I wrote this about the pandemic, cancer and what’s happened to time. Audio below, transcript below that.
Transcript: Transcript_Time to breathe
I wrote this about the pandemic, cancer and what’s happened to time. Audio below, transcript below that.
Transcript: Transcript_Time to breathe
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 CripChat UK on Podbean here. Great guests and discussions every week!
I wrote this after my recent surgery. Audio here, transcript below.
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.
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.
Transcript, by Julie Ann Lee: Feldman_Transcript_Noncompliant_The_Podcast
Dr. 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.
American Professional Society on the Abuse of Children (registration required for some resources but the content is free.
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.
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.
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.
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.
I wrote this as I’m getting ready to start chemo. Audio file with transcript below. Continue reading “Heaven and earth”
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.
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!
Audio file–click Play to listen
When I was a little girl and the thunder woke me up, I’d leap and race down the hall to Mom and Dad’s room. I was still little enough, for a while, to squeeze in between them and listen to the hum of their quiet night talking, even as my own voice went piping out like a nesting plover because I was excited to be awake at night and have their full attention (family of 7).
My parents both slept with their knees up and I would stare over the quilted mountains and talk until my mom would mumble, in 18 or 19 different ways, it’s time to get some rest now. At some point, my dad would quietly take my hand. He did it to settle me, but in my young mind it was also a pact: if I could be quiet, he would keep holding on.
Those nights were different than the days, when there was often real thunder and a terrible lightening that sometimes started our own house on fire. My dad was an alcoholic for many years until he went into recovery when I was 17. By then in many ways I had hardened my heart, with my closest family being my dear sweet cat, sauntering in through the window as I came home early in the morning. Hello, Miss Muffet and she would curl at my feet as I thought back into the night world I now inhabited, within a tribe my family never knew—an extended family in its own right.
After my dad got sober it was my duty to forgive and forget and I did so, with a high mind and a heart that didn’t easily take hold–because some part of me had been changed and I couldn’t help that. I loved my dad with all my… mind, if that makes sense. It was a kind of love and it was the best I could manage at the time.
And years later, as Dad was dying from Stage 5 Parkinson’s, I flew down to my folks’ house. He reached out–a slight flick of the wrist–and I knew what to do. I held his hand.
I’ve been thinking about my dad this week because one great thing about him was he never varnished silver linings. I would be able to tell him I have breast cancer and he would instinctively say how awful that was because he really felt the world—it’s one reason he was so complicated. I know that there is lots of “good” news in my bad news—for example, I’ve got a good plan and good care (a Team I’m told), etc. To any of us who have lost friends to cancer, this is indeed, obviously, a silver lining. But also, I hate all of this.
Like most women, my relationship to my breasts is complicated. When I was young and trying to navigate the world, they were something I often tried to hide. So much of the time, whether on the subway or at work or at a pub with my friends, it felt like they got in the way–each time I was objectified, harassed, or even just seen as other by men.
When I got pregnant, this all changed quite spectacularly and my breasts suddenly became almost apparition-like, twin suns beaming towards an abundant future! Breastfeeding was a weird, animal experience that made the world seem very simple and small and slow – which was the beauty of motherhood in those early years. Having a baby makes you slow down and it changes your perceptions in a way that brings wisdom, if you roll with it.
Up at night now, unable to sleep, I find myself thinking back to the nights when we were still co-sleeping and my son would be chirping away to me as I fought the nods, sensing this moment as a time to connect but inevitably at some point murmuring my own mom’s words “It’s time for us to get some sleep.” I wonder, too, if I’m now being as patient as I was then—since time has had its way of speeding up and he approaches tweenhood.
Since being diagnosed, I have a new urgency to live life with a laser-like focus, cutting every shred of bullshit and getting the important connections and the best moments; basically, cherishing the fuck out of it and everyone in case, you know… the bad thing comes back.
This kind of good nature exhausts itself eventually, I know. Just like someday our evening neighbourhood cheers will peter out as the virus recedes in our lives and we get back to normal: jockeying for space on the streetcar and passing our neighbours hurriedly with a nod at 8:45 am each day, forgetting that for months our city opened up our windows and our lives to one another in an intimacy that –let’s face it—is unprecedented in Toronto. This is okay, too. We’re all undergoing a trauma and some of the moments that sustain us now we will also desire desperately never to repeat again.
On Friday, I’ll go in for my surgery. In my pre-op call they warned me “You’re going to see us dressed in masks and visors, in Covid PPE.” These days, when we step apart and avoid that human touch, it is a gesture of kindness. But even as we don the masks and take those distancing strides, it feels counter-intuitive. Like the cancer inside me, and the virus that lurks among us, I hate the masks and the distancing in my heart–even as I understand the why. We humans are designed to share a biome, to touch beyond that small bubble that ethical social distancing requires right now. That desire (in normal times) is a biological imperative and a human need.
But these are not normal times. We’re all running down the hall in the darkness now, wondering when the thunder will stop.
After my surgery, my family will be waiting in a Beck taxi outside, because they can’t safely come into the hospital. They will be waiting in a Beck taxi in a world that will feel much too bright and real for me until I’ve gotten back to our home, our sheltering place. Then I’ll settle down on the couch with my guys and offer up a kindness I know best: one hand, reaching out to another.
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.
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
New York Times: Donald Trump and Covid Pseudoscience (I co-wrote this OpEd!)
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.
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.
I was interviewed on CKUT talking about health access and neurodiversity, and some other topics including Autism $peaks–in relation to the current COVID crisis.
Here’s the audio of the interview:
Hope you like it!
I read Albert Camus’ The Plague for the first time in university. My prof told the class that the book was a metaphor for the rise of fascism in Europe, but her interpretation didn’t ring true to me. The main point of my term paper: “actually, it’s just a story about a plague” earned me a big old C grade. Turns out I was right, though.
