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.
I wrote this as I’m getting ready to start chemo. Audio file with transcript below.
I can’t really imagine what heaven will be like. I did think about it when they walked me into the operating room, yeah, in Canada they just walk you right in to your surgery. There’s hot white light in there…in the operating room I mean…and I closed my eyes to it as a nurse called out my stats to the team. I thought about my cat then from when I was a kid and I imagined petting him again. i thought well, my cat will be in heaven and oh well….Maybe I’ll be going there now, I thought.
But I didn’t. I woke up. And the world was full of people and beautiful. Is heaven like that? With cool breezes and kids running past? Is it summer in heaven? Do we hear the tick-tick of bicycles and feel the warm sun on our backs? Are there a lot of people? Are they all talking at once? Or is it quiet —like under the water during a really good swim?
I’m waiting now to start my chemo in 3 weeks. The prognosis is I will probably see more summers after this one. I hope. Summer feels like heaven must be —like at the city pool.
Because of Covid I’ll have to avoid the pools during chemo, so we’re going every day now till it starts. We go in the afternoon. My son plays with the other kids and I swim laps close by.
It’s so quiet under the water. A muted world. My mind travels to past present and future. I find myself dreaming as I swim and flip, swim, flip. Dreaming about the long summers before this one, the easiness of life, and of a future where life is back to normal, when this pandemic crisis comes to an end…
Is there an end? I wonder. Then I flip. And swim, flip and dream again.
Cancer really changed how I look at death. You’ll see, at whatever time in your life that life gets reduced on paper to probabilities, to 5 and 10 year increments scrawled by a busy doctor. When you’re asked to balance the decisions that are yours with the factors that you can’t change. The thing you can’t believe at first. You’ll see. I drew away from life just after my diagnosis. That’s normal. It can last. Eventually you jump back in —but you’re different though.
Now Covid…Covid changed how I look at life. Right? In the early weeks of the pandemic the past felt suspended in air like pictures of the gone world. What happened? How do we make a new life? What do we do with the now? Do we hoard our moments like a poet, scrawling them down, sketching and photographing them for later? There’s a before and and after now. What’s coming ahead of us in this world of the post? Is pre and post any way to look at the world? What are the other ways?
In the deep end I dive down —and watch my shadow float over glittery mandalas of sunlight on the pool floor… then I see another shadow following. It’s my son, he’s stopped playing to come swim along and do the grown up thing. It’s quiet here as we glide.
Then a faraway, oceanic whistle sounds: the 5 minute warning from the lifeguards above. It’s time to swim to the edge. They have to clean the pool for the next people. We emerge to the world again and make our way through the scratchy grass and clover, home.
In this podcast, I interviewed Melissa Eaton, one of the first (and most effective) campaigners against autism pseudoscience. We talked about phony autism cures and what we can all do to stop the people selling them.
Listen to the podcast right here by clicking the audio link below. Listen to this episode on Stitcher here Listen to this episode oniTunes here
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 beenfeatured on NBCand 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.
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.
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. My post below builds out from some of the podcast, focusing on science communication; Monsanto; and right-wing influence into the antivax movement (links at the end).
Listen to the podcast here by clicking the audio link below. Listen to this episode onStitcher here
Listen to this episode on iTunes here
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.”
The spread of pseudoscience myths has taken off like, well, a social contagion. Many marketers have co-opted real terms of public health such as flatten the curve to lend a false legitimacy to their products. Still others have relied on fear and conspiracy. Most frighteningly, some have creating new alliances with the radical right, leaving a legacy we will be dealing with for decades. Here is a rundown of 3 trends I’ve been following: bleach, supplements and Masks4All.
Bleach amulets and MMS
The first COVID-related article of faith I saw online was a plastic amulet filled with hardened industrial bleach, with the claim it could ward off coronaviruses. It’s called the “Corona Necklace” or“Shut Out” lanyard and sellers claim it can kill off coronaviruses up to one meter away.
These products are made by some of the same people who make Miracle Medical Solution (MMS), a phony cure people also ingest, believing it can cure a variety of conditions including autism. Like most pseudoscience purveyors, the bleach-cure marketers are always looking for a new disease to “cure” because it means more profits for them. Most successful pseudoscience marketers sell to multiple markets. In fact, this is a red flag for pseudoscience: If it can cure everything under the sun, it’s a fake for sure.
When President Trump referenced cleaning products as a potential COVID treatment (a claim he later backed away from),I co-wrote an article for the New York Times about the MMS industry and the power it’s attained as regulators and social media platforms did not take swift enough action over the years. Advocates were working to get regulatory action well before the pandemic, as the companies continued to promote MMS for autism and a host of medical conditions, including cancer. I’m happy to report that in April US federal marshals issued Cease and Desist orders to several MMS companies as part of a broader crackdown on COVID pseudoscience. The Genesis 2 “Church,” a key dealer, will appear in court in late May for contempt of court because it didn’t follow an earlier injunction.
