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Noncompliant - the podcast
23 minutes | a month ago
“They prey on unsuspecting parents who think they’re helping their child”: Interview with Amanda Seigler about bogus autism research at universities, Part 2
Amanda Seigler This is part 2 of my interview with Amanda Seigler, a children’s rights advocate and autistic activist, about university studies on autism that have questionable ethics. We talk about Duke University’s experiments where autistic preschoolers are being restrained and injected with stem cells to see if it will change them. There are many risks involved and no benefit to this process, which is currently under fire for conflicts of interest. Read my in-depth report about the study here. Sign the petition against the study here. Listen to Part 1 of the interview here. Listen to the audio of part 2 at the link below or find it on iTunes or other podcast platforms. Transcript: Transcript_Seigler2_Noncompliant https://noncompliantpodcast.com/wp-content/uploads/2020/12/Noncompliant_Amanda_Interview_Part_02.mp3
38 minutes | a month ago
“There must be some sort of echo chamber that this is all coming out of” Interview with Amanda Seigler about bogus autism research at universities: Part 1
Amanda’s organization: Fierce Autistics and Allies I spoke with Amanda Seigler, a children’s rights advocate and autistic activist about two studies at Yale which raise serious ethical issues about their use of human subjects. Audio below. Also on iTunes/ podcast platforms. Transcribed by Julie Ann Lee: Transcript_Seigler_Pt1_Noncompliant . https://noncompliantpodcast.com/wp-content/uploads/2020/12/Noncompliant_Amanda_Interview_Part_01.mp3 . One study frightened autistic toddlers (and a non-diagnosed control group) in various ways, such as putting them in a room with mechanical spiders and surprising them with grotesque masks to see how afraid autistic toddlers get in comparison to likely non-autistic toddlers—a textbook example of how not to do research. Read Emily Willingham’s response to the study Sign the petition to retract the study The other study, which also enigmatically passed an ethics review, involved putting Nicotine patches on autistic people with violent meltdowns to see if the nicotine would randomly stop them from being aggressive, even though there are already evidence-based approaches to de-escalation in these circumstances. Amanda and I discussed how it is that research like this gets funded at universities and what can be done to protect vulnerable people by preventing this type of research from being approved. Listen to Part 2 of the interview here.
5 minutes | a month ago
A neurodivergent guide to your radiation treatments
I wrote this recently, about radiation treatment for cancer. To listen, click the audio file below. Transcript: A Neurodivergent Guide to Cancer Treatments https://noncompliantpodcast.com/wp-content/uploads/2020/12/Anne_Borden_Dec211.mp3 .
37 minutes | a month ago
“Often, autistic people are seen as inspiring for overcoming ‘autism,’ not for overcoming the obstacles that the world puts around them”: Interview with journalist Eric Garcia
Eric Garcia I had a really interesting conversation with journalist Eric Garcia about his upcoming book, We’re Not Broken, which focuses on the social and policy gaps that exist in supporting autistic people. We talked about the current policy landscape, media bias and the challenges and recent triumphs of the autistic rights movement. Listen to the podcast here by clicking the audio link below –or on Stitcher here or on iTunes here (Transcript below audio) Transcription by Julie Ann Lee: Transcript_Noncompliant_Eric_Garcia . https://noncompliantpodcast.com/wp-content/uploads/2020/12/Noncompliant_Eric_Interview.mp3 . . Bio Eric Garcia is a journalist based in Washington, D.C. His first book We’re Not Broken: Changing the Autism Conversation is coming out in August 2021. Eric previously worked at The Washington Post, The Hill, Roll Call, National Journal and MarketWatch. His new book uses his life as a springboard to discuss the social and policy gaps that exist in supporting autistic people. It looks at politics; education; employment; independent living; relationships/sexuality; gender; race and the future of the neurodiversity movement.
48 minutes | 2 months ago
“The goal of autism research should be to improve the quality of life for autistic people” Interview with Simon Baron Cohen
Simon Baron Cohen . I had a very interesting conversation with psychologist Simon Baron Cohen, whose new book The Pattern Seekers, discusses the history of invention, the importance of recognizing and valuing neurodiversity, and the challenges of bringing change to institutions such as schools and the workplace to create better working and learning environments for autistic people. Listen to the podcast here by clicking the audio link below –or on Stitcher here or on iTunes here (Transcript below audio) . https://noncompliantpodcast.com/wp-content/uploads/2020/12/ARC_Podcast_1.mp3 . Transcription by Julie-Ann Lee: Transcript_Noncompliant_Baron_Cohen Bio Simon Baron-Cohen is professor of psychology and psychiatry and director of the Autism Research Centre at Cambridge University. He is the author of six hundred scientific articles and four books, including The Science of Evil and The Essential Difference. On this podcast, we discussed his new book, The Pattern Seekers.
4 minutes | 2 months ago
Time to Breathe
I wrote this about the pandemic, cancer and what’s happened to time. Audio below. Transcript: Transcript_Time to breathe https://noncompliantpodcast.com/wp-content/uploads/2020/12/Time_to_Breath_02.mp3 .
48 minutes | 2 months ago
“The things we don’t talk about”: A Cross-Interview with CripChat UK!
I had the great pleasure and honour of talking with Shabaaz and Pete from CripChat UK, on their podcast. We discussed autism pseudoscience, the Sia film controversy and much more. Listen to the podcast right here by clicking the audio link below or on Stitcher here or on iTunes here . Transcript: Transcript_CripChatUK_1 . https://noncompliantpodcast.com/wp-content/uploads/2020/11/KCfinaledit-28_11_2020.mp3 . Listen to CripChat UK on Podbean here. Great guests and discussions every week!