Camus was a writer of extraordinary imagination, and it is a sublimely comforting experience to read this book again for what it is: a story about a plague–and how we respond culturally to plagues. Somehow in his brilliance, Camus managed to time-travel through this work, capturing the last few weeks of our lives in our cities in 2020 as he describes the beginning of the plague in the City of Oran in the 1940s.
“Everybody knows that pestilences have a way of recurring in the world; yet somehow we find it hard to believe in ones that crash down on our heads from a blue sky. …A pestilence isn’t a thing made to man’s measure; therefore we tell ourselves that pestilence is a mere bogy of the mind, a bad dream that will pass away. But it doesn’t always pass away and, from one bad dream to another, it is men who pass away. …
“Our townsfolk were not more to blame than the others; they forgot to be modest, that was all, and thought that everything was still possible for them; which presumed the pestilences were impossible. They went on doing business, arranged for journeys and formed views. How should they have given a thought to anything like plague, which rules out any future, cancels journeys, silences the exchange of views. They fancied themselves free, and no one will ever be free so long as there are pestilences.” (1)
Camus is describing a timeless idea: that the kind of freedom that we enjoy in urban spaces exists because we believe in it, because we have dreamed it. The moment that we stop believing in it (as we are doing now, out of necessity), it ceases. And then when it is resurrected it’s joined by a new companion, the soft shadow of our grief.
Remember after 9/11, the saying “If we have [x restriction], we’re just letting the terrorists win”? We were all grappling with how to keep the dream alive so our cities didn’t die. The new tower was a talisman; it kept our dream aloft and our very life as urbanites viable. But it was a changed life. There was a clearly delineated before and after.
In the years after 9/11 I felt a new sense of peril, imagining how terrorism threats and fears would change the things we take for granted in the city. As days and years rolled by, I watched and waited for that freedom to disappear, feeling a punch in my gut every time a new metal detector was installed, a gate erected, a guard posted. At the same time I also felt a sense of gratitude for the parts of the before that did remain. In Toronto, I was still able to jog down the subway steps and hop on Line 1, to take a ride every day and nothing happened. I’d look around and revel in the aliveness of the dream we had made real, even as I worried that it could be fleeting.
I realize more now that we’ve always had limited control over keeping our lives free in the city, no matter how tall the tower or how big the dream. Our freedom is currently tethered by that thing that just came crashing down, right out of the blue sky (although for anyone looking up, it had been in clear plain sight). And despite the marketing jive of our modern snake oil “Covid cure” hawkers, the current threat to our freedom (the pandemic) is at its core natural—and what saves us is the unnatural, our response and vigilance to control and cure people of it. As Camus writes “What’s natural is the microbe. All the rest – health, integrity, purity,– is a product of the human will.”
The failure of so many people to be vigilant in this time is heartbreaking, as it mostly always has been during times of plague. But how many of us would have predicted that it wasn’t small acts of enemies of the state, but rather the ignorance of the crowd that has brought us to this place without freedom? Even as the pandemic was fully bearing down on our cities, people continued to walk freely on the air of a dream; as Camus put it, “think[ing] that everything was still possible,” so fearful of waking from the dream that they imperiled our freedoms and endangered so many lives.
The state responded rationally, with restrictions to save us all–from the crowd. And here we are, alone in our apartments trying to make peace with what just happened and fearing for the future. Urban life is now restricted in some places to a kitchen and a bedroom, and a view out the window at the vicissitudes of weather. As Camus wrote about Oran: “Thus each of us had to be content to live only for the day, alone under the vast indifference of the sky.”
We now wait through the horrors of this moment for the end–and at the end, for our cities to come back to life. I don’t want to give spoilers for Camus’ story, about how the city of Oran responded during and after the epidemic, but suffice to say we can learn a lot from the story itself, and from the history of pandemics in our world, about the kind of shift in our consciousness we need to be making. We need, frankly, to make a move away from regressive notions of the organic and intuitive and more towards the rational and scientific in order to steel ourselves against the next threat, to protect our cities and the wonder of urban life through practical measures and not just dreams. We will need all our scientists, our artists and advocates to make that a reality. For now, we try to stay safe, living for the day.
1. Camus, Albert. The Plague. 1991 Vintage edition. 37
2. A reference to the chapbook by Lawrence Ferlinghetti. 1955. Pocket Poets Series Number 1. City Lights Press.
Note: For another analysis of The Plague in contemporary context, please see “Albert Camus’ The Plague and our own Great Reset” by Stephen Metcalf, March 23, 2020, Los Angeles Times. It is really, really interesting!!
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.
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/
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!
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.
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
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.
Transcribed by Julie Ann Lee: Transcript_Milton_Noncompliant
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.
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.
A quick break from podcasts to announce that on December 16th, the Globe and Mail reported that Ontario regulators declined to take action on my complaint about an Ontario doctor administering chelation drugs to children as an autism treatment (a practice that is banned in both the US and the UK).
I’ve written an FAQ about the case, including global context and next steps. You can read it here: Stop Chelation-Autism Therapy
You can also get case updates on Twitter: @againstcures
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.
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.”
EPISODE TRANSCRIPTION: Shannon_Rosa_transcription
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.
Transcript, by Julie Ann Lee: Himelstein_transcript-Noncompliant
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.
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.
It was an honour to speak with Dr. Philippe Chouinard. Dr. Chouinard is a leader in the movement against autism pseudoscience and a protector of children’s rights.
Transcript, by Julie Ann Lee: Transcript_Chouinard_Noncompliant
Dr. Philippe Chouinard is a family physician based out of Moncton New Brunswick. He has been involved in a developmental paediatrics practice with a specialization in ADHD & autistic populations since 2010. His work has led him to take a strong stance against pseudoscience marketing to physicians and health misinformation on social media.
Dr. Chouinard has worked to stop big online retailers from listing products such as MMS (autism “bleach cure”) and challenged the normalization of marketing pseudoscience within the professional organizations to which he belongs. Big Herba markets to physicians as much as… the other guys, and without the same product regulation on claims or product quality.
