulated for use by the non-disabled community during this pandemic? And can you share your thoughts or any personal experiences that you’ve had with that? Charis Hill: I just want to start by saying that people who have privilege, whether it’s race privilege, gender privilege, white privilege, all those things, they are so desperate to feel oppressed in some way. The masks subject one example is that, where people who don’t experience disability, which means they don’t have a direct experience with ableism, I would say a caveat there that you can be a victim of ableism if you’re not disabled. Sarah Kirwan: We may have to go back to that Charis. Charis Hill: Sure. People have such a desire to feel oppressed that they will grasp at straws, and that’s a double entendre there talking about disability rights. But they will pull out anything to what’s the word? To put themselves in that category. So when it’s convenient to claim disability, i.e. wanting to not wear a mask just to go into a store and making a big deal out of it, and claiming disability is the reason that’s okay. But in the same breath hating disabled people very vocally and obviously, not liking that disabled people get a better parking spot than they do even though it’s for a very valid reason. There’s the desire to feel oppressed when you’re really not oppressed, and to take advantage of work that disabled people did for decades just to get the ADA, which is over 30 years old now. Charis Hill: Like you said, it is the bare minimum. It needs a refresh. We need more. I feel like I’m just rambling now, but yeah we’ve seen a lot of ableism highlighted in a lot of manipulating the ADA for sure. When accessible things like telehealth, telework, things like that go away, we’re going to see non-disabled people realize how accessibility helps everyone. I’m going to say that again. How accessibility helps everyone. As soon as these conveniences for non-disabled people disappear, they’re going to realize oh, this is something that we benefited from, and perhaps realize these are things that would help disabled people all the time, not just during a pandemic. I hope that they’ll realize that. Sarah Kirwan: Man that’s exactly what I was just going to say. Will they realize it Charis? I want to touch on that slightly because my fear is that people won’t recognize or realize that. I think it’s important for us to recognize that what happened overnight with this pandemic, let’s say telework, telehealth appointments for doctors and providers, physical therapy over Zoom, work from home opportunities. I actually made a reasonable accommodation request when I was a hospital administrator, and I was denied that request. It was for every other Friday off. Sarah Kirwan: Not only did they deny that they actually questioned why working more hours four days a week, and having that Friday off would help someone with fatigue. We look at these things that all of a sudden were available that disability advocates have been fighting for decades for. People have been denied accommodations, they haven’t been able to, I don’t even think half of the country knows what an accommodation is or how to eloquently or through a great communicative style get a good accommodation in place that’s a win-win for both people. But anyway, now I’m off on the tangent. I want to- Charis Hill: I feel I could add to that though. It definitely needs unpacking a little. Just non-disabled people have definitely claimed disabled people’s decades long work, that was suddenly implementable when a health issue impacted the entire population. Yeah, absolutely I’m worried that when these accessible measures go away if you will, once the pandemic is declared over, yeah absolutely it’s going to be forgotten that these things [inaudible 00:22:53] disabled people all the time. I did tweet recently about how there are so many non-disabled people talking about disability issues during the pandemic without realizing that they are disability issues. I think that’s a good way to end this segment honestly. Sarah Kirwan: Perfect. I love how you said people are desperate to feel oppressed in some way. You and I talked a little bit about oppression Olympics, which that was honestly I have to tell you the first time I had heard that, so I had to do a lot of research on oppression Olympics. But can you share a little bit oppression Olympics what that means? Charis Hill: Yeah it’s like in the chronic disease community, for example, you have this hierarchical design model where some diseases are more well-known and therefore have more funding than other diseases that in a lot of ways impact lives equally, even if it’s differently. So for example you have cancer, everyone knows cancer is bad. At the same time cancer has a ton of funding, and people know what treatments are there. A lot of people, and I’m guilty of this too, I have to be transparent in that. A lot of people with lesser known diseases that are also severe face this advocacy what’s the word I want? Conundrum of like how do we advocate for awareness of our disease without making it an Olympic competition where we’re comparing our disease to cancer or to another disease that’s well-known and well funded? As a like, well cancer has this, but we have a really bad disease too and you need to hear us. Charis Hill: It’s like hating another disease in order to elevate your own disease, where that’s not necessary to raise awareness and I’m still learning this. I have to be honest with myself and with your listeners about that. That raising awareness about something, advocating for something, it’s not necessary to do that while throwing other conditions or diseases that are marginalized under the bus. Another example is like the disability community versus black people, comparing ableist to racism. I’ve been educated, and it took me a while to hear that it wasn’t appropriate to compare my form of oppression as someone who is a person of color, but I’m not black. I don’t experience racism in the same way. It’s not appropriate for me to compare ableism my experience to how racism is a form of oppression. They’re separate things, one’s not worse or better than the other. They’re both valid, they’re both different, and they both deserve platforms for people to learn about them. They intersect in a lot of ways so competition is not the best way to advocate. Sarah Kirwan: No, it’s definitely not. In the last episode I talk with Tiffany Yu from Diversability, we talk about what disability community? We use that phrase so flippantly without really defining it for people or what it is or what that group looks like. I feel there’s a lot of siloed groups within the disability community. I think that is also what brings about that competition among us. I think a lot of times the community is looked upon as being very disjointed. You have this group over here doing this work, and this group over there doing that work, and we’re not working together. I love what you said about it doesn’t have to be a competition. It doesn’t have to be mine is worse than yours. It can be we both experience these things in a different way. How do we collaborate to bring what we do have as shared experiences to the table, so that we can move the disability rights movement forward? Charis Hill: I’ll share a very brief, quick example of where that was successful. The Section 504 sitting was honestly the longest lasting US sitting for the justice issue, 26 days. Where people with all forms of disability worked together, decisions were made with everyone agreeing before moving forward with something. There wasn’t one leader who decided things. I think for your listeners that that would be a good place for people to see a success story where there was no competition. There was no oppression Olympics. It was all forms of disability, blind people, deaf people, people using wheelchairs, people with other forms of mobility challenges and impairments, people with developmental disabilities, all of it. I encourage your listeners to read up about that for sure. Sarah Kirwan: I love that story too. I love how it is inherently also tethered to the civil rights movement at that time and Black Panthers were very supportive, brought meals. Charis Hill: Provided security. Sarah Kirwan: Yes. I Love that story. I do think that thank you for bringing that up, and I think our listeners could really learn a lot about what that does look like to cross-collaborate. Charis Hill: I don’t think that collaborative spirit has gone away. I think we are just finding a new way to navigate it, but different technologies and things. Sarah Kirwan: I love that, just looks different. We hear the words COVID-19 does not discriminate. However, those of us who are really listening, we know that this is not the truth. Existing illnesses and black populations due to health disparities as a result of racism, have resulted in significantly higher infections. While people with disabilities and chronic illnesses make up over a quarter of the adult population in the United States, according to a report from the Centers for Diseases Control and Prevention, this population has faced incredible obstacles when trying to access care during the pandemic. Some have lost personal caregivers, others haven’t had access to their medications. Sarah Kirwan: But we’ve all been in lockdown basically since the start of the pandemic to take care of our own health, because it’s obvious that no one around us is going to do that. So let’s get right to triage officers, care rationing policies and do not resuscitate orders. From the research I’ve done these policies violate several laws, including the ADA, the Rehabilitation Act and the Affordable Care Act. We also know that the disability paradox comes into play here. For our listeners that paradox is the discrepancy between how a provider would rate the quality of life of a disabled person, versus how that person would rate their own quality of life. Charis, would you please talk with us about the larger issue that’s at play here, which is the complete devaluing of disabled human lives? Charis Hill: This is a really hard issue to think about and to talk about, especially because so many people, non- disabled people mostly aren’t even aware of it. The value of life and what quality of life is comes from the medical model of disability, which it focuses on clinical numbers, blood results, mobility in a physical therapy sense. Where the expectation is to make a person as non-disabled as possible for them to be accepted as a full human. Coming into COVID, one example that I can share about that really explains this point well is, and I can’t remember her name unfortunately. A woman in Oregon in 2020 who lived in a long-term group home care facility. She was non-speaking, I think she used a wheelchair to get around, had multiple forms of disability. I believe NPR is where I heard the story where her care providers believed that she had COVID. I don’t believe she ever was tested or either she tested negative. Charis Hill: She was in a hospital being treated. She wasn’t allowed to have care providers with her to help navigate her treatment. Doctors were deciding for her and for her care team whether it was worth it to fight for her life, to incubate her to do everything. Eventually it was found out that she had a long-term lung infection I believe that could have been easily treatable if doctors had investigated and actually cared about her life. But doctors chose to basically to let her die, because they didn’t believe that her quality of life would be good. Even though she had expressed to her caregivers and care partners that she loved her life, she loved doing this thing and that thing, and that she did not want to die. I think that’s just without even describing what that means under your question, it really addresses the point of non- disabled people who are taught in medical environments, whose life is valid and who is worth saving. Charis Hill: Especially in this pandemic we’re seeing that, where disabled people are turned away from hospitals if hospitals are close to capacity, because they’re less likely to survive or less likely to have what a medical doctor would say is good quality of life. It just really speaks to lack of disabled medical practitioners who think differently and make different decisions. It speaks to the lack of disabled people in positions of leadership outside that who create policy. There is a ton to unpack here, it could be a whole episode on itself, but I think I’ll just leave it at that. That woman’s story speaks for itself. Sarah Kirwan: I don’t think there’s much else to say beyond that. As you were sharing that story, and I read the story actually about this woman. Every time I hear it, it breaks my heart. Going back to what you said at the beginning, I don’t honestly think that people know these laws exist in states across this country. That that is actually a medical power, legal power that’s given to the providers to make those decisions. One of the things that with my company I really hope to help change is, providing that training for providers that you’re treating a patient, a person. That you don’t understand their quality of life, you don’t understand their bodies. When I go into a doctor’s appointment at this point, I don’t know how you feel, I feel like a specimen. There are many times that I’m like, okay, what do I have to take off? I basically just get undressed. I’m like, yep here I am, poke me, prod me. We get used to that as patients. Sarah Kirwan: The education piece that we need to really put into our medical system, our healthcare system, is training providers that there is that medical model, but there’s also a social model, identity. There’s a different way to look at valuing life. I think that training is very necessary in this area. Also, having a seat at the table. Another thing that came from our original conversation, was that I understood that the CARES Act and other relief measures that have been implemented previously by the leadership in our country, haven’t included people with disabilities receiving SSI and or SSDI. I hope I’m saying that correctly. Sarah Kirwan: Would you please share with us how this has impacted you personally? Because I’ve shared this with other people, and we can’t obviously know how someone’s going to respond. But the response that I got was, well, that was the same amount that they were making before the pandemic. My response to that was, well, people who were making a certain amount before the pandemic also got an extra $600 a week that put them way above what they would ever make in the year. I find this to be a very interesting conversation. Do you know more about that in the policy world, in activism? What are people saying? Charis Hill: It’s a huge issue, and especially more recently as people are talking about raising the minimum wage. I guess I’ll summarize a little, so the CARES Act, and then at the end of 2020 there was another a lot of people are calling the stimulus bill. Where a one-time payment has gone out. I think it was $1,200 was the first and then $600 was the second. So people receiving SSI I believe did not receive the one-time payments either one, but I could be wrong don’t quote me on that. Charis Hill: But I do know that dependent adults and a lot of that is college age students, people in college who are still considered dependents, they didn’t get the one-time check. Additionally, neither of those bills have included funding to support independent living for disabled people. Which has meant a lot of loss of support for people who live independently in their homes, for people who live in independent living sort of group home environments and things. But further to your point about unemployment versus the one- time check. For me personally, my monthly income is around $1,000 on SSDI. That is not a lot, I live in forced poverty. Sarah Kirwan: You get $1,000 per month on SSDI, that is unlivable. Charis Hill: I receive about $1,000 a month which is around $12,000 a year. I don’t know who your listeners are, but imagine what your annual income is and maybe you’re somebody who’s disabled and you live in poverty just like me. But perhaps some of your listeners are people who work for a living, have incomes that are twice, three times or four times or even five times more than what I receive. Can you imagine living on that? To add onto that unemployment boosts were part of the CARES Act, which was $600 a week on top of the state provided unemployment. I have dreams about that kind of money. I can imagine what that would do for my life. Charis Hill: This interesting comparison between disabled people who rely on SSDI, and I’ll talk about SSDI because that’s what I receive, received just one-time payment of $1,200. That they are expected to stretch out over however many months, at this point it’s almost a year. While people who work for a living and then suddenly become unemployed due to a pandemic are receiving three times sometimes four times my monthly income all of a sudden, even though I’m unemployed all of the time. I can rant all day about this, all day about being someone living in forced poverty. My cost of living has risen due to the pandemic because of food delivery costs, there’s just a myriad of ways, and yet my cost of living the increase has not been supported by the government. I can rant all day about that, but I’ll just stop there. Sarah Kirwan: Let me ask you this, is anyone talking about this in the policy world? Are any of our leadership members talking about this? Charis Hill: I haven’t seen any evidence of it myself regarding increasing stimulus money for people who live in poverty due to SSI and SSDI. I see a lot of advocacy within the disabled community about it, but I haven’t personally seen any lawmakers respond directly to that. Sarah Kirwan: Do you think people have asked them that? Or do you think that… Charis Hill: Oh yeah I have. I know that if I have done that, then of course many others have. You have people who were on the Obama administration staff talking about it on Twitter. Even though there is talk happening it’s just not public. Sarah Kirwan: That’s the sad part. That goes back to a conversation that we had an episode two, excuse me, with Leroy Moore. It was titled inclusion is bullshit. We talked about the damage it does when the conversations and the signing of legislation or policies are done behind doors, behind closed doors. When the issue isn’t brought to the attention of the public. Charis Hill: That goes to your point about having people at the table. If policy is happening by only the people who hold office, and if all of the people who hold office are 90% non-disabled then what kind of policies do you think you’re going to get out of that? It’s going to be policy that benefits whoever’s in the room and who looks like them. Sarah Kirwan: Exactly. Another thing that I wanted to talk about that has become more of a prevalent conversation right now is the vaccine rollout. I’m hearing from friends, I’m researching I know what tier we’re in, but there are a lot of other tiers ahead of us. Do you have insights on the vaccine rollout? We can talk about people at the table, which they’re not, and that’s something that we need to make sure that we have a seat at the table to address the next pandemic in a very disability inclusive fashion. But at this point, what are your thoughts on the vaccine rollout? How is it impacting you personally right now? What do you… Well that’s it. Have you had personal experience? Charis Hill: Just like the mask conversation, which I’ll briefly follow my tangent regarding masks. Masks are an accessibility aid, and a lot of non-disabled people who are resistant to wearing them I think on the subconscious level are afraid of masks because it allows them to do more in life, and that’s literally what accessibility tools do. Just like prescription eyeglasses, if you didn’t have them you wouldn’t be able to do a lot. If we didn’t have masks we wouldn’t be able to do a lot right now. But I say that to compare that to the vaccines, the vaccines are an accessibility aid as well. They allow people to return to public life more than currently. They allow for safer interaction, without fearing for health, fearing disability. The CDC in their vaccine rollout guidelines, people over the age of 65 and people under the age of 65 who have high-risk conditions are in phase 1C, that’s the CDC guidelines which states do not have to follow. Charis Hill: Each state then I guess has created their own process for that, whether the governor decides themselves or has created a vaccine advisory council, which is the case in California. You and I both live in California and so I’ll focus on California. The California Vaccine Advisory Council is made up of representatives from dozens of statewide organizations that are considered stakeholders. I looked at the list of those organizations recently, and actually there are like half a dozen health related or disability related organizations that have a representative. I do know someone who is on that council, and he and I are regularly in touch. I don’t know that any of those representatives identify as disabled, but we do have a place at the table. That said, we haven’t been heard because of conversations I’ve had in private about this. Those committee meetings are livestreamed or recorded and then broadcasted later. So you actually can see what happens in those meetings. Charis Hill: What’s important to me is that the CDC recommended that people over 65 and people with high-risk medical conditions are in the same phase. But in California those two groups have been separated, where high-risk people under the age of 65, which is essentially disabled people under the age of 65, are the last group in the first phase of vaccine distribution. I’m going to get really detailed here follow a tangent, but there’s a lot of evidence coming out that new strains of COVID-19 are being discovered to have probably come from immunocompromised people. Where the virus, because they’re immunocompromised their immune system can’t fight the virus as well. The virus stays in their system longer and has more time to replicate and create a new version of itself. Charis Hill: There’s outcoming evidence that these new strains are because immunocompromised people have gotten sick and then the virus has replicated into a different version of itself, and then gotten back into the general population. Which you would think would a really useful argument for why people under the age of 65 with high-risk medical conditions should be vaccinated as soon as possible, so that the virus isn’t in our system long enough to create these new highly contagious strains. That’s a really long tangent to answer your question of like with vaccine distribution, why are we not elevating the vital needs for all disabled people no matter their age to be vaccinated? I’ll follow another brief tangent. Recently on Twitter I read about someone breaking down the fact that caregivers are currently allowed to be vaccinated in California, but the people that they are caring for are not. Charis Hill: This just opens up a huge can of worms for me. If you think about the statistics about caregiver abuse, elder abuse, all of these things where it’s been reported that disabled people are way, way disproportionately impacted by domestic abuse from family members, caregivers, whatnot. You extract that thought into the fact that during vaccine distribution only the caregivers are being vaccinated, that opens up so much potential harm to disabled people who aren’t allowed to be vaccinated yet. Imagine a caregiver going out to hang out with friends because they’ve been vaccinated. Well, they come home and they still are able to pass on that virus to the disabled or the immunocompromised person who can’t fight the virus as well. That’s just worlds of not good. I’ve talked about this for so long at this point, for your podcast this could be multiple episodes of its own, but I think I’ll stop there because my blood’s boiling right now, so I’ll just stop there. Sarah Kirwan: We could have a whole episode on that. One of my fears, one of my greatest fears that also drives me in this space is my fear of my MS getting to a point where I am debilitated and have a caregiver, and I can’t vocalize my needs or take care of myself, I’m so reliant on that person. That fear stems exactly from what you were just talking about. It scares the shit out of me. It definitely could be its own whole, whole episode. But let’s not go down that path and we’ll go back to the work that you do in this space. I have read a lot of your work, and it is empowering. I’ve read a lot of messages from your followers who are so comforted, and it’s just very beautiful. I was reading through your blog and I came across a message from one of your readers and she wrote, “Charis, thank you for being a voice. Many have no idea what AS is and how it affects a person. I was diagnosed at 19, and doctors thought that it was all in my head. I found it very frustrating as well as unfair. Sarah Kirwan: I played sports growing up and I was very athletic and active. To have been diagnosed with this freaked me out, but each day is a new day and I will not let this overcome me. In the last two months, my seven- year-old son was also diagnosed with this. It’s been very hard for him recently, and we are trying to find ways for him to understand while staying strong. It breaks my heart. Once again, I want to thank you for your voice and words of encouragement.” That’s pretty amazing. I feel like in this space of activism and advocacy that we sometimes stare at this gigantic goal of change and impact that we want to make. It feels large and it doesn’t feel like we can accomplish that. We forget that along the way, these “smaller” individual one-on-one interactions that we have with people they combine to help us reach that goal, that goal that we’re of inclusion and equity, and they combine to be the most meaningful. Sarah Kirwan: That’s what I really love about the work that you do, is bringing these people together to have these conversations about AS and their own personal experiences with that. In this space I feel like there’s an extreme amount of passion, emotion, anger, which really hides or masks a sadness. I think not being seen and not being heard and just feeling so marginalized is just so detrimental to all of us. We put all this effort and passion and emotion into it, and then we burn out sometimes. That burnout is extremely prevalent in this area of disability activism. How do you stay passionate, energetic and really in that space to continue doing this work? What do you do when you feel that burnout? Charis Hill: Living as a disabled person, and especially for me as someone with multiple chronic conditions, including both physical and mental illnesses, burnout is just a natural thing that a lot of us go through. Then for those of us who on top of that choose to become advocates and remain advocates and activists. For me it wasn’t a choice it just happened, and I just kept saying yes, and built up to where I am today. Burnout is sort of a permanent condition for me, and especially in this pandemic where I was tired before the pandemic just trying to survive plus being an advocate. Then the pandemic happened, and all of these new issues suddenly presented themselves. I’m tired, I’m very tired. What I usually say to people who ask like, “What is it like to be who you are?” I’ll say like, “Who I am is a poor celebrity.” I’m an impoverished celebrity who can’t buy a mansion so I have privacy away from people who are like, “Oh, that’s a celebrity, I have to go knock on the door and say hi.” Charis Hill: Being someone whose life a lot of my life is lived in the public eye is really taxing. Even my private personal Facebook page is something that I have my friends and family, and then I have my fans who see everything I post. Every outward piece of me is digested with the lens of this is a celebrity, and I’m going to think about and judge everything they do and say. Just living in that reality is really taxing. But at the same time it’s really rewarding, because I can see the changes that I influence directly in my fans and in people who message me privately to say exactly what you read before from someone who read my blog. Thank you for being a voice. Thank you for saying what’s on my mind, but I just couldn’t put into words. Thank you for making me feel less alone. Charis Hill: Just all of these things where I’m not doing this for myself and I never was. But I can’t stop, if I stopped I really wouldn’t know who I am, because all of me is in this work. I’m a brand, I tell people that I’m a brand. I have formed my whole life around this brand as an advocate, as a spokesperson. If I stopped doing that suddenly, I wouldn’t know who I am anymore. In a way it’s like I choose to continue doing this, but I’m also stuck doing it. Burnout is just a constant in my life. That said I love to garden and I have four cats. There are small breaks in the middle of all that work. Sarah Kirwan: Wow, I love all of that what you just said. It’s interesting for me too because, so I got into this space really because I was just always advocating for myself for my MS. I had an inner ear disorder, a very rare disease that took nine years for them to