Genesis 2 isn’t the only big MMS seller. “3 Doses of CD Knocked Out his Coronavirus Symptoms!” claimed the website of MMS marketer Kerri Rivera. (CD is MMS). Ms. Rivera was also served papers by the FDA in April, however her company has a history of re-inventing itself with new groups, new names and new platforms. There are also smaller MMS dealers. The FDA’s battle is far from over.
For buyers who resist the idea of MMS in its ingestible form (or in markets where regulators have banned it), sellers created the hardened-bleach amulet. Much like Trump floated the idea of “injectable” cleansers for COVID, Press Secretary of the President of Russia Dmitry Peskov was reported to be wearing one of the lanyards, although after these reports he stated he had stopped wearing it. Recently, US Customs has been seizing the lanyards as part of a larger crackdown on phony COVID products.
Amulets serve a powerful role in culture. The idea of warding off evil spirits, death and disease with a symbol is ancient, and our ancient superstitions tend to resurface in times of uncertainty. Like now. Unfortunately, when people embrace magic protective objects instead of taking appropriate steps (for example, sheltering in place and keeping social distance), they are endangering public health.
Health supplements & Re-open protests: Right wing links
Pseudoscience marketers have been profiting by attaching their “COVID solution” to conspiracy theories and hostility aimed at public health leaders. The pseudoscience empire of Joseph Mercola, for example,asserts that“COVID-19 virus is a chimera. It includes SARS, an already weaponized coronavirus, along with HIV genetic material and possibly flu virus.” Mercola’s websiteis promotingCoronavirus prevention through probiotics, Vitamin D, Maca, “Beta 1,3D Glucan” and a host of other products that the company sells, with the ad content running directly beside its “news” headlines with titles like China Poised to Attack America and World Health Organization Should Be Renamed Chinese Health Organization.
This juxtaposition is a red flag for larger social and human rights issues that will continue to resonate long after the COVID crisis is over: the infiltration of the complementary medicine and antivax community by racist, right-wing conspiracy groups.
In many countries, a radical fringe of the Re-open movement hastargeted Facebook support groups for parents who don’t vaccinatetheir kids and been organized by “longtime conservative activists, whose robust operations were initially set up with help from Republican megadonors” according to a Washington Post expose. In Canada, the Re-open protests were initially organized by a group called Free North Patriots, which likewise recruited from parent antivax groups and included Yellow Vests and other racist groups. Also involved is the People’s Party of Canada (PPC), a far-right political party that espouses conspiracy and anti-immigrant rhetoric. The radical right was able to connect with antivax parents on conspiracies about 5G and public health and the groups came togetherfor the protests. The impact for the PPC at the polls remains to be seen.
The convergence of these interest groups at the rallies signifies a long recruitment campaign by far right groups. It’s been a radical shift for a lot of antivaxxers, many of whom were formerly otherwise liberal in their views. Now more than ever we have to look carefully at how we communicate with the fence-sitters (people who still hold mainstream views other than antivax) to help keep them away from the ranks of the radical right and an emerging Canadian Tea Party.
Our discussions with antivaxxers are no longer just about public health and children’s rights. In this work, we are now also fighting the rise of fascism in Canada.
Pseudoscience: Fake news & stealth marketing
Fake health news has abounded throughout the pandemic and thus we also need to critically look at the sources we’re using for news. For example, the pretend newspaper (Medium) is running advertorial content about “slowing contagion” through pseudoscience, such as “Don’t Just Avoid the Virus — Defeat It by Strengthening Your Immunity“. After acknowledging the importance of hand washing and social distancing, authors Amory Lomens and Eric Rasmussen then call public health guidance into question, writing: “We’re told to avoid exposure, but not to reduce ‘host hospitality’ (us being hospitable to the virus) by making ourselves more resistant to viral infection. Slowing the spread and flattening the curve will take both.” The solution, in their telling, is to take vitamins–especially vitamin C.
As a platform, Medium promotes not only pseudoscience but also the Yellow Vests, pro-fascist dictatorship propaganda and other fake news. We all need to consider whether we should be supporting and sharing from platforms like this.
What can we do?
Predatory groups have descended on people at their most vulnerable moments during this crisis and sadly, that’s nothing new. The pseudoscience industry has a history of being responsible for real violenceagainst autistic and developmentally disabled people in the form of “treatments” and has led people to refuse life-saving medical care for cancer and other conditions. It is not “the CDC” that has blood on its hands—it is the pseudoscience industry.
There is no safe amount of pseudoscience to tolerate in this crisis. I understand that this is personal—people’s emotional health can be tied in with the objects and choices that will reduce their anxieties about safety. You might feel like if your family member or neighbour wants to take some vitamins or wear a fake amulet that’s ok, because it makes them feel better. But pseudoscience, and all that goes along with it, remains risky to the safety and emotional wellness of our society. Public panic leads to violence and make everyone less safe. The radical right is seizing on the opportunity to build its community. Big business is leveraging fears to offer simplistic solutions that merely increase their bottom line. Many of the products and beliefs are part of a disinformation networkthat profits from propaganda against our public health agencies.
