Wednesday, November 1, 2023

Celebrating 30 Years of "Don't Mourn For Us"

 Ira Eidle, Celebrating 30 Years of "Don't Mourn For Us"

In 1993, Jim Sinclair delivered a speech at the Autism Society of Canada’s annual conference in Toronto known as “Don’t Mourn for Us”. It was previously published in the first issue of Autism Network International’s newsletter under “Our Voices” in 1992. This was a very bold speech to give during a time where it was standard to treat an autism diagnosis as a tragedy. Research on autism was still in its early days and there was a much more limited understanding of what autism actually was at this point. Most of the literature on autism came from the perspective of non-autistic people. There were people like Temple Grandin and Donna Williams articulating their lived experiences to the public, though most of that wasn’t necessarily about the actual stigma surrounding autistic people and their personhood. Sarah Pripas-Kapit wrote a chapter in Autistic Community and Neurodiversity Movement that extensively analyzes the historical significance of “Don’t Mourn for Us”. I don’t want to be too redundant in that sense. Really, what I wish to discuss more is how far the Neurodiversity Movement has come since the thirty years since this speech was delivered and why it was so effective at sparking said movement. Autism Network International was a small group of penpals at this point. Jim has talked about how it was probably for the best that they grew at a relatively slow pace, given that the people involved were autistics and cousins. Cousins, by the way, was also coined at this conference by Xenia Grant, one of ANI’s cofounders. “Don’t Mourn for Us” sparked a lot of interest in ANI that really helped elevate its status as an organization. In the following years, a mailing list known as ANI-L was established, then ANI members were invited to collaborate in planning an autistic-led track for More Abled Autistic People (MAAP)’s 1995 conference, and the fallout of that event led to the planning of a Autreat, a conference that was by and for autistic people. So by the mid to late 90s, ANI had made a lot of progress in cultivating autism-specific spaces and conferences that were actually led by the population the conference was about. From this, there was further mobilization that came from the ideas discussed and experiences relayed at Autreat and on listservs. Eventually, with the proliferation of the World Wide Web, websites such as Autistics.Org and Neurodiversity.Net would crop up, acting as central hubs for information on all things neurodiversity, while also acting as ways of further mobilizing on issues related to autism and other neurological disabilities. There were also more listservs, like Martijn Dekker’s Independent Living on the Autism Spectrum (InLv), lists on Yahoo Groups like Frank Klein’s AutAdvo and AutisticSpectrumTreehouse, and websites on GeoCities. You also started to see the term “neurodiversity” tossed around, even seeing it in The Atlantic and New York Times. The turn of the millennium was an ample time for autistic people to organize and talk about autistic issues, as autism was starting to become more of a household name. Some of this was due to their work, but some of it was also because of the most influential autism organizations growing, and the formation of larger autism organizations like Cure Autism Now and National Alliance for Autism Research. A lot was being said about autism, but little of it meaningfully included the voices of openly autistic people. Not only this, but much of what was being said was not truly accurate and not based on particularly good science. It was definitely a moral panic. When autistic people and allies pointed this out, they were often faced with harsh criticism, dogpilling, and even stalking and physical violence in some cases. For some time, the autistic self-advocacy community mostly existed through listservs, WebRings, and blogs. There were a few formal organizations like ANI, and even nonprofits like GRASP, though neurodiversity was still a pretty fringe progressive movement. It certainly wasn’t mainstream by any means. This started to change once Ari Ne’eman and Scott Robertson started Autistic Social Action Committee, later renamed to Autistic Self-Advocacy Network. They facilitated the Ransom Notes Campaign in 2007, where they convinced the New York Child Study Center to remove stigmatizing ads they had about autism and similar neurological disabilities. Then they later became a nonprofit in 2011 and opened a national office in Washington, D.C.. ASAN and others involved with the Neurodiversity Movement hosted several public protests against Autism Speaks, which quickly became the world’s largest, most well-funded autism organization. Soon enough, autistic people who were involved with this movement started appearing in government organizations related to autism and disability such as the Interagency Autism Coordinating Committee and the National Council on Disability. There was also lobbying being done with the American Psychiatric Association on changes to make to the DSM-V. More autistic-led organizations cropped up, including Autism Women’s Network (now known as Autistic Women and Nonbinary Network) and Thinking Person’s Guide to Autism. There was further mobilization against a decades-long campaign to close the Judge Rotenberg Center, evolving into the #StopTheShock campaign. Now in 2023, neurodiversity is a much more widely known word and concept, and the research and literature on autism and similar disabilities is beginning to become more accurate and respectful, though there is still much work to be done. There’s a lot I didn’t mention but could have-the Neurodiversity Movement has a rich thirty-odd year long history-but hopefully what I listed is a decent enough primer. “Don’t Mourn for Us” is truly the manifesto of this movement, and what really sparked all of what I just listed. The reactions to “Don’t Mourn for Us” over the years have greatly varied depending on who you ask. For many autistic people, it has been an affirmation that they are real people who deserve to exist just as they are. For many parents, it has helped them come to terms with the existence of their autistic offspring and shelf their pity, at least publicly. For others, autistic and non-autistic alike, it is disruptive and militant sounding. Some suggest that it is anti-parent. In a lot of ways, it shows how there have always been tensions between ACs and parents (though those groups are not at all mutually exclusive). There is definitely some frustration in Jim’s words, though I personally think said frustration is justified. A lot of this was a response to Jim’s observations of how autistic people were treated and talked about at the conferences xe attended and the St. John’s Autism mailing list, as well as xyr own lived experience. People like Rimland, Kanner, and Lovaas got to parade around their harmful and downright false theories and treatments that traumatized generations of autistic people with relatively little pushback. The “hope” that was given to parents was really a false hope that their offspring’s autism would go away, or that they should ideally be as close to indistinguishable as possible. Not because emulating non-autistic behavior is inherently a good thing, but because being visibly disabled and needing support was somehow unbearable. Jim’s idea of hope expressed here was different. It was hope that autistic people could grow up with people around them who were actually supportive of their existence, that they would be considered worth respecting the autonomy of regardless of their ability to perceive and replicate the same language as everyone else. Jim even says at the end “come join us, in strength, and determination, in hope and joy”. Xe was offering a chance at a better life and better world for both the parent and the offspring that would come with a change of attitude. To me, “Don’t Mourn For Us” means many things. It’s frustration, but it’s hope, it’s grounded in reality, yet comforting, it’s critical but it’s also understanding. It was a great way to spark a movement for social change. If its intention was to be all of those things, then it succeeded on that front. Jim’s advocacy as a whole really helped inspire multiple generations thus far of activists-including, but not limited to Mel Baggs, Lydia Brown, Ari Ne’eman, and myself. That means something. In fact, it means a lot. TL;DR: Jim Sinclair’s “Don’t Mourn for Us” speech is central to understanding the history of the Neurodiversity Movement. It was radical to deliver it to parents who thought their offsprings’ autism was the worst thing to ever happen to them. It helped spark the Neurodiversity Movement, which has seen lots of mobilization in the thirty years since the speech was delivered. People have reacted to “Don’t Mourn For Us” in a variety of ways, and I feel a lot of the conceptions people have about it are inaccurate. “Don’t Mourn for Us” is a lot of things at once, and its complexity is what really helped inspire generations of activists.

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