diagnose. I ended up diagnosing myself and then begging UCLA neurosurgery who were amazing and diagnosed me. I think that we go from micro, how it affects us personally, to macro thinking instantly. I believe those of us in this space do, that’s how we got into the space too, is that this advocacy work for ourselves and then we start thinking about the bigger picture, who else would benefit if they knew about this? Or who else could I help? Sarah Kirwan: But what I wanted to address is what you said about I’m a brand, I wouldn’t know who I am. It’s so interesting me, because one of the reasons I’m doing this is because I couldn’t not talk about my disabilities. It just didn’t feel authentic to me to try and live in a space where I couldn’t share this very, very important part of my identity, and who I am and how I maneuver in the world. Thinking about going from wanting to make that decision to get into it, and then becoming this brand where you feel almost stuck and can’t get out of it. I never even thought about that, you just blew my mind. Charis Hill: I don’t know that I ever even chose to get into it, I kind of fell into it on accident and honestly through a very selfish way. When I was diagnosed it’s been nearly 10 years ago now with my physical condition, ankylosing spondylitis, or now it’s more commonly we’re shifting into calling it axial spondyloarthritis. But people use both terms. I’m a former college athlete, I ran marathons. I did really physical work, and suddenly this chronic disease took me out, I was like flat. I was screaming into the void about what I was going through, and I saw this opportunity to fundraise and I was like well I’m a good fundraiser, I’m going to fundraise and it’ll make me feel more in control of my situation. Charis Hill: But the way I got into this was really selfish. I wanted people to hear what I was going through. It wasn’t fair, my life was just suddenly something I was no longer in control of. I realized that in sharing my story I was actually giving other people voice, and sharing other people’s stories. I quickly learned that if I was going through something, chances were super high that dozens or hundreds or thousands and millions of other people were going through the exact same thing. That if I added my voice to the mix that awareness could grow and it would make it easier for other people coming along behind me. Sarah Kirwan: I love that too. Let’s say that somebody doesn’t have a platform, or they don’t have a show, maybe they don’t live with a disability. Maybe they don’t identify as having a disability. How can our listeners become disability activists in their own lives, whether they’re living with a disability or not? Charis Hill: There’s no right or wrong way to be an advocate, no matter what community you’re talking about. But I do urge people to learn about the power of sharing their own stories. It’s not so much about sharing statistics. Many people really can’t picture a statistic. If I say 3.2 million Americans live with spondyloarthritis, you’re going to be like, oh yeah, well that’s a number and who cares? But if I tell you what it’s like from the time I wake up in the morning, how long it took for me to get diagnosed, what I go through after a day of doing a big thing, you’re going to hear me and remember my story. I encourage people to get comfortable telling their own stories, and then finding out where to plug those stories into things they’re already passionate about. I’m a model and so I don’t separate my being disabled from my modeling, I make it fully a part of everything I do. That’s my advice for people who are disabled or live with chronic diseases. Charis Hill: For people who are non-disabled or are temporarily healthy, I always encourage them to learn and listen from us. Don’t give unsolicited advice. That’s the biggest taboo within the chronic disease and disability community, is to give unsolicited advice. Substitute in that place, substitute asking questions and learning directly from those impacted. Then using your place as a person in health or non-disabled privileged to speak up when you see something going on in your own life that is discriminatory or oppressive to disabled people. But when a disabled person is there, we lead the way so listen to us. But at the same time, don’t expect us to be the token disabled person, and use all our energy to do the work that non-disabled people need to do to learn our history, our justice movement, our culture. We are not here to fix your ableism, we’re here to tell you our story and to become leaders, but you also have to do work to dismantle your own ableism, that’s not our job. Sarah Kirwan: Yes, we are not here to fix your ableism. I love that. I really like the point that you made about not telling someone with a chronic illness or disease, and you may have said disability in there, not telling them how they should address or I guess, how do I want to say this? How they should live their life with that disease or disability. I can’t tell you how many magazine articles I get; people want to be helpful, that’s why they’re sending that information. But it would be really nice if somebody would just ask, “Hey, what have you been doing with your MS or your AS? Or how have you been working through it?” As opposed to assuming that I would want to learn this or I haven’t already. Charis Hill: I think the giving advice, unsolicited advice comes from a place of wanting to help. But honestly it’s really selfish, because let’s think about okay you’re giving someone a birthday gift. If you’re a really good gift giver, you’re going to listen to that person, learn what they like, and get them something that they’ve already asked for, whether it’s a specific ask or you’ve learned from what they already like to do. But if you’re a bad gift giver, and I feel like I’m going to hurt a lot of people’s feelings when I say this, but it’s true. If you’re a bad gift giver, you’re going to give somebody something that you think they should like, that is going to make you feel good about what you did for that person. That is exactly what unsolicited medical, excuse me, unsolicited medical advice does. It reflects your desire to feel like you’re doing something for that person, even if it’s something that they’ve made clear they’re not a fan of. I don’t even remember what your question was, but that is what came to mind. Sarah Kirwan: Thank you so much for being on the show today Charis. I am so happy we could have this conversation, and talk about some of these uncomfortable topics, and start understanding the ableism that’s happening all around us throughout this pandemic. I really hope it will help our listeners to identify more ableist messaging, and to not use that in their daily language and interactions. If you’d like to learn more about the work Charis is doing in the disability activism space, please visit their website at www.beingcharis.com. I know you’re active across many different sites, so where else can our listeners find and follow you the work that you’re doing Charis? Charis Hill: The best place I would say is Twitter, I’m very active on Twitter these days. My handle is BeingCharisBlog. Sarah Kirwan: Well, I really look forward to continuing our conversations, and thank you once again for being on the show today Charis. Charis Hill: Thanks for having me Sarah. Sarah Kirwan: Once again to our listeners, thank you for spending your time with us and joining the Incluse This! conversation and movement. Incluse This! is brought to you by Eye Level Communications, LLC. Eye Level is a California based woman and disability owned small business, committed to having critical conversations at Eye Level that are necessary to move disability to the forefront of the greater diversity conversation. If you’d like to learn more about the work we’re doing, please visit the website at www.eyelevel.works. That’s E-Y-E-L-E-V-E-L.W-O-R-K-S. You can also email me directly with any podcast episode ideas or questions and comments at Sarah @eyelevel.works. Remember to put your disability lens on when you look at the world, and tune in next week for another stimulating conversation on Incluse This! The podcast that’s really a movement. Take care and be well.

Episode 4: What Disability Community? Wednesday, February 3, 2021 GUEST: Tiffany Yu, Founder of DIVERSABILITY https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/Incluse_This_S1_E4_What_Disability_Community-Tiffany_Yu.mp3 When we think of disability, we often think of the literal definition, which is a medical issue that keeps a person from fully participating in daily activities. And when we think of disability community, we often think of the total population of all disabled people. However, a medical diagnosis does not automatically make anyone a member of the Disability Community. In today’s episode, we explore this phenomenon. QUICK LINKS As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability. OUR GUEST: Tiffany Yu Tiffany Yu is the CEO & Founder of Diversability, an award-winning social enterprise to rebrand disability through the power of community; the Founder of the Awesome Foundation Disability Chapter, a monthly micro-grant for disability projects that has awarded $41.5k to 42 projects in 8 countries; and the host of TIFFANY & YU, the podcast. She was appointed to the San Francisco Mayor’s Disability Council by San Francisco Mayor London Breed in 2019. Tiffany comes into this work based on her own personal experiences of acquiring a disability at a young age as a result of a car accident. She started her career in investment banking at Goldman Sachs, working on over $14 billion of announced transactions. She has also worked at Bloomberg, Sean Diddy Combs’ REVOLT Media & TV, and a venture-backed real estate startup. She has been featured in Marie Claire, the Guardian, and Forbes and has spoken at the World Economic Forum Annual Meeting in Davos, TEDx, and Stanford University. She received her Bachelor’s degree from Georgetown University and her Master’s degree from the London School of Economics. LEARN MORE: https://www.tiffanyyu.com https://www.tiffanyyu.com/podcast https://mydiversability.com   TRANSCRIPT Hi, and welcome to Incluse This! This I’m your host, Sarah Kirwan. And this is a movement for disability equity. Today, we’re talking with Tiffany Yu, and we’re talking about the disability community. Tiffany is the CEO and Founder of Diversability, an award-winning social enterprise to rebrand disability through the power of community. She is also the Founder of the Awesome Foundation Disability Chapter, which is a monthly micro-grant for disability projects that has awarded $41,000 to 42 projects, in eight different countries. Tiffany is also the host of Tiffany and Yu, the Podcast. She was appointed to the San Francisco Mayor’s Disability Council, by San Francisco Mayor London Breed, in 2019. Tiffany comes into this work based on her own personal experiences of acquiring a disability at a young age, as a result of a car accident. She started her career in investment banking at Goldman Sachs, working on over $14 billion dollars of announced transactions. She has also worked at Bloomberg, Sean Diddy Combs Media and TV, and a venture-backed real estate start-up. She has been featured in Marie Claire, The Guardian, and Forbes. And, she has spoken at the Word Economic Forum Annual Meeting in Davos. She has also given talks at TEDx and Stanford University and she received her bachelor’s degree from Georgetown University along with her master’s degree from the London School of Economics. And with that, let’s dive into What Disability Community? Welcome to Incluse This!, Tiffany! I’m so excited to finally be here talking with you here today and answering the question that so many have – What Disability Community? So, you and I met by phone last year when I initially started planning this podcast. Since that time, the podcast has obviously undergone many edits, reschedules, and new launches dates, which you have been so flexible and I’m extremely grateful for. Despite those barriers, here we are today. As you know, I’ve researched, targeted, and hand-selected the guests for this podcast, in order to maintain the intent behind it, which is to provide this coalitional space where meaningful conversations can happen, shared experiences can be highlighted, and change has a chance to happen. I’ve seen the work that you’ve done and the work you continue doing to bring this community together, as well as bringing it disability to the forefront of the greater diversity conversation. When we think of disability, we often think of the literal definition of disability, right? Physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person’s ability to engage in certain tasks or actions, or participate in daily activities and interactions. I don’t think I can even count the number of times I’ve had to fill out paperwork or have a doctor’s note speaking to my ability or lack thereof to fully participate in daily activities. However, does this automatically make me a member or a part of the disability community? Let’s start to answer that question with a couple of quotes from a great blog post written by Andrew Pulrang titled, What Defines Members of the Disability Community?; this connects us back to the original conversation we had with our guest, Molly Bloom, a couple of weeks about being disabled enough. Pulrang says, “If you have a physical or mental condition that you have to think about and plan around every day, then you are disabled.” He goes on to write, “But, if I have absorbed one thing over the last several years of disability blogging and immersion in online disability culture and activism, it’s that being one of the disabled population isn’t the same thing as being a part of the disabled community.” So Tiffany, we can use the words disability community to reference the total population of all disabil disabled people excuse me. We can use them to reference common characteristics of disabled people or their medical diagnosis. We can use them to describe a small group of disabled people who have a common viewpoint or opinion about something. What do we actually mean when we use the words disability community? Tiffany, can you please break this down for us. I loved that entire intro. I mean that was so enlightening for me, so I think what I wanted to start with is the definition of disability, which you highlighted. And for me, the way I I phrase it is a condition of the body and mind that impacts how we go about living our daily life. Because I think that embedded within that definition of limiting, impairment, interfering, right? Those all have a certain type of connotation that many people who are disabled don’t necessarily feel an affinity with that, which is why there was a part of me that really wanted to add the word systemic somewhere in that definition, right? There are so many systemic factors that are limiting us, right, and if we take a look at the Social Model Theory of Disability, which says that disability exists as a result of our physical uh infrastructure and social attitudes towards disability. Like if we look at disability through the definition of the Social Model what we see is there are so many systemic factors that are what are limiting, impairing, and interfering with us being able to live our lives fully. That was kind of point one. I think point number two is that I loved the way Andrew talked about how the the populating of people who are disabled, and the disability community are different. And I want to reference a piece that Professor Rosemarie Garland Thompson had written for the New York Times and the piece, I believe, was called Becoming Disabled. And one of the things I talk about in my work is that I believe most disabled people have what I call two disability origin stories. The first is when we either acquire our disabilities or if they’re congenital you know that’s the first disability origin story is is consciousness around the diagnosis. Or or or when we initially have symptoms you know because sometimes even the diagnosis can take can take a long time. The second is when we uh take ownership over our disability um and our disability story. So, I think that the difference between being part of the disabled population and being part of the disability community is rooted in getting from disability origin story number one to disability origin story number two. And to be honest, many people who have disabilities may never get to disability origin story number two. That’s one thing that we talk about within the Multiple Sclerosis community because a lot of people who appear to be nondisabled who are living with MS but don’t identify as having a disability or being disabled, which I actually think keeps them from accessing a very amazing community for support and this kind of kinship and understanding that you get with the disability community. The mission of your organization, Diversability, is to rebrand disability through the power of community. So, what definition of disability community do you and your staff members and volunteers use in your work?   That’s a great question. I like to keep the definition of disability broad and I like to leave space for people to self-identify as they see fit. One of the things that I’m learning is that the definition of disability actually changes depending on either who or what and by that I mean individuals or policies or government departments you know define disability. And so, the definition of disability is just so nuanced right? Because what it means to be disabled, to receive social security benefits, might be different or what it means to be covered under the Americans with Disabilities Act. So, I do want to highlight that there is nuance there. And so, when I created Diversability, for me, it is we have this shared experience of what it feels like to be socially excluded. We have this shared experience of a label disability, which to some of us um or previously historically and systemically has meant something bad. And, when I talk about rebranding disability, it’s not necessarily changing the word disability to something different, but instead thinking when we hear that word disability, can we think of it in a neutral and empowering way, rather than and what I often tell people is, if you take anything away from this presentation, it is how much active un-learning we need to to not associate disability with bad. To not associate with broken. And not associate disability with less than. Which is why I think the definition of the word disability in itself right is limiting in itself. So, um, that’s part of what we’re trying to do at Diversability, which is there has been research done that shows that your keys to longevity, happiness, your well-being, is rooted in having healthy relationships, in having positive um social connection, and for many of us who are disabled who aren’t able to find community, we get stuck in a cycle of feeling socially isolated and that lends itself to loneliness, which has all of these social health impacts, as well. Diversability. That was a very long-winded answer to say Diversability for us is we give people the space to self-identify as they see fit. But, what I want to acknowledge, as well, is Diversability is a space for people who are disabled and nondisabled. And the reason why I want to mention that is because I find at Diversability we want to meet people where they are. So, what I mean by that is often times you know if I think about who our ideal community member is this is someone who may have just gotten their diagnosis you know doesn’t really have a community, or maybe have been disabled their whole life but similar to the conversation that you and Molly had, they don’t’ necessarily have consciousness over claiming their disability yet, or they don’t’ think they’re disabled enough. How can we meet you where you are and as a result of interacting with our community members who are very proud of their disability identify. How can we encourage those who are disabled, but might not claim the identify yet, get to a point of feeling more empowered to talk about their disability or more empowered to claim ownership over it. So, that to me is where I feel seeing that journey right if I talk about getting from disability origin story number one to two if I think about outside of that tag line that you mentioned, when I think about it at face level, my goal and my dream, is to get as many disabled people as I can from that origin story number one to origin story two so that we can start to redefine what it means to be disabled to our nondisabled counterparts. I love that. That was fantastic. And I think it’s so important because for someone like me it took me a long time, two diagnoses to get to a point of really owning disability as part of my identity. And this process that I’ve gone through to bring this podcast to life and launch my business. But, owning that piece of your identity is so important and I feel like for me, when I wasn’t owning that, I wasn’t living my true, authentic life, there was this piece of me that was left out of conversations or left out of you know anything that we would talk about. I wouldn’t bring that to the forefront. So, I love the shift from origin story one to origin story two. And I love how you talk about meeting people where they are because some people may join your group and not have disclosed, yet. And I also think that sometimes, you know, we get so far into our diagnosis and we start to forget some of those feelings that we had at the beginning; those conversations we have around disclosure. Let’s go back to the diversity within this group. And you’re bringing in disabled and non-disabled into Diversability, which I love. There’s just so much diversity within the disability community and it’s not just the physical, it’s also a social categorization that crosses all others, right? It crosses race, gender, religion, socio-economic status, and sexual orientation, among others. And, during one of my most recent staff training sessions, this staff member asked me, how can we be inclusive of the disability community, if we don’t understand who belongs to the disability community and we don’t know how or who is supposed to be included? What are your thoughts on that, Tiffany? Mmmmmm…that’s the million dollar question, right? I mean I think that part of so part of why we’re called Diversability is not only number one we take pride in our disability identity, but we want to highlight how diverse the disability community is. Disability doesn’t just look like one thing and similar to you at the staff meeting, one of the things that I Have found is that often times when I share my disability story, so so one of my arms is paralyzed I will often have people come up to me afterward and they’ll say hey, I have ADHD, or I have diagnosed depression, or I have asthma, does that count? And I find that when, even when we’re asking ourselves the question does that count, the answer is probably yes, you know right, because now if you’re being part of this conversation you’re realizing Oh, the fact that I have dietary restrictions due to a health condition I have, uh, again restricts or limits like what I can or can’t eat, um. I what we’re realizing and what I feel hopeful about is in the context of everything that’s happening around racial equity, there is now a more elevated consciousness around intersectionality right, and you talked exactly about the intersectionality that exists within disability but it’s hard to grapple with okay, you can be black and disabled, you can be a woman and disabled, you can be you can be five-years-old and disabled, or eighty-years-old, you know, you know you can have all of these other intersecting identities and still be disabled. What I find is what makes it difficult is because stigma and ableism is so pervasive in our society, and in our systems right, there are policies that are keeping certain disabled people in perpetual poverty. Because we have all of this just so embedded in our society, what ends up hap happening is that you have people who don’t quote unquote look disabled right because there may not necessarily be a physical manifestation of their disability not wanting to disclose or not seeing enough other people to mirror back to them that it’s okay to talk about your disability and be open about it. And this ends up kind of fueling into all different areas all different areas of our life, from employment to how we decide whether or not we want to get the services we need. I even think about my own journey of going from story number one to story number two and the first couple of times I shared my story of how I became disabled, there was so much pain and grief in there, I I I was really hurt and you know and and very sad in sharing that story. I think that I it took me 12-years after I became disabled to even start to challenge my own internalized ableism that I had of what it meant to be disabled in this society right, and so if it took me 12-years and now I’ve been disabled for 23-years if it took me that long, I can only imagine uh how and again, the root of all of this is really is ableism and internalized ableism how long it might take other people and again, many people might not even get there because the stigma, discrimination, and bias are so deeply rooted in our society. And there’s a lot of fear there for people with disclosure, you know, we’ve talked a lot about that in some of our self-help groups for Multiple sclerosis about disclosing when you’re dating, disclosing to get services, disclosing for employment. And the interesting thing is, and we talked about this on episode one, for someone who appears nondisabled, when you look at an employment application, you can really answer, do I have a disability or do I not? You can answer either way, is it based on a medical or is based on your identity? How you answer that probably is based on one of those two, right? Fer sure. I I think a big part of it is a big part of it is also psychological safety, right? And it it’s heartbreaking to me that we have fear around being ourselves, right? And, and, I’ll say you know you know for for our queer friends I think I think for a long time and still, depending on which country you live in, there is retaliation, right? And one of the things I think a lot about is I I saw this on TikTok and someone asked someone asked a question why do you identify yourself as identity first versus person first as a disabled person, rather than a person with a disability. And, um, the way this person described it was, um, if I describe myself as person-first, person with a disability, it’s kind of like having a backpack and what I mean by that is you can leave your backpack in your seat at the restaurant, as you go to the bathroom or you can leave your backpack at home. So, the question is, can you leave your disability at home when you go out, right? That was kind of like the imagery they uh they used when describing person-first language. With identity first language, I’m a disabled person, uh, it’s kind of like I would describe it like a jacket on a cold day. And, in order to move about the world, you need that jacket or at least in that environment. And I loved that imagery because my disability impacts how the world sees me and how I move about the world. If I go to a buffet, those environments cause me anxiety because I want to make sure I can hold my plate and serve food, but that’s difficult if there’s not enough table space to put my plate down. And then if I try to balance it on my injured arm, I’m like nervous it’s going to fall and so in that particular environment, I can’t leave my backpack at home, right? I’m wearing my jacket in that particular scenario. So, when we think about these employment scenarios, that’s when I think it becomes hard right, because so much of how our external world has treated us as a disabled person influences the lens from which we move about the world, but in that particular scenario we we want it to the backpack when we wanna say well, am I disabled or am I not disabled because technically if I’m applying for that job, I feel like I’m totally capable and meet the qualifications to to produce the output that is expected of me. Wow. That. I love that imagery of a backpack. As you were talking, I just kept having this image of myself in situations where I’d take off the backpack, put the backpack back on. And that’s hard, it’s very emotionally exhausting, as well. Like you were saying, you have to have your jacket on, that is a necessity for you throughout your day-to-day dealings with the physical world around us, right? And, we think about employment, inclusion and employment, how do we get to that point where we say, okay well, with someone with MS it’s okay because one day they may have fatigue or symptoms may flare and they may need to be out for a couple of days, but they can work from home. And how do we kind of wrap our heads around that? The representation piece is huge. I was talking with a friend of mine the other day and she is looking for a position and she said I want to go to an organization that works strictly with people with disabilities. Because, as someone with a spinal cord injury, who uses a wheelchair, I want to be around other people with disabilities. So, I think that representation piece