When pseudoscience insinuates itself in professional medical conferences, as Dr. Chouinard discusses, it quickly blurs the line between science-based medicine and snake oil– and that’s a big part of the public health problems we face today around such issues as lowering vaccination rates, autism pseudoscience and more.
Supplements & complementary medicine are a multi-billion dollar industry that thrives in part off of cultural anxieties. Perpetuating the anxieties (or even manufacturing them) is part of the marketing for many pseudoscience products. Dr. Chouinard and I discuss the first-line role that physicians can play in addressing these anxieties; for example, among parents of newly-diagnosed children. Physicians have a key role as intervenors to prevent the harms associated with pseudoscience, to provide information and guidance to patients, and parents of patients, in informed decision-making.
We also talk about Canada’s need for regulatory reform on complementary/alternative medicine (CAM). As Dr. Chouinard put it: “Regulatory bodies should be adhering to evidence-based standards, not hiding behind CAM policies. The public should be warned about physician members who are utilizing treatments that are not evidence-based and steps should be taken so that they are not endangering patient health.”
This episode was cut a bit short, so it ends with some of my own thoughts about proxy consent and CAM.
Thank you again, Dr. Chouinard for this insightful interview.
For this episode, I interviewed 23-year-old comedian Michael McCreary about media portrayals, comedy & so much more!
Listen to the audio link below
(for iTunes and Stitcher links, see the bottom of this post).
Transcript below audio file.
Transcription, by Julie Ann Lee: Transcript_McCreary_Noncompliant
Michael began stand-up comedy at the age of 13. He has performed stand-up shows, keynote addresses and panel presentations across Canada and the US. He just published the book entitled “Funny, You Don’t Look Autistic” and recently delivered a TEDx Talk on the topic of autism acceptance. He has also consulted on the television show “Ransom” to ensure authenticity of an autistic character and has appeared on CBC television and radio.
It was so much fun to talk to Michael!! His thoughts on comedy, writing, neurodiversity and autistic representation are very interesting. I’m going to dispense with all my analysis here and just say: have a listen.
Links mentioned in the podcast
Michael’s book: Funny, You Don’t Look Autistic
Canadian Down Syndrome Society: “Anything But Sorry” video
Pablo show: Pablo-Official YouTube channel
Michael’s Facebook page
This week I interviewed Ryan Armstrong of the pseudoscience watchdog group Bad Science Watch Canada.
Listen at the link below or via the iTunes and Stitcher links at the end of this post.
Read the transcript by clicking the link under the audio file.
Transcript by Julie Ann Lee: Transcript_Ryan_Armstrong_Noncompliant
Ryan Armstrong is the Executive Director of Bad Science Watch Canada, an independent non-profit consumer protection watchdog and science advocacy organization dedicated to improving the lives of Canadians by countering bad science.
Ryan has a PhD in biomedical engineering and an undergraduate degree in medical biophysics (BMSc). His research has spanned across multiple domains including bioethics, medical imaging, image processing, human-computer interaction and surgical simulation. He became interested in science-based activism after encountering false cancer treatment claims in his community. Learning that these practitioners were regulated health professionals, he found that the regulatory system was not adequately protecting the public.
Ryan and I talked about several issues around “natural health products” (such as vitamin and herbal supplements) and off-label use of prescription drugs in Canada. These issues include:
In the US, the Health Fraud and Consumer Outreach Branch of the Food and Drug Administration (FDA) has engaged in regulatory action on matters including products tainted with active drug ingredients such as anabolic steroids; metals like lead and mercury; and common allergens. In a recent case, the use of Hyland’s Teething Tablets was found to be associated with belladonna toxicity in infants. Between 2007 and 2016, the FDA issued warnings about unapproved pharmaceutical ingredients in 776 dietary supplements; however, one report notes that less than half of these led to voluntary recalls.
In addition to supplements, the FDA has also cracked down on off-label use of prescription drugs, such as the off-label use and sale of chelating agents to “cure” autism. Like the FDA, the National Health Services in the UK has created a list of “Do Not Do Recommendations,” including “Do not use chelation for the management of core symptoms of autism in adults”.
There is no similar Do Not Do list in Canada. Other than issuing warnings against the sale of MMS (here, at least one case has been prosecuted by the Crown), we don’t hear very much about Health Canada engaging in regulatory actions against supplement makers for integrity issues. Neither do we hear about Health Canada taking action on off-label use, a matter that is generally “handled” by self-regulating colleges.
I think Health Canada needs to take a page from US and UK regulators, for two reasons.
1. Contamination of natural health products is a serious health and safety issue.
When University of Guelph researchers tested 44 bottles of popular supplements sold by 12 companies, they found that many were mixed–or replaced entirely–by cheap fillers like soybean, wheat and rice, which were not listed on the label. Still others contained walnut, a common allergen, also not listed on the label. Bottles labeled “echinacea” were found to contain a ground up bitter weed, Parthenium hysterophorus, an invasive plant found in India and Australia that has been linked to rashes and stomach illness. Two bottles labeled as St. John’s wort were entirely comprised of fillers, with no St John’s Wort in the capsules at all. All in all, one-third showed “outright substitution, meaning there was no trace of the plant advertised on the bottle.”
As David Schardt, a senior nutritionist at the Center for Science in the Public Interest, an advocacy group. “Given these results, it’s hard to recommend any herbal supplements to consumers.” It’s not just lack of efficacy that’s the concern, but risk of illness or allergic reaction, or other reaction (as in the case of supplements tainted by steroids or Viagra). As Chris MacDonald of the Ted Rogers School of Management writes: “Unlike homeopathic remedies, which (unless adulterated) generally contain no active ingredients at all, herbal remedies can have actual biological effects.”
When products sold at GNC (US) were tested by an expert in DNA barcoding technology, just 21 percent of the test results had DNA from the plants listed on the labels. “In many cases, unlisted contaminants were the only plant material found in the product samples.” Based on DNA testing, the New York State Attorney General’s office accused four major retailers of “selling fraudulent and potentially dangerous herbal supplements and demanded that they remove the products from their shelves.” Other actions have followed this one.