8 minutes | 3 months ago
Half a Woman
. I wrote this after my recent surgery. Audio here, transcript below. https://noncompliantpodcast.com/wp-content/uploads/2020/11/Nov13_Blog1.mp3 . Half a Woman You have to take off your wedding ring before surgery. I remembered that as we were rushing around at 6am, trying to get out of the house on time for me to check in at the hospital. There was a lot to remember that morning: what clothes to bring, my health card (but no wallet), the book, pen and paper, my glasses, a quick drink of juice in that last hour I could eat or drink anything. Then there were the big hugs, too many, it made me late, as the boys stood and watched me walk into the hospital. The line was short that time of day. The usual questions, the hand sanitizer, stand in the footprints at the elevators. Then I’m there on the second floor and it’s just like the last time, except it’s a new hospital, a brighter and friendlier place and throughout the morning during surgery prep we all get to know each other a bit. Surgery then gets delayed due to someone else’s emergency taking over some rooms, but I have a bed to lie on and a book and the hope that mine won’t be canceled today. Today, I’m lucky. I’m rolling into the surgical theatre at 5pm as the nurse holds an oxygen mask and asks me to think of a place I like to go. And again, it isn’t heaven, I don’t know where it is but I wake up in the recovery room later, half a woman. I have bilateral breast cancer. With 3 lumpectomies and an excision, there is a lot less of me there now. I didn’t realize when I first had surgery just what was going to be leaving me…all I could think of was the cancer is leaving me. I wasn’t offered plastic surgery at my first surgery but I was for the second. I wavered. It was never going to be the same and I didn’t want to get caught in a place of trying to make it be. My surgeon encouraged me though, to speak to the plastic surgeon, to be sure of my choice …so I sat in a robe in her office while she described what she would do in a series of surgeries. It was about matching their size, so they’d look more the same size. I was a cultural studies major, I mean, grad school, I know, I understand the whole symmetry thing. That symmetry makes us more naturally attractive, they say, for mate selection, it’s evolution, we learn… an advantage. That it’s in our culture… I know. Some women fear not getting a husband, fear losing their own husband, just want to look in the mirror and feel good, see symmetry when clothed. When naked, too…some women have skin moved from their own belly, their baby bump, up to replace a part of breast, or a whole breast, there are silicon options and even 3-d nipple tattoos. One woman in my support group was told by her hospital that going flat after her mastectomy was not even an option, that’s how normative reconstruction is. She did it because she felt she had to. So the plan the plastic surgeon was outlining, as I sat in my robe at the edge of the consult table, was to move things around, to lift, arrange, cut out a piece of muscle from my back and move it to my front, something about a spacer and if I did that one I couldn’t do some of my fitness things I love but there were other options too… and it all felt strange, alien to my body and I felt protective and a little defensive. My girls had been through some stuff lately …and the way they looked and felt? I wanted to accept them as they are. Make everyone accept them as they are. I wanted to stay whole just as I am. At age 16, my mom enrolled us in a mother-daughter assertiveness self defense class, sponsored by the rape crisis centre in our town. In the first lesson, we all practiced saying no. Our teacher was a lovely, friendly, handsome woman whose nickname was Mike, and she coached us through. Louder! Say it Loud! We held up our fists as protection, we kicked, we shouted NO! As students, we tried not to laugh as we “attacked” each other in the drills, it felt funny to touch that way and at first we were apologizing for pushing at each other, lifting and flipping, going on the offense, the defense, but these were things we needed to do to each other to be ready for the world, by the end there were no apologies, no smiles. No came easily. I used it, through high school, through college, at work, at parties, riding alone in the back of a cab or on line at a show, at conferences, at the library, at the pub, on the subway, in the park or in the myriad other places where men want to push women, I could push back. The word held power like, a force field around my body, a bodyguard for my girls, whom I loved. It worked in advocacy too…whether for a student or a colleague or for, myself, when the expected answer was yes but my mind said no, I thought of Ms. Mike guiding me as I kicked my leg. It’s not always a yell, sometimes it’s just nicely saying “This isn’t for me.” Both take strength. So when my surgeon asked if I’d decided to add the plastic surgery, the word came out again. I knew that most women probably don’t say no to all that free beauty. I understand why they say yes and… I’d thought of saying yes too. But I want to keep my breasts as they are, maybe because I’m different too now. After walking through fire in chemo, radiation to come, having surgeries, going through it all…no. And I know I’ll get another ask, if I am sure or if my no isn’t just all the trauma of the past 6 months talking…that I’ll be told I can always change my mind like some do and go back for a revision later, after. After all this is…over. And this time I don’t say no to my sisters who tell me to keep my options open, who seem worried about my symmetry, or worried that I will worry over it. I know it comes from a place of caring but I also wish there was more space for a caring validation that we’re all worthy of love even without perfect symmetry and that those of us who’ve walked through the fire need most of all to know we are still whole, even after loss. In the booklet from the hospital this comes in one single line, like poetry, at the very end of the very long section on breast reconstruction options. And here’s what it says: “It is also ok to decide that you don’t want any of these options.” I couldn’t remember where I’d left my ring. In the early-morning rush, it had slipped into the flow of our household, amidst pens and meeting notes, drawings, coffee mugs, rocks and sea glass, charger cords and stacks of books. It was somewhere special, I just knew it, but where? I went to sleep that night in a post-hospital haze, to wake up in the afternoon and reach over on the bedside table. The ring was there. Our house was quiet, the guys were out. I slid my ring onto my finger and sat in the silence contemplating my hands and then my whole body in itself, in my home and in the world. A body that grew into itself, that said the nos and also the yeses and married and moved and changed, that held closely another life, and another… a body that will grow older too, if I’m lucky.