is so huge in our employment efforts because if you have an employee who maybe doesn’t see themselves represented within the company, are they going to apply to that company? Maybe not because maybe they don’t feel comfortable maybe they haven’t gotten to number two in that origin story or really want to own that and go into a place where it’s going to be uncomfortable and you’re educating and teaching and you’re the only one, right? With that, there are so many disability focused organizations and nonprofits that exist today. I mean I could name off hundreds. And each one of these focuses on a very specific disability. Like tinier smaller communities within the disability community. It’s difficult then for other people to understand what are we talking about when we use the words disability community? You know, is this something we as members of the disability community need to define outside of the medical diagnoses? Do we know how to talk with people about collaboration within the disability community to kind of bring those silos together? Can you talk about any work or a project you may be working on that closes some of those gaps between each of these smaller disability communities, within the larger disability community? Sure, I mean there was so much there that I wanted to comment on. So, the first thing I’ll say is that I really love Talila Lewis or TL Lewis’ definition of ableism. And her definition of ableism is when society and people value and place worth on a person based on their body and/or mind. And I think in that conversation around worth, right, and thinking that we’re not worthy, depending on the situation is, is really again inherently rooted in ableism. So, when we think about employers, I I think we really need to do that uncomfortable work of self-analyzing is am I ableist? Hahaha. And, um, and I think that in all of this anti-racism work, many of us are confronting deeply held beliefs that we have either perpetuated by the media or things that we witnessed, that we didn’t actually realize until it came to the forefront. So, often times what I tell people is that the same type of work that we do around how how we want to be more anti-racist, I hope we can do a similar level of self-reflection and self-work to really better understand what are the deeply rooted ableist beliefs that I hold around a person’s worth because of their body and/or mind. Um, so that was point number one. Point number two around wanting to be represented. When I was working, so I started my career at Goldman Sachs and then I worked at Bloomberg after and part of the reason why I I wanted to work at Goldman was because I knew they had a disability employee resource group. And, while I was at Bloomberg I helped co-found Bloomberg’s disability employee resource group. And, uh, and of course these groups are for uh people with disabilities and allies or or other employees who might touch disability in one way or another. I think being able to have those spaces is is how we can figure out how we can better retain our employees with disabilities, right? Because we need to have those mirrors, we need to have spaces in the workplace where we can go and talk to other people about their experiences or how to best navigate or ask for accommodations if that’s needed. And, if I think about why I started Diversability, I almost saw ourselves as the employee resource group for the for outside of the company we’re like the disability employee resource group for the world. Like the world is the company. Haha. You know? Um, and how can we create those spaces for us to come together and talk about that. I think in response to your question around um large organizations that address a very specific disability, that is very needed. Part of the reason why I wanted Diversability to be cross-disability and pan-disability is that we’re so fragmented by our diagnoses. And, I think, exactly to how you started this conversation, people who do have disabilities uh, choose whether or not they want to be part of the community or not. And that makes it complex, right? Because if we’re not all aligned, of how we feel about disability, how are we supposed to create solidarity and movement forward, right? And I meet, so I meet a lot of people and I tell them about my work with Diversability and I want to create a movement around disability pride, or celebration of a disability identity. And I’ll meet disabled people who say, uh well, I don’t agree with that. I don’t see my disability as part of my identity. In that case, even though I would I would consider them part of the disability population they are not my core community persona in Diversability, right? That’s why I I embrace this idea of meeting people where they are right? You know, the reason why our group is disabled and nondisabled is maybe you come in and you are disabled and you don’t identify or claim that identity yet, but as a function of meeting other people and seeing other people as either role models or I like to use the term possibilities models, and maybe you see a disabled person working in the corporate world really high up and really celebrates and takes ownership of their disabled identity. Maybe that’s the path you want to take and if you saw a person be able to be successful then maybe you might want to explore what it means to take ownership over your narrative. And meeting people where they are it’s this is what makes disability so exciting haha and an opportunity is because you have we have so many disabled people who don’t disclose and who don’t identify with the community. It does make it hard to uh to uh move things forward, but again, that highlights the diversity within the community. I will say, one of the things I have heard. I think I saw DREDF. Someone was speaking from this organization and they’ve done a lot of really great work around legislation, disability legislation, and moving things forward from a policy perspective. And, I asked, I said, I run this organization that’s really all about celebrating the diversity that exists within the disability space. How can we ensure that we’re reflecting that in policy? And, what they told me was, this is why we need more solidarity in the disability community, because if there are cracks in the legislation that you’re putting forward or your ideal policy, it’s not going to get passed, right? And, and, I think about even 30-years after the passage of the Americans with Disabilities Act, we’re still not able to recognize the economic empowerment of the of the entire community, right? And, we still have existing policies in place that make it legal to pay people below minimum wage, we still have policies in place and I believe it’s getting rolled out state-by-state, that say if you rely on disability benefits, you can only have $2000 in assets at any one point in time. Again, that’s changing with the passage of the Able Act, state-by-state. I think that again, um, if we’re still holding on to these legacy policies, which once upon a time made sense, but we’re seeing much more vocal disability advocates want to take action but we’re not able to create cross-disability or pan-disability solidarity, then it will take longer for us to achieve disability equity and justice. Yes. That was so well-stated. One of the things I wanna talk about was the solidarity in bringing legislation forward. So, when I worked at the National Multiple Sclerosis Society, it was a very interesting experience. There were people within the organization who also lived with MS but did not disclose. Well, I was very much about disclosing, given what I had been through leading up to that time. So, I disclosed and I was all on board about how do we move forward efforts for people with MS. And the first barrier that I ran into was the fact that the MS Society didn’t cover the injectable medication that’s usually the first medication you get put on is injectable. This is why it’s so important for people with disabilities or even that specific disability, to have a seat at the table. And I’ve gone to DC and to Sacramento for MS policy and legislation and one of my questions is why we are not partnering with another organization that needs. ALS. Why don’t we partner with ALS so now we’re going to the federal government, to our congressmen and women, to say hey, here’s two organizations; we both need this policy. We’re not going to get anything passed, unless there’s some joined efforts, because we’re putting forth piecemeal legislative and policy efforts between these organizations. So, I do agree with you, I understand the need for them, I also feel like we could all benefit from much more collaboration between organizations to put forth legislation that improves everyone’s lives within the disability community. One thousand percent. I think that this is something I see in other advocacy, other advocacy movements as well. There’s a lot of criticism of each other’s advocacy. I’ll I’ll say two points. There’s a lot of criticism of each other’s advocacy number one. Number two is I think because again systemically, we have been systemically limited, many of us still operate from a scarcity mindset and we want to transition over to an abundance mindset, right? Which is at the root of collaboration. You know, one plus one equals 15. The reason why I bring this up is because I think that what I am realizing and there was something that I heard another disability advocate say a little while back and she said, now is the best time to be disabled. And I would argue that today as we’re recording this is the best time to be disabled. And, when this episode goes live, that will be the best time to be disabled. And the reason why I say that is because I think we’re starting to realize how much more powerful we are and how much more influence we have when we actually do collaborate. And one of the things so, I know that when you and I originally chatted, we wanted to talk about some of the advocacy work that I’m doing as part of the San Francisco Mayor’s Disability Council and I remember when we had that conversation, I was like well, we haven’t really done that much. And, uh, we spent some time meeting earlier kind of reflecting on what our wins were from 2020 and I drafted up a letter to the Mayor about a year ago, asking if she could declare July as Disability Pride Month in San Francisco and if we could light City Hall in blue and white on the anniversary of the ADA and she did. Mayor London Breed did. I mean she signed proclamation and then the Board of Supervisors also declared July as Disability Pride Month in San Francisco and then we got City Hall lit, I mean that was a different office related to the Mayor’s office. But, when I was talking to another friend about that, another disability advocate, he said Tiffany, don’t downplay what that did for the city. Because what you did even if you think it’s small, it may have enabled other people who saw that small action of just writing a letter to maybe write their own letter about some advocacy thing that maybe they care about, right? And so I think there are all of these trickle affects, every single action that all of us who are vocal within the disability advocacy movement are taking right now. Even you creating this podcast who knows who’s gonna listen and that may empower them to go off and want to do something else. So again, I think I’m catching myself saying Tiffany, like, you celebrate your achievements and what you’re able to do in the context of the power that you were able to have as being part of this Mayor’s Disability Council, right? And I don’t think I would’ve been able to get that done had I not joined the council, right? And, and, I have a lot of things to say about the council and about how much more work we could be doing, but can’t I just celebrate the win of what we were able to accomplish, as that entity who did have the capacity to have that in line and be able to send that letter to the Mayor’s office. And I do think that that is absolutely empowering for other people. There’s a lot of work that we do, like you were just talking about, that we don’t stop and say okay, I did a really great job today, this could’ve given someone else power to use their voice. Sometimes we look at the larger, I don’t know, the larger job that we have right? As practitioners in this space and we get kind of overwhelmed because we’re thinking it could be better; I wanted it to be this; I wanted to make a bigger impact. I have also learned in my career that we don’t know how many individual lives we’ve touched, either, and that spreads. Those individual points of connection and conversation all spread to other parts of the community and bring us back together. There’s a lot of magic that exists within the disability community. I read Alice Wong’s Disability Visability and I was just reading an article that talks about this magic, that was on full display in this book. What do you see as the magic of the disability community? With the work that you do through Diversability? Mmmmmm, I love that. Um, I do believe in the disability magic. I mean, I think what it is is that we have learned how to survive and thrive in a non-disabled world. And another one of the New York Times’ op ed was written by Liz Jackson, and her piece was called, We are the original live hackers, and so we have learned how to hack our way through a world that isn’t built for us. And I think that the magic comes in when we are able to share. Because one of one of the things after reading that post and I mention this a lot about the original life hackers, is that we are life hacking our way, but we’re we need to do that at scale, right? So, one of the things that I read in the piece, she talked about someone named Jerron Hermon, who’s this really incredible dancer with Cerebral Palsy. And, when he goes to eat waffles, he asks for a pizza cutter because it helps him cut the waffles with one hand. And so I’m one-handed but I have a different diagnosis , but I thought that was so genius, but I had never thought of it, right? So, we’re all life-hacking. Um, but the magic comes in when we are able to be in community. And again, I think this is a beautiful way to kind of go back to what this conversation was about which is the magic really comes in when we realize how much potential we have in resource-sharing with each other, in sharing our individual magic with each other, and I really do believe that in community, we start to realize how much power and influence we do have to move mountains and hopefully, you know, the person who’s listening to this, that day is the best day to be disabled for them. Okay, so we are nearing the end and I want to ask one last final question before we say our goodbyes. What is a disability ally, and how can our listeners become one today? This is the change piece of the podcast. What can our listeners do today after listening to our conversation to become a disability ally? That is a question that needs its own podcast. I started something inspired by my friend. I have a friend named Nicole Cardoza and she started a newsletter called the anti-racism daily and um I uh I don’t have the writing chops or maybe I do, but I didn’t start a newsletter, but I decided to start some really short-from video series called Anti-Ableism Daily and every single day, I share either some fact that people need to know about or some language that’s outdated or some other action that we can all be better allies. But, I think to be a better ally, I guess I’ll say two things. One, please get to know as many disabled people as possible follow them on social media, engage with their posts, build relationships with them that are equal, right? When I created Diversabiltiy, again we are disabled and nondisabled, the nondisabled people who are part of our community are not volunteering for us. Because I don’t want them to feel good about themselves by just being our friends. I don’t want someone to feel like they’re volunteering to be my friend. I actually want to create equal peer-to-peer relationships of people who care about each other, disabled and nondisabled. That is actually how you change hearts and minds, is getting to know and and even I’m learning this because I feel like I existed in my own silo and I know I can be a better ally to my own community, as well. That was number one. Number two is, I think we really need to be more aware of the language we use when we talk about disability. So, if I think about the latest video of my anti-ableism daily, it was about how when I tell people that I’m disabled, their response is I’m sorry. And, you know, like, what what do you way to that right? And then people are commenting on my video saying well, should I say cool? And I’m like. Yeah, that’s fine right? Because what I’m hoping is that when you tell someone you have MS and I tell someone that my arm is paralyzed, they’re like coo, right? You even talk about it right, how you mention that you have a flare up and you move onto the next part, but that person is still hung-up on the MS, the diagnosis, and the flare-up. And we need to actively catch ourselves there right? I mean again, the language we use to talk about disability is so disempowering and that further perpetuates narratives about those of us who don’t have disabilities feel about disability and even those of us who are disabled feel about disability. That’s why we have so many disabled people who aren’t disclosing or claiming a disability identify, right, because the way we talk about disability is so disempowering as it currently exists. It absolutely is. Tiffany, I’m so happy that we were able to have this conversation; I really appreciate it and thank you. I’ve enjoyed every minute; I feel like we could go on and on. Maybe we’ll have to go back to; maybe in season 2 we’ll have to have a conversation about disability ally and that will be the whole conversation. Because I think that would be a great conversation for listeners to hear. Because even for those of us who have an invisible disability, I’m not always the best at advocating for myself with maybe family and friends in explaining that or using the right language. It’s something that we all can really work on each day. To our listeners, if you’d like to learn more about the work Tiffany is doing in the disability equity and inclusion space, please check-out the Diversability website at www.mydiversability.com. I know you have a large community on Facebook, as well. So, where can listeners find you on social media, Tiffany? Those two places are great places. We do we do have this Facebook community; nondisabled allies ae welcome Um and are encouraged to join because I think that, going back to this allyship point, we want people to listen to the conversations that we’re having because if you can more intimately understand the conversations that we’re having with ourselves than you can be an ally for us in the spaces that we don’t have access to. Yes, exactly. Tiffany, thank you again. I wish you the best day! I’m so grateful to have this conversation with you and I appreciate your time. For sure. Thanks, Sarah. Thanks, Tiffany. And once again to our listeners, thank you for spending your time with us and joining the Incluse This! conversation and movement. Incluse This! brought to you by Eye Level Communications, LLC. Eye Level is a California based woman and disability owned small business committed to having critical conversations at Eye Level that are necessary to move disability to the forefront of the greater diversity conversation. If you’d like to learn more about the work we’re doing, please visit the website @www.eyelevel.works. You can also email me directly with any podcast, episode ideas or questions and comments @sarah@eye-level.works. Remember to put your disability lens on when you look at the world and tune in next week for another stimulating conversation on Incluse This!, the podcast, that’s really a movement take care and be well.

Episode 3: Words Are Powerful GUEST: Jourdan Saunders, MS, CCC-SLP, Founder of The Resource Key https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/Incluse_This_S1_E3_Words_Are_Powerful.mp3 How powerful are the words we use? What effect do words have on how we interpret information? In this episode, host Sarah Kirwan and guest Jourdan Saunders, have a down-to-earth conversation about words, words, and more words. Listeners will walk away with a better understanding of how powerful words are, within the framework of disability, woke capitalism, relationships, plain language, getting comfortable in our conversations, the Americans with Disabilities Act (ADA), and much more. QUICK LINKS As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability. OUR GUEST: Jourdan Saunders, MS, CCC-SLP Jourdan Saunders, MS, CCC-SLP is a Speech Language Pathologist, Disability Inclusion Consultant, Author, and Resource Generator. She develops solutions to ensure people with disabilities are included and are making meaningful connections with brands. Jourdan is the founder of The Resource Key providing consulting services using innovative approaches, research based industry resources, and advising companies to ensure People with Disabilities are included, and making meaningful connections with brands. She is the owner of one of the largest SLP resources group with over 15,000 followers. Jourdan has written several articles for non-profit organizations, major magazines, and online resources. Her work has been featured in USA Gymnastics, American Speech Language Hearing Association (ASHA), MarketWatch, Association of University Centers on Disability, and Kennedy Center. TRANSCRIPT Hi, and welcome to Incluse This! This I’m your host, Sarah Kirwan. And this is a movement for disability equity. Today, we’re talking with Jourdan Saunders, and we’re talking about how powerful words are. Jourdan Saunders is a speech language pathologist, a disability inclusion consultant, author, and resource generator. She is the founder of The Resource Key, a business providing consulting services that use innovative approaches, research-based industry resources, and advising companies to ensure people with disabilities are included. And also making meaningful connections with brands. She’s the owner of one of the largest resources group with more than 15,000 followers. Jourdan has written several articles for nonprofit magazines, and organizations, and online resources. Her work has been featured in USA Gymnastics, American Speech-Language-Hearing Association, MarketWatch, Association of University Centers on Disabilities, and The Kennedy Center. Jourdan established one of the first resource websites for students interested in the field of speech language pathology, Future SLPs, which has received recognition worldwide. Recently, she created a program that infuses art and reading literacy skills entitled Design Read Create. Jourdan is the author of Our Reading Literacy Kitchen: Fresh Approaches to Target Reading Literacy Skills. And with that, let’s dive in. Welcome to Incluse This! Jourdan. I am super thrilled to be here with you today talking about words, words, and more words. Thank you so much for having me, Sarah. I am honored to be here with you on this podcast. And words can be used in a positive way or a negative way. So you and I met virtually last September, and I remember exactly why I got ahold of you. Because I all of a sudden got pretty active on LinkedIn, and I wanted to see who was posting in the disability, equity, and inclusion space. And I just remember seeing all of your posts that were very well done, well messaged. I completely understood what it is that your company The Resource Key does in this space. And I just really wanted to reach out to you and learn from you, which I’ve already been doing. And I’m just really looking forward to learning more as you and I continue to partner, and have conversations, and learn and move forward together in this space, and just do our best to bring disability to the forefront of that greater diversity conversation. During the first virtual meet and greet we had over Zoom, I remember using the word able-bodied. And then you used the word non-disabled, which kicked off this incredible discussion about words, the intent behind them, the power they hold, and the effect they have on others. And that’s really what led us to being here together today. Yes. For me, I have read a lot of information in how these words are used, really looking at the impact of these words. I use the word non-disabled because it is a neutral term. Anyone at any point can have a disability at any time. So I consider myself to be non-disabled. So I think it is important though, to read the history behind some of the words that we use. What happens when words change or things shift on an individual level sometimes, if we think words are negative and we should no longer use them, we want everyone to start using the new words immediately. But it’s not that easy sometimes. For example, I was reading an article from the New York Times. And in the article, it specifically stated how historians have traced America’s welfare system to England’s 1601 Poor Law. And in that, the word able-bodied is included in this law. I was reading this, I think it was about two days ago. And I think that’s interesting because 1601 let’s say, what is that? 400 years ago. Over 400 years ago. So I think that’s important to point out because able-bodied according to this New York Times article has been used for many years. And it’s hard to stop using certain terms sometimes because maybe on an individual level, we want someone to stop using the terms because we feel that it may be offensive. But then you look at the system, the structure, the history behind these words. And it’s not that simple sometimes when we look at it from the broader perspective. Also, able-bodied is still used in some government reports as well. So that’s why I think it’s important to listen to one another, understand how words are used in different contexts. Because even non-disabled has some controversy too. Because people with disabilities are a minority group. And may I add, one of the largest minority groups. So when we look at, I use the non-disabled. But if we look at I’m Black, and if someone were to say that they are non-Black, then it wouldn’t make sense in those contexts because we usually don’t say we are non-Black. So it’s never as straightforward as we would like it to be, but that’s why I think it ultimately comes down to continuing to have these conversations like we’re having and keeping the dialogue open. So I want to make something very clear before we move on, because I’m sure it won’t be the last time I say this throughout our talk. But we have to be willing to listen, communicate, be patient, and research on our own to delve into some of the words we use, why we use them, providing the context, what is the history behind them. And I think this sparks continued going dialogue, because just because we use these specific words today, does not mean we are going to use those same exact words one month later, two years later, or even next week. I think the important thing to remember in there is that it is also scary when we don’t know the appropriate terms to use, when we don’t know the right words to use. What you and I have talked about is that it is really important to just have the conversations, even if we are making those mistakes along the way. That’s okay. Let’s have the conversation because they are ever-evolving terms and words. So they’re going to change. And that’s fine. Then we’ll evolve and change with them. I’m glad that you expanded a little bit upon the able-bodied piece, because we will touch on that a little bit later. But I just want to talk a little bit about the history of the disability community. And historically, people with disabilities have been erased from mainstream culture, right? So those of us who are living with disabilities find these smaller, more supportive groups within the disability community. Because this is a space where we can feel free and comfortable to talk about our experiences and our feelings. For me, I found that space when I started playing wheelchair basketball. I was an assistant hospital administrator and public information officer for Rancho Los Amigos National Rehabilitation Center. It was really the first space where I could go and people understood what fatigue was. We shared some similar symptoms, day-to-day symptoms, but also had very different experiences with our disabilities. So I definitely feel like it’s a little awkward for me to talk freely and openly about what I experienced with my disabilities, because there’s a lack of understanding because we’re not educating well enough. People have a tendency to feel sad or sorry. Sometimes they’re just completely uncomfortable or uninterested. For me, it’s more that I’ll just pepper it into a conversation because I’m so used to it. Right? So I’ll just say, “Oh yeah, well I was diagnosed 10 years ago,” and I move on with the story. But I forget that for them, they stop on that and think, “Oh my gosh, I really need to address that MS. She’s sharing this with me, and I need to address that.” But it’s more for me just adding to the story, if that makes sense. Or adding context to the story I guess. But it usually turns into a conversation about when I was diagnosed, what kind of symptoms