I had a very informative and thought-provoking conversation with Dr. Marc D. Feldman, an expert on medical child abuse and factitious disorder. We talked about medical child abuse, including Munchausen-by-proxy and the abuse of autistic children through autism pseudoscience. We also talked about interventions and supports, the need for education and what we all can do to stop the abuse.
Listen to the podcast right here by clicking the audio link below. Full transcript below the audio link. Listen to this episode on Stitcher here Listen to this episode on iTunes here
Bio 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.
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.
. Transcribed by Julie Ann Lee: Transcript_Noncompliant_Burrow
. Bio 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. Derek uses augmentative communication, also known as AAC (specificallyProloquo4TextandProloquo2Go) 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.
The episode 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.