28 minutes | 4 months ago
“Most of the victims have to move on from these pathological relations”: Interview with Dr. Marc D. Feldman about medical child abuse
I had a very informative and thought-provoking conversation with Dr. Marc D. Feldman, an expert on medical child abuse and factitious disorder. We talked about medical child abuse, including Munchausen-by-proxy and the abuse of autistic children through autism pseudoscience. We also talked about interventions and supports, the need for education and what we all can do to stop the abuse. Listen to the podcast right here by clicking the audio link below.Listen to this episode on Stitcher hereListen to this episode on iTunes here https://noncompliantpodcast.com/wp-content/uploads/2020/10/drfeldman_podcast_2.mp3 Transcript, by Julie Ann Lee: Feldman_Transcript_Noncompliant_The_Podcast BioDr. Marc D. Feldman is Clinical Professor of Psychiatry and Adjunct Professor of Psychology at the University of Alabama in Tuscaloosa. A Distinguished Fellow of the American Psychiatric Association, he is the author of 5 books and more than 100 peer-reviewed articles in the professional literature. Dr. Feldman is an international expert in factitious disorder, Munchausen syndrome, Munchausen by proxy, and malingering. In his recent book, Dying to be Ill: True Stories of Medical Deception, Dr. Feldman, with Gregory Yates, has chronicled people’s acts and motivations in fabricating or inducing illness or injury in themselves or their dependents. Links:American Professional Society on the Abuse of Children (registration required for some resources but the content is free.
16 minutes | 4 months ago
I wrote this piece about the pandemic while I was having chemo (which I finished a couple weeks ago). It provides a first-person look at cancer care in Toronto during the pandemic. The piece runs the range of emotions and that was a conscious decision…because one thing I’ve noticed is that we’ve not really given ourselves permission to express the grief associated with this pandemic, as a culture, in Canada. As a transplanted American, it’s quite startling to me. These are things we need to make visible. https://noncompliantpodcast.com/wp-content/uploads/2020/10/anne_blog_2.mp3 Transcript: Transcript_Cancer_in_Covid_Noncompliant .
54 minutes | 7 months ago
“Remove and normalize”: Discussing Canada’s residential institution history with Megan Linton
In this episode, I talk to scholar Megan Linton about the history and current status of residential institutions for autistic and neurodiverse youth in Canada. Content warning: Discussion of sexual assault, institutional abuse. Click to hear the audio below or find the podcast on Stitcher here and iTunes here https://noncompliantpodcast.com/wp-content/uploads/2020/07/non_compliant_megan_02.mp3 Transcript: Noncompliant_Transcript_Megan_Linton Bio: Megan Linton is a disabled student earning her Masters of Public Policy and Administration at Carleton University, where she is currently working on thesis research surrounding sexual citizenship for institutionalized populations. Megan’s research interests include data gaps and disabled people, incarceration, and legacies of eugenics in Canada. Megan and I talk about the largely unwritten history of residential institutions for autistic and neurodiverse youth in Canada—a history that she and other scholars are now documenting along with Canada’s eugenics practices, which operated hand in hand with the residential institution system. We also discuss shifting notions of eugenics in the postwar period, revolving around anxieties about “the creation of the conformed family.” As Megan points out: “This was the goal of the moral reformers for decades leading up to that point. Every single part of constructing Canadian citizenship was about enforcing order and conformity, so when we saw the construction of the carceral settings throughout the mid 19th century then we too saw the building of ‘The Canadian Citizen’ [including] this construction of the deviant other who needs to be put away and those outside of the institution are those who are conforming.” We also discuss how “reformed” institutions today maintain the same purposes as the older institutions, even as the Canadian government has promised de-institutionalization for decades. Megan discusses how, in Manitoba, provincial political parties bent to lobby pressure to keep the institutions open and how progressive politicians turned their back on human rights in favour of “jobs in the community” and pressure from labour. One residential institution in Ontario, the CPRI, now a so-called therapy centre for neurodiverse youth, is housed in a former sanitarium and located at the end of a street named Sanitarium Road. Like the older residential institutions, which meted out class action human rights settlements in the hundreds of millions, the CPRI is now the subject of a class action by former residents as recent as 2011. Megan and I focussed on both the large institutions (50 or more youth) and then on the small “i” institutions–such as group homes. Both Megan and I place these on a continuum of segregation, along with all-day programs such as sheltered workshops for adults and Intensive Behaviour Intervention centres for preschoolers. Megan and I conclude by talking about alternatives – viable solutions such as independent-supported community living and the money-follows-the-person model in some parts of the US. In Canada, 80% of federal funds for housing for I/DD people go towards segregated housing or “congregate care” homes and only 20% goes towards independent living in the community. Yet there’s robust research that shows clear benefits of living in the community, for I/DD individuals and for the community. Canadian politicians To change the policy landscape, we need to apply pressure on politicians as we also work for a broad societal understanding of the human rights of disabled people and the true options that are available outside of Canada’s residential institution model. Links Linton, Megan. We Have Always Been Disposable: The Structural Violence of Neoliberal Healthcare. Canadian Dimension. March 31, 2020. Autistics for Autistics. Controversial Residential Institution to Lead Workshops for Parents of Autistic Children. a4aontario.com. January 3, 2020.