I have. And what their fathers, aunts, daughter, does for her MS which I should for sure do for mine. So if our intention is to make it possible for disabled people to find an increased level of comfort and acceptance in the wider non-disabled world, then we all have to get comfortable talking about disability, right? Including me. And that’s obviously much easier said than done, because it makes people feel anxious to think about saying the wrong thing like we just touched upon. So again, I’ll go back to when you and I first spoke, we both agreed that having the conversations and making the mistakes that we’re bound to make is much more important than not having the conversations at all. There are a lot of articles written about choosing words for talking about disability. We also see articles about the language of disability and disability microaggressions which are also commonly I guess within the disability community known as ableist things that people say. Before we move on any further, I just feel like some of our listeners may not be familiar with the term ableist. So I just want to start there and figure out what all this means. Jourdan, would you untangle this mess of confusion? Yes. What this means. What’s the difference between words I use, or the language I use, or what’s a microaggression against people with disabilities? Dictionary definition of ableism is discrimination or prejudice against individuals with disabilities. So it could also be systematic exclusion, oppression of people with disabilities. And this is often expressed and reinforced through the language that we use that could be demeaning, or looking down on others, thinking that someone is lesser than someone else. So an example of this would be, let’s take the word confined. Ableist language could be, “She is confined to a wheelchair.” Someone can say instead, “She is a wheelchair user.” So that’s giving you an example of ableist language. And sometimes the context that we may hear this word being used, and how that could be taken as something that could be demeaning, or something that makes someone feel lesser. Crazy is another word that we use a lot on a daily basis to describe a number of different things. But that’s also ableist language. So instead of saying, “My family is crazy about football,” maybe saying something like, “My family loves football.” So those are some examples regarding ableist language. So it’s very interesting when you talk about the wheelchair user. That’s one thing that I’ve had to learn. The wheelchair is really the extension of the person and a representation of independence. Right? I do find it hard though when I read articles where some people are talking about disability words, and some people are talking about disability language. Now words are obviously just smaller pieces of the language that we use. How do you define those? Why are they different, and why are they both important? Yeah, that’s a great question. So words are ultimately like you said, the smaller units of the language and a whole, as it’s all related, I should say. So I think it’s important though, to look at the words first to understand the meaning behind when we use these different words. And then when you’re using it in your everyday language, I think it’s important to look at the context surrounding how you’re using these words. Because that ultimately can be factor of all right, I have this word. Now I’m going to use it in the course of the language and how I talk around my friends or in the community. And all of those things look different based on the context surrounding how we’re using them or the way we’re putting together, the syntax of how we’re putting together, using these words in the context, just like the examples I gave. And how much of an impact the word can have when it’s used in different settings, or the way it’s used when we’re discussing different things. So I want to touch on microaggression, because I know we talked about ableist language, ableism, all of those different pieces. So microaggression is something that it’s subtle. It’s unconscious maybe, or the person maybe unintentionally is expressing something. But it takes on many forms in different settings, but it can be prejudice or discrimination to whoever you’re talking to. And you may not even realize you’re doing that. So an example for me is I have naturally curly hair, and I remember going to an interview. And someone, I don’t think they intentionally meant it, but it was a microaggression because someone said, “Are you planning to wear your hair like that if you start this job?” So that’s an example of a microaggression. Maybe they weren’t intentionally, I don’t know if they were intentionally meaning it, but it was a microaggression. And it was discriminatory because it was talking about my hair. And maybe there’s no other ways that I could wear my hair. So within the disability community, I think it goes back to using the word confined maybe or using the word crazy. Crazy is one that probably sticks out the most because it’s something that we’ve probably all at some point used that word not intending to hurt someone, but it could be hurtful in a sense of if someone has any type of mental health, that’s a term that a lot of times crazy is loosely used in everyday conversation. And maybe it’s because we haven’t taken time to think of a different word, or maybe there’s not a word that came to mind at the time. But that could be taken as well as a microaggression. Yeah. I think that I use the word, would I just say, “That’s so crazy.” That is a very common thing that in the past I have said. And that’s one thing I’ve really had to be cognizant of. I struggle with depression and anxiety. I feel like that’s something that I need to be more cognizant of as well, because those are hurtful words. I’ve used crazy as well. I think just in the context of like I said every day. And it has made me, as I read more and delve, it makes you more conscious and it makes us more when we do the work, and take the time to read, and listen to others, I think it makes us more intentional when we’re having these different conversations to choose a different word. Absolutely. And that kind of goes back to the first episode that I had with Molly Bloom. And we were talking just about the intention behind words and how we can choose to be more intentional with the words and the language that we use. Now would this be a microaggression if someone says to me, “Well, you don’t look like you have a disability”? Yes. Yeah, that’s one I’ve seen a lot too in terms of when I’m reading different things. There’s a lot of articles about, that’s a very one up there in terms of what’s crazy as well. That is just almost a very marginalizing term or dismissive I guess in a way. It’s a dismissive term. So something that’s very real to you and part of your identity is just so flippantly dismissed. So yeah, those words do have real meeting and real power. And before we move on, we’ve talked a lot about ableism. And I want to talk a little bit about one more term, which is something that I’ve just learned about recently, which is anti-Black ableism. And I’ve done a lot of research with Colin Kaepernick’s media group around disability justice and policing in prisons. There is one journalist, her name is Talila A. Lewis, and she writes a lot of the articles for his media group. And she says that anti-Black ableism is redundant and contradictory simultaneously, because ableism and anti-blackness are mutually inclusive and mutually dependent. So, you can’t have one without the other. And you can’t adjectivally modify one with the other. Because where one is, they both must be. Each oppression does modify how a person experiences the other oppression. So they do modify the other in the literal sense. Now I think this is really interesting, and it goes back to the conversation that we’ve had about intersectionality and intersection of disability race, disability gender, disability sexual orientation, etc. Do you have experience around the anti-Black ableism comments, maybe those microaggressions that you could share with us so that we could identify or help to see those more in our daily lives so that then we can be more intentional with our words? So I wouldn’t be able to speak on this. And I say this because I think you were the first person that brought this word up. And I didn’t know what specifically it meant in the context that it was used. So I did some research. I was reading some of the other writings that she’s done. And one of the writings that she said it quoted, “I know that there is something more needed to make this very unique experience that Black people have with ableism more clear. Still, I believe anti-Black ableism does not succeed in achieving the necessary clarity, and that it may cause more harm to the effort being sought by those using the term.” So it sounds like she was the first person to use this term. And I could be wrong. You can correct me if I’m wrong. Because I haven’t seen much research, or much information, or enough conversations to be able to describe what it specifically means. I think her coming on or her having a conversation about what it specifically means, because even that is her words verbatim in the writing that I was reading from her. So I think we need more clarity, or I would need more clarity around this term before I would be able to actually use it and be able to provide you more information on how important this term is and what it means. Because for me, what this means just from a whole is that we need more people saving a seat at the table for Black disabled voices to share their experiences. And also to add on what you were saying, we need to be talking about intersectionality. And intersectionality as it relates to disability justice. One of the other things that I love that she brought up in another piece was she said, “We must find ways to name how ableism is uniquely felt and experienced by Black people. Or we are not doing justice to how the long-term, inescapable, and inextricable bond between racism and ableism places Black non-disabled, Black disabled, and Black people who are labeled disabled in mortal danger with no recourse.” So I would love to read more and continue to follow this term, but it just seems that there’s not enough information. And she was stating that the people that are using the term may not be using it in the way that she initially had I guess envisioned the term being used. I guess I didn’t realize that that was a term that she had brought forth. I think it’s really interesting, and I would love to hear more from her on it. And I actually invited her to be a guest on the podcast, but her schedule is too busy. So- That would have been awesome if at some point maybe I don’t know, or if she comes out with more. I could be completely wrong, like I said, but I couldn’t find much on the term outside of her posts on her website. Yeah. Well, that’s all that I found. That’s exactly what I found. So yeah, I’m going to have to do some more research on that. But I do think it is a very unique experience. When you look at the layers of intersectionality, how one experiences each of those oppressions in a different way, but all in relationship to one another. As you had stated earlier, and I kind of want to go back to this. The disability terminology that we use, like we’re just talking about anti-Black ableism. That may be something that Talila A. Lewis has coined. Maybe people are using it appropriately or differently than how she had envisioned it or imagined it. We’ll have to do some more research around that. But when we look at other more common terms like neurodiversity or neurodiverse, disabled people, or people with disabilities, able-bodied, or non-disabled, accessibility, usability, or inclusion, how do we effectively choose the words and language? And you touched on it a little bit previously, but how do we effectively choose with our intentions, the language and the words that we use so that we can actually drive inclusion and equity for people with disabilities? A lot of times when we have these different words that are created, and I think it kind of goes back to what we were talking about earlier. They’re used at different points in times. And then when they are no longer representative of the words that we may use currently, it takes time for shift to occur. And a lot of times, that shift is not aligned with how quickly we want the words to not be used anymore. So it creates this disconnect because on one hand, we are saying these words should not be used, or to use this word instead. But on the other hand, these words are still used in definitions or important government documents. So for example, I used to use the word special needs. This was years ago. So it was right after I got out of grad school. I wrote an article. One of the articles was about Incorporating Children with Special Needs into Gymnastics. And that was the exact title. Now, if I were to have written that same article, I would entitle it Incorporating Children with Disabilities into Gymnastics. I’m aware of that because I’ve continued to keep up on different research words, listening to people telling me their viewpoints, and just doing my own research. But so according to the National Center on Disability and Journalism, special needs popularized in the U.S. in the early 20th century during a push for special needs education to serve people of all kinds of different disabilities. So now though if you read on the website, the word special in relation to those with disabilities is now widely considered offensive. So these are the things that, and why it’s important to continuing to have these ongoing conversations. Accessibility looks different when you’re out going to a restaurant, and you need access to, if you’re a wheelchair user and you need a ramp to access to get inside of the building. But if you’re online, it could be different in terms of digitally how you’re accessing a website to shop. So I think we have to look at settings, because words take on different meanings when you’re in different settings or locations. They take on different meanings depending on who you’re talking to. Right? So if I’m writing a report, I may still need to use able-bodied, or special needs, or special education, or something along those lines depending on the requirements. But if I’m out in the community with a family or something like that, and they’ve already shared with me they don’t like it when I say, “Your child with special needs.” They want me to say disability, those are all of the things why it’s important to have these ongoing conversations and why it’s important to look at more than just the word. We have to look at all the different things that surround the words that we use. And the other thing is the Americans with Disabilities Act requires state and local governments, and businesses, and nonprofits who serve the public to provide an effective disability communications plan. Right? This basically means that whatever these entities communicate, whether it be written or spoken, has to be equally clear and understandable for people with and without disabilities. So as a former hospital administrator and public information officer as I said before, we called this plain language. We always said plain language works best. And recently, the nonprofit investigative news organizations, ProPublica, which I actually think you shared this article with me. They launched an experiment using ultra-accessible plain language in stories about disabilities. Can you help us to understand what plain language is, and how would we incorporate this type of language into our personal and professional communication styles? So essentially, plain language is keeping it simple. It’s communication. Anyone can ideally be able to understand the first time they read or hear it. It’s accessible. It reminds me of when I was working in the school systems, we would sit in IEP meetings or individualized educational plan meetings. And if we’re talking to parents, there’s specific terms and the speech language pathology world that a parent may be unfamiliar with because they’re not in the speech language pathology field. So we needed to make the language or all the information and the words as simplistic as possible, so that they could understand the important information that we were sharing. We can look at different industries, and how in specific industries there’s acronyms or words that you may use that may mean something completely different in a different industry. So when you’re communicating to someone that may not be familiar with your industry or the words that you’re used, you’re going to have to use some other type of words to make it so that the person can understand what you are talking about the first time around. Because of not, it becomes confusing. And ultimately, you could lose the person that you’re talking to. So plain language is ultimately about keeping it simple so that anyone that picks up a document or anyone that’s listening to you can ideally understand what you’re talking about. As you touched upon currently, there are different industries and organizations who use different terminology when referring to and writing about disability. You and I learned during this process of collaboration and partnering, that the Associated Press, the American Psychological Association, and the Modern Language Association don’t publish best practices or standards for effective disability communications. The only style guide that you and I were able to find was The National Center on Disability and Journalism NCDJ at Arizona State University. With a lack of clear standards and everyone using different words, disability, inclusion, and equity practitioners find themselves in this constantly evolving space. How do we overcome these challenges? I think my initial question was, would it be better to standardize the terms across industries? Is that something that we should be pushing towards? Is it better to have a variety of terminology because it’s really specific to each industry? What are your thoughts? I think standardizing is always beneficial or having different systems in place. But just like anything else, these things change. Ultimately, we have to continue to stay flexible to be able to shift. It’s just like if you’re getting professional development courses on an annual basis, you are having to stay abreast of what’s going on maybe in your field or things of that nature. So it’s definitely nice to have standards because that’s a great starting point, but it’s just as important to take the time to educate yourself and listen to people with disabilities, listen in the community. There’s a lot of different tools I know that we’ve talked about, and you shared one of them. With social media and all of these different things, hashtags, and alternative tax or alt text. All of these things are important as well. So if we’re talking about standardizing, some of these are great ways as well if we’re looking at social media. And a lot of times, we have these different features. So alt text is on Twitter, LinkedIn, Facebook. But if we don’t know what alt text is used for, and if we don’t know where to find it, and we’ve never even heard of it, there’s where that education piece comes in terms of continuing to educate and share this information so that we can be more aware of how we can make tools more accessible and how we can be more inclusive. You and I talked a lot about accessibility on social media platforms. And one of the things that I thought was really interesting, and I’m going to touch back on this a little bit more, is the hashtag, the use of hashtags. So I didn’t realize that when we do hashtag everything lower case, that when someone has an e-reader that may read that article to them, it will jumble up that message. Right? So if I say #eyelevelworks, it will come out to them hashtag [inaudible 00:35:01]. Whereas if we capitalize each individual word, so eye capital E, level capital L, works capital W. Then that e-reader can actually read that statement to them in a way that they can understand and process, which I think is really cool. So then we did some research to find out, would that change the algorithms, or the search, or could people not follow it? But it does not make a difference. But yet, we still find that when we initially go to type in that hashtag, it comes up and auto-populates automatically to lowercase letters. To me, that seems like something that we could easily make accessible if we just auto-populated those with caps. Before I answer that, I think you may have meant screen reader. And that’s why we have these conversations, right? We said, let’s have the conversation. I said e-reader, it should be screen reader. We need to have these conversations, and be okay and vulnerable to make mistakes. Exactly. Yes. So what you were saying about the hashtags, I am not sure how many times it takes before it’s populated into the system. So that’s why I would think it would need to be something manual that would have to be done behind the scenes. But I’m not sure of all of those things. Because probably not enough people are capitalizing, because I didn’t even realize that myself until we started delving and having this conversation. So it has to be more people that are using it, or I imagine Twitter or LinkedIn and all of those other social media outlets have to go in behind the scenes and add that so it will start to populate that way. The other thing we talked about is website accessibility. For anyone listening that’s not familiar with a screen reader, so the screen reader is an assistive technology. A type of technology that assists a person who is blind or visually impaired to use their computer. So that’s what a screen reader is a form of assistive technology. So if you don’t have certain things like alt text or alternative text, which is the description of pictures. So if you post an image on Instagram let’s say, there is a feature in advanced settings, and you can Google how to add alt text. There’s a feature in advanced settings where you can add alt text. And what you would do is you’re going to type a description of the image that you’re going to post. And it’s conveying the main point of the image. What is the image showing? What’s the overall main point of the image? So that’s why it’s important to have these different things in place, because we want everyone to be able to access the information that we’re providing. And there’s many other people as well that may use a screen reader for assistive technology. So we want to make sure no one’s left out when we’re posting pictures or any of the other things that we do online, especially with everything being online now. Everything. It’s everything. It really is. It really is everything at this point, I feel like. And these are pretty, relatively simple things that we can do each day. Watch our hashtags, add alt text. I’m guilty of that. I need to go back into a lot of my posts and actually add alt text. Because I wasn’t aware of the need for that accessibility tool either. So it’s good for all of us to learn. Again, have these conversations and learn. And again, we’re being flexible, right? We’re learning new terminologies. We’re learning how to refer to things, definitions of words, all of these. One of the things that you and I talked about is the importance of collaboration in this space. I think I want to kind of tie that into the building of trust, also in this space. Because when we first started talking about speech language pathology, you shared with me that it really is taught from a medical perspective that somewhat excludes the personal patient perspective and that experience. But we know that trust and collaboration, right, even between a patient and provider, is so extremely important? I was recently at a neurologist visit, and I needed to get fatigue medication filled, and I needed to go through my MRI results. It was a list of things. I’m very organized. I have a whole list. So I feel like when I come in the door, they’re already kind of prickly paired because I’ve over-prepared, I’ve researched, I’m a self-advocate. When we receive different words in language and even body language from our providers, a trust is betrayed. For example, my fatigue medication is a controlled substance. It’s used for ADHD consistently, Adderall. And it’s used for fatigue for people with multiple sclerosis. It has been so difficult for me just to get this prescription filled given the nature of it. I felt very much like a drug seeker as I was asking my own provider to refill this prescription for me. Being put in that situation where you’re constantly defending yourself and you feel defensive, and shameful, and guilty that you’re asking for this, and you’re not getting what you need. So we talk about that trust, right? And that trust for me that day was broken. When we look about the work we’re doing, trust is the most important part of this work. And you bring this perspective to the work that you do with your company, The Resource Key. And you are actually bringing this perspective to the world of academia, because you have talked about how we effectively build trust in this space. Can you share with our listeners work that you do in that area? I think it’s really important. Yeah. So the overall goal at The Resource Key is building inclusive and impactful brands through inclusive marketing and business coaching services. So that’s the ultimate goal. And the priority is making sure that people with disabilities are included, and making connections with these brands. Okay? So we’re looking at the inclusion part, and the accessibility piece. So through all of this work, we’re building community, right? So I think that’s one of that most important things just in general. In businesses, in any type of setting is the community that you are building through the work that you are doing. So it’s relationship building. I have reached out and created a team of incredible community experts that I work with. And that piece is really important because it’s taking the time to listen, to learn from a different perspective outside of my own. So The Resource Key community experts provide valuable resources about inclusion and accessibility in the community, from their first person experiences. They also provide their industry expertise to contribute important information about why disability inclusion is important across all industries. So they’re all in different industries ranging from modeling, to life coach, to law. So I think it goes back to what we were saying in terms of the plain language. Because sometimes, what happens and why you’re able to communicate maybe better with one person than the other person is surrounding the words that we use. So that’s why it was important collaborating with them, because they already are familiar with the industry terms as well. So they’re able to have those conversations within their industries using the language that is familiar, while embedding those pieces of how important it is with inclusion accessibility and including people with disabilities. So the work that we do is based on branding, marketing, and all of those different things. But the most important work that I think we do is we’re building and creating these safe spaces to cross-collaborate with other businesses across industries. All of these different things that I think are taken for granted sometimes when we are building the financial part as important, because it’s your livelihood and all of those things. But the relationship part I think is very important, because that is what’s going to continue these important conversations. And it’s also creating those spaces where you feel safe. They always say it takes years sometimes to build trust. But it can take one day or a few words to lose that trust. So I think it’s important that we continue to create these safe spaces and we continue to build these relationships so that we’re also building stronger brands and stronger businesses as well. I love that. I think it really ties into what you and I have talked about experience in this space, whether it be professional, or personal lived, or otherwise. We’ve also talked about the importance of active listening, empathy. And I think these are all very important as we build trust in this space and important as we cross-collaborate into different industries, because the words that we use are different in each industry. Aligning those all to equity and inclusion is what I really like about what you’ve said, because those terms are going to be different. People within the industry have that experience. And if we can align with that to ensure that inclusion equity piece, that’s the most important. We build that relationship, and we just build a larger movement to bring disability to the forefront of the greater conversation that we’re having around diversity, equity, and inclusion. Which often leaves disability completely out of the mix. So as we’re wrapping this up today, we’ve talked a lot about words, right? We’ve talked a lot about what we say in the context that we say it. And we also know how long we say something has an impact, right? That messaging, that consistent messaging has an impact. Using those words consistently over decades has an impact on people and the oppression that