We need to ask: what impact does it have on our children who are watching these rituals, other than to confuse them about what is safe–and indeed, their notion of how “safe” our world even is now? These are ethical questions that can’t wait. They reflect the long shadow of pseudoscience and its impact on our psyches and our children’s future.
It’s why we all need to intervene when we see Covid-19 pseudoscience. If you see something, say something. We can use our own influence to promote resources that are based on science. This sometimes means stepping outside our comfort zone or re-thinking how we communicate with people that have different views. It means getting comfortable with admitting that sometimes the answer is “I don’t know” because information is changing, because this is all new. And it especially means keeping our messages to our children about this pandemic simple, calm and always truthful.
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. Links to the podcast on iTunes and Stitcher at the end of this post.
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!
In this podcast, Gaby and I discussed racism in the education system, the disability hierarchy, media bias and representations of the self-advocacy movement, eye contact and cultural norms, the power of social media, the situation in Ontario and more!
Listen to the podcast at the audio link below. Links to iTunes and Stitcher at the end of this post.
Bio: Gaby received her BA in Biological Anthropology from the University of Toronto. In addition to contributing to the critically-acclaimed anthology “All The Weight of our Dreams: On Living Racialized Autism,” Gaby is one of the founding members of Autistics for Autistics Ontario, the first provincial autistic self-advocacy group in Ontario and an international affiliate of the Autistic Self Advocacy Network.
Her work includes programs to educate health providers on autistic patient experiences and needs, employment accessibility outreach and communications with the governments of Ontario and Canada to reform autism policy. In addition to being diagnosed autistic in early adulthood, she also holds other identities such as being multiply neurodivergent and the first in her family to attend university in Canada.
The Episode: In this podcast, Gaby and I talk about racism, ableism and the overlapping oppressions faced by her family as newcomers to Canada in dealing with schools, the autism services system and higher education. Despite the Government of Canada’s official rhetoric about diversity, Canadian schools and service organizations continue to marginalize bilingual families, failing at effective outreach for services, discouraging children from speaking their language of origin and operating community services without meaningful inclusion of people of Colour.
“The social workers, the City workers, anyone behind the front desk did not look like me—or like any other resident in the community they were supposed to be serving.”
In Ontario’s education system, autistic and intellectually disabled (ID) students are disproportionately targeted for special education and the school-to-prison pipeline, too often underestimated and discarded from the opportunities that their white, nondisabled peers have access to. Students of Colour are still targeted disproportionately for disciplinary actions and overtly or tacitly streamed out of the path to higher education.
Rather than make the systemic changes we need for true inclusion and equity, too often policymakers focus on band-aid solutions. For example, Ontario’s current government is focused on funding “more therapy interventions” for anxiety in autistic students rather than addressing the sources of the anxiety, (which is the stigma and trauma inflicted by the existing segregated education system.) The government has rejected recommendations to reform school and service models. Currently, the system is mostly working against the needs of the community: especially for those most marginalized, such as newcomers, people of Colour, non-verbal autistics and economically disadvantaged families.
While positive models exist in other jurisdictions (supported decision-making, the money-follows-the-person model, independent supported living, school inclusion) somehow Ontario’s system isn’t yet being reformed in any meaningful way. This episode is very connected to what’s happening here—and also part a much longer, on-going discussion within disability rights and autistic self-advocacy towards addressing bias within our own organizations. We have a lot of work ahead of us.
Resources All the Weight of Our Dreams explores intersectional oppression and realities for autistics of Colour, and it is a must-read, in a world that is too often white-washed and centred on an imagined norm (neurotypicality). Ordering info below:
“The best practitioners are humble when they meet a new person. A poor practitioner is someone who thinks they know it all and can just apply a model and intervention and…tick a box,” says Dr. Damian Milton. In this broad-ranging interview, we 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. Links to iTunes and Stitcher at the end. Transcripts to be published here soon, too!
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 Mailreportedthat 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).
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 Autismbookand 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.”
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 with youth.
Listen to the podcast below. (iTunes and Stitcher links are at the end of this post.)
Bio Sam Himelstein, Ph.D., is a Licensed Psychologist specializing in working with juvenile justice-involved youth, addiction, and trauma. He travels the country speaking at conferences and conducting professional trainings and is the president of the Center for Adolescent Studies. His mission is to help young people become aware of the power of self-awareness and transformation, and train professionals with similar interests.
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 Analyticsand 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 global movement against autism pseudoscience and a fierce protector of children’s rights to health and safety.
Listen to the podcast below. iTunes and Stitcher links are at the end of this post.
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. Listen to the audio link below
(for iTunes and Stitcher links, see the bottom of this post)
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.
This week I interviewed Ryan Armstrong of the pseudoscience watchdog group Bad Science Watch Canada.
Listen to the interview at the link below or via the iTunes and Stitcher links at the end of this post.
Bio 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:
lapses in inspection for integrity;
misleading labeling claims;
proxy consent for children and others who can’t give informed consent.
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, onereportnotes 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 ofchelating agentsto “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 issuingwarningsagainst 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 tested44 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-thirdshowed “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 orViagra). 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 diligenceor drag outfor 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.”
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!
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.
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.
The episode 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.