And last year, a report in the Journal of the American Medical Association concluded that: “Active pharmaceuticals continue to be identified in dietary supplements… even after FDA warnings. The drug ingredients in these dietary supplements have the potential to cause serious adverse health effects.”
2. Self-regulating bodies in Canada do not appear to be adequately regulating off-label use of pharmaceuticals such as chelating drugs. A Do Not Do/Use list would help provide guidance as we seek a regulatory framework that enforces the use of these products.
The system of professional self-regulation–where members of a given profession comprise the complaint body when members of the public have a grievance about a medical practitioner–is flawed. In some cases, self-regulating colleges are not taking enforcement action when legitimate complaints arise about the practices of their members. A self-regulating review board may be made up of two professionals (peers who often know the respondent professionally) and one member of the public. Rarely if ever are ethicists or other adjudicators involved. Judgements often come out in favour of the professional without due diligence or drag out for years, even decades.
As Ryan notes: “The current system has been constructed largely on the assumption that the majority of a given profession is well-meaning and ethical and that their organization into a regulatory body would help weed out the outliers and bad actors. … [W]hat has not been taken into account is the existence of cultural delusions that can possess large communities within a profession or even the entirety of a profession.
“We need an independent entity that is science-based and ideally can make judgements on diagnostic and therapeutic procedures.”
In addition to regulatory issues, Ryan and I discussed the nuances of informed consent, as well as the predatory nature of false marketing claims and the future of regulation in Canada. I learned so much from this interview about the issues in Canada, as well as major projects in the works and up ahead for Bad Science Watch, an amazing organization. Ryan, thank you for this insightful interview!!
Listen to the full podcast at the audio link below (Stitcher and iTunes links at the end of this post.):
Oswin Latimer is an indigenous, non-binary, Autistic adult, parent to 3 neurodivergent children and a disability advocate. Oswin is a founder of Foundations For Divergent Minds, which we will focus on in this episode. Prior to founding Foundations for Divergent Minds, Oswin was Director of Community Engagement with the Autistic Self Advocacy Network (ASAN) and in addition to activist and education projects there, they represented the autistic community to policymakers in the US Departments of Labor, Education, Personnel Management and others.
After leaving ASAN, Oswin spent several years as a disability consultant, advising parents on ways to set up their homes and create individualized education plans that better met their child’s needs. They also compiled and edited Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults, among other projects.
About This Episode
The Foundations for Divergent Minds model, which Oswin co-founded, is a framework designed by autistic and neurodivergent people for use by families and professionals working with autistic and neurodivergent children. Based on Neurodiversity, FDM works on the principle that when a child struggles it is because their surroundings need to be adjusted–and assessment should find what is missing from their environment. It focuses on areas including: Sensory Integration; Executive Function; Communication; Social Interaction; and Emotional Regulation.
FDM is a portable, affordable approach that is based on equity and access –and in the short time since its launch, it has disrupted the autism services market in a brilliant way, as we discuss in the podcast!
The basic premise that “kids can progress and be happy without having to change who they are fundamentally,” should be intuitive. But this idea runs counter to most prevailing public-funded models of autism services. FDM is a service informed by the population it serves, scalable to a spectrum of needs and environments, on an accessible and portable platform, at a much lower cost than standard services, with satisfied users – and it’s effective. It also contains a crucial element of DIY, so that families and educators can integrate the strategies into their environments without a lot of overhead, handlers, case workers, supervisors, etc.
Oswin and I talk about AAC (including the importance of introducing it early) and FDM’s methods for introducing AAC, both to the user and to their parents. We also talk about communication in general, compliance versus connection and other concepts that represent the really seismic shift on the horizon for autism services (dust off your resumes, BCBAs, you’re going to need a new gig soon…)
Oswin came to the idea of FDM organically, based on her experiences as a parent. “As I look at everything that I’ve ever been given for my own kids, I always see this ‘how are we going to make them look a certain way,’ [approach] but never does it come out that people are looking for happiness.” And that is a key element of FDM: a fulfilled life for autistic/neurodivergent people. It offers easy-to-understand, concrete ways to set up a home or school for communication access and sensory-friendly spaces that also destigmatize access needs. It replaces the old idea of hand over hand learning to make it about hand under hand learning, assuming competence both in the children and in the families as they connect towards a common goal.
Oswin says: “[parents] feel good about what they’ve done and I’m blown away by how many teachers, SLPs and OTs are coming away saying ‘you have fundamentally changed the way I do therapy.’ And that is so amazing for me, because that’s the whole point. To recognize that [autistic/ND people] have our own needs and our own development and none of this means that we can’t learn, or that we need to be changed.”
Thanks again, Oswin, for an inspiring interview!!
Listen to the podcast by pressing Play on the audio link below.
Full Transcript, iTunes and Stitcher links at the end of this post.
Cal Montgomery is a trans, queer, autistic, physically disabled activist and writer in the United States and a survivor of long-term institutionalization. He is a Director of the Board at the Autistic Self Advocacy Network, engages in direct actions and civil disobedience around disability rights issues and is a former member of ADAPT, the US direct-action organization.
Cal is at the forefront of action against the electric shock aversives used at the Judge Rotenberg Center in Massachusetts, which we talk about in the podcast. Cal is probably best known in the neurodiversity community for his essay “Critic of the Dawn”. In it, he writes: “Disability is injustice, not tragedy; unequal treatment, not inherent inequality.” I highly recommend you check out that essay as well as following Cal’s blog, Watch Well: A Blog about Disability.
Cal’s activism and analysis is informed in part by his own experiences as a survivor of residential institutions and, after institutionalization, working for some time in group homes. Cal describes how the institutional model is replicated in group home settings, even when they have a veneer of independent living. As he observes: “It’s really not that hard to take a program that looks like it supports self-determination and make it all about control. And we see it done every day.” The goal of disability rights is to dismantle the relics of the residential institution approach and to support programs that promote self-determination–independent supported living–instead.