they face. Living with a disability, being a person of color with a disability, those experiences are all different and multilayered. So it really helps when we understand how the words that we use may impact those around us. Sarah Kirwan: So as we wrap this up, what do you want our listeners to take away from our conversation today that they can take into the world and start making change, don’t have to have a big platform or a company that’s doing this work? What can we just do in our daily lives? Yes. So you just brought up a great point. I always say my definition that I always think of inclusion is inclusion in an action, and it’s included in our daily habits, right? So I think one of the things to keep in mind is of course the most important thing, hiring people with disabilities, including them on your boards and in leadership roles. Be patient. Patience is just so important I think with any of this. You’re going to get frustrated along the way, I’m sure. And also too, you may not get the response when you’re trying to learn new words. Jourdan Saunders: Because what happens a lot of times is we’re pumped up, we’re ready to learn and listen to other voices. And we may ask someone the wrong thing, and they may say it in a way that is offensive to us or hurtful. But you have to understand too, the context behind that. People with disabilities have been fighting for years and years for quality equity, all of these different things. So just because you may not get the response or the excitement that you want when you’re asking about words or you say the wrong thing, doesn’t mean that it means to stop doing that important work and having these important conversations. Because there’s a lot of emotions behind all of this, right? So we have to make sure that we continue to, even when we don’t get the response that we may be looking for, I think it’s important to keep going, right? Jourdan Saunders: Because we are all going through our own word journey. And along each person’s journey, you’re going to meet people that may be on the same page as you than others. So you may describe that moment as, “Oh wow. They just get it.” But we have to be 100% clear that not every person we encounter is just going to get it and be able to be up to date on the current shifts, or the changes in words, or the language that’s occurring at a rapid rate. So it is imperative that we’re intentional and that we’re listening. Jourdan Saunders: And being intentional about inclusion, right? So I think it’s important to save a seat at the table for people that don’t look like you, or have the same perspective as you. So that saving that seat, it’s intentional, right? The person’s not just pulling a seat up at the table, you’re saving them because you want to engage. You want to have these conversations. So I think that’s important. The small things that you can be doing. Say hi, wave to people that you usually may avoid because you’re uncomfortable or you don’t know what to say. Start by waving, acknowledging them, saying hi. And maybe you see the same person every day, and the person may you sign language to communicate. You could learn a sign for how to say hi, or how are you doing? Those are different, small, actionable items that can be incorporated in your daily life. It doesn’t have to be big things to start out with, because the small things are just as important as the big things. Jourdan Saunders: I think it’s also important to educate young people. Because they’re watching, observing everything. And they are learning from us as well as they’re doing work too in educating. Jourdan Saunders: I had a student years ago. And one of the things I’ll never forget is I overheard my student talking to another student and they said, “I don’t understand why just because I’m blind, people always get nervous using the word see and look in conversation when speaking to me. I think it is so funny because I hear it in their voice that they’re nervous saying those words. I always have to reassure them that I am blind, but I still use those words too when referring to things in my environment.” And I thought this was so powerful because it’s like that education piece just from being educated too, just by being a bystander as well. You may overhear conversations like that just in your daily routine. So you can take those things in as well. Because a lot of times, we’re not going to say certain things if we’re in uncomfortable settings. But if you’re talking to a friend, in that case the student was talking to a friend of theirs. You’re going to say some of these things that are just as important as the sitting down part as well with people with disabilities. Jourdan Saunders: So we have the power to use our words to make a positive impact, to bring about positive change, and most importantly, to build up community. So if you remember nothing else that we’ve talked about, I think it’s important to remember that we do not need to get stuck on which words to use that we freeze up and don’t do anything. Because there’s so much work to be done to continue to move these important conversations forward about diversity, inclusion, accessibility, and equity for all. Sarah Kirwan: I think that you said that so beautifully. When I first started playing wheelchair basketball and I first started working at Rancho, the hospital, I would find myself feeling very awkward saying to a friend of mine who’s a wheelchair user, saying, “Hey, you want to run over to Starbucks,” or, “You want to walk over to Starbucks and we’ll grab something?” And you almost find yourself wanting to say it. And then you try to say or roll, you know what I mean? You’re like, “Do you want to just go there?” So the comfortable thing and the great thing is when we build up this trust in this space and we can feel comfortable having these conversations where they can just laugh at me and be like, “Yeah Sarah, it’s fine. Just say, ‘Do you want to walk over there quick?’ You don’t have to think about it for 10 minutes before you say it.” Sarah Kirwan: So that’s something that we really need to take into consideration. Because people do pick up on your body language or your hesitancy to say something. I think I just hesitated as we were speaking on this podcast. It was about the screen readers. Sarah Kirwan: Anyway, the other thing, the other story I want to share really quickly, this was a big learning opportunity for me. I had a client in Colorado, intellectual and developmental disability service provider. And I was business development with them. And I had spent a lot of time with physical disabilities, not so much with IDD, intellectual developmental disabilities. So I hadn’t been around this community as much. But I was really learning a lot, I was engaging, and I was really enjoying the people, and getting to know them, and all of that. Sarah Kirwan: So I think I’m really getting this, right? It’s been a few months and I’m getting into this. And one day I stop at Target I think it was on the way home from meeting with their CEO, and I’m on the way home, stop at Target. And I go in. And I see a woman with an adult child with IDD. And he starts throwing a fit. And you could tell that his mother was extremely embarrassed. She didn’t really know kind of how to handle it. I was also in the aisle at the same time. So what I did, how I handled it was that I actually went into a different aisle. And my thinking behind that was I think that she already feels uncomfortable. So I should go into the other aisle to give her some space with her son. I was thinking it was a very respectful action or behavior that I did. Sarah Kirwan: Flip side of that, as I was driving home later, I was thinking to myself I wonder if I made her feel more ostracized and more uncomfortable because I didn’t acknowledge. I didn’t say hello. I didn’t say anything. So I started to think about how my lack of words and using my words to include somebody made an impact that day. And when I talked to the CEO the next day, I asked him, I said, “What should I do better in the next situation?” And he suggested, and some of the parents suggested that I could say, “Hey, you got this.” Or, “It looks like a hard day, but you’re doing great. We all go through days like this.” As opposed to not acknowledging or having that conversation. Sarah Kirwan: So I think having some self-awareness is really important. I think we need to ask those questions and really be intentional with our words and our actions. Today, we were talking more about words. But yeah, I just love all that. You summed it up beautifully, what we were talking about today. And I just am so thankful that you’ve been such a support in this process. There have been times where I literally couldn’t figure out the technology, or couldn’t find the right guest for this, or I didn’t feel the inherent intent behind the podcast was upheld. So I changed the launch date. There were a lot of change in evolution throughout this podcast. And I just feel like you have supported me. And I’m just really grateful. And I thank you for being here with me today and sharing all of your knowledge and your insights that you have, because it’s incredible. Sarah Kirwan: I want to tell our listeners, if you’d like to learn more about what Jourdan is doing in this space, then please check out The Resource Key website, which you can find at www.theresourcekey.com. And Jourdan, is there anywhere else they should look for you or for The Resource Key. Jourdan Saunders: That would be the best starting point. If you’re on LinkedIn, that’s how Sarah and I met. I’m on there every day posting, and continuing to learn, and do the work myself to research and continue to inform myself. So yeah, theresourcekey.com is the best place to go. And I want to thank you Sarah so much for having me on and for our continued conversations that we have had, and just for being an incredible person that you are. And also doing the important work that you continue to do. I’m very appreciative of the work that you’re doing. I’m appreciative to know you, and just continuing these conversations. Sarah Kirwan: That was incredible. And I really appreciate you saying that. And I think that it’s kind of funny. I don’t know if I told you this, but I kind of think to myself on LinkedIn, what would Jourdan do? Jourdan Saunders: Overthink everything. Sarah Kirwan: So I look back and I’m like, “How did Jourdan alt text this? How did Jourdan post this? What hashtags did Jourdan use?” So it’s been just incredible. Jourdan Saunders: Yeah, it really has. I’m so glad we met. Sarah Kirwan: It’s been just fun. Right? It’s like for everyone out there listening, I’m trying to get my LinkedIn game up to Jourdan’s level. I’m on it. Man, it’s incredible. Yeah. We’ve had a great time. And it really has been LinkedIn. And now I feel like I just want to hug you. And I feel like I can’t wait to meet you in person. Jourdan Saunders: Gosh, the amazing things that virtual video calls can have. It feels like I know you and we’ve hung out. I feel like that when we do meet in person, it’s just going to pick up wherever we left off. Sarah Kirwan: Totally. And I can’t wait. I really can’t wait. I know that we will continue this conversation. And maybe you will come back with us and talk about words are powerful around disability justice. I would really love that. So I hope you consider that. Jourdan Saunders: Yeah. So I feel like words can have multiple parts. Sarah Kirwan: Yes, yes. And we have seen that firsthand. So I look forward to continuing the conversation. Jourdan Saunders: Thank you so much. Sarah Kirwan: And once again to our listeners, thank you for spending your time with us and joining the Incluse This! Conversation and movement. Incluse This! is brought to you by Eye Level Communications, LLC. Eye Level is a California-based woman and disability-owned small business committed to having critical conversations at eye level that are necessary to move disability to the forefront of the greater diversity conversation. If you’d like to learn more about the work we’re doing, please visit the website at www.eyelevel.works. You can also email me directly with any podcast episode ideas or questions and comments at sarah@eyelevel.works. Remember to put your disability lens on when you look at the world, and tune in next week for another stimulating conversation on Incluse This!, the podcast that’s really a movement. Take care and be well.

Episode 2: Inclusion is Bullsh** GUEST: Leroy Moore, Founder of Krip Hop Nation https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/Incluse_This_S1_E2_Inclusion_is_Bullshit.mp3 Guest Leroy Moore, founder of the Krip Hop Nation, joins host Sarah Kirwan, to talk all about what the words Disability Equity and Inclusion mean, and how they’re subjective and based upon interpretation. We discuss Disability Justice, as it relates to policing and prisons, along with Disability Policy and Leadership, Black Artists, the historical exclusion of people of color from the Disability Rights Movement, and much more. QUICK LINKS As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability. OUR GUEST: Leroy Moore Leroy F. Moore Jr., Founder of the Krip-Hop Nation.  Since the 1990s, has written the column “Illin-N-Chillin” for POOR Magazine. Moore is one of the founding member of National Black Disability and activist around police brutality against people with disabilities.  Leroy has started and helped started organizations like Disability Advocates of Minorities Organiztion to Sins Invalid to Krip-Hop Nation. His cultural work includes film documentary, Where Is Hope, Police Brutality Against People with Disabilities, spoken-word CDs, poetry books and children’s book, Black Disabled Art History 101 published by Xochitl Justice Press.  His graphic novel,  Krip-Hop Graphic Novel Issue 1: Brown Disabled Young Woman Super Hero Brings Disability Justice to Hip-Hop was published by Poor Press 2019 and 2020 under Poor Press Leroy also published Black Disabled Ancestors. Moore has traveled internationally networking with other disabled activists and artists.  Moore has wrote, sang and collaborated to do music videos on Black disabled men. LEARN MORE: www.kriphopnation.com http://www.blackdisability.org http://www.poormagazine.org/krip_hop https://twitter.com/kriphopnation https://www.facebook.com/LeroyFMooreJr https://soundcloud.com/user-147187058/building-process-to-get-to-krip-hop-nations-politics TRANSCRIPT Sarah Kirwan: Hi, and welcome to Incluse This! I’m your host, Sarah Kirwan and this is a movement for disability equity. Today, we’re talking with Leroy Moore and we’re talking about inclusion. Leroy F Moore Jr. Is the founder of the Krip-Hop Nation. If you haven’t checked them out online, you absolutely should. Since the 1990s, Leroy has written the column, Illin-N-Chillin for POOR Magazine, he’s also one of the founding members of national black disability and an activist around police brutality against people with disabilities. Leroy has started or helped to start many organizations, such as disability, advocates of minorities and Sins Invalid. His cultural work includes film documentary, Where is Hope, along with police brutality against people with disabilities. He also produces spoken word CDs, poetry books, and children’s books along with Black Disabled Art History 101. His graphic novel Krip-Hop Graphic Novel Issue 1 Brown Disabled Young Woman Superhero Brings Disability Justice to Hip Hop was published by Poor Press in 2019 and 2020. Under Poor Press Leroy also published Black Disabled Ancestors. Leroy Moore has traveled internationally networking with other disabled activists and artists. He has written and collaborated to produce music videos on black disabled men. We are so thrilled to welcome Leroy Moore to Incluse This today. Hi, Leroy and welcome. Leroy Moore: Hey, how are you doing, thanks for having me. Sarah Kirwan: I am so excited to have you here today to talk about inclusion. Leroy and I met virtually a few months ago as I was planning and strategizing for this podcast. And I really wanted to get his thoughts on the premise of the podcast and the topics for the show. And as a public administrator by trade, I was really laying it out there, how much we need equity and inclusion, how I’ve dedicated myself to the cause, how much I believe in it. And then when I was done with my rant, Leroy responded with, “Inclusion is bullsh** Sarah.” I was silent for a few minutes, as I thought about what he was saying, “Is he really saying this is bullsh**. Do other people with disabilities, see this term and think it’s bullsh**? Do I need to re-strategize and change all of my business messaging? Do I need to change my mission statement?” I went down a rabbit hole and as we talked, I started thinking about how many different ways of thinking about inclusion there really are. So, Leroy with that, I kind of want to start with why is inclusion bullsh**? Leroy Moore: Yeah Inclusion is bullsh** because people with disabilities have always been here, you know, so if you go back to the story of Moses in the Bible, Moses had a disability and God gave Moses an accommodation without the ADA, of course, haha, his brother. So you know, so thinking that story is like people with disabilities have always been here. So I see inclusion as, as, as bullsh**. It’s like just follow the law, implement law, and let’s do it that way. Because we’ve been here, we’ve always been here. It’s not up to you to open up that space and make this inclusion happen. It’s the law. So do it and let’s do it. Sarah Kirwan: I like how you said it’s not up to you. So let’s talk a little bit about some historical movements that have tried some successfully, some unsuccessfully to move the needle on inclusion for disabled folk in our country. The two that come to mind for me first are the individuals with disabilities education act, and the Americans with Disabilities Act or ADA. So the IDEA was previously known as the Education for All Handicapped Children Act and was signed into law by president Gerald Ford in 1975, 2020 actually marks the 45th anniversary, which I didn’t know. I think it was very much overshadowed by the 30th anniversary of the ADA, which we’ll get into in a minute. But can you tell us about your experience with the IDEA when you were growing up? Leroy Moore: Yeah, so the IDEA was that my mother used it to get me out of, um, special education, you know, I was, um, you know, segregate back then, you know, so my mother used the law to get me quote unquote mainstreamed, and um you know, because she took I think it’s the East Hartford Connecticut Schoolboard to court, they quote unquote mainstreamed me mainstreamed me into quote unquote regular classes with a teacher’s aid, and I flourished because of that. And, um um, you know, we gotta see the history of IDEA, because when Gerald, when the President, President Ford signed it into law, he signed in a secret place, it wasn’t a public ceremony like the ADA, and he said yeah, that he’ll sign it but it it’s gonna be hard to enforce and he said he probably won’t enforce it. So that’s that, you know, that started in the beginning before it was passed. So you know, you know, so so we we are here in 2020, and we have seen that the IDEA has never been fully funded and it’s never been fully enforced, so that affects a lot of disabled students who are in school. So, you you have a law that’s never been fully funded or fully enforced and it’s hard to make the schools do what they should do under the law. And and it’s interesting because a lot of um people blame the parents blame the schools, but they don’t blame the politicians and the legislators who never fully funded and never fully implemented the law. Sarah Kirwan: That’s interesting because I wonder if, if they know, you know, I wonder if they know where that blame lay, should be laid. Leroy Moore: I don’t know. Sarah Kirwan: So did this law actually have an impact on your life? Leroy Moore: Oh yeah. I mean, you know that’s why I, you know escaped you know special education because my Mom took the schoolboard to court. I mean, without that court case, you know, you know who you know I don’t know where I would be you know. And that was when the law first came out. So, my Mom she didn’t know it, but she was doing something that was totally new back in the late seventies. Sarah Kirwan: With those barriers. Do you think the law did move the needle on inclusion for children with disabilities when it was signed originally in the seventies? And do you think it actually is doing the same today? Leroy Moore: I think, I think, I think yes of course, you know, having a law on the books of course, you know, pushes the system to do right and um, you know and um parents can use the law to push the system to do right. I was, um, I was, uh, I was an advocate for, um, IEPs Individual Education Plans when when I was working at CIL. And it was funny because all the parents loved me, but the school district hated me. Because I would tell the parents nope, don’t sign it, you can take it home, you can read it, so I would push for parents’ rights and I would make sure the school was doing their um, their half of what the IEP promised. Sarah Kirwan: That’s the unfortunate part. When we look at these programs that are available, there are a lot of organizations that don’t fully educate staff, clients, customers, consumers, anyone about the laws that actually exist for protections or for resources, it affects so many people’s lives and they miss out on opportunities. It’s very sad. Leroy Moore: Yeah. I mean, you know, it’s totally sad when parents don’t have the time to advocate you know, because it takes time to know your rights, to know the IEP, to get you know a doctor’s note, so the student can be evaluated, to get the right advocate in the meetings, to know your right that you have the right to an emergency IEP meeting, you know parents can call a meeting anytime and the school has to be there. So, it’s it’s it’s kinda sad when when there’s a lack of resources to get parents educated and to get parents to be um advocates you know, and and not only to get parents to be advocates, but you know to let them know that we’re here when they go into meetings because you know there’s so many parents that go into meetings and don’t advocate and just sign it and just say okay done. And they don’t know what they signed. Sarah Kirwan: Yup. And they don’t know what the resources will be that their child will receive or what they’re missing out on too. Leroy Moore: Yeah, yeah. Sarah Kirwan: You know, we hit another big milestone in 2020 as we celebrated the 30th anniversary of the ADA, right? The Americans with Disabilities Act on July 26th, 1990. It’s hard to think it was only 1990. ‘Cause the nineties feel like yesterday to me. But anyway, on July 26th, 1990 president George H.W Bush signed the Americans with Disabilities Act the ADA, the most sweeping affirmation of rights for the disabled in American history at the time into law, as disability rights attorney, Arlene Mayerson would later write the story of the ADA actually began when people with disabilities began to challenge societal barriers that excluded them from their communities. And when parents of children with disabilities begin to fight against the exclusion and segregation of their children, 30 years later, we are still struggling for equity. As we fight for full implementation of the ADA to protect the rights of people with disabilities. As writer, Molly Bushay said in her article titled the ADA 30 years later, a continued call to action. This year in the shadow of the COVID-19 pandemic, the legacy of the ADA and the disability rights activists work is clear. Many changes that enable effective quarantine are the very same accommodations people with disabilities have fought for, and have often been denied, including myself. I’m saying that personally in their workplaces, and school environments for decades, yet accommodations like remote work, and telecommuting live streaming of events, online coursework and post-secondary classes, telemedicine and online grocery ordering and delivery became commonplace overnight, once the able-bodied community expressed a need. Many fights like raising home and community-based services, funding levels to meet heightened need as a result of the pandemic are still underway. Even today, several aspects of daily life remained partially or wholly inaccessible to people with disabilities. So Leroy, we need to make this law actually work for the people it was designed to work for. We need to address everything from public spaces to technology. What needs to happen in this space for us to make some lasting change with this law? Leroy Moore: Well, I think it’s almost like, it’s almost like the IDEA you know, we need more legislators need to enforce it, and legislators need to fully fund it. It’s interesting that we get these laws on the books, but they’re not enforced. It’s like why do it, if you’re not going to enforce it, why do it, you know, so what we need is more enforcement and more funding to enforce it. Um. It’s interesting in the 90’s, um my organization back then Disability Advocates of Minorities Organization we had the other side rally, the other side of the ADA rally for almost three-years. When we looked at the cover of the ADA, and we had a statement saying, “Who is missing from this cover.” And if you look the cover of ADA it’s, it’s so obvious who is missing, you know people of color. So, we, so we had a rally for people of color with disabilities saying that ADA, has fallen short for people of color to me just look at the cover it makes obvious sense, you know. Since then, you know, under Obama, the ADA got attached so many times and that’s under Obama, so once again our laws are not being enforced and they’re being attached. So, I mean I mean, what we need is I think we need a whole new leadership, of disability advocates, in Washington because because you know politics is a game of compromising, and how can the disabled community compromise. We don’t have nothing to compromise. Sarah Kirwan: I was just going to say, what, what are we gonna compromise? Leroy Moore: Exactly. I think, I think how we do is that, well, when Obama was in second term. He came to me, like Leroy can you join. why can’t you join. I said, no, I said no. People are like you said no to Obama? Sarah Kirwan: Yeah. Leroy Moore: I said no because I knew, I knew, I knew his watered down politics on disability. So these new leadership need to pushback and I think I think we have them, in local in local advocates, but we need to push them to the federal and to the state. I mean especially now, because everything is changing, you know, because of COVID, you know we definitely can’t go back to, to the norm because even the norm has left us out, so we have a good chance today because everything is changing, so we need to change our disability lobbyists, you know. Uh, our disability, people in Washington, I mean, Biden is about to pick his cabinet, and so so who’s going to be the disability you know person in his cabinet. I mean we can’t go back to you know what was there in Obama. So, does that mean the same people you know the same disabled peoples under Obama is going to return under Biden? You know. It’s time to pass the torch. I’m 53-years-old. Sarah Kirwan: You’re young. Leroy Moore: I don’t feel it. Sarah Kirwan: A couple of things that you just shared resonated with me. So the watered down, I think that that is one thing that has always bothered me about some of the legislation that gets passed. Um, even when we look at the healthcare, the affordable care act, I actually worked in Congress in 2009 on healthcare reform legislation. And I remember the night when it passed, it must’ve been the house in December and we were all sitting there watching it. I just remember thinking it’s so watered down. It’s so easy to pick it apart. And so I do think that we fall short a little bit on actually getting real change. Now the flip side of that is that in order for some of these laws to be passed, they have to be watered down because… Leroy Moore: I mean, you know, take for example in California, California passed a law to have disability history in in high schools and grade schools, right? You know, everybody loved the law, everybody’s like yeah, yeah, good, good, and the law’s been in there for what two or three years, and it’s not enforced. I mean, I mean, I understand that we have to compromise with the government, but let’s go back to these laws and it’s like okay, we compromise at first, but you guys have left a big hole that’s not that that goes against the law, you know, let’s let’s fix what we didn’t do in the first round. So that that that I mean everybody in Congress now knows that the IDEA has never been fully funded and fully enforced. I mean, my thoughts on that is that campaign for politicians is like Christmas eve for kids they will say anything and anything just to get that vote, same thing with kids, they will say anything and anything to get that toy. But the thing that we don’t do is that we don’t go back to the history and it’s like aww, you’ve been in office for almost 30-years and haven’t done sh** with IDEA, oh yeah, now you have it on your platform, but you haven’t done sh** for 30-years. So, so we we need to question that. And, people tell me well, you have to believe in the