03 February 2016

Autistic Representation Crisis in Massachusetts (but dying of not surprise)

Let me tell you a story (and apologize in advance for its somewhat long-windedness, but I promise, there's a point.)

Several years ago, the Massachusetts Legislature created a special commission on autism tasked with going through the entire state's services, programs, supports, and other types of resources related to autism. The point was to figure out what the state was doing right, what the state was doing wrong, and what the state was doing relatively all right but could stand to significantly improve. The commission also designated multiple subcommittees to deal with different subsets of autistic people -- ranging from school age to adults. The commission, and each subcommittee, met about once a month for most of 2011.

There were 44 members of the overall autism commission. 14 were public appointed members, and of them, to the best of my knowledge, only 1 (the ever-present Michael Forbes Wilcox, Jr.) was actually autistic. That means only 2.27% of all of the commissioners were actually autistic.

The autism commission met and so did its subcommittees -- several of us who are actually autistic participated in the subcommittees -- and finally released its final report in 2013. I was one of those autistic people, and I was part of the Adult Services Subcommittee. I distinctly remember a fun (that's sarcasm) experience where I suggested that self-advocacy should be a priority, and had managed to get out exactly one word (i.e. "self-advocacy") before a non-autistic parent began to literally shout me down for being "too high functioning" and "excluding nonverbal people with autism." (Sigh. So much for presuming competence and looking to follow the leads of non-speaking autistic activists like Amy Sequenzia, Naoki Higashida [mostly non-speaking], Mel Baggs, Tito Rajarshi Mukhopadhyay, and Larry Bissonnette who are in some ways the epitome of the original "self-advocacy" ideal...) I also remember spending four hours of my birthday in August 2011 in a subcommittee meeting. Fun times, huh?

Fast forward now to September 2014, more than a year after the final report from the special commission. Governor Deval Patrick signed into law the "autism omnibus bill." That bill recreated the autism commission, but this time, made it a permanent, standing commission instead of a one-time statewide project. The bill was jam packed with all sorts of recommendations from the special commission's final report, including, importantly, a policy change to the giant services gap for autistic people in the state.

Before the bill was signed into law, the Department of Developmental Services had a policy of refusing to provide services to autistic people who had an on-paper IQ of 71 or higher. At the same time, the Department of Mental Health had a policy of refusing to provide services to anyone whose "primary diagnosis" was not a mental health condition -- and because autism is considered a developmental disability instead of a mental health condition, even if an autistic person also identified with a psych disability, they would be ineligible. These parallel exclusionary policies meant that huge swaths of autistic people were unable to receive services -- essentially, anyone autistic with an on-paper IQ of 71 or higher. (This doesn't even begin to touch on the enormous structural problems with the classism, racism, and ableism embedded in the concept of IQ, but there you go.)

Among other things, the state government has been adjusting to the tenure of the new governor, Charlie Baker, who came into office in January 2015, four months after the autism omnibus bill became law. In the fall, the Executive Office of Health & Human Services (EOHHS, because there aren't enough acronyms in the world, apparently) sent out a call for nominations (and self-nominations) for people interested in serving on the new, permanent autism commission. Several autistic people sent in paperwork. I, at least, heard nothing for over a year.

In the fall of 2015, I saw on the EOHHS website that a first meeting was scheduled for the new autism commission. In January 2016, a second meeting was held. About a week later, I was at a disability and health advocacy forum where I ran into the Department of Developmental Services Commissioner Elin Howe, who mentioned to me that most slots were filled on the commission, but there was one slot specifically for an autistic person -- and that that slot had not been filled.

Somehow, despite multiple autistic people sending in paperwork to be considered, not one person had been identified until after the commission had already appointed the vast majority of its members (if not every single member other than the designated autistic person) AND had met twice as a full commission.

Somehow, despite the presence of only one autistic person during the commission's first run as a special commission, the state had not learned and did not think it a priority to ensure more meaningful representation of actually autistic people.

No information (to date) has been posted about the names of the people appointed and sworn in as commissioners.

In contrast, the federally funded Developmental Disabilities Councils require that at least 51% of membership be people with intellectual or developmental disabilities or their family members. (It really should be people who themselves are disabled at 51% and non-disabled family members a separate quota/constituency, but it's better than nothing, and many DD Councils have multiple members with disabilities.) Likewise, the national network of Independent Living Centers (ILC's)/Centers for Independent Living (CIL's) operate under laws that require 51% board of directors representation of disabled people.

No one is saying that every single disabled person under the sun is personally interested in public policy, personally capable at any point in time of participating in formal government processes re: public policy as they are run now, or individually represented by every other disabled person who is participating in public policy. (Every single community, ever, is made up of many disparate people with diverse perspectives and experiences.) But. Disabled people know better than non-disabled people what it is like to be disabled. Disabled people who do activism or advocacy tend to have a keen grasp of issues affecting them and people like them, even if we have an incredibly long way to go in sustained cross-disability work.

The best advocates for people with disabilities are other disabled people.

About a week after my conversation with Commissioner Howe, she informed me that the slot had been filled but did not specify by whom.

Earlier today (first week of February), I went to a health law networking event. (Honestly, one of my primary motivations for going to these things is the food. I love meeting new people and learning about what they do -- it is genuinely fascinating. But food is such a powerful motivator.) The new EOHHS Secretary, Marylou Sudders, was the featured speaker. During the Q&A, I seized the opportunity to ask questions first, and one of those questions was about the makeup of the autism commission (and its near total incompatibility with the principle of "nothing about us without us"). From Secretary Sudders's answer, I learned a few important -- and further infuriating -- facts:

(1) There are 35 total commissioners. That means that autistic people make up only 2.9% of the commission (still not even a full percentage point higher than on the original commission).