4 minutes | 7 months ago
Heaven and earth
I wrote this as I’m getting ready to start chemo. Audio file with transcript below. https://noncompliantpodcast.com/wp-content/uploads/2020/07/blog_audio_2.mp3 I can’t really imagine what heaven will be like. I did think about it when they walked me into the operating room, yeah, in Canada they just walk you right in to your surgery. There’s hot white light in there…in the operating room I mean…and I closed my eyes to it as a nurse called out my stats to the team. I thought about my cat then from when I was a kid and I imagined petting him again. i thought well, my cat will be in heaven and oh well….Maybe I’ll be going there now, I thought. But I didn’t. I woke up. And the world was full of people and beautiful. Is heaven like that? With cool breezes and kids running past? Is it summer in heaven? Do we hear the tick-tick of bicycles and feel the warm sun on our backs? Are there a lot of people? Are they all talking at once? Or is it quiet —like under the water during a really good swim? I’m waiting now to start my chemo in 3 weeks. The prognosis is I will probably see more summers after this one. I hope. Summer feels like heaven must be —like at the city pool. Because of Covid I’ll have to avoid the pools during chemo, so we’re going every day now till it starts. We go in the afternoon. My son plays with the other kids and I swim laps close by. It’s so quiet under the water. A muted world. My mind travels to past present and future. I find myself dreaming as I swim and flip, swim, flip. Dreaming about the long summers before this one, the easiness of life, and of a future where life is back to normal, when this pandemic crisis comes to an end… Is there an end? I wonder. Then I flip. And swim, flip and dream again. Cancer really changed how I look at death. You’ll see, at whatever time in your life that life gets reduced on paper to probabilities, to 5 and 10 year increments scrawled by a busy doctor. When you’re asked to balance the decisions that are yours with the factors that you can’t change. The thing you can’t believe at first. You’ll see. I drew away from life just after my diagnosis. That’s normal. It can last. Eventually you jump back in —but you’re different though. Now Covid…Covid changed how I look at life. Right? In the early weeks of the pandemic the past felt suspended in air like pictures of the gone world. What happened? How do we make a new life? What do we do with the now? Do we hoard our moments like a poet, scrawling them down, sketching and photographing them for later? There’s a before and and after now. What’s coming ahead of us in this world of the post? Is pre and post any way to look at the world? What are the other ways? In the deep end I dive down —and watch my shadow float over glittery mandalas of sunlight on the pool floor… then I see another shadow following. It’s my son, he’s stopped playing to come swim along and do the grown up thing. It’s quiet here as we glide. Then a faraway, oceanic whistle sounds: the 5 minute warning from the lifeguards above. It’s time to swim to the edge. They have to clean the pool for the next people. We emerge to the world again and make our way through the scratchy grass and clover, home.
46 minutes | 7 months ago
“Everyone Can Do Something to Stop Autism Pseudoscience”: Interview with Melissa Eaton
In this podcast, I interviewed Melissa Eaton, one of the first (and most effective) campaigners against autism pseudoscience. We talked about phony autism cures and what we can all do to stop the people selling them. Listen to the podcast right here by clicking the audio link below. Listen to this episode on Stitcher here Listen to this episode on iTunes here https://noncompliantpodcast.com/wp-content/uploads/2020/06/non_compliant_melissa_01.mp3 Transcription, by Julie-Anne Lee: Transcript_Melissa_Eaton_Noncompliant Bio: Melissa Eaton, a parent of an autistic child, became aware autistic children were being abused with harmful pseudoscientific and unregulated treatments in 2014, after her son was diagnosed. She joined other activists who were campaigning against it and she is one of the key figures in the movement to get phony MMS “bleach for autism” treatments banned, among others. Her work has been featured on NBC and other media and she recently co-wrote an OpEd for the New York Times about the impact of MMS marketers on the Covid crisis. She has worked tirelessly, giving her time and energy for free to stop autism pseudoscience. Because of her efforts, the movement has made many strides in the uphill battle to get our regulators to recognize the human rights of autistic children and protect them. Melissa is a true hero and I was honoured to speak with her for this podcast! The episode: We started with a summary of some of the major phony autism cures/ autism pseudoscience. We focused on chelation, MMS (bleach for autism) and GcMAF. We discussed why they are dangerous; how popular they are; how sellers market to parents via social media; and how much sellers profit from their scams. We then explored legal regulations… when they work (stories of success) and why it is often hard to get governments to stop the scammers from selling these products (the challenges we still face). We also talked about the role of social media and journalism in exposing and de-platforming the scams. We discussed the broader societal biases against autistic people–and against children that allow parents to embrace these “cures” and thatalso prevent regulators from using common sense and truly shutting them down. This last point pivoted us to a discussion of autistic acceptance and how the rights of autistic children to health and safety is core to the neurodiversity movement. The first group to identify autism pseudoscience was the autistic-led UK-based group Autistic Inclusive Meets when it launched in 2016. In Canada, Autistics for Autistics launched in 2017 with stopping phony cures an integral part of its mandate. In the US, Fierce Autistics and Allies and In the Loop About Neurodiversity also immediately incorporated fighting pseudoscience into their platforms. The project Thinking Person’s Guide to Autism regularly covers the need to confront autism pseudoscience and to make reforms within the field of autism science. But the campaign to end autism pseudoscience does not get any support from traditional, large, NT-led “autism” organizations such as Autism Speaks and Autism Canada (both of which have a long history of reinforcing autism pseudoscience). Melissa and I talked about that towards the end of the podcast: Anne: What’s happening to these children is torture. Autistic children are being tortured. Where are the “autism organizations”? They are nowhere to be found. Because somewhere deep inside, they can’t make that leap towards autistic acceptance. And it shows that the “autism organizations” are really broken. The people who are going to bring about human rights protections are the autistic-led self-advocacy organizations, because they’re the only ones who are… even making a statement about autism pseudoscience. These appear, to us, to be really basic concepts, so we really have to ask ourselves why. Why won’t the mainstream autism organizations take a stand on this? Melissa: These [mainstream] organizations continue to collect money from communities. This money could be going to things that actually help autistics. And they’re not addressing the problems of autistics like autistic-led organizations are doing. Autistic-led groups definitely have the grasp of what needs to happen and the supports that are needed within their communities, yet they’re overshadowed by these bigger organizations who do not have autistic interests in mind. Melissa and I talked then about how we keep hope, and the smaller victories that build towards the kind of major reform we are slowly achieving. Melissa pointed out the role that each individual can have in education and the importance of grassroots advocacy. “Everybody can do something,” whether it is signing petitions, reporting, flagging, complaints, letters, media awareness, or many other means of support. Conversations in parent groups also make a world of difference. After the interview was over, Melissa and I talked about a few groups online that are bringing these parent discussions to the fore, including Autism Inclusivity and Autistic Allies. Thanks for listening!
