National Autism Strategy Town hall: A Chance For Autistic Justice & the Likelihood of Disappointment
Written by: Lulu Larcenciel
There are a lot of events being held online this May Day, but many Autistic self-advocates in Canada will be paying attention to one in particular. Some advocates have been dreading this event, the “National Autism Strategy Townhall”, facilitated by three non-Autistic MPs, with no Autistic people in the room, since they heard about it. For all of this month, like every April, agencies and groups across Canada had to be reminded that the “puzzle piece” symbol for autism is offensive and harmful. Even though a study was published in 2017 that proved even a generic “puzzle piece” symbol invokes negative assumptions like incompleteness or oddity in the general population, the stigmatizing icon has endured(1). Symbols like the “puzzle piece” or the “Light It Up Blue” campaign have continued to thrive and spread ableist stereotypes, thanks to non-Autistic people speaking over Autistic people in advocacy and policy conversations. Entrenched ableism is hard to fight, and it’s hard to move the dial in conversations like like this - especially if everyone in the room is non-Autistic Despite there being many thriving Autistic Advocacy groups across Canada, Autistic people are rarely invited when the government discusses policy that affects Autistic people. Part of the reason for this is a phenomenon well-known to Disability Justice activists: “martyr parents”. Groups of parents who love their children but carry internalized stigma and prejudice, worldwide, have stalled efforts for disability rights and justice since our struggles began. These parents often believe that since they have Autistic children, they are experts of Autism. This is of course absurd; straight parents of gay children are not experts in Homosexuality, and just like homophobic parents can cause harm to children, so can ableist parents. From casual stigma to filicide, caregivers of Autistic people have been known historically for both inadvertently and sometimes purposefully perpetuating negative outcomes for Autistic kids and adults(3). Canadian Autistic people need a government that puts Autistic voices front and centre while talking about autism, not the non-Autistic parents of Autistic children. No doubt during this townhall, disability advocates will cringe at the misinformation, stigma, and misrepresentation of our experiences that will be shared by some parents and practitioners. No doubt it will be stressful - advocates have been justifiably concerned since the event was suddenly announced last week and we are quite used to hearing ourselves be dehumanized and disrespected under the guise of “caring” on primetime. In this as in most discussions of Autism, it is Non-Autistic people moderating and taking the lead, so we have to hope that our MPs (In this case, NDP MP Don Davies, Liberal MP Judy Sgro, and PC MP Mike Lake) are listening when Autistic people reach out to them. We need our MPs to be cognisant of Autistic people’s preferences, from the language we prefer by a great majority (“Autistic” is preferred over “With” anything(4)) to the goals we think Autism research or a National Autism Strategy should have (5). How can we do better and make sure Autistic people are engaged in the process going forward? Would it matter?
Our government needs to be centering Autistic voices, and it matters quite a lot. Stigma against autistic people is dangerous, and when stigma is internalized into how someone sees and conducts themselves, it can lead to suicidality (6). Autistic people are facing a crisis of autonomy, and this is a front of Disability Justice which has received little attention and support from progressive organizations or parties. In this townhall, and probably the next and the one after that, some Autistic people hope to hear government officials address Autistic people and their families with respect and understanding. Some Autistic people have long given up on feeling represented by our government. Will these MPs be able to show that Canada is moving forward toward Disability Justice, or will Autistic people be disappointed once more? To watch the townhall, you can attend through this link:
References: 1. “Do puzzle pieces and autism puzzle piece logos evoke negative associations?” Published in the journal Autism in 2017. Importantly, this study concluded that “Participants explicitly associated puzzle pieces, even generic puzzle pieces, with incompleteness, imperfection, and oddity” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6085079/ An article detailing the offensive and ableist history of the logo, “The Ableist History of the Puzzle Piece Symbol for Autism”: https://intheloopaboutneurodiversity.wordpress.com/2019/03/20/the-ableist-history-of-the-puzzle-piece-symbol-for-autism/ 2. “Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts” - Frontiers in Psychology https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5368186/ 3. “How Autism Warrior Parents Harm Autistic Kids”: https://medium.com/the-establishment/how-autism-warrior-parents-harm-autistic-kids-6700b8bf6677 “How Murder Victims With Disabilities Get Blamed For Their Own Death”: https://www.huffingtonpost.ca/entry/murder-victims-disabilities-mercy-killings 4. Explaining Identity First Language - from the Autistic Self-Advocacy Network: https://autisticadvocacy.org/about-asan/identity-first-language/ A survey of 11,560 people of various neurotypes which shows definitively that the vast majority of autistic people prefer the term “autistic”, and that it is non-autistic people who prefer “with autism”. It also shows that non-autistic people are interested in “curing” autism but autistic people are opposed to a “cure”, and much more. https://autisticnotweird.com/2018survey/ 5. Ontario Autistic Advocacy group, Autistics4Autistics, has put together this policy piece about a “National Autism Strategy”: https://a4aontario.com/2019/09/14/autistic-self-advocates-and-national-autism-policy-where-we-stand/ 6. On Stigma, Masking, and Suicidality “Research Sheds Light On Why Suicide Is More Common In Autistic People” : https://www.nottingham.ac.uk/news/pressreleases/2018/august/new-research-sheds-light-on-why-suicide-is-more-common-in-autistic-people.aspx
About the Authour
Lulu is an Autistic mental health advocate, progressive organizer, and philosopher, passionate about integrating disability justice into all of our political and activist structures. You can follow Lulu at @FunFactsLulu.
Image description: Lulu stares to their right, smiling slightly. Lulu has rainbow coloured hair; a mix of purple, red, orange, yellow, green, and maroon. behind them, are staircase railings, and a brick wall.