platform, and I was like no no I don’t because those are promises. I believe in their history and in their record. Sarah Kirwan: So the other thing that caught my ear as you were talking was that the ADA fell short for people with disabilities of color. And I think that’s a really important piece of our conversation today, in addition to just how the appearance of the pamphlets and the information that they gave out, how are people of color left out of the ADA? Leroy Moore: Well, it’s not only the ADA, it’s the whole disability rights movement, you know, so the whole disability rights movement um, hasn’t really dealt with race and racism, so because of that all the all the fruits and goodies that comes on the disability rights movement, from civil rights to disability students to disability arts and stuff hasn’t really um covered people of color with disabilities. So, so now now we have disability justice, we have sins invalid, we have my organization, we’re krip-hop, we have um the national black disability coalition. So, now it’s time to change that and it’s time for um for these national disability organizations to really let go of their other power and their reigns and really you know, first come to the table and think okay yes, we have a lot to work on, and you know, we can listen and learn from you. You know, all the of disability rights movement. right school, you know, disciplinary right school, um, haven’t really dealt with race and racism. So because of that, you know, all the routes and good things silvereyes to disability studies, to disability arts and stuff, haven’t really, um, covered people of color with disabilities. So, so now, now we have disability justice, you know, yes, says invalid, do we have this in recent weeks, Krip-Hop. Well there, uh, um, international works coalition. So now it’s, it’s time to change that. It’s time, or, um, buddy’s national this way to, to really, uh, like go, uh, their, their power in their room and really, you know, um, first come to the table and say, okay, yes, we, we have a lot to work on and, you know, we can listen and learn from you. Sarah Kirwan: Yeah. I love that. You know, we’ve obviously been talking about disability in general, as well as how it relates to disability rights, and justice, and how people of color are often left out of that conversation. We live in a society where we want to put people into boxes, right? You’re this. So you go over here. And you’re this, so you go over there, however, disability intersects with all other social categorizations, like race, religion, sexual orientation, and gender, et cetera. And unfortunately, we often look at disability through a lens that has historically said, “White is the norm for disability.” But that’s not the case. As we’ve talked about, we need to look at this from an historical perspective. According to a report published by the Ruderman family foundation, a disability focused organization, almost half of the people who die at the hands of police have some kind of disability. Let me say that again. Almost Half of the people who die at the hands of police has some kind of disability. The report states that police are often drawn into emergencies where urgent care may be more appropriate than lethal force. The report also States that while police interactions with minorities draw increasing scrutiny, disability, and health conditions are still neglected in media coverage and law Enforcement, “Police have become the default responders to mental health calls.” Right, the authors historian, David Perry and disability expert Lawrence Carter-Long who analyzed incidents from 2013 to 2015, they propose that people with psychiatric disabilities are presumed to be dangerous to themselves and others in police interactions. This report leads directly into the racial debates over policing. Noting that while coverage of police brutality cases has understandably focused on race, that lens can also obscure how disability factors into police interactions. Let’s take one of the most discussed police brutality cases. The Chicago police shooting of Laquan McDonald, a black teenager killed while acting erotically and holding a knife. Prosecutors took the unusual step of charging an officer with first degree murder. Noting McDonald did not pose a legal threat to the officers who had surrounded him. When video of the shooting was released it sparked the resignation of Chicago’s police chief and a national debate over race policing. There was far less focused, however, on McDonald’s health. According to later investigation by the Chicago Tribune, McDonald suffered from PTSD and complex mental health problems. That reality may be relevant to his contact the night of his death and ways the police might have deescalated the interaction according to law enforcement experts. It’s crucial that officers precisely evaluate the problems a suspect may be experiencing. So Colin Kaepernick’s media group has published many articles on the relationship between disability, justice and policing and prisons, because it’s extremely important we understand this. If we truly want to change these systems in our country, Leroy, what has your experience with the black lives matter movement been as a black disabled man? And what do we need to focus on to bring awareness to this issue? Leroy Moore: God. I can, I can tell you stories about that. And my this is my, um, thinking about black lives matter, that I’ve been doing police brutality activism since 84 right, so you know, so saw a lot of groups come and go, been talking about disability and police brutality since 84. And when black lives matter jumped off, I was working with Sins Invalid and we you know tried to get them on. Board with disability justice and it took awhile and um we were almost there, we had one call, and we were supposed to have you know other calls and workshops and you know and it just didn’t happen. I don’t know what happened, but we tried with Sins Invalid So After Sins Invalid, Krip Hop did a film documentary called where is hope and that film documentary talked about police brutality and people with disabilities and this happened like almost a year after black lives matter started, and we myself and Emmett sower tried to get other organizations involved you know, and we got slammed door after slammed door, you know, but we kept on doing the film, you know, and the film has been out for years, you know, and the film with the hip hop music cd has been out for years. So you know, my my … and another point about black lives matter that I Know is that people have been doing the work way before black lives matter and um especially in you know Missouri when when you know black lives matter had started. And so for me, you know, I always go back to you know the groups that have been doing the work with no money and no support you know hands up don’t shoot been doing the work, cop watch chapters across the country have been doing the work, poor magazine has been doing the work, so so, yeah. I think um, at this moment you know, and at at this moment, you know real radical changes are becoming mainstream because local artists have been pushing it. I mean the whole defunding the police, I mean, we’ve been talking about that for decades now. You know um, its become popular because finally mainstream movements are forced to talk about it. IN the beginning, you know, black lives matter was talking about police training and you know police cameras and stuff and we was like what. So you know, I’m glad that they’re they’re finally you know having the talk about you know defunding the police and now black lives matter is um you know have been um include certain black disabled women in their in their movement, which is a good thing. And, I just I just wonder it’s like huh, that’s interesting, because most of the shootings are black disabled men. So, I’m just like where is the black disabled man and boy’s voice in black lives matter. So, you know it’s really controversial for me, but, the work continues on the ground, you know. Sarah Kirwan: So for you and I have talked about this, that the buzzwords for today are inclusion and equity, right. Inclusion and equity. And for me, and for my company, when I set this up and kind of go back to the beginning, when I thought, Oh my gosh, do I have to change all my messaging? Do I have to change everything that I wrote my whole website, but what I decided, why don’t I just define for myself, for me, inclusion is not just the word, right? It’s the action on the backend. It’s holding that accountability, having, uh, people with disabilities, uh, at the table, having a seat at the table, making decisions, helping to make decisions. Um, so it’s action. It’s when you actually do something, as opposed to just talking about it. So do you feel with today’s buzzwords being inclusion and equity, do you feel that in some ways disabled folks are actually less included now? Leroy Moore: Um, I think, I think, disabled folks are being slowly included. Um you know you see it in Hollywood you see it in like I said Black Lives Matters, um, yeah, I think I think we’re slowly being included. I think I think only the safe people are being included only the people that um that their politics is easy to swallow is being included. So, yeah. Sarah Kirwan: Yeah. I find that interesting because I’ve, I’ve worked for a lot of non-profit organizations. I’ve been in government for a lot of years in public administration. And when, when people who, well, let’s just say that the individual has a disability and they’re working for an organization that helps that disability, right. Supports that disability. I have learned that oftentimes they don’t want to hear that voice because it really goes against maybe what their beliefs were or what their thoughts were or what, the direction they were going in. So it does take a lot of time on their end to kind of pivot and regroup, but that’s the point is to understand the peoples that you serve, what their need is and how do you best fulfill that need, right? Leroy Moore: Yeah. Well, you know, I’ll give you an example of my own work. Is that it’s totally amazing that I say this and it’s still shocking when I say it is that I’ve been a college um lecturer on a college campus for almost 21-years, right. From Harvard, to UC Berkely to Princeton, but I haven’t gotten any invite from a black college yet. And that just that just totally blows my mind you know, although I’ve tried many time, and every year I send out thousands of emails with my website, and all that, and it’s just like wow. It’s just like are you serious, you just don’t want to hear the other voice, you know. And, you know, it’s not me, it’s disability, I think. You know, you know, at this point I just shake my head, like wow. It’s so obvious and it’s so like, you know, anytime I say it people are like what, and I’m like yeah, you know. I think, I think the disability justice movement, which I helped start, I think they had jumped the gun, because how can we say that we want disability justice when there’s no disability education in the black and brown communities. So, first we have to do the political education for our communities, because our community thinks disability as two things, one something to overcome, or two something to get services. So, we’re dealing with that. Like no wonder I’m not invited to black colleges. Because they don’t think disability has a principal, historical, cultural thing to study. ‘They just think that disability is you get services, or you overcome it. In 2020, we still. Have that outlook? I was like yeah, we still have that view because there’s no education. Sarah Kirwan: I didn’t actually think about that when we talk about disability justice, I didn’t think about how, how can we really have that justice, if there’s no education in the communities. We have a lot of work to do. Leroy Moore: Yeah, yeah, yeah I mean, and, and I, and I’m one of the persons that helped start disability justice with Clayburn and Mi Amigas, but you know, now now I look back on it and it’s like no wonder. It’s like It’s we can talk about disability justice and we want it and we wish for it but there’s no education that’s going to make that hump from a viewpoint of overcoming to a viewpoint of disability justice because there’s so many humps to get through it’s that you’re trying to change people’s outlook on disability. So, if the community thinks of disability as something to overcome and services, so you have to go through those humps, then you have to get through disability right, then you have to get to disability justice. We’re talking about education that needs to be in there a long time just to make those humps. Sarah Kirwan: Okay. So from your experience, is it possible to do inclusion well and what projects have you worked on that you feel are truly inclusive? Leroy Moore: Okay. Is it possible to do inclusive well. I mean, I go back to the story of Jesus. I mean right there. He did with no law. You know, so yes it’s possible if people can learn and take on models that’s outside their own model. If they can do that yeah. If they can’t do that then they’re just wasting their time. Sarah Kirwan: Yeah. And that kind of goes back to what you said about, why do it, can you share with us a project that you’re currently working on? Leroy Moore: Oh my God! There’ so much and so much. Well, the big thing that Krip Hops is trying to do, and this is going to come in a couple of years because we’re still building it and that’s one reason why I’m going for my PhD at UCLA. But, we’re trying to have a Krip Hop institute where it came to me a couple of months ago, but we need to take over a building. You know, first it was just a two story house and I was like no Krip Hop needs a building. Just like, you know, just like we have the Ed Roberts building at Berkeley, same thing needs to happen with Krip Hop Krip Hop needs a building. And, you know people are like why a building because Krip Hp does so much we have visual arts. I can see one for just visual arts from around the world. You know we have a large library; you can see a large library; you know on the 2nd floor. You know, we bring in people from all of the world. Last year we had the um the disabled African musician’s tour. We brought people from all over Africa. Sarah Kirwan: That’s incredible. Leroy Moore: So yeah. I was like, you know, it’s time for the Krip Hop Institute and it’s time for having that institute in a building where we could you know show off our visual arts, a music studio and a meeting space where you know, disabled people can come internationally, you know we could have archives. And not only, not only keeping it to the building, but have other cultural organizations come, like for example, the hip hop museum that’s going to open next year. Krip hop should be in that museum and that’s just all to it. You know, so , they can come to the krip hop institute and learn why krip hop needs to be in a building. The same thing with the African American museum in DC that just opened up, they have nothing on disability. Nothing. And it just opened up. It cost millions to open up that museum. So, they can come to krip hop institute and take what they learn to their own museum. Sarah Kirwan: I love that idea Leroy share the disability culture and the history of disability, the history of disability rights, all of those pieces that are forgotten. Leroy Moore: You know, the Krip Hop Institute would be more than a museum, you know, it’s somewhere where you know disabled black boys can come and see themselves you know. It can be a meeting space, it can be a meeting space, we can have events, you know, we can do music right there, you know so, yeah, so that’ a huge thing that we’re working on. And, it might be in LA because that’s where I’m going to be for graduate school and and I was thinking yeah, UCLA can play a part in it. You know. I don’t know how but they could um be um a resource of any rare books or rare records into our institute. That individual can’t get. Sarah Kirwan: So before we go, I want to ask you one last question. How can we, you and I, our listeners, how can we all make inclusion more than just a buzzword in our daily lives? Leroy Moore: Um, I think how is um really really uplift the work. I mean, the work outside of hashtag, I mean the real work, you know, um, sins invalid, um you know I just talked about the krip hop institute, you know people can help support that. Yeah, people can help support Lydia Brown’s work, I mean there’s so much that people are doing that should be uplifted. I mean, the thing is that a lot of our so-called famous stars and stuff like that, they still believe in charity, so they still have charities for people with disabilities. I’m like no, no forget that, you know, get your hands dirty and get into Krip Hop, get into sins invalid, you know. Sarah Kirwan: And where can our listeners find Krip Hop, and Sins Invalid? Leroy Moore: So, you can go to our website, kriphopnation.com. And of course sinsinvalid.org, um, you can check out, um, our YouTube page. We started last year. It’s been a, I think almost two or three years. We started this black men with disabilities talk videos we do it every month and it goes up on YouTube, so you can check out that. Jut type in Krip Hop. Send me an email. kriphop@gmail.com you know, we’re doing so much on internationally, um, keytones is working with a group of disabled rappers in Australia and they’re about to perform in Japan. So yeah, we’re doing things. Sarah Kirwan: That’s incredible. That’s incredible. I’m so happy that you joined me on the podcast and I just really appreciated you having the conversation with me. And I just look forward to continuing that conversation with you. Leroy Moore: Yeah and thanks for having me, good luck on your podcast. I’m going to listen to it. I love podcasts. Sarah Kirwan: Thank you again, Leroy, I’ll talk with you again soon. And once again to our listeners, thank you for spending your time with us and joining the Incluse This! conversation and movement. Incluse This! brought to you by Eye Level Communications, LLC. Eye Level is a California based woman and disability owned small business committed to having critical conversations at Eye Level that are necessary to move disability to the forefront of the greater diversity conversation. If you’d like to learn more about the work we’re doing, please visit the website www.eyelevel.works. You can also email me directly with any podcast, episode ideas or questions and comments sarah@eye-level.works. Remember to put your disability lens on when you look at the world and tune in next week for another stimulating conversation on Incluse This!, the podcast, that’s really a movement. Take care and be well. Hi, and welcome to Incluse This!. I’m your host, Sarah Kirwan. And this is a movement for disability equity. Today, we’re talking with Leroy Moore and we’re talking about inclusion. Leroy F Moore Jr. is the founder of the Krip-Hop Nation. If you haven’t checked them out online, you absolutely should. Since the 1990s, Leroy has written the column, Illin-N-Chillin for POOR Magazine, he’s also one of the founding members of national black disability and an activist around police brutality against people with disabilities. Leroy has started or helped to start many organizations, such as disability, advocates of minorities and Sins Invalid. His cultural work includes film documentary, Where is Hope, along with police brutality against people with disabilities. He also produces spoken word CDs, poetry books, and children’s books along with Black Disabled Art History 101. His graphic novel Krip-Hop Graphic Novel Issue 1 Brown Disabled Young Woman Superhero Brings Disability Justice to Hip Hop was published by Poor Press in 2019 and 2020. Under Poor Press Leroy also published Black Disabled Ancestors. Leroy Moore has traveled internationally networking with other disabled activists and artists. He has written and collaborated to produce music videos on black disabled men. We are so thrilled to welcome Leroy Moore to Incluse This today. Hi, Leroy and welcome. Hey, how are you doing, thanks for having me. I am so excited to have you here today to talk about inclusion. Leroy and I met virtually a few months ago as I was planning and strategizing for this podcast. And I really wanted to get his thoughts on the premise of the podcast and the topics for the show. And as a public administrator by trade, I was really laying it out there, how much we need equity and inclusion, how I’ve dedicated myself to the cause, how much I believe in it. And then when I was done with my rant, Leroy responded with, “Inclusion is bullsh** Sarah.” I was silent for a few minutes, as I thought about what he was saying, “Is he really saying this is bullsh**. Do other people with disabilities, see this term and think it’s bullsh**? Do I need to re-strategize and change all of my business messaging? Do I need to change my mission statement?” I went down a rabbit hole and as we talked, I started thinking about how many different ways of thinking about inclusion there really are. So, Leroy with that, I kind of want to start with why is inclusion bullsh**? Yeah Inclusion is bullsh** because people with disabilities have always been here, you know, so if you go back to the story of Moses in the Bible, Moses had a disability and God gave Moses an accommodation without the ADA, of course, haha, his brother. So you know, so thinking that story is like people with disabilities have always been here. So I see inclusion as, as, as bullsh**. It’s like just follow the law, implement law, and let’s do it that way. Because we’ve been here, we’ve always been here. It’s not up to you to open up that space and make this inclusion happen. It’s the law. So do it and let’s do it. I like how you said it’s not up to you. So let’s talk a little bit about some historical movements that have tried some successfully, some unsuccessfully to move the needle on inclusion for disabled folk in our country. The two that come to mind for me first are the individuals with disabilities education act, and the Americans with Disabilities Act or ADA. So the IDEA was previously known as the Education for All Handicapped Children Act and was signed into law by president Gerald Ford in 1975, 2020 actually marks the 45th anniversary, which I didn’t know. I think it was very much overshadowed by the 30th anniversary of the ADA, which we’ll get into in a minute. But can you tell us about your experience with the IDEA when you were growing up? Yeah, so the IDEA was that my mother used it to get me out of, um, special education, you know, I was, um, you know, segregate back then, you know, so my mother used the law to get me quote unquote mainstreamed, and um you know, because she took I think it’s the East Hartford Connecticut Schoolboard to court, they quote unquote mainstreamed me mainstreamed me into quote unquote regular classes with a teacher’s aid, and I flourished because of that. And, um um, you know, we gotta see the history of IDEA, because when Gerald, when the President, President Ford signed it into law, he signed in a secret place, it wasn’t a public ceremony like the ADA, and he said yeah, that he’ll sign it but it it’s gonna be hard to enforce and he said he probably won’t enforce it. So that’s that, you know, that started in the beginning before it was passed. So you know, you know, so so we we are here in 2020, and we have seen that the IDEA has never been fully funded and it’s never been fully enforced, so that affects a lot of disabled students who are in school. So, you you have a law that’s never been fully funded or fully enforced and it’s hard to make the schools do what they should do under the law. And and it’s interesting because a lot of um people blame the parents blame the schools, but they don’t blame the politicians and the legislators who never fully funded and never fully implemented the law. That’s interesting because I wonder if, if they know, you know, I wonder if they know where that blame lay, should be laid. I don’t know. So did this law actually have an impact on your life? Oh yeah. I mean, you know that’s why I, you know escaped you know special education because my Mom took the schoolboard to court. I mean, without that court case, you know, you know who you know I don’t know where I would be you know. And that was when the law first came out. So, my Mom she didn’t know it, but she was doing something that was totally new back in the late seventies. With those barriers. Do you think the law did move the needle on inclusion for children with disabilities when it was signed originally in the seventies? And do you think it actually is doing the same today? I think, I think, I think yes of course, you know, having a law on the books of course, you know, pushes the system to do right and um, you know and um parents can use the law to push the system to do right. I was, um, I was, uh, I was an advocate for, um, IEPs Individual Education Plans when when I was working at CIL. And it was funny because all the parents loved me, but the school district hated me. Because I would tell the parents nope, don’t sign it, you can take it home, you can read it, so I would push for parents’ rights and I would make sure the school was doing their um, their half of what the IEP promised. That’s the unfortunate part. When we look at these programs that are available, there are a lot of organizations that don’t fully educate staff, clients, customers, consumers, anyone about the laws that actually exist for protections or for resources, it affects so many people’s lives and they miss out on opportunities. It’s very sad. Yeah. I mean, you know, it’s totally sad when parents don’t have the time to advocate you know, because it takes time to know your rights, to know the IEP, to get you know a doctor’s note, so the student can be evaluated, to get the right advocate in the meetings, to know your right that you have the right to an emergency IEP meeting, you know parents can call a meeting anytime and the school has to be there. So, it’s it’s it’s kinda sad when when there’s a lack of resources to get parents educated and to get parents to be um advocates you know, and and not only to get parents to be advocates, but you know to let them know that we’re here when they go into meetings because you know there’s so many parents that go into meetings and don’t advocate and just sign it and just say okay done. And they don’t know what they signed. Yup. And they don’t know what the resources will be that their child will receive or what they’re missing out on too. Yeah, yeah. You know, we hit another big milestone in 2020 as we celebrated the 30th anniversary of the ADA, right? The Americans with Disabilities Act on July 26th, 1990. It’s hard to think it was only 1990. ‘Cause the nineties feel like yesterday to me. But anyway, on July 26th, 1990 president George H.W Bush signed the Americans with Disabilities Act the ADA, the most sweeping affirmation of rights for the disabled in American history at the time into law, as disability rights attorney, Arlene Mayerson would later write the story of the ADA actually began when people with disabilities began to challenge societal barriers that excluded them from their communities. And when parents of children with disabilities begin to fight against the exclusion and segregation of their children, 30 years later, we are still struggling for equity. As we fight for full implementation of the ADA to protect the rights of people with disabilities. As writer, Molly Bushay said in her article titled the ADA 30 years later, a continued call to action. This year in the shadow of the COVID-19 pandemic, the legacy of the ADA and the disability rights activists work is clear. Many changes that enable effective quarantine are the very same accommodations people with disabilities have fought for, and have often been denied, including myself. I’m saying that personally in their workplaces, and school environments for decades, yet accommodations like remote work, and telecommuting live streaming of events, online coursework and post-secondary classes, telemedicine and online grocery ordering and delivery became commonplace overnight, once the able-bodied community expressed a need. Many fights like raising home and community-based services, funding levels to meet heightened need as a result of the pandemic are still underway. Even today, several aspects of daily life remained partially or wholly inaccessible to people with disabilities. So Leroy, we need to make this law actually work for the people it was designed to work for. We need to address everything from public spaces to technology. What needs to happen in this space for us to make some lasting change with this law? Well, I think it’s almost like, it’s almost like the IDEA you know, we need more legislators need to enforce it, and legislators need to fully fund it. It’s interesting that we get these laws on the books, but they’re not enforced. It’s like why do it, if you’re not going to enforce it, why do it, you know, so what we need is more enforcement and more funding to enforce it. Um. It’s interesting in the 90’s, um my organization back then Disability Advocates of Minorities Organization we had the other side rally, the other side of the ADA rally for almost three-years. When we looked at the cover of