44 minutes | 8 months ago
How “crunchy” got crushed: An interview with naturopathic doctor Matt Brignall
In this episode, I talk with Matt Brignall, ND, about how the natural health movement has been co-opted over the past 3 decades by capitalist interests, as well as what we can all do to counter Covid pseudoscience and antivax. Listen to the podcast here by clicking the audio link below. Listen to this episode on Stitcher here Listen to this episode on iTunes here https://noncompliantpodcast.com/wp-content/uploads/2020/05/brignall_noncompliant.mp3 Transcription by Julie-Ann Lee: Transcription_Matt_Brignall_Noncompliant Bio: Matt Brignall, ND is a naturopathic doctor in Tacoma, Washington. He currently works in a community-based primary care practice. For nearly 20 years, he was a professor in the naturopathic training program at Bastyr University. He left because he felt that the alternative medicine community was losing its ethical bearings, and becoming a threat to individual and public health. In addition to his practice, he is currently working as part of the Medical Reserve Corps COVID-19 response team. Matt is the parent of a 20-year-old daughter with Rett syndrome, and is active in disability advocacy. The Episode: I was really glad to talk to Matt because we come from similar backgrounds and we have both witnessed the natural foods/health movement, which was once mostly about supporting workers and farmers, now being co-opted by corporate interests who’ve morphed it around a model of personal “wellness,” complete with gurus telling people which snake oil products to buy (and earning billions from it). We also addressed how, in Covid times, predatory right wing interests are leveraging people’s fears to build momentum for political and white- supremacist movements. Persuasion across differences: Matt and I talked about science communication; namely, how do we really convince people, within our own families and communities, to steer clear of the toxicity of the Mercola/Natural News empire, to detect pseudoscience and to understand the importance of vaccinating? There is a clear need for more compassion and compromise, for the sake of persuasion and also for preventing radicalization. We need to stop the divisiveness between science and anti-science because this divisiveness only serves to make things worse. Matt’s website, NDs for Vaccines, offers a wealth of information for naturopaths as well as consumers on the safety and the need for vaccines. It’s really about creating an environment to find common ground and solutions– that might not always be the solutions we want in a perfect world, but which are realistic and bring us closer to public health goals. In my own family and community (homeschool community), I follow these guidelines: choose wisely who I want to spend energy discussing this with (not trolls!); focus on common perspectives; mainly lead by example (talk about what my own family is doing and why, rather than “should-ing” on people); never call names or make fun of a person; focus on conversing with people I know personally; and show flexibility (e.g., be open to solutions that aren’t my perfect solution). Monsanto & the problem of orthodoxies: Monsanto “millennial engagement” campaign (which I reference in the podcast) is an example of how corporate influence on our community really diluted a central message about vaccine safety. Much like Mercola & Company co-opted the natural health movement, so did players like Monsanto attempt to infiltrate issue/interest-based social media groups (environmental, pro-vax, STEM) to develop an association between their product and a range of science-based movements—seeming to want to create a “science orthodoxy” in which supporting their corporate brand was central to being a good scientific comrade. Journalist Kavin Senapathy observed the following dynamic from Vance Crowe, Monsanto’s Director of the initiative: “Crowe preached a scientific gospel of GMOs that went something like this: If you’re pro-science, you must be pro-GMO. If you’re anti-Monsanto, then you’re anti-GMO. Therefore, if you’re anti-Monsanto, you’re anti-science. His objective, it seemed, was to render opposition to GMOs as ridiculous as belief in Bigfoot, and to amass a movement that could be counted on to shout that message from the rooftops.” Monsanto’s intrusion into specific science-related groups created credibility problems for the groups, especially vaccine-focused groups. At the height of it, vaccines and Monsanto had become mixed in some dialogues, as if one couldn’t support vaccines without uncritically supporting Monsanto. We now know much of the GMO rhetoric had been planted in science groups by the company itself and that a few of high-profile “pro-science” voices were actively promoting the Monsanto brand. Going forward, we should all take care to stay on topic if we want to be persuasive (e.g., climate change, vaccines) rather than demanding adherence to completely unrelated belief systems, especially when these focus around a brand. Re-open protests and the radical right Much like Monsanto’s approach, pseudoscience purveyors like Mercola/Natural News and Del Bigtree’s enterprise infiltrated counter-cultures on social media (including the home ed community) in an attempt to institute a sort of orthodoxy that conveniently includes supporting their brand. Within that belief system, if you have a nuanced perspective on nearly anything, you’re just a sheeple. Ironically, Mercola, Bigtree and other leaders require a fairly sheep-like adherence to their belief system. This is deeply disturbing, especially as antivaccine and vaccine-hesitant groups have been drifting further to the right wing politically, particularly since their views are currently being validated by the current US administration (see links, below.) Followers are not just being told how to buy anymore. They are also being told how to vote. Political groups like the Tea Party have been promoting and leveraging the re-open protests for their own agendas and sometimes for a corporate agenda (see links, below). And we are now dealing with the US President normalizing what were formerly seen as fringe, pseudoscience views. Examples include Trump’s supportive comments about antivax, and his seeming to recommend products like MMS bleach for Covid which “wellness guru” Mercola also endorses. (See my OpEd about this in the links below.) In many ways, corporate interests and the radical right have been working together to radicalize antivax, home ed and other traditionally non-partisan groups towards the far right (see links at end). Beyond the grassroots communities, right wing lawmakers in the US–and at least one far-right political party and the Yellow Vests movement in Canada are also leveraging the alienation within antivax communities to recruit new members (see links below). Social media is a key pathway for this. It seems like good news this week that Natural News was removed from the Facebook platform… but