“We need to make it so that people are running their own lives and staff are not running their lives.”
In the podcast, we talk about the Judge Rotenberg Centre (JRC), a residential institution that has been using shock torture on autistic and IDD residents, with a device that has now been banned by the FDA. The JRC has continued to use it against the FDA ban and the international professional association of ABA providers has endorsed its use. Both ADAPT and the Autistic Self Advocacy Network have a campaign to get the FDA to enforce the ban and #stoptheshock.
We also talk about the present day situation of institutions, the fight for fair housing and integration in society, how the strides made by other disabled communities haven’t been replicated for the developmentally disabled community–such as being able to make choices about caregivers or where and how care and services are delivered. We discuss segregated education and what access and support really mean in the context of developmental disability. As Cal said, access is not just about “getting in the room”, people also need supports once they get the access to the room.
Currently there are many people who want to live in the community that, due to bureaucracy, are steered towards living in institutions. The Medicaid system in the US is stacked towards placing people who need services into institutions rather than living in the community. If you need supports, too often the “best” way to get supports is to live in an institution. In most US states, people have the legal right to be in a nursing home or other institution “but not an equivalent right to service in the community” with supports.
“So either you hang on with loved ones providing the care you need –and as families age, this gets harder and harder –or you have to go into an institution, Or you die. Those are really your choices..”
Cal and I also discussed wandering, literal and metaphoric, and its role in learning and growing. The ability to wander is essential to development and often denied to autistic youth, especially in the special education setting. How different could things be if the desire to explore were honoured in all children?
Despite some of the difficult subject matter of this podcast, I walked away with a feeling of hope, the kind of hope that is given by shedding a light on truth–one of the many gifts that Cal brings to the movement. Thank you, Cal!
EPISODE TRANSCRIPT: Cal_Montgomery_Noncompliant_transcript
To listen to the podcast on this site, click on the link below (Links to Stitcher and iTunes at the end of this post).
Bio: Bruce Uditsky, M.Ed., is the CEO Emeritus of Inclusion Alberta and its former CEO for over 25 years. He is internationally recognized for his leadership and advocacy in social justice and inclusion for individuals with intellectual disabilities and their families. Bruce is the founder of Inclusive Post-Secondary Education and co-founder of the Rotary Employment Partnerships, both of which have been formally recognized as world-leading innovations. He has consulted and taught in many countries and is the author and co-author of books, chapters and articles on inclusion. He is the parent of two adult sons, one of whom has Fetal Alcohol Spectrum Disorder and intellectual disabilities.
Bruce is a recipient of the Alberta Centennial Medal, Queen Elizabeth II Diamond Jubilee Medal, and the Premier’s Council on the Status of Persons with Disabilities Gary McPherson Leadership Award.
“There are far too few schools who operate on the basis of what the research and knowledge have said for decades, actually,” says Bruce–and this is perhaps one of the most frustrating parts about doing work on human rights and inclusion in schools in Canada.
In this interview, Bruce talked about the use of restraint and isolation on special education students and the need for tracking, regulation, enforcement and appropriate training in positive strategies, trauma-enforced care, de-escalation and alternatives to teacher violence. He also talked about the core biases that have prevented real change, and some amazing initiatives that counter those biases. We also talked about his work through Rotary Employment Partnerships to provide fair opportunities at competitive wages for disabled Albertans. An incredibly informative, and thought-provoking interview!
While some may think that teacher violence is the last resort, it is quite often the first resort in special education classrooms that lack transparency. Where there is no transparency, abuse can go unchecked, especially with students who may not be able to articulate what happens to them, or may not be believed if they do.
In Ontario, it is common practice for a special education teacher to keep parents out of the classroom space at all times, even for pickup and dropoff. Teachers’ unions across Canada fight against cameras-in-classrooms as well. Their representatives argue that cameras violate the privacy of students and that parent presence is a “distraction from learning”. But these arguments are a smokescreen– because decades of research show that parent and community involvement is healthy for all learners, whether in mainstream or segregated classrooms and that cameras-in-classrooms are a deterrent for violence, as well as a crucial means of documenting it.
In Ontario, each school board has its own method for “tracking” isolations, restraint and school exclusions. This unfortunately means that when human rights and inclusion advocates want to document problems and advocate for change, we are stymied by entirely different, highly relative and frankly skewed data sets. For example, in many districts in Ontario, a Board’s definition of an “exclusion” does not include several types of school exclusion that any reasonable person would define as such.
In researching A4A’s Inclusion Recommendations to the Ontario Ministry of Education, I was frustrated by this and repeatedly heard from inclusion advocates: “we need to fight for universal codes and tracking to make our case.” We see the same inconsistencies and dearth of real data when we look at uses of restraint and seclusion in group residential facilities as well. Within a bureaucracy that will not move without hard data, we’re left to rely on anecdotal information, the kinds of heartbreaking stories that advocates like Bruce hear every day. We know that it is happening every day and we know that the real numbers are obscured by the very systems that should be designed to track it.
What Inclusion Alberta did in response to this problem was remarkable: as Bruce describes in the interview, they created their own study, surveying interviewing hundreds or parents across the province to make the case for human rights accountability in schools. The end result of their work contributed to a complete ban on seclusion in Alberta schools, signed into effect by the Premier of Alberta. The ban takes full effect on September 1, 2019. Their story just goes to show that sometimes if you want something done right, you have to do it yourself.
Thank you again, Bruce, and everyone, for all your hard work on this. Inclusion Alberta and its partners have made school a safer place for Alberta kids. Although there is more work to be done, the seclusion ban in Alberta schools has set a valuable precedent for all provinces and territories.
Alberta’s ban on isolation in public schools
CBC News: Autistic Boy Locked Naked in Alberta School’s Isolation Room
Toronto Life: Autistic Student Locked in a School Seclusion Room for Hours without Food or Water
A4A’s Report to the Education Ministry: Human Rights in Special Education
A4A’s Report to the Education Ministry: School Inclusion that Works
A4A’s Report to the United Nations Health Rapporteur: Human Rights in Ontario Group Homes
Listen to the podcast here at the audio link below (To listen on Stitcher or iTunes, see the links at the end of this post).