the ADA, and we had a statement saying, “Who is missing from this cover.” And if you look the cover of ADA it’s, it’s so obvious who is missing, you know people of color. So, we, so we had a rally for people of color with disabilities saying that ADA, has fallen short for people of color to me just look at the cover it makes obvious sense, you know. Since then, you know, under Obama, the ADA got attached so many times and that’s under Obama, so once again our laws are not being enforced and they’re being attached. So, I mean I mean, what we need is I think we need a whole new leadership, of disability advocates, in Washington because because you know politics is a game of compromising, and how can the disabled community compromise. We don’t have nothing to compromise. I was just going to say, what, what are we gonna compromise? Exactly. I think, I think how we do is that, well, when Obama was in second term. He came to me, like Leroy can you join. why can’t you join. I said, no, I said no. People are like you said no to Obama? Yeah. I said no because I knew, I knew, I knew his watered down politics on disability. So these new leadership need to pushback and I think I think we have them, in local in local advocates, but we need to push them to the federal and to the state. I mean especially now, because everything is changing, you know, because of COVID, you know we definitely can’t go back to, to the norm because even the norm has left us out, so we have a good chance today because everything is changing, so we need to change our disability lobbyists, you know. Uh, our disability, people in Washington, I mean, Biden is about to pick his cabinet, and so so who’s going to be the disability you know person in his cabinet. I mean we can’t go back to you know what was there in Obama. So, does that mean the same people you know the same disabled peoples under Obama is going to return under Biden? You know. It’s time to pass the torch. I’m 53-years-old. You’re young. I don’t feel it. A couple of things that you just shared resonated with me. So the watered down, I think that that is one thing that has always bothered me about some of the legislation that gets passed. Um, even when we look at the healthcare, the affordable care act, I actually worked in Congress in 2009 on healthcare reform legislation. And I remember the night when it passed, it must’ve been the house in December and we were all sitting there watching it. I just remember thinking it’s so watered down. It’s so easy to pick it apart. And so I do think that we fall short a little bit on actually getting real change. Now the flip side of that is that in order for some of these laws to be passed, they have to be watered down because… I mean, you know, take for example in California, California passed a law to have disability history in in high schools and grade schools, right? You know, everybody loved the law, everybody’s like yeah, yeah, good, good, and the law’s been in there for what two or three years, and it’s not enforced. I mean, I mean, I understand that we have to compromise with the government, but let’s go back to these laws and it’s like okay, we compromise at first, but you guys have left a big hole that’s not that that goes against the law, you know, let’s let’s fix what we didn’t do in the first round. So that that that I mean everybody in Congress now knows that the IDEA has never been fully funded and fully enforced. I mean, my thoughts on that is that campaign for politicians is like Christmas eve for kids they will say anything and anything just to get that vote, same thing with kids, they will say anything and anything to get that toy. But the thing that we don’t do is that we don’t go back to the history and it’s like aww, you’ve bene in office for almost 30-years and haven’t done sh** with IDEA, oh yeah, now you have it on your platform, but you haven’t done sh** for 30-years. So, so we we need to question that. And, people tell me well, you have to believe in the platform, and I was like no no I don’t because those are promises. I believe in their history and in their record. So the other thing that caught my ear as you were talking was that the ADA fell short for people with disabilities of color. And I think that’s a really important piece of our conversation today, in addition to just how the appearance of the pamphlets and the information that they gave out, how are people of color left out of the ADA? Well, it’s not only the ADA, it’s the whole disability rights movement, you know, so the whole disability rights movement um, hasn’t really dealt with race and racism, so because of that all the all the fruits and goodies that comes on the disability rights movement, from civil rights to disability students to disability arts and stuff hasn’t really um covered people of color with disabilities. So, so now now we have disability justice, we have sins invalid, we have my organization, we’re krip-hop, we have um the national black disability coalition. So, now it’s time to change that and it’s time for um for these national disability organizations to really let go of their other power and their reigns and really you know, first come to the table and think okay yes, we have a lot to work on, and you know, we can listen and learn from you. You know, all the of disability rights movement. right school, you know, disciplinary right school, um, haven’t really dealt with race and racism. So because of that, you know, all the routes and good things silvereyes to disability studies, to disability arts and stuff, haven’t really, um, covered people of color with disabilities. So, so now, now we have disability justice, you know, yes, says invalid, do we have this in recent weeks, Krip-Hop. Well there, uh, um, international works coalition. So now it’s, it’s time to change that. It’s time, or, um, buddy’s national this way to, to really, uh, like go, uh, their, their power in their room and really, you know, um, first come to the table and say, okay, yes, we, we have a lot to work on and, you know, we can listen and learn from you. Yeah. I love that. You know, we’ve obviously been talking about disability in general, as well as how it relates to disability rights, and justice, and how people of color are often left out of that conversation. We live in a society where we want to put people into boxes, right? You’re this. So you go over here. And you’re this, so you go over there, however, disability intersects with all other social categorizations, like race, religion, sexual orientation, and gender, et cetera. And unfortunately, we often look at disability through a lens that has historically said, “White is the norm for disability.” But that’s not the case. As we’ve talked about, we need to look at this from an historical perspective. According to a report published by the Ruderman family foundation, a disability focused organization, almost half of the people who die at the hands of police have some kind of disability. Let me say that again. Almost Half of the people who die at the hands of police has some kind of disability. The report states that police are often drawn into emergencies where urgent care may be more appropriate than lethal force. The report also States that while police interactions with minorities draw increasing scrutiny, disability, and health conditions are still neglected in media coverage and law Enforcement, “Police have become the default responders to mental health calls.” Right, the authors historian, David Perry and disability expert Lawrence Carter-Long who analyzed incidents from 2013 to 2015, they propose that people with psychiatric disabilities are presumed to be dangerous to themselves and others in police interactions. This report leads directly into the racial debates over policing. Noting that while coverage of police brutality cases has understandably focused on race, that lens can also obscure how disability factors into police interactions. Let’s take one of the most discussed police brutality cases. The Chicago police shooting of Laquan McDonald, a black teenager killed while acting erotically and holding a knife. Prosecutors took the unusual step of charging an officer with first degree murder. Noting McDonald did not pose a legal threat to the officers who had surrounded him. When video of the shooting was released it sparked the resignation of Chicago’s police chief and a national debate over race policing. There was far less focused, however, on McDonald’s health. According to later investigation by the Chicago Tribune, McDonald suffered from PTSD and complex mental health problems. That reality may be relevant to his contact the night of his death and ways the police might have deescalated the interaction according to law enforcement experts. It’s crucial that officers precisely evaluate the problems a suspect may be experiencing. So Colin Kaepernick’s media group has published many articles on the relationship between disability, justice and policing and prisons, because it’s extremely important we understand this. If we truly want to change these systems in our country, Leroy, what has your experience with the black lives matter movement been as a black disabled man? And what do we need to focus on to bring awareness to this issue? God. I can, I can tell you stories about that. And my this is my, um, thinking about black lives matter, that I’ve been doing police brutality activism since 84 right, so you know, so saw a lot of groups come and go, been talking about disability and police brutality since 84. And when black lives matter jumped off, I was working with Sins Invalid and we you know tried to get them on. Board with disability justice and tit took awhile and um we were almost there, we had one call, and we were supposed to have you know other calls and workshops and you know and it just didn’t happen. I don’t know what happened, but we tried with Sins Invalid. So After Sins Invalid, Krip Hop did a film documentary called where is hope and that film documentary talked about police brutality and people with disabilities and this happened like almost a year after black lives matter started, and we myself and Emmett sower tried to get other organizations involved you know, and we got slammed door after slammed door, you know, but we kept on doing the film, you know, and the film has been out for years, you know, and the film with the hip hop music cd has been out for years. So you know, my my … and another point about black lives matter that I Know is that people have been doing the work way before black lives matter and um especially in you know Missouri when when you know black lives matter had started. And so for me, you know, I always go back to you know the groups that have been doing the work with no money and no support you know hands up don’t shoot been doing the work, cop watch chapters across the country have been doing the work, poor magazine has been doing the work, so so, yeah. I think um, at this moment you know, and at at this moment, you know real radical changes are becoming mainstream because local artists have been pushing it. I mean the whole defunding the police, I mean, we’ve been talking about that for decades now. You know um, it’s become popular because finally mainstream movements are forced to talk about it. IN the beginning, you know, black lives matter was talking about police training and you know police cameras and stuff and we was like what. So you know, I’m glad that they’re they’re finally you know having the talk about you know defunding the police and now black lives matter is um you know have been um include certain black disabled women in their in their movement, which is a good thing. And, I just I just wonder it’s like huh, that’s interesting, because most of the shootings are black disabled men. So, I’m just like where is the black disabled man and boy’s voice in black lives matter. So, you know it’s really controversial for me, but, the work continues on the ground, you know. So for you and I have talked about this, that the buzzwords for today are inclusion and equity, right. Inclusion and equity. And for me, and for my company, when I set this up and kind of go back to the beginning, when I thought, Oh my gosh, do I have to change all my messaging? Do I have to change everything that I wrote my whole website, but what I decided, why don’t I just define for myself, for me, inclusion is not just the word, right? It’s the action on the backend. It’s holding that accountability, having, uh, people with disabilities, uh, at the table, having a seat at the table, making decisions, helping to make decisions. Um, so it’s action. It’s when you actually do something, as opposed to just talking about it. So do you feel with today’s buzzwords being inclusion and equity, do you feel that in some ways disabled folks are actually less included now? Um, I think, I think, disabled folks are being slowly included. Um you know you see it in Hollywood you see it in like I said Black Lives Matters, um, yeah, I think I think we’re slowly being included. I think I think only the safe people are being included only the people that um that their politics is easy to swallow is being included. So, yeah. Yeah. I find that interesting because I’ve, I’ve worked for a lot of non-profit organizations. I’ve been in government for a lot of years in public administration. And when, when people who, well, let’s just say that the individual has a disability and they’re working for an organization that helps that disability, right. Supports that disability. I have learned that oftentimes they don’t want to hear that voice because it really goes against maybe what their beliefs were or what their thoughts were or what, the direction they were going in. So it does take a lot of time on their end to kind of pivot and regroup, but that’s the point is to understand the peoples that you serve, what their need is and how do you best fulfill that need, right? Yeah. Well, you know, I’ll give you an example of my own work. Is that it’s totally amazing that I say this and it’s still shocking when I say it is that I’ve been a college um lecturer on a college campus for almost 21-years, right. From Harvard, to UC Berkely to Princeton, but I haven’t gotten any invite from a black college yet. And that just that just totally blows my mind you know, although I’ve tried many time, and every year I send out thousands of emails with my website, and all that, and it’s just like wow. It’s just like are you serious, you just don’t want to hear the other voice, you know. And, you know, it’s not me, it’s disability, I think. You know, you know, at this point I just shake my head, like wow. It’s so obvious and it’s so like, you know, anytime I say it people are like what, and I’m like yeah, you know. I think, I think the disability justice movement, which I helped start, I think they had jumped the gun, because how can we say that we want disability justice when there’s no disability education in the black and brown communities. So, first we have to do the political education for our communities, because our community thinks disability as two things, one something to overcome, or two something to get services. So, we’re dealing with that. Like no wonder I’m not invited to black colleges. Because they don’t think disability has a principal, historical, cultural thing to study. ‘They just think that disability is you get services, or you overcome it. In 2020, we still. Have that outlook? I was like yeah, we still have that view because there’s no education. I didn’t actually think about that when we talk about disability justice, I didn’t think about how, how can we really have that justice, if there’s no educat

Episode 1: Am I Disabled Enough? An introduction to Incluse This! with host Sarah Kirwan and special guest Molly Bloom. https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/Final_Incluse_This_S1_E1_Am_I_Disabled_Enough.mp3 In this episode, host Sarah Kirwan and special guest Molly Bloom, dive into the question of being disabled enough. With lively discussion, the duo addresses this very real question in the context of identity, community, rights, culture, responsibility, empathy, care work, and legal structure. Am I Disabled Enough? gives listeners a glimpse into the very real personal struggle that people face when they try to answer this question. QUICK LINKS As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability. OUR GUEST: Molly J Bloom, PhD Molly has felt an affinity for and responsibility to the disability community since sustaining a life-changing injury as a teenager in 2006. Since then, she has co-founded the only women’s wheelchair basketball team in California, completed a PhD drawing on anthropology and disability studies, and learned from her friends and peers that disability community always involves sharing knowledge, advocacy, and living joyfully. In her doctoral studies at UCLA, Molly brought together critical perspectives on race, class, and disability community. Her research, funded by the National Science Foundation among other organizations, was recognized for its commitment to diversity when she was inducted into the Edward A. Bouchet Honor Society in 2018. She has authored publications on topics ranging from adaptive athletics, to disability in the Middle East, to Brazilian Sign Language. Recently, Molly has relocated to home of the American Disability Rights Movement, the Bay Area, where she is busy working as an Inclusive Design Researcher for Adobe and soaking in the activist milieu. She thrives on connection and collective growth and longs for the day when she can build joy in-person with her disabled kin. TRANSCRIPT Hi, and welcome to Incluse This! I’m your host, Sarah Kirwan. And this is a movement for disability equity. Today, we’re talking with Dr. Molly Bloom. A woman who wears many hats on this podcast, including contributor, producer, special guest, friend, and colleague. And we’re talking about being disabled enough. Dr. Molly Bloom has felt an affinity for and responsibility to the disability community since she sustained a life-changing injury as a teenager in 2006. Since then, she has co-founded the only women’s wheelchair basketball team in California, completed a PhD drawing on anthropology and disability studies, and learned from her friends and peers that disability community always involves sharing knowledge, advocacy, and living joyfully. In her doctoral studies at UCLA, Dr. Bloom brought together critical perspectives on race, class, and disability community. Her research funded by the National Science Foundation among other organizations was recognized for its commitment to diversity when she was included into the Edward A. Bouchet Honor Society in 2018. Dr. Bloom has authored publications on topics ranging from adaptive athletics, to disability in the Middle East, to Brazilian sign language. She recently relocated to the home of the American disability rights movement, the Bay Area, where she is busy working as an inclusive design researcher for Adobe. And also soaking in the activist milieu. Dr. Bloom thrives on connection and collective growth. And she longs for the day when she can build joy in person with her disabled kin. And just so no one gets confused, I’ll be calling her Molly throughout the remainder of this episode, because I’m still getting used to calling her Dr. Bloom. Molly has been instrumental in helping me shape and focus this podcast. And we’ve talked for countless hours over the past few months about disability identity, intersectionality, rights, culture, environment, and so much more. Molly and I met almost eight years ago playing wheelchair basketball, and we’ve grown to be very close friends and trusted colleagues. Our journey to change perceptions and attitudes about disability and move the needle on bringing disability to the forefront of the greater diversity, equity, and inclusion conversation has only just begun. And with that, am I disabled enough? Hi, Molly. And welcome. Hi, thank you for having me. I’m so excited to be on this podcast for the first time. And I’m extremely excited to finally be here recording with you today. Molly won’t share this with you, but I will. This is actually take three of recording this. And I just want to thank you for all of your support and your determination alongside me to put our voices out there. Yeah, absolutely. I’m just silently laughing to myself. And I’m ready. Let’s do it. So Molly, will you please share with our listeners what our journey over this past year has meant for you, and why you’re also passionate about Incluse This, and the movement that we’re trying to build, and the work that we’re doing? Absolutely. This past year has been, it’s been a dumpster fire. 2020 has been an incredibly tumultuous year, and it’s forced all of us to rethink so much about our life. What we want as humans and what we want in our world. You and I have had many, many conversations about this move towards a different world. It feels like the world has fallen apart, particularly with the pandemic as well as rising discourse around Black Lives Matter and general racial equity. And it also feels like this is a point at which we can think about how we might rebuild that world. So since the two of us have shared identity as people with disabilities, we’ve thought a lot about what a world could look like that includes disabled people, and that serves the needs of disabled people, and fully incorporates them into the fabric of society. We’ve talked about the podcast, we’ve talked about our lives and our journeys. We’ve talked about many things. And it’s been really important to have these conversations with you. I feel exactly the same. And I just appreciate your personal efforts that have helped me to bring this podcast vision to life. I want to turn to our topic at hand, the question of being disabled enough. Which really actually we’ll tie into disability identity as well. And we’ll get to that in a second. But I want to just share some questions that often come up when we think about am I disabled enough? That could be am I disabled enough to use a service animal, request a medical pre-boarding card, use the wheelchair accessible restroom, use the disabled check-in counter at the airport? Am I disabled enough to ask for a reasonable accommodation, to be worthy of asking for what I need? To play adaptive athletics, to coach adaptive athletics, to speak to disability in this podcast, to qualify for Social Security Disability Insurance, and to be fully accepted in the disability community. And this list really goes on and on, and there’s no easy answer to any of these when you’re living with an invisible or non-evidence illness or disability. And in my personal experience, I think we’re never disabled enough when people can’t see our disabilities. So I should explain here that I live with non-evident illnesses that are categorized as disabilities, which is multiple sclerosis and superior semicircular canal, dehiscence. Molly lives with an evident disability, which she’ll share a little bit more with you as we get into disability identity. Although our experiences have been different, we have shared experiences that have brought us together and continue to strengthen this bond that we have, that helps us to overcome this kind of odd divide that’s at play within our disability community. And it comes into play when illnesses aren’t identified as a disability by the people who experience them or by our larger communities that we live in. And it usually has to do with the fact that it’s invisible or non-evident. So I want to talk a little bit more about disability identity. Molly, can you explain what disability identity is, what that means? Absolutely. When I said I identified as a person with a disability, what I meant to say was I identify as a disabled person. And I make that shift with a very political mindset, because I don’t want my disability to necessarily be viewed as some sort of characteristic about me, like the fact that I have brown hair, and the fact that I have brown eyes, and the fact that I’m white, right? I want my disability to be understood as being an absolutely integral part of who I am and how I move around my world. So when I say I’m a disabled person, I use identity first language, as opposed to person-first language, which would be person with a disability. Because disability shapes everything I do. It shapes the connections that I make with people. It shapes the communities that I want to participate in and contribute to. It shapes a lot of the passions that I have in life. And this is not necessarily the case for every person with a disability. Everybody has a completely unique relationship to their own disability. When you think about disability as being part of your identity, it’s quite similar to the way people in other underserved groups, like in the LGBTQ group, or black people, or Asian people, or Asian Americans think about their identities as an inherent part of who they are. So the disability community has moved towards this acceptance of identity as a way to sort of get people on board with the idea that disability is not a negative part. It’s not necessarily a medical pathology. It’s not something that takes away from who you are, it’s something that enriches who you are. When you and I have talked about disabled person, so identity first versus the person-first language, person with disabilities. I don’t know. It’s part of my identity and I identify as a woman with disabilities, but I’m still putting my person-first. So that kind of leads me to if we’re not using that identity first language, I guess how important is it for people who live with non-evident disabilities to identify and to use that person-first language in this movement? That’s a question that I am not necessarily able to answer for somebody else because I have a very evident disability. I am an amputee, and I have a high amputation. So I have an amputation on my left leg that goes up all the way to my hip and even to my pelvis on the left side. So when I’m moving around the world, it’s quite obvious to people that I’m a disabled person. I also use a wheelchair to get through the world. So all of my understanding about the negative attitudes I’ve experienced and the way that I can be most empowered to sort of shift those attitudes for myself, and hopefully for the people with whom I come into contact, is to think about disability as core to who I am and central to who I am. But disability is a huge spectrum. And in fact, people don’t even necessarily identify as disabled, right? So people who are chronically ill might or might not identify as disabled. But that community might share a lot in common with people who are disabled in terms of needing accommodations, needing flexibility. People who are deaf might not identify as disabled, because the deaf culture has really embraced this notion of identity and sort of pushes away from the sense that disability is something that applies to them because deafness is just part of who they are and how they communicate. So it’s actually really complicated. And I think that just because a person uses person-first language and says, “I’m a person with a disability,” doesn’t mean that they don’t have a right to think that disability is also part of their identity. Language is complicated, and you build your relationship to disability and identity with your actions. In addition to your words, but I’d say more importantly with your action. So yeah, the question of how much people need to embrace disability identity, people with non-apparent disabilities, not evident disabilities in order to make change in the world is incredibly complicated. And I think that we can only reach a consensus on that, which really open debate about how disability communities might not be bases that are necessarily built to consider people with non-apparent disabilities, right? This might be a part of our community that has been alienated from something that could actually be a wider community. And several people have talked about this, right? There’s scholars like Leah Lakshmi Piepzna-Samarasinha. I’m sure I’m saying her name wrong, but she has a book called Care Work: Dreaming Disability Justice. And she has absolutely beautifully articulated this stance. There’s there’s a lot of folks who have thought about this, about how mainstream disability culture has been white. And it’s also been based on people with evident physical disabilities. So I think we’re in a space now where we actually have time to shift that in really empowering ways. I love that. And that actually leads right into my next question for you. Do you think that there’s a hierarchy of disability within the disability community and the larger communities we live in? And I mean by that, is there some sort of calculation that puts people with evident disabilities at the top of that hierarchy, and people with non-evident disabilities at the bottom? I think that that is so context dependent. I think about in wheelchair basketball, how people with very apparent disabilities don’t have to work really hard to prove that they belong in that space. I don’t need a doctor’s note in order to play wheelchair basketball, because somebody can look at me and they can know that I need a wheelchair to get around. And therefore, I have a qualifying disability. Somebody who wants to play wheelchair basketball