(2) As with many topic-focused government councils and commissions, the law specified that members must include representatives from various specific government offices and community organizations. Again as is standard practice, each organization entitled to a representative among the commissioners essentially chose its own representative. That means that every single organization (or all but one, depending on who that last appointee is, since we still don't know) chose a non-autistic person as its representative.

(3) Secretary Sudders (and potentially others) has proposed that someone should introduce legislation that would amend the law creating the autism commission to require at least a few autistic people on the commission. That means that no one thought to include any provision in the original bill specifying at least a certain number of seats for autistic Massachusetts residents (or creating a parallel requirement to the specified organizational representatives that a certain percentage of the total commissioners must be autistic).

This type of routine exclusion of autistic people from public policy is so ordinary that I doubt I'll ever be surprised by it. Back in 2012, a congressional committee on Capitol Hill convened a hearing on autism that originally included no autistic witnesses -- it took concentrated lobbying to force the invitations of two autistic people to the hearing (and both, notably, were white men). It took more than ten years before the notoriously awful organization Autism Speaks finally brought two autistic people onto its board (both are white and hold doctorate degrees) in a token symbol of representation. The federal Interagency Autism Coordinating Committee has had at least one autistic representative for the past several years, and for the most recent few, has had three at any given time (note again, all are white and all but one have been men).

It doesn't matter, though, that exclusion and tokenism are common practice in the public sphere. What matters is that organizations working in Massachusetts in 2016 should know better. What matters is that we need better communication and better decision-making processes and clearer guidelines for those determining which individuals from which constituencies and with which lived experiences will be invited and appointed to high-level policy positions. What matters is that any individual organization's choice to select a non-autistic representative means very little taken on its own, but that the total picture, where every single organization and agency (possibly, again, except for one) selected a non-autistic representative.

Who serves on these organizations boards of directors? How much influence do state agency advisory boards or committees actually have? Who occupies the executive and management roles in these organizations? Which organizations have enough clout to be guaranteed a seat at the table, and which depend entirely on local, grassroots support and operate primarily outside of the insiders' network? Who is recruited into the policy analysis divisions of state agencies? Who is offered internship and other experiential learning opportunities, either as part of conventional higher education or outside that institution?

How is it possible that out of the entire state of Massachusetts, it is acceptable in 2016 to permit only one autistic person to serve on the autism commission, and to wait until after two full commission meetings have convened to appoint that person?

This photo (below) is pretty out of date. A few readers who've known me for a long time might recognize it. It's from a focus group on autism and ethics that I coordinated for the Autistic Self Advocacy Network's New England chapter way back in May 2011. (Yes, I know I look like a child trying to be a business suit-wearing adult in this picture.)

Photo: A group of twelve people, mostly white, but spanning all ages, standing outside around late afternoon, smiling after their event. Dress ranges from totally casual to business suits. Left to right: Andrew Collins, Claudia S., Dusya Lyubovskaya, Ivan Sheth, Ari Ne'eman, Lydia Brown, Sara Willig, Danielle A., Ryan L., Phil Schwarz, Kevin Barrett, and Daniel B. Photo by Nathaniel Wood.

I'm including this photo in the middle of the blog post, because it shows twelve autistic people gathered in Massachusetts, mostly from the ASAN New England (now ASAN Boston) chapter. There were actually closer to thirty-something autistic people at the event, but most skipped out before the photo op happened. (Fine, four of them were technically from out of state, but "out of state" here includes one each from Rhode Island, Connecticut, and New Hampshire, none of which are that far.) Obviously, as we know from the special commission's 2013 report, there are many more autistic people in Massachusetts than in this picture, but it's nevertheless a visual representation of "more than one or two" of us.

We represent over 147,000 autistic people in this state. (Statistic derived from the 1/45 prevalence rate last reported by the CDC, and the 6,646,144 population number.)

Out of over 147,000 autistic people, 35 people have been chosen from across the state to make recommendations and decisions about autism-related public policy in the state government, and only one of those 35 is autistic. (We have to constantly remind ourselves that our voices do not matter and will not be taken seriously except when it becomes politically expedient. To do otherwise, to think or imagine otherwise, is to set ourselves up for constant disappointment. And remember, we must be grateful for any representation at all. Tokens, after all, must take on the burden of speaking for all of us when well-behaved and suffering constant dismissal and attack as "not representative of real autistic people" when even timidly challenging status quo.)

And, business as usual dictates that no one with the power to make any decisions notices our almost total exclusion until after we did. It's just. Business. As. Usual.


#LeaveItIn2015 #LeaveThatShitIn2015 ‪#‎OutrageousButSoSoSoNotSurprising‬


  1. We're definitely being treated like lepers, pedophiles, or both.

    Most likely pedophile lepers.

  2. Thanks for the shout-out, Lydia. (There is no "Jr." associated with my name.)

    I can attest to the fact that it was extremely stressful to be the only autistic member of the Autism Commission. Although I feel I made a significant contribution in the final product (having helped write sections of the report) and in the implementation of the Commission's recommendations (getting rid of the IQ test and installing the right of autistic adults to receive services), I have to say that many of my suggestions were ignored.

    Despite the frustration (even trauma) of being the only autistic person in the room when decisions are being made that affect autistic people, I continue to serve in various capacities. I'm on the Board of Community Resources for People with Autism, which serves the western four counties of Massachusetts. I am on the Executive Committee of Advocates for Autism of Massachusetts (AFAM), which has recently begun efforts to create an Advisory Council. I have been beating the drum for more representation of autistic people. I'd love to hear from people who are interested in participating.


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