Raya Shields just received her Master’s Degree from York University (Toronto) in the school of Critical Disability Studies. Her master’s thesis focuses on human rights abuses at the Judge Rotenberg Centre. She is autistic, multiply neurodivergent, and queer. For the last 12 years she has been mentoring autistic children and youth. She is currently working on a series of children’s books.
Raya and I talked mainly about her experiences as an autistic mentor. She described what the time spent with her mentees looks like: what they do, how they plan and what comes out of the experience for the youth and for their families. As she is works with the kids, she is also modeling for the parents in how to relate to their kids, approaching projects and goals with a crucial assessment question: “Is this about a critical life skill, is it a safety skill, or is this just an NT social expectation?”
Through the mentorships, kids get to try new things and experience the city in a way that is on their terms, with someone who is receptive and has a deep well of common experiences to draw upon. Raya says:
“What I hope the kids get out of it is it gives them the tools to advocate for themselves and their needs, to find pride in their autistic identity and to have greater access to their communities and feel comfortable with their way of being in the world.”
We also talked about disclosing one’s identity as autistic to clients, an issue many autistic child and youth care workers (CYCs) and teachers face. The discussion turned to Raya’s early experience working in the school system as an CYC and the problems within the school. She sums it up like this: “Super cool kid, lots of potential, utterly failed by the school system.” The school did not have accessible design, was not open to even basic accommodation and when there were difficulties, the student himself was seen as the “problem”.
Raya’s excellent recommendations for how to make classrooms accessible point to the need for schools to consult with #actuallyautistic people when developing accessible design and inclusion initiatives. Her experience in dealing with the school as a CYC is a concrete reminder of what research tells us as well: what holds administrations back from inclusion isn’t dollars, it’s attitude. Inclusion programs and accessible design work when there is an attitude of good faith from administration–a willingness to learn and change. In future episodes, we will be looking at successful inclusion programs, how they got there and why they work!
We need more mentorship like Raya’s that brings autistic kids together around shared interests and helps them through life transitions as kids, tweens, teens and young adults. Raya mentors my son and it such a wonderful, relaxing experience when she rings our doorbell and they go off on an adventure on their own or with other autistic kids. I always know that he is in an emotional space where he can be authentically himself without stigma.
Many programs and classes for autistic youth are not designed to allow them to relate to one another, but rather to teach them so-called “social skills.” Those classes, through a heavily-mediated, hand-over-hand style, end up feeling awkward and inauthentic, and stymie friendship efforts because the kids are not allowed to connect on their own terms. Many “meetups” led by autism agencies even have behaviour performance charts at the front of the room, ranking the children’s “behaviour” instead of promoting true community and connection.
Autistic mentoring programs and interest groups push back against this approach and show clearly that autistic kids, no matter their age, should not have to wait until adulthood to find their community. It is here. The most helpful thing our policymakers could do is to stop prioritizing “clinical” social groups for autistic kids and instead support getting them out into the real world with #actuallyautistic mentors!
I hope you enjoy this podcast as much as I did. Lots of great ideas and inspiration as we move towards inclusion in our society.
The podcast: Listen to the podcast here at the audio file below. (Links to Stitcher and iTunes are at the end of this post).
Matthew Smith is Professor of Health History within the Centre for the Social History of Healthcare. He is Vice Dean Research for the Faculty of Humanities and Social Sciences at the University of Strathclyde. He has written many books about the history of medicine, including two about ADHD and Another Person’s Poison: A History of Food Allergy –as well as co-editing the 2016 collection: Deinstitutionalisation and After: Post-War Psychiatry in the Western World (2016).
Audio note: There are a couple of minor dropouts/patchups in the beginning of the interview, but it clears up then for the rest of the interview.
Matthew Smith is an expert on the history of the ADHD diagnosis, which emerged out of the late 1950s, when researchers broadened this area of diagnosis and Americans were living in the era of the Sputnik satellites and the attendant anxiety around the “space race.” This, along with demographic and economic changes, all had a significant impact on education policy priorities in the US. Shifts in the field of child psychiatry and in psychopharmacology also played a big role.
Classroom environments changed dramatically in the 1950s. Kids had to adapt to these changes; some could and some could not. All of these factors came together to create the perfect storm for an “ADHD epidemic,” a further diagnostic expansion and an uptick in prescription for Ritalin and like drugs.
Matthew talks about the trajectory of the ADHD diagnosis in the last half of the 20th century and shifts in child psychology as well as Ritalin marketing and sales. We also discuss the impact of society’s responses to ADHD in kids, as well as the problem of teaching to the test and the current use of ADHD drugs for performance-enhancement or as an “easy fix” replacement for meaningful inclusion. As Matt says: “The knee jerk reaction is to consider that it’s the child that’s wrong and is at fault for whatever reason — ‘something in their brain is not firing correctly’– and we turn to drugs. And I think one very simple change that I would like to see is if we saw Ritalin as the last resort, rather than the first resort.”
I also ask Matt about a program he is involved in: a pilot project in Musselburgh, Scotland where many children had been receiving the ADHD diagnosis. The school principal there chose to “change the ethos in the school” and commit to an inclusion-based model. They modified the school to be inclusive, with a series of 10 projects that the students take on, none of which cost much to do and all of which were sustainable.
As Matt notes: “It [isn’t] a whole bunch of intensive interventions. These were actually quite simple things that the school took on board to make considerable difference”. At the school, children are being taught with more hands-on learning (including producing a podcast series!) As well, the school undertook a popular new program in Scottish schools called the Daily Mile, where kids get more physical play time and breaks. The EAs also took on a radical new role (Listen to learn more about the pilot project!).
As a result of all of these changes, “the school saw a real reduction in referrals to psychiatric services as well as academic improvement.”
