To Autism Speaks, from the “Woman of Color”

When I was 12, I was put on my class debate team. One of the first concepts we were taught about was the difference between debate or any manner of constructive dialog and a shouting match. Rule one was to be informed, and never launch personal attacks on the individuals presenting the opposing view. Character assassination always lost the debate.

Perhaps everyone has noticed an increasingly large number of autism organizations, autistic disability rights advocates, parent advocates, and autism families are calling out Autism Speaks. Any nonprofit organization being criticized for any reason, should above all be both transparent and receptive to the concerns and criticism of anyone, particularly the population it professes to serve. It should listen to the families it demands fundraising efforts and donations from. Autism Speaks is not doing so.

Just to summarize, what Autism Speaks did this time was launch a campaign to control public policy on autism beginning with a massive lobby effort taking the form of a “policy summit”. What is wrong with this is that there are a great many other autism and disability related nonprofit and advocacy organizations who have autistic board members and diverse representation. Autism Speaks had no right to try and dictate policy alone. The right thing to do would have been to call a summit inviting all autism organizations and try to agree on policy. I say this because Autism Speaks has no autistic representation. I want to be clear on this. John Elder Robison was never made a member of the board of Autism Speaks. A careful inspection of autistic adults working with Autism Speaks will show none being given any true leadership role. They are given the specific message of promoting the medical model of autism, and must first show they are willing to propagate Autism Speaks’ view of autism in order to gain grant money or support. They must at the very least, not argue with Autism Speaks. This is qualitatively different from being a decision making autistic member of the board.

During Autism Speaks’ lobby invasion of Washington D.C., Mrs. Suzanne Wright signed her name to a blog post so heinous that the entire autism community, even parents who formerly supported Autism Speaks, reacted in outrage. I did as well (click here to read more). It was inexcusable. We have moved beyond that horrible time in history when disabled children were presented as tragic figures, and the fear of a world full of them used to gain some financial or other benefit for a nonprofit. Rather than respond to the genuine concerns of families, Autism Speaks ignored them. No concern has been expressed about John Elder Robison resigning from his association with Autism Speaks. Were I a board member that would concern me greatly.  I wondered why board members were not reaching out to those they accepted membership to serve. Then I inadvertently ended up in a brief written exchange with a board member and understood.

When I stated that efforts by legislative advocates, disability rights advocates, autistic legislative advocates, lawmakers, and parent advocates to mandate insurance reform began years prior to Autism Speaks’ entrance into public policy, and what in fact Autism Speaks had done was co-opt those efforts, take them over, and then claim organizational victory when reform was passed, the reaction of the board member was swift and vicious. Not knowing what was coming, I followed with the statement that Autism Speaks had no autistic members on its board and no diversity either, except for a female celebrity.

In response to this member’s comment that autism was a spectrum that sometimes was just “quirks” to be accepted and embraced, but all too often it was a nonverbal child with serious behaviors who needed a great deal of help, I reacted by saying that my son was one of those nonspeaking children that he was presenting as tragic and outside of acceptance and embracing. I pointed out that as a woman of color,  I was part of a population that was similarly maligned and he might not want to imply that my son was not worthy of acceptance. His response was to attack me personally. He went as far as using a common stereotype, saying that I attacked everything real or imagined, implying I was just the angry Black woman. He clearly has never read my blog.

Remember what I said earlier? If you feel you are losing a debate, never fall to personal attacks. In this case, the exercise of attacking an Afro Latina autism parent advocate served no purpose but to silence by insult. Hopefully this was not an example of how other board members or Autism Speaks itself handles criticism of its methods or shortcomings in its organization. In order to threaten and demean, “woman of color” was placed in quotes in his response. Apparently my race, in his mind, does make me less than others, and my son’s degree of disability was not worth dealing with when not used as an excuse for appropriating my son’s right to be represented by his peers.

Right now people are saying in a very loud, unified voice, that Autism Speaks does not speak for other autism nonprofits on what national autism policy should be. They are asking that Autism Speaks not speak for autistic people until it can show representation in the decision making levels of its organization, Not presenting autistic people and segregating them to projects and throwing funding at them. There is a difference gentle people. Demand more.”Don’t be tempted by the shinny apple, don’t you eat of the bitter fruit”, as Tracy Chapman sings. Autism Speaks has a great deal of soul searching and homework to do. Here in summary is what I see as needing work:

  1. Autistic Board Membership – There are great professional autistics who are wealthy, you know, like the rest of your board members. Find them.
  2. Diversity within the leadership and membership of the governing board: When I say “woman of color” I am being inclusive of all nonwhite racial groups. Autism Speaks has no Asian or indigenous  board members. I am also including ethnic minorities, I see no apparent Hispanic representation either. What about LGBTQ leadership? The present board membership does not reflect the population of members being supposedly spoken for.
  3. Autism Speaks has no right to drive public policy on autism exclusive of other autism organizations, particularly those existing self advocacy organizations who truly are speaking for their members. (read more here)
  4. It is time to  stop the tragedy model of fundraising. Stop using fear to raise funds too.
  5. Autism Speaks should try dialog with those who have justifiable grievances against them rather than launching attacks on those who criticize the organization.

Although I am just a “woman of color” with a “nonverbal son needing a great deal of help”, I continue to stand with autistic disability rights advocates, organizations and autism families demanding a sponsor boycott of Autism Speaks until these issues are addressed and resolved. Addressing the issue does not mean demanding those protesting on twitter have their accounts blocked, or using corporate strong arming to block protest. I continue to demand Autism Speaks respect parents of color and their nonspeaking autistic children.


The “Woman of Color”

Republished on AWN with permission. Original post can be found at The Autism Wars.

About the Author: Kerima Çevik is a member of the AWN Committee on Autism & Ethnicity and is on the Board of Directors at AUTCOM, The Autism National Committee. She is a parent activist for Autism and Social Justice, an active participant in the Autism Education Project, and has spoken at Autism and Disability Rights conferences and workshops. She is a married mother of two children, world traveler, and occasional blogger. She is currently homeschooling her adventurous, grade-school-aged son Mustafa, who is intensely Autistic and nonspeaking. Mrs. Çevik gave written testimony before the Maryland State Assembly in support of HB269/SB540 Child With A Disability – Individualized Education Program, which became law in May of 2010 and continues working with legislators in support of Autism training for first responders. Her first effort was HB 361, a bill modeled on similar legislation presented before the Massachusetts Legislature by Autistic disability advocate Lydia Brown. HB-361 was shelved after all stakeholders agreed to a regulatory mandate for autism awareness training instead. Mrs. Çevik’s professional and personal experience spans several countries, continents, and cultures, and includes work in translation and localization, project management, language instruction, and information systems management

* Read about the Boycott Autism Speaks initiative here