these groups can also move to new, even less-regulated platforms, and of course they even have a bigger platform now within some powerful political movements. Those of us working against pseudoscience and/or in antifascism really have our work cut out for us. As Matt states: “We’re really only in chapter 2 or 3 of a very long book.” Links from the podcast: Inside Monsanto’s Millennial Outreach GMO campaign Steve Silberman’s TED Talk about antivax and the power of storytelling New York Times: Donald Trump and Covid Pseudoscience (I co-wrote this OpEd!) Washington Post: The Empire of Joseph Mercola Washington Post: The powerful right wing networks behind the re-open protests in the US NYT: Corporate interests behind the re-open rallies DeVos -funded group organized re-open rallies in Michigan Canada: Free North Patriots recruit from antivax groups for re-open rallies SPLC: Right-wing militias and antivax converge at re-open rallies Media Matters: FB said they wold remove re-open protest events. It didn’t Canada, Press Progress: Who is behind the Free North Patriots? NBC News: Natural News Pages Removed from Facebook
45 minutes | 9 months ago
Neurodiversity & Disability Rights in Alberta: An Interview with Christopher Whelan of Neurodiversity YMM
I always enjoy talking to Christopher and this was a wonderful and educational conversation. Chris and I talked about our rural upbringings and autistic relationships with natural world; what’s happening in neurodiversity communities in Alberta; school inclusion and the importance of class size; housing supports and neurodivergence; outreach to remote communities and so much more! Link to the audio below. Link to the podcast on Stitcher and iTunes at the end. https://noncompliantpodcast.com/wp-content/uploads/2020/04/01-anne-christopher.mp3 Transcription by Julie-Ann Lee: Transcript_Chris Whelan_Noncompliant Bio: Christopher Whelan is an autistic self-advocate and a Housing First social worker operating in his community of Fort McMurray, Alberta. He is the founder of Neurodiversity YMM: a grassroots sharing circle for neurodivergent and disabled people in the Regional Municipality of Wood Buffalo, as well as the director for his local chapter of Autistics United Canada. His new publication, the 95 Theses of Neurodiversity, offers 95 principles to guide communities in promoting Love, Self-Determination, and Inclusion of neurodivergent people in society. Listen to this episode on Stitcher here Listen to this episode on iTunes here
28 minutes | a year ago
“Punishments and rewards can get one thing, under certain conditions – temporary compliance” Interview with Alfie Kohn
This is a fascinating interview with Alfie Kohn, who has been researching and writing about education, parenting, authority and co-operative learning for years, driving home a simple fact: rewards and punishment are two sides of the same coin –and they’re not helping us to raise the kind of children we say we want to raise. Listen to the podcast at the link below or read transcripts (also below). Links to the podcast on iTunes and Stitcher at the end of this post. https://noncompliantpodcast.com/wp-content/uploads/2019/12/01-noncompliant-podcast-alfie-koh-1.mp3 . Transcription by Julie-Ann Lee: Alfie Kohn transcript_Noncompliant podcast_2020 Bio: Alfie Kohn is an expert on the problem of compliance-training and reward-based systems in the schools, the work world and in the family. His many books include the classics PUNISHED BY REWARDS (1993) and BEYOND DISCIPLINE: From Compliance to Community in which he explores alternatives to our merit-based approach at work and school. He has also critically examined the influence of behaviorism on our education system and the power of cooperative learning, altruism and empathy. The episode: Alfie and I had a fascinating conversation about social control and children’s rights. We also spoke at length about behaviourism/ABA. “The problem with ABA,” says Kohn, “is not just with the method, but with the goal. It shouldn’t surprise anyone that when these kids grow up they are struggling to try to figure out how to make decisions, be assertive and advocate for themselves …because the whole precondition for the temporarily effective use of rewards is the opposite of independence—it’s dependence.” So much more insight, as well as interesting discussions of research and the path forward, in this podcast. Definitely listen to the end! Links from the conversation: Alfie Kohn’s website: https://www.alfiekohn.org/ Listen to this episode on Stitcher here Listen to this episode on iTunes here
28 minutes | a year ago
“Neurodivergent individuals challenge society to question exactly what normalcy is, if it even exists to begin with” –Interview with Gaby from A4A
In this podcast, Gaby and I discussed racism in the education system, the disability hierarchy, media bias and representations of the self-advocacy movement, eye contact and cultural norms, the power of social media, the situation in Ontario and more! Listen to the podcast at the audio link below. Listen to this episode on Stitcher here & on iTunes here. https://noncompliantpodcast.com/wp-content/uploads/2020/01/noncompliant-podcast-gaby.mp3 Transcript, by Julie Ann Lee: Transcript_Gaby_Noncompliant Bio: Gaby received her BA in Biological Anthropology from the University of Toronto. In addition to contributing to the critically-acclaimed anthology “All The Weight of our Dreams: On Living Racialized Autism,” Gaby is one of the founding members of Autistics for Autistics Ontario, the first provincial autistic self-advocacy group in Ontario and an international affiliate of the Autistic Self Advocacy Network. Her work includes programs to educate health providers on autistic patient experiences and needs, employment accessibility outreach and communications with the governments of Ontario and Canada to reform autism policy. In addition to being diagnosed autistic in early adulthood, she also holds other identities such as being multiply neurodivergent and the first in her family to attend university in Canada. The Episode: In this podcast, Gaby and I talk about racism, ableism and the overlapping oppressions faced by her family as newcomers to Canada in dealing with schools, the autism services system and higher education. Despite the Government of Canada’s official rhetoric about diversity, Canadian schools and service organizations continue to marginalize bilingual families, failing at effective outreach for services, discouraging children from speaking their language of origin and operating community services without meaningful inclusion of people of Colour. “The social workers, the City workers, anyone behind the front desk did not look like me—or like any other resident in the community they were supposed to be serving.” In Ontario’s education system, autistic and intellectually disabled (ID) students are disproportionately targeted for special education and the school-to-prison pipeline, too often underestimated