Hyperactivity and authoritarianism
While preparing for the interview, I thought about some of the works I had first read about the subject, by the poets Henry Rollins and Jello Biafra. Both Rollins and Biafra identified an authoritarian undercurrent to the hyperactive diagnosis and the use of Ritalin on kids as a form of social control. Biafra summarizes this in the song Hyperactive Child, in which an adult trying to drug a hyperactive child repeats the phrase “wouldn’t you rather be happy?” It’s the perfect leitmotif for the gaslighting at the core of authoritarianism. The lie that conforming and complying at all costs will make you happy –when conformity and compliance are really only making one entity happy: the authority or authoritarian institution. Pledge allegiance to our flag, now you will obey.
That song was written at the height of the cold war: we managed to survive it, but where are we at now? With new world war threats–this time propelled by climate change–the uptick in patriotism and the cultural anxieties have a new hue. We’ve got a bigger problem now. What new forms of social control does our current political environment engender? What’s happening to the kids in all this?
It is always fair–and vitally important–to place the ADHD diagnosis and others like it (as well as the attendant “interventions”) within a cultural context. What is wonderful about the Musselburgh project–and others like it–is that by knowing the history, they transcend some of the bias to get a clearer look at the little people who stand before them. Kids who want to move, kids who want to do. How can we accommodate or facilitate that? And what can we all learn in the process of doing so?
Professor Smith’s blog on Psychology Today
Professor Smith’s book, Hyperactive, The Controversial History of ADHD
New York Times series about ADHD drugs in America
Podcast: Listen to the podcast here on the audio clip below. (Links to Stitcher and iTunes at the end of this post).
Bio: Emma Dalmayne is a mom of six, a home educator and co-founder of Autistic Inclusive Meets, which organizes meetups for autistics of all ages, as well as activist actions on issues that impact the community and advocacy at the governmental level.
Emma leads a UK-based campaign against autism pseudoscience and is the one who raised the alarm about MMS, an underground movement of parents who claim to “cure” their autistic children by making them drink bleach or putting it in enemas–uncovering dozens of MMS sellers in the UK.
In fact, her work on autism pseudoscience established the groundwork for the UK Parliament to begin working towards regulation and enforcement against phony autism cures. Autism pseudoscience is a human rights issue; right now, lax proxy consent laws and a dearth of regulation and enforcement has allowed providers and parents to give children “treatments” with no evidence of benefit and clear evidence of harm. As the UK government concluded in its report:
“Health care fraud is big business and autism is one of its many targets.”
At the core of Emma’s work is a robust honesty about the impact of autism pseudoscience on the children. Too many discussions of autism pseudoscience focus on relative abstracts such as “marketing claims,” “antivax underpinnings” or “parent desperation” at the expense of the most base and crucial matter: children’s health and safety. Emma and other activists are not distracted by debates: autism pseudoscience is damaging and potentially deadly for children. That is why we must act now to get regulations passed.
Autism, Truth and Pseudoscience
Many of the leading voices against autism pseudoscience–and against pseudoscience in general–are autistic and neurodivergent people, whether it is against the corporate greenwashing of the climate crisis; the social media echo chamber of the antivax movement; or the morass of bullshit that is autism pseudoscience. It appears that calling out bullshit is our MO.
I wonder: what is it about being autistic that fosters almost a necessity to resist doublethink, to identify bugs in a system or elephants in a room, to speak bluntly regardless of social consequences and to have such a knack for systems thinking– whether it may be machine logic, engineering or -in a sociological context- just simply understanding when an institution has it all wrong and how systems could run better? I think that at the heart of it dwells a unique kind of free spiritedness, connected to a pure focus on working to remedy injustice, even if it comes at great expense to ourselves at times.
When the website Real Social Skills coined the phrase “Noncompliance is a social skill” it struck a chord in our community. Regardless of our diversity in communication platforms, level of support needs or any other factor, we tend to learn and adapt best with intrinsic rewards and don’t generally want to operate with the currency of tokens and treats. It’s why autistics perform better in job interviews when asked to show the skill set rather than make disingenuous chit chat about “your biggest strengths and weaknesses”. It’s also why compliance training doesn’t work on autistic people like it does on neurotypicals (a subject we will address in depth in my upcoming interview with Alfie Kohn!)
I recently read a compelling essay in The Atlantic by Conor Friedersdorf, who focuses on Greta Thunberg as well as Soviet and other dissident culture to see connections between autistic ways of thinking and a seeming necessity to resist. He quotes Russian American journalist Masha Gessen, who states:
“If you simply can’t do doublethink, if your brain explodes, then it is less discomfiting for you to become a dissident than to exist within a society. For most people, it’s more comfortable to do whatever you’re required to do. If it requires doublethink, it requires doublethink. But if you just can’t do doublethink, then you become a dissident.”
Emma does not engage in doublethink. She intuitively places autism pseudoscience within the broader system and is able to look at each of the broken parts to give the kind of nuanced analysis we need to take on the problem. She says:
“It starts at diagnosis. It starts with the attitude at diagnosis when they say: ‘I’m so sorry to tell you, your child has autism.’ The [parents] immediately think, ‘Oh God I’ve got to help my child,’ They go on the internet and Google treatments for autism. And one of the first results they’ll find there is heavy metal poisoning.”
Remove the cultural panic about autism and you will remove most of the market for autism pseudoscience. This is very simple systems thinking about the problem. Find ways for multiple players within the system to promote acceptance, the social model of disability and meaningful accommodations, to make a better life for autistic kids and adults. In doing this, we tamp down the panic and the market for cure products.
Emma is doing that through her meetup group, by fostering accepting, fun environments for children and parents to get together with other families and have the kind of normal experiences they deserve: connections with peers, play without stigma, acceptance, love and respect in the public sphere. This kind of project shows the best practice from a systems point of view. Don’t just talk about labeling claims, don’t just work for regulation…also build a broader change in the culture around you.
Emma has given me much to think about. Thanks, Emma, for being on the show!
