My Days as a Disability Rights Advocate
A detour from the story of my early life, to explain the autism connection
This post has three parts:
Links, by topic, to past posts, and some comments on ideas I have for future posts
Thoughts on (my) autism
A list of some of the activities that absorbed my attention for many years
(1) Coming Attractions, by subject matter, with links to my archives
by clicking the subject titles, you can also see a list of previous posts on each topic — the comments here are ideas I have for new posts
INDIGENOUS STUDIES: An account of my recent day in Stockbridge with a Brothertown group (including more local history, some of which I did not have time to share during the walk that I led).
PERSONAL HISTORY: More about my early life of crime and poverty (it wasn’t all bad), to be followed by many stories drawn from my long and varied life. I imagine they will be at times upbeat, perhaps humorous, and sometimes tragic. Part of my motivation in telling these stories is so that I can relive the glorious moments, and reconcile myself with things that went badly.
RUMINATIONS: I will follow up on several topics such as justice, racism, consilience, and other political and philosophical issues, some of which may eventually need their own category.
AUTISM: I have added a new category, beginning with this post.
(2) Some thoughts on autism, as I have experienced and come to understand it
In my most recent post, as well as in several earlier stories, I mentioned my autism as an explanatory factor. Not, mind you, as an excuse for bad behavior, but as a way of helping to understand my motivations.
One purpose of this post is to provide a résumé of my many years of disability rights advocacy, with a focus on autism. In recent years, I have scaled back my involvement, and now serve on only two organizations. The next section contains a brief summary of many of my activities.
Each of the entries in that list deserves its own post. There are many stories yet to be told. For now, here are my major takeaways from my study of autism and from my self-reflection on being autistic.
I began to suspect that I’m autistic in 2005, when I was 59 years old. It took me several months to secure a clinical diagnosis.
autism in much more common than generally recognized — I have met hundreds of people who identify as autistic, and I know many folks who are autistic but who are not aware of that
autism is all about extremes: extreme reactions, extreme personality traits — sensory issues are commonplace (both hyper- and hypo-) — joy and sorrow seem to be experienced at higher levels (all of these things, it seems to me, are more intense for autistic people when compared with neurotypical experience)
being autistic is both a blessing and a curse — like so many things in life, there are tradeoffs — the autistic brain takes in and processes an enormous amount of input, which, on one hand, can lead to brilliant insights, and, on the other hand, can produce overload and lead to meltdowns (sometimes including emotional dysregulation)
depression goes hand-in-hand with autism — almost every autistic person I have come to know well has admitted to episodes of severe depression; a feeling that life it just not worth living (not necessarily accompanied by suicidal thoughts)
the underlying neurology of autism expresses itself in many different ways, and sometimes receives other labels, such as bipolar, dyslexia, and ADHD — all of which (in my opinion) are forms of autism
since neurotypical people are in the majority, they often have expectations around social norms that do not jibe with autistic culture, or design things that are harmful to autistic people — such as public spaces with bright lights or excessive noise (or both)
(3) An outline of some of my many activities as an advocate
For nearly as long as I can remember, I was involved in advocacy in one form or another. As a teenager, I participated locally in the Civil Rights Movement of the 1960’s. A few years later, I was the President of a national student organization that was working to end the war in Vietnam.
Many years later, when (in my 60’s) I became interested in changing the way autistic people were treated, it dawned on me that my motivations for changing the world were twofold. For one, I did not like what I saw, and, since I live in this world, I wanted it to be a better place. Secondly, I had come to support the causes of the underdogs because, without being consciously aware of it, I had always been one myself.
As I began my advocacy in the autism community, I quickly became aware of the common cause we had with other disability communities. The solutions/remedies might have been different, but the challenges were the same. We were all faced with discrimination in education, employment, housing, and public accommodations.
As a result, I became entwined with advocacy for other disabilities as well.
During the past 20 years, I have been involved in advocacy in many forms, including (but not limited to):
The Board of AANE (originally known as the Asperger’s Association of New England, now known as the Association for Autism and Neurodiversity.) I was on that Board for about 8 years, and served as the Board’s Vice President.
I was an advisory member of AFAM which, despite its name, was not particularly focused on advocating for autistic people. It was, rather, advocating for the needs of parents and other caregivers (including clinicians), and this led to clashes with AANE.
When, at the urging of AANE, the Massachusetts Special Commission on Autism was formed, in 2010, I volunteered to serve as Commissioner. The public members of the Commission were appointed by the Governor, and when I told my friend Deval Patrick of my interest, he raised his eyebrows in mock horror and said, “I’m SO surprised!” He was well aware of my advocacy work and the reason for it — but, ASFAT!
I also represented AANE (and, by implication, the autistic community) on an initiative of the Massachusetts Disability Law Center (DLC) known as CDAC (a large coalition of disability advocates). It was through this connection that I was able to draft legislation to provide, for the first time, state services for autistic adults. Again, ASFAT as to the amount of work (by many, many people) that went into getting the legislation passed.
I participated in several ASAN panels on employment; some were with large quasi-government agencies in the DC area, as well as a Wall Street firm in Manhattan.
For many years, I co-facilitated AANE-sponsored couples support groups.
I also participated in, and eventually facilitated on my own, a support group in western Mass for autistic individuals. And, briefly, a similar group in Berkshire County.
I helped coordinate, in conjunction with DDS (the Department of Developmental Services) a sensory-friendly presentation at the Mahaiwe Theater in Great Barrington around a video of a live performance of The Curious Incident of the Dog in the Night-Time, followed by a discussion panel. It was that book that first led me to suspect I might be autistic.
I have been a frequent speaker at many many conventions, panels, and training sessions (such as for DDS staff, and for Mass Rehab staff and clients).
I gave a commencement address to the graduates of a UMass Medical program on disabilities.
I taught several graduate-level courses for the Autism Program at The Elms College in Chicopee.
I have a video of an appearance I made at the Kennedy School. I was invited to discuss ways in which the school could accommodate the needs of autistic people. I brought along my friend, the author Susan Senator, to share insights she had gained as a parent of an autistic son.
I made a presentation to BU Law School students who were searching for a community service project. I suggested legal issues that were unresolved that they might consider tackling to improve the lives of disabled people.
I had many discussions, both in person and via email, with Steve Silberman, while he was writing his wonderful book NeuroTribes. I believe it is the best book ever written about autism, and I used it as a text in presenting my Berkshire OLLI course on autism in 2017.
I served as Board President at Autism Connections, which, among other things, is the Autism Resource Center for the western four counties of Massachusetts.
I currently serve on the Shriver Center’s CAC (Citizen Advisory Council).
There is more, but I think that is quite enough to give a flavor of the work that I have done. Despite many setbacks and frustrations along the way, I have done all of this with joy. Part of that came from meeting so many wonderful people who shared my vision, and a big part of it was the satisfaction I felt, knowing that I had helped to make life a little better for many people.
This is wonderful Michael. I met you in 2009, shortly after I first recognized that I am autistic, at age 52. We were attending a workshop about supporting autistic college students. I sat down at your table for lunch. You instantly made me feel comfortable and welcome.
Your advocacy is an amazing gift to everyone. I especially love your description of autism as that of experiencing life in extremes. That's what I always start off with too. I guess Iearned that from Tony Attwood originally. I think it helps neurotypicals understand HOW we are different, even if we appear the same.