and discarded from the opportunities that their white, nondisabled peers have access to. Students of Colour are still targeted disproportionately for disciplinary actions and overtly or tacitly streamed out of the path to higher education. Rather than make the systemic changes we need for true inclusion and equity, too often policymakers focus on band-aid solutions. For example, Ontario’s current government is focused on funding “more therapy interventions” for anxiety in autistic students rather than addressing the sources of the anxiety, (which is the stigma and trauma inflicted by the existing segregated education system.) The government has rejected recommendations to reform school and service models. Currently, the system is mostly working against the needs of the community: especially for those most marginalized, such as newcomers, people of Colour, non-verbal autistics and economically disadvantaged families. While positive models exist in other jurisdictions (supported decision-making, the money-follows-the-person model, independent supported living, school inclusion) somehow Ontario’s system isn’t yet being reformed in any meaningful way. This episode is very connected to what’s happening here—and also part a much longer, on-going discussion within disability rights and autistic self-advocacy towards addressing bias within our own organizations. We have a lot of work ahead of us. Resources All the Weight of Our Dreams explores intersectional oppression and realities for autistics of Colour, and it is a must-read, in a world that is too often white-washed and centred on an imagined norm (neurotypicality). Ordering info below: All The Weight of Our Dreams: On Living Racialized Autism Autism and Safety, a report by ASAN on police bias against racialized and autistic Americans The Autism Wars, blog by Kerima Cevik Autistic Hoya, Webpage by Lydia X.Z. Brown The Autistic Self Advocacy Network (US) Autistic, Trans and Latinx: My Survival is our Community’s Survival Against Gentrification by Ruby Herida Eterna De Amor Black, Female and Autistic: Hiding in Plain Sight, Interview with Moreniki GIwa Onaiwu by Matthew Rozsa What Does a Black Autistic Man Look Like? A personal essay by N.I. NIcholson What it Feels like to be an Autistic Person of Colour in the eyes of the Police, by Eric Garcia
65 minutes | a year ago
“We need much better standards of research in autism intervention”: An interview with Dr. Damian Milton
In this broad-ranging interview, Dr. Milton & I discuss the theory of the “double empathy problem”; hyperfocus/flow state; autistic parenting; the medical versus social model of disability; the subjectivity of outcome measures; and the diverse ways in which autism itself is framed and defined. Listen to the interview at the audio link below or find the transcript below that! Links to iTunes and Stitcher at the end of this post. https://noncompliantpodcast.com/wp-content/uploads/2020/01/01-noncompliant-podcast-damian-mi-1.mp3 Transcribed by Julie Ann Lee: Transcript_Milton_Noncompliant Bio Dr. Damian Milton is a sociologist and lecturer at the University of Kent, on Intellectual and Developmental Disabilities through the Tizard Centre. He is also a consultant for the National Autistic Society in the UK, a Director at the National Autism Task Force, Chair of the Participatory Autism Research Collective (PARC Network) and involved in many other research and practice related projects. His most recent book is A Mismatch of Salience: Explorations in Autism Theory and Practice. His scholarship is central to a paradigm shift to understandings of autism in the field. The Interview Dr. Milton’s writing about the double empathy problem, which neatly problematizes the Theory of Mind hypothesis about autism and frames empathy as it is actually defined – a reciprocal state, and the misunderstandings between autistic and non-autistic people likewise as reciprocal—is seminal, and has since borne itself out in the research of current scholars such as Noah Sasson, Brett Heasman, Elizabeth Fletcher and Catherine Crompton. In short: relationships are a two-way street. It isn’t that “autistic people can’t imagine other peoples’ perspectives” (as theory of mind suggests) but rather, that autistic people and neurotypicals lack a reciprocity for understanding one another’s communication, movement and experience of the sensory world. And that what we all want –neurotypical or autistic—is really at its core the same: relationships and connections with others. Generally, we are all social beings, needing love and warmth, wanting to give and care for others, but this sociability (and even the desire and expression for connection) gets mistranslated between neurotypes. We understand our in-group; we struggle beyond it. But, you may be asking: “well, duh. Why did researchers before Milton et al., not understand that empathy is reciprocal and that autistic people are…well, people?” We can find some of the answers in the older, medical model of disability—an approach under which any problem a disabled person faced was conceived as a reflection of their own deficits, and where social factors (barriers, exclusion) were not considered (as they are under the newer, social model of disability). Under the medical model, the individual is pathologized by professionals ergo objectified; even actually broken down into parts within some behaviourist-influenced disciplines such as ABA. And while the medical model of disability has widely been discarded in much other disability praxis/public policy, it is still very present, at least outside of the research world, in the application of Applied Behaviour Analysis (ABA) and its impact on the current autism therapy world. Just look at this section from an article (in another galaxy far away from Milton’s work)–a 2017 ABA text: “Until a child is mainly controlled by a desire to fit in with peers and please the people they love in the verbal/social world, ABA treatment should be the priority.” That article, which debates whether parents should allow their autistic child to attend school instead of an ABA centre (!!!!), views the goal of autism therapy as “to move a child from reacting to the world though their senses (feeling, tasting, touching etc. – sensory motor world) to reacting in the world because they are trying to please others and live up to their parents and society’s expectations.” Sorry … but isn’t it normal to react to the world through one’s senses? The ABA perspective, in penalizing sensory responses, really deeply pathologizes being human. It is weird. Milton and I talk about this, as well as how medical-model based approaches determine goals, objectives and even need. When these are defined by ABA practitioners, they look very different than when defined by the very people that autism services are designed to serve—autistic children and adults. Why, for so long, has autism services been defining “need” based on its own quirky rubrics, rather than communicating with its subjects