with a non-apparent disability will need a doctor’s note to prove that they have the right to be in that space. Right? So in that context, there might be this hierarchy in terms of who is believed, right? What is the evidence that you deserve to receive this treatment that not everybody in the general population is allowed to receive? At the same time, somebody who plays wheelchair basketball might think that a person with minimal disabilities that look non-apparent, so maybe a person who has an injury in their leg for which they can’t run. So they qualify for wheelchair basketball. They might feel like that person who is more able-bodied if we like to think about disability and able bodied-ness as being on the spectrum, which is actually I think problematic to think about it linearly. But a person might see that person with his non-apparent ability as taking something away from them as taking playing time away from them because their sport was made for real disabled people. Right? So I think in that context, that’s one example of how hierarchy might come into play. And it really depends on the context. I think our entire world is structured by hierarchy. So absolutely, there are hierarchies everywhere we go. I also think that though I don’t have an invisible or non-apparent disability, I have this sense that people who don’t look, don’t appear to be disabled enough probably have really a harder time explaining when they need accommodations, right? When they need time to rest, when they have the [inaudible 00:15:52]. It’s my sense that in spaces like doctor’s offices or in work, or in friend groups, those folks might not be as easily believed as somebody whose disability is more apparent. And that’s a really great point. And I think it will lead into something that we’ll talk about it a little bit later. But the demand for people with disabilities, disabled people to fight for, prove that they have a right to show evidence to get access to the things that they need to live and enjoy their daily lives in the communities that we live in. And within a physical structure that doesn’t actually support easily maneuvering around it for people with disabilities. You know a lot of Liz Jackson’s work. And she is I want to say UX research designer. Correct? Yes. She’s many things. I’d say she’s a designer. And as a designer, she cares a lot about research. So she’s both designer and researcher. And she says that disabled people are the original life hackers. I think that’s one of your favorite. So the life hacker is really because daily, when we go out, we interact with the world around us, the physical world around us. We’re always making hacks, right? Trying to figure out and problem solve. Can you under or explain a little bit more about what she means by people with disabilities being the original life hackers? Yeah, absolutely. That’s one of the quotes that I use in almost every talk I give in my work. And when Liz Jackson says that disabled people are the original life hackers, she means that disabled folks embody a world that is often not designed for them. So a wheelchair user has to figure out how to navigate spaces with really steep hills and stairs. A person with a disability that affects their hands has to figure out how to do all of these things with their hands in ways that they have not been incorporated in the design. Like cutting, opening cans, stuff like that. And because of that, it’s just part of living with a disability that life forces you to be flexible, and to be creative, and to be problem-solving. So disabled folks actually have this wealth of knowledge. And when I say disabled folks, this absolutely applies to people with apparent disabilities, non-apparent disabilities. But disability absolutely forces the person to be creative in the ways that they approach things that aren’t built for them. So we have as a community this wonderfully rich wealth of knowledge that is often under-recognized and underappreciated. We talked a little bit about the disability culture. And that was something that I had never really thought about in terms of education and awareness, but there’s a rich history and a rich culture of the disability community that I think we need to start talking about and we need to start sharing with other people. When we think about where we fit, life hackers, the physical world that we live in. People who may appear to be disabled, people who don’t appear to be disabled. For someone living with an invisible illness, excuse me, I have this ability to kind of shift between the non-disabled and disabled world, right? So some days I’m not disabled enough to be part of the disabled community because maybe I feel really well that day. And then other days, I’m not well enough to be part of the non-disabled community because I don’t have the energy or the strength to actually put on that fake face for the day. So it’s this kind of going back and forth between these two different worlds. And then also, I’m not really always what people want or expect, right? They’re expecting someone with an apparent disability. When you go back to the norm for disability, it’s white and wheelchair use. So you and I, I’ve had a lot of experiences. I remember one time you came to my apartment and I was living in Playa del Rey. And it was so difficult to get you from your car into the apartment. I mean, it took us probably 30 minutes to figure out how to get you from point A to point B. Those are the types of things that we’re talking about with life hacking. The other thing about that hierarchy that you were talking about within wheelchair basketball, I have a funny story. And I’m sure that you remember this. The first time we traveled as a team, everyone on the team said, “Hey Sarah, don’t get out of your chair.” Or when they were going to actually give me a classification number, adaptive athletics for the National Wheelchair Basketball Association, they’re at classification levels, based on your ability level. How much muscle control you have in your stomach, how much arm control you have, how much leg control you have. I remember sitting there and I was about to get classified for the first time. And everybody said, “Just pretend that you have less ability than you have.” And I remember thinking wait, I don’t get it. I don’t understand why I have to fake having more of a disability than I already have. Then we got back to the airport, and I was very uncomfortable about if I get out of my chair and stand up, then everyone’s going to stare at me because why am I sitting in a chair if I can walk? Would you share one of our experiences that stands out most to you. And also that you could relate to the most. Yeah, I’m going back to the airport. And when our wheelchair basketball team travels, we have almost twice as many chairs as we have people. Because those of us who use manual wheelchairs to get around every day have our manual chairs in addition to our basketball chairs. So we’re a little bit of a shitshow when we travel. And we’ve got a lot of chairs, we’ve got a lot of equipment. And we just draw tons of attention as we are moving through the airport. So we go through the process of checking in our bags. And Sarah, and you ended up being last in line, which is quite funny because often if you’re standing with us, I feel like people sort of read you as maybe our caretaker. Or maybe the person, our manager is sort of in charge of us. Because you’re the able-bodied one apparently. So we have gone through the process, and we have deep knowledge about the ways that we can get through the airport. So as we checked our bags, we made sure to explain that we were checking bags with medical equipment, and therefore we didn’t have to pay the bag check fees. So we went through that process, and then we were waiting for you before we could go through security. And you went through and you tried to explain, “I’m checking my bag if it’s medical equipment in it,” which was true. But of course, you were met with deep suspicion and just absolutely bafflement really by the person who was checking you in, who could not understand why this person who was walking were trying to check medical equipment. And I remember you getting so frustrated, and I don’t remember whether or not you actually had to pay to check the bag. But when you came back to us, we absolutely understood what was going on because we are so conscious of how people are reading us all the time. Because we are frequently the gaze of people. We draw a lot of attention, especially when there’s a group of very visibly disabled people, we just draw a lot of attention. So we were understanding, we knew exactly what was happening. And while we didn’t share the experience of being met with suspicion, we absolutely shared the experience of understanding that when you have to go through bureaucratic processes like this and you’re disabled, you are clearly going through a process that is not designed to incorporate you. So either there has to be some side process, you have to do something differently. You have extra steps that you have to take. And it is frustrating, and it wears on you. And you just understand that this world was not designed for your needs. So we all understood exactly the frustration you were having, because we got it. That takes us back to what we were talking about. A doctor’s note to play wheelchair basketball. As people living with disabilities, I feel like it is often our responsibility to educate others about disabilities. Our responsibility to defend our own illness or disability. And I find that this is in a lot of relationships, even with provider relationships. We’re still defending how we’re feeling, even though we know our bodies so well. My question is where does our responsibility as disabled people end, and where does a societal responsibility begin? That’s such a good question. That’s such a good question. The fact that it is on our shoulders as disabled people to demand and advocate for our rights at each step of our lives is a clear example that this society is structured for people not like us, and we are seen as people on the margins, right? So it’s actually a very marginalizing experience to have to demand that you belong in society and to have the legal structure such that as we live in the United States right now, and with the laws, with the legal ecosystem that we’re navigating. When something goes wrong, it is up to us to defend ourselves, as you said. So we carry all of this responsibility with us. And that responsibility is really a symptom of an inequitable society. I don’t know quite how to answer the question, because what I want to say is it absolutely should not be up to us to need to educate people. And it should not be up to us to need to demand our right. But that is the structure in which we are working. I’ve been reading a lot about the ways that people can really burn out from all of the advocacy work and all of the work that people who are underserved and underrepresented, all of the work that they put into just existing and just experiencing a life that is free of unhappiness and stress, right? There’s so much work that goes into that. And there’s a lot of burnout that can come with that. So for people who are disabled and say, “I just don’t have the energy to educate people, and I don’t have the energy to sort of push the needle on how we think about disability.” I do not think there is anything wrong with that. And I think that we should embrace the society of risk, and we need to move towards deeper understandings of sustainable care, which I’m also getting from the book Care Work. And I think that it has to be a balance of understanding that yes, the system in which we operate is inequitable. And it’s not fair that disabled people need to be the ones ensuring that people with disabilities actually have the rights that they deserve. At the same time, we’ve got to make sure we don’t burn ourselves out. You and I, you’ve experienced my burnout. There was one point where I got extremely burned out in the work that I was doing, putting together the podcast, and my business. And my passion as you and I spoke about it, my passion really became a burden at that time. And you had done a tarot card reading for me. And I just remember sitting there just tearing up that yes, I’m exhausted. It’s work just to exist on a daily basis. Right? We don’t always have that energy to educate. And I think that I would like for you to talk a little bit about the rest and the sustainable care for people. Because when I felt that way, and this was a conscious decision although I don’t really think that I said, “Okay, I’m going to do some sustainable care right now. I’m doing some rest work right now.” I just said, “Okay, I’m extremely exhausted. This is not inspiring to me anymore. My passion is burning me out, and I’m going to set it down.” And I really set it down for two weeks and I didn’t look at it. I didn’t think about it. I think we talked during that time as well. And I was like, “I just can’t look at it or do anything with it.” And then one day I woke up two weeks later, and I was super excited, and I was interested again, and I rewrote the entire podcast schedule, and got back to work. So could you talk to us a little bit more about what you’re speaking of when you refer to rest and sustainable care? Yeah. I think you just gave such a really wonderful example of that. I mean the way that I approach my rest practice, it’s rooted in meditation. And I’ve found these [inaudible 00:29:04], which are Buddhist communities of practice and meditation that serve people with disabilities in particular. And they have been such a wonderful haven for me. So when I think about what it means for me to rest, it is giving myself time and permission to engage with something that is not productive in the capitalist sense of the word productivity. Right? So it has meant for me journaling, and taking a stab at writing a crappy novel, which I didn’t actually get to. And I was not disappointed with myself for only writing I don’t know, less than a chapter about that. Because I was just spending my time doing something that helped me feel restored. And for me, I’m sure this is different for everybody, but it’s a practice of checking in with myself, and understanding when I’m saying yes to things that are too tiring for me, and understanding why I need to say yes, why I feel compelled to say yes. And then of course, rethinking those things. So I think disabled folks eventually in their lives probably develop a deeper relationship to this. Even if they’re not engaged in social activism and feeling burnout from social activism, I think that people who live their lives with disabilities just understand that sometimes, our bodies and our minds run up against their limits. Sometimes, I just have to get out of my wheelchair. I mean, that has not been an issue since COVID because I’ve been lounging on my couch. And by lounging, I mean I’ve been working and doing everything on my couch. But sometimes, I just can’t pull myself out of bed. My body hurts. Sometimes, people get brain fog and they’re just like, “I’m in this brain fog for a few days. And I don’t know when it’s going to go away.” Right? So we have to already be mindful as people with disabilities and disabled people about understanding where the limits of our bodies lie and making sure we honor them, the limits of our bodies and our minds. So the way that I think about care work is kind of an extension of the way disabled people have actually already pushed back against systems of endless productivity, right? There’s been great critiques in academia by people with mental illness, right? And people with invisible disabilities about the demands of that practice that makes people just think all day and expects people to just be continually tired. And some people just cannot do that. So the care work that I am trying to instill is something that gives me spaciousness and that give me freedom to not feel productive. And I find that when I do that, I have so much more energy. I have this creative energy that can be applied to whether it’s communities, or writing a story. And it’s been really transformative for me. Yeah. I feel like you tried to help me with something like that. The freedom to not feel productive, feel like we had a conversation about that. I want to go back a little bit to the understanding that comes from having a disability. So when someone comes to you and says, “Listen, I’m just really fatigued.” Or, “I have brain fog.” One day we were going to record, and I had a horrible migraine. There was just no way we were going to be able to record. So we needed to reschedule. But I want to share with you an example of when even those of us who think we’re super mindful all the time, as I’ve been planning this podcast, I have a guest who may no longer be able to participate due to health issues. Well, my first reaction is to think about the podcast, right? I’m thinking oh my gosh, now I’m going to have this. And then I stopped myself mid thought and I’m like, “Oh my God, obviously. Yes, we need to be more conscientious of that, and understanding of that, and work with people.” So I think it really is about shifting our mindset. Again, going back to kind of what you’ve taught me is put that disability lens on when I take a look at the world. And it’s not always easy, and it doesn’t come easy to me all the time because of my experiences as well. As a white woman of privilege with invisible disabilities. Right? One thing that you and I have spoken a lot about is the intersectionality that exists for people with disabilities, and how that’s a natural existence. When we first started working on this podcast, I really wanted to highlight, right? I wanted to highlight that intersectionality, and I wanted to put it in red blinking lights and say at the intersection, Black Lives Matter and disability, or something along those lines. And I remember you coming to me and saying, “Sarah, that’s really, when you look at it,” and this kind of goes back to putting the disability lens on as we look at the world. “When you look at that, you’re calling it out as opposed to really understanding that that’s a natural intersection with race, gender, sexual orientation, and identity, all different social categorizations.” Why is it that our society has such a difficult time understanding the multifaceted beings that are people with disabilities? Why is it there’s such a push to put people into some type of box without understanding all the layers that go into their identities? That’s a good question. And just to give a little bit of context, intersectionality is a topic that emerged particularly from black feminism, and it was claimed by Kimberle Crenshaw. And intersectionality describes the way that people experience intersections of identities. So I experience an identity that is an intersection of whiteness. I’m a cis woman, right? So femininity, disability, middle-class, working-class identity. So these things come together in my own experience, right? And intersectionality is a wonderful way to view the world because it helps us understand that we all have these multiple intersecting identities. That nothing is simplistic, right? A person who’s black is not just a black person. They might experience a relationship to gender. They might experience a relationship to ability, to class. There’s all of these things that make a person who they are in this very rich, unique way. And I think that one of the things that we need to be aware of as we’ve had these growing conversation about diversity and intersectionality, one thing that we need to be aware of particularly as white people is that when we are calling something out at nonwhite as intersectional or diverse, we are still validating the white experience as the sort of true baseline experience. But anything but divergence from that is not standard and is best called out. Right? So I think that in conversations on intersectionality, it’s also important to talk about the way whiteness is part of intersectionality as well. And I think that in particular with disability, there is this sort of history in the United States of disability, right? Emerging a little bit. I mean, The Disability Rights Movement sort of follows in the footsteps of the black rights movement, right? This really paved the way for the disability rights movement. However, it has tended to center the voices of white people. It doesn’t mean that all of the disability activists have been white. I think if you’ve seen the movie Crip Camp, which is a wonderful movie, you might observe that that was this really multi-ethnic and quite diverse sort of movement that came together in the ’60s. However, disability as it’s understood in popular culture has really been white disability, right? And there’s been again, critique from in academia. A lot of people have critiqued disability studies for being white disability studies. And there’s really wonderful ways that people are re-imagining disability rights in a way that incorporates disabled people who are indigenous, disabled people who are black, [inaudible 00:38:14] disability studies as understanding the importance of black people with disabilities and everything that they have to contribute that has not been incorporated into the canon of disability studies yet. So I think the tension has been around understanding disability as something that has privileged the voices of white disabled people. And on the next episode, I actually talked with Leroy Moore, the founder of Krip-Hop nation. And he was sharing with me that after they signed the ADA, that they had another protest that was the other side of the ADA. Because black folk were completely not included in the materials, didn’t have a place at the table. So I have a question. It’s a question that actually was posed to readers by S.E. Smith. And he’s a National Magazine Award winning Northern California based writer. And his work has appeared in The Guardian and Rolling Stone, and so many other publications. And the question that he posed is what might the world be like I wonder, if we could stop judging everyone for asking for accommodations? If we could silently build a place that is welcoming and inclusive for all bodies. If we could stop treating accommodation and respect finite resources that will run out if we don’t hoard them. Be kind, says an often misattributed quote that seems to have arisen from the zeitgeist, for everyone around you is fighting a hard battle. And I think that when we take this into consideration, we have a lot of work cut out for us. Yeah. That quote made me think of all of the talk that I hear lately about scarcity. So Sonya Renee Taylor talks about scarcity. Brene Brown talks about how we live in this mindset of scarcity. And I think the tension of accommodation is that we have to ask people for help and we have to ask people to change the ways that they do things. And that’s really hard in a setting in which we live in a scarcity mindset in which we think that making adjustments and shifting things will take time away from something else that we need to be spending our time on, or will take resources away from something else that we need to be spending our resources on. And until we get to a point in which we understand that actually the entire world is enriched when more people can participate, we’re going to be stuck in this tension of accommodations. And it’s not a good world for people on either side. I agree. I completely agree. Molly, thank you once again for having, not only this conversation with me here today. But also, the many conversations we’ve had over the past few months. I’m thankful for your time and energy. For our listeners, if you’d like to know more about the work Molly has done and is currently doing in the disability equity and inclusion space, please check out her LinkedIn profile at Molly-Bloom. And once again to our listeners, thank you for spending your time with us and joining the Incluse This conversation and movement. Incluse This is brought to you by Eye Level Communications, LLC. Eye Level is a California based woman and disability owned small business committed to having critical conversations at eye level that are necessary to move disability to the forefront of the greater diversity conversation. If you’d like to learn more about the work we’re doing, please visit the website at www.eyelevel.works. You can also email me directly with any podcast episode ideas or questions and comments at sarah@eyelevel.works. Remember to put your disability lens on when you look at the world, and tune in next week for another stimulating conversation on Incluse This, the podcast that’s really a movement. Take care and be well.

2021 Season 1 Trailer An introduction to Incluse This! with host Sarah Kirwan. https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/T1_Incluse_This_Trailer_Mixdown_1.mp3 QUICK LINKS As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability. YOUR HOST: Sarah E Kirwan, MSPA Sarah is the Founder and CEO of Eye Level Communications, LLC (Eye Level), a California-based disability and woman-owned small business. Eye Level offers disability equity and inclusion training, strategic business consulting services, and speaking engagements that connect communities and drive positive social change for people living with disabilities. She is a public administration professional with more than 25-years of experience, and her work and research for the last decade has focused on healthcare administration, communications, training, and policy. In 2011, Sarah was diagnosed with Relapsing-Remitting Multiple Sclerosis, and in 2019, she was diagnosed with Superior Semi-Circular Canal Dehiscence, a rare inner-ear disorder. Her personal and professional experiences have made her a passionate disability rights champion, and she’s dedicated to having the critical conversations at eye level that connect people to each other, to their communities, and most importantly, to themselves. Sarah has appeared in several advocacy videos for the National Multiple Sclerosis Society, and she’s been interviewed for feature articles in Prevention Magazine. She is a member of the National Small Business Association Leadership Council, and the National and California Diversity Councils. She earned her Master of Science in Public Administration degree from California State University, Los Angeles. TRANSCRIPT Hi, and welcome to Incluse This!. I’m your host, Sarah Kirwan, and this is a movement for disability equity. 10 months ago, I really had no idea what a podcast was or that I’d be here introducing my own today. What I did know is that I was determined to use my voice in the most productive way I knew how, and Incluse This is the result of the work that I’ve done. I started slowly after the COVID pandemic hit the United States, as ableist messaging was running rampant in all public communications. Then I started working more aggressively on this project after the murder of George Floyd. In the weeks that followed, I searched for answers to my own questions. Why now? Why hadn’t I used my white voice of privilege sooner? I felt shame and I felt guilt for not crying out against the inhumane treatment of so many people of color in our country. And then all I felt was anger. I couldn’t join the protests or march in the streets because I am auto immune compromised, but I wondered, who’s protecting the First Amendment rights of disabled folks to peacefully protest and join friends and allies in the Black Lives Matter movement? I was an activist who couldn’t act, and the more I watched and read the news, the more I felt this inner desire and push to use my voice for change in whatever way I could. I started having daily conversations with friends and colleagues of color and I began networking with a larger group of activists around the world, as I desperately wanted to enhance my understanding of the inequitable foundation and infrastructure our country was built upon and around. Then, I asked myself these amazing questions that were posed to Priya Parker, the author of The Art of Gathering, at a very young age by her mother. What is it that I know how to do? Where’s the need? How can I help? And I answered them with the help of many friends and colleagues. What I know how to do is advocate for people with disabilities, because I am one. Where’s the need? It’s all over the world. And how can I help? By using my voice to provide disability education and awareness. So Incluse This is about having conversations and making mistakes. It’s a space where we can explore different perceptions of disability, as well as inclusion and equity for disabled people. I want to have more meaningful conversations about disability. I want to explore ideas. And I want to bring shared experiences to the table in order to connect communities and drive positive social change for people living with disabilities. And I want to more deeply connect with the disability community myself. Episodes of Incluse This! will drop every Wednesday and you can find them on Apple Podcasts, Spotify, Google Podcasts, TuneIn and Stitcher. Subscribe today so you don’t miss out. Remember to put your disability lens on when you look at the world and tune in next week for another stimulating conversation on Incluse This!. The podcast that’s really a movement. Take care and be well.