Links from this conversation:
Report from the Manchester Commission on Autism: A Spectrum of Harmful Interventions for Autism
cw: eating disorders
Listen to the episode here at the audio link below (Link to Stitcher and iTunes at the end of this post).
Professor Alan Levinovitz is an associate professor of religious studies at James Madison University. He specializes in classical Chinese philosophy and the relationship between religion and science. In addition to scholarly articles, he is the author of The Gluten Lie: And Other Myths about What You Eat –and The Limits of Religious Tolerance. He has also appeared on the Netflix series A User’s Guide to Cheating Death. His next book is about how nature gets treated like God.
Pseudoscience in Autism Parent Culture
When Bax was 5, we were at a playgroup with some other autistic kids. The kids were running around when suddenly one little girl stopped, bent over and threw up into the bushes.
Sorry we left early! her mom texted me later, Sienna’s on a new dose of B12 that’s been bothering her tummy.
I didn’t exactly want to ask, but I did: Why? Sienna’s mom explained that she and her husband inject Sienna with B12 vitamins in their kitchen every morning before school (per their naturopath’s instructions) to prevent “autistic methylation”. They also give Sienna six herbal supplements to swallow each morning and have her on restrictive diet (no sugar, no wheat, no dairy) – all supposedly to “detoxify” her brain and cure her autism.
Aside from the disturbing nature of the rituals themselves–all based in pseudoscience–there was something else that upset me on a very deep level. It was the way that Sienna’s mom talked about these treatments as though they were the most ordinary thing in the world, like giving a child a Flintstones vitamin. Making a child endure daily injections and fake pills to cure an imagined disease is aberrant behaviour, yet it is normalized within the autism parent community and the broader culture –and even shared on some mainstream autism “advocacy” websites.
Too often, when parents talk about these phony cures, everyone just quietly defers to the parents or may even question themselves, thinking “well, maybe I don’t really understand autism…” Even worse, bystanders may assume that it’s okay to do things to an autistic child that they would never accept doing to a neurotypical child, just because the child is disabled.
But it’s not okay. These phony treatments come at a high cost that includes physical risks and emotional harm. I started the Campaign Against Phony Autism Cures in 2018 to try to combat some of this, building off the tradition of other activist mothers such as Melissa Eaton, Amanda Seigler, Fiona O’Leary, Emma Dalmayne and Shannon Des Roches Rosa, (some of whom I interview in upcoming episodes). We have the support of the broader #actuallyautistic community, as well as allies across a range of disciplines, such as Alan.
While we need to fight for regulation and enforcement to protect children today, we also need to educate for tomorrow–to change the very mindset that leads parents to choose autism pseudoscience. One powerful step is to challenge the myth of autism as a disease (it is not, according to the APA, the DSM and other scientific bodies) and to understand it instead as a disability to accommodate and–most importantly–to accept. It is through this acceptance, which we all want, that children and parents can connect and stay connected. Without autism acceptance, we will just continue to have the chaos and pseudoscience we see today.
Alan and I discussed how the desire for empowering rituals around food can be twisted by marketers to sell a product or a plan, such as the GAPS, DAN or MAPS diets. We also talked about the negative impact of restrictive diets on individuals; the problem with proxy consent; the idea of battle in the language around autism parenting; the inaccessibility of medical jargon; the need for #actuallyautistic voices in autism organizations– and so much more. Alan also discussed food restrictions within traditional explanatory framework/context of world religions and talked about the commodification of rituals: incredibly interesting!
As Alan said: “We need to reframe the whole narrative of how we understand autism and need to make sure there are more and different resources in place for parents. …A part of the solution to these problems will be changing the context in which parents and children are receiving autism diagnoses and changing the framing narrative that people use to understand those diagnoses. If we can do that we would really go a long way towards improving things for everyone.”
I really loved this podcast too because it has an uplifting ending, something I needed to hear that day. Thank you, Alan!
Interview with Alan Levinovitz
For this episode, I interviewed Derek Burrow, an Ottawa-based librarian, writer and tabletop RPG player who is part of a movement to normalize AAC and increase accessibility to it.
Listen to the podcast here at the audio link below (Stitcher and iTunes links are at the end of this post) :
Derek Burrow is an Ottawa-based librarian and freelance writer who is also deeply passionate about tabletop roleplaying games, with 25 years in the hobby. He uses augmentative communication, also known as AAC (specifically Proloquo4Text and Proloquo2Go) to communicate, and is exploring how augmentative communication can be normalized within society and also incorporated into tabletop gaming. Derek wrote the latest support documentation for Proloquo2Go and Proloquo4Text. He is also involved in Autistics for Autistics, the Canadian autistic self-advocacy organization and as a consultant on accessible materials and services in Ontario.
Augmentative and Alternative Communication (AAC) is any tool, system or strategy for communicating rather than verbal speech. AAC can include pictures; gestures; sign language; visual aids; speech-output devices like phones or iPads; and more. Augmentative and alternative communication (AAC) is an essential aspect of life for non-verbal and semi-verbal autistic people and communication access is a right. Unfortunately, many are still denied access to AAC, a topic we discuss in the podcast.
This interview is so informative, broad-reaching and thought-provoking. Derek and I talked about various aspects of AAC and his experiences before and after getting access to AAC, as well as AAC in tabletop roleplaying (RPGs).
We also talked about the social applications of the RPG model. As Derek said: “Everyone has strengths and weaknesses and in any group of people, someone is going to have a skill that no one else possesses. In gaming, we design characters around their strengths and the world is set forth in such a way as to let them succeed through them. That’s a far better model than real life where we are often put in places that attack our weaknesses and are expected to excel.” The best aspects of the RPG community are a model for our broader culture in creatively cultivating co-operation, valuing diversity and ensuring accessibility.
Because this was one of my first interviews, I was a bit nervous on the mic! But it was a great way to start off the podcast. I hope you enjoy it as much as I did.
Links from the conversation:
Deej, the movie