to find out what their needs were? Perhaps because they were never allowed to be subjects—only objects–in that model. “Without taking autistic sensibilities into account,” says Dr. Milton, “you’re quite possibly going to harm people or do damage. And that’s a problem of practitioners working with autistic people everywhere, because trying not to harm people should be the number one priority ethically.” Milton argues that we need more participation of autistic people in understanding the best support strategies: “what they’re for and how people are treated, and much better standards of research in autism intervention.” As well, he suggests that we need a rethinking of the goals, for practitioners to be reflective and approach their practice with humility. To grant subjectivity to autistic people in research and practice is a paradigm shift from segregation towards inclusion. Indeed, we can’t get to inclusion as a society without it. This is why autistic self-advocates are pushing back so much on ABA, because its counter–the social model of disability–is essential towards acknowledging our humanity. And it’s why discussions about our rights must include an unpacking of the philosophy of difference. We need to do some big-time deconstruction in order to build a new ethos of inclusion! Milton and the new generation of autistic (and affirming) researchers are bringing great promise to fulfilling the highest goals and objectives for autism research—human rights, quality of life and dignity for all autistic people. Listen to this episode on Stitcher here Listen to this episode on iTunes here
41 minutes | a year ago
“Creating a home environment that works for everybody”: Interview with Shannon Rosa
I had a fascinating conversation with Shannon Rosa about parenting, autism pseudoscience and autistic acceptance. Wow! Have a listen to the podcast below. Full Transcript, iTunes and Stitcher links at the end of this post. https://noncompliantpodcast.com/wp-content/uploads/2019/12/01-noncompliant-podcast-shannon-r.mp3 Bio: Shannon Des Roches Rosa’s writing and interviews are featured at Huffington Post Parents, The New York Times, The Wall Street Journal, MacWorld, Parents Magazine and more. Shannon is a co-founder and editor of The Thinking Person’s Guide to Autism. She has edited several anthologies and contributed stories to numerous books and the newly edited version of the classic she co-edited, The Thinking Person’s Guide to Autism is soon to be published. She lives with her family near San Francisco. The episode: Shannon and I talked about the impact of class and consumerism on parenting, AAC, shifting autism research priorities, the ideologies behind antivax and cure culture, the “epidemic” myth, inclusion and universal design–and so much more. Our conversation, which wandered between the personal and the political, circled back to the core message of the Thinking Person’s Guide to Autism book and blog. As Shannon put it: “There’s a lot of people out there who are going to try and tell you what your kid needs, but really, autistic people are the ones who actually do know.” Listen to this episode on Stitcher here Listen to this episode on iTunes here EPISODE TRANSCRIPTION: Shannon_Rosa_transcription
51 minutes | a year ago
Trauma-informed Mindfulness, Teaching & Care: Interview with Dr Sam Himelstein
For this episide, I interviewed Sam Himelstein, the president of the Center for Adolescent Studies about mindfulness, the pitfalls of pop-culture “mindfulness” and the importance of trauma-informed care in his work. Listen to the podcast on audio link below, or on Stitcher here or on iTunes here. Transcript below the audio file. https://noncompliantpodcast.com/wp-content/uploads/2019/11/01-noncompliant-podcast-sam-himel.mp3 Transcript, by Julie Ann Lee: Himelstein_transcript-Noncompliant Bio Sam Himelstein, Ph.D., is a Licensed Psychologist specializing in working with juvenile justice-involved youth, addiction, and trauma. He travels the country speaking at conferences and conducting professional trainings and is the president of the Center for Adolescent Studies. His mission is to help young people become aware of the power of self-awareness and transformation, and train professionals with similar interests. The episode It was inspiring to hear Sam talk about working with at-risk and incarcerated youth, about “rolling with resistance” rather than top-down authority; building trust; trauma-informed care; mindful walking and the importance of bilateral stimulation (what we call stimming); individual strategies for fostering interpersonal safety; and also about the “mindfulness” fad and how to change the problematic dynamics around it. Sam’s compassion and understanding about how kids feel comes in part from having been through the system himself. He knows that for anyone working with kids, especially at-risk kids, the first priority is building an authentic relationship with them to truly help improve their life outcomes and get them out of the school-to-prison pipeline. He is breaking new ground in his approach, especially around empowerment and rethinking some long-held beliefs about authority. “Most of young people’s lives are getting told what to do and what not to do as adults,” Sam points out. We discussed ways that kids can be put into the driver’s seat, to feel empowered, safe and respected. We also talked about the problems with behaviourist approaches that focus on measuring outcomes—which is the core of Applied Behaviour Analytics and is also a trend in many mainstream classrooms (thanks in no small part to Common Core). Sam says: “The present day paradigm in therapy, the post-positivist view in the field of education really focuses on outcomes, a small slice of outcomes, which is behavioural outcomes. …You see a lot of wanting to reduce behavioural symptoms but not as much wanting to increase other subjective outcomes that lead to greater life success.” This type of measurement also links in with pop-culture mindfulness, especially when it is viewed as a magic-button for classroom control. Mindfulness, Sam reminds us, isn’t a disciplinary tool. It isn’t a quick-fix and shouldn’t be co-opted as a tool of social control. When used in that way, it can actually harm; as in the case when mindfulness is not trauma-informed. Our podcast ended with talking about what it means to have trauma-informed practice, a topic of Sam’s most recent book, which just came out this month! A lingering question, which I don’t think anyone has yet answered, is what an autistic-informed-and-led mindfulness could look like. Another very crucial question: what is the impact of existing forms of mindfulness training on autistic youth? How does mindfulness manifest differently, depending on neurotype? In seeking some answers, we can look towards the work of Damian Milton about “flow state,” which we will be discussing in the next episode. Links: The Centre for Adolescent Studies
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