Responding to Christopher McDougle
The Boston Globe interviewed the Director of the Lurie Center for Autism, Dr. Christopher McDougle, who was instrumental in producing the recent film Sounding the Alarm in conjunction with Autism Speaks.
The reporter asked, "There are adults on the autism spectrum who argue that they are just different — not disabled — and who object to efforts to eradicate autism by groups, like Autism Speaks, whose founders Bob and Suzanne Wright helped fund the new film."
Dr. McDougle responded, "Naturally if you’re someone with very high functioning autism, you don’t want to hear things about being eradicated as a person. Lumping everyone under the same umbrella leads to this confusion."
Last week, Autism Speaks and Mass General Hospital co-hosted the first screening of the film.
I led a protest outside the building.
Photo: Lydia Brown. This is a picture of the first ten protesters who arrived. At leftmost, John Robinson's sign says, "Disability Rights are Human Rights." Patrick W.'s sign says, "Autism $peaks Hurts Autistics." Ryan Tilton's sign says, "I am Autistic; My Life is Not a Crisis!" Allegra Stout's sign says, "Civil Rights, Education, Jobs, Healthcare, Not A Cure." Erin Flaherty's sign says, "Autism Speaks Does Not Speak For Autistic People." Don S.'s sign says, "0 Autistic Leaders. ...Autism Speaks for whom?" Dermott M.'s sign notes that only 4.5% of money raised from Massachusetts returns to programs and services for autistics and families in Massachusetts. Beside Dermott is Andrew Coate and Meghan Schrader, who are both holding a sign that says, "Lurie Center: Supporting Autism Speaks = Supporting Eugenics." At rightmost is Daniel Berman, whose sign isn't visible in the photo.
It was cold, and my fingers eventually turned numb from the several hours we spent standing on the sidewalk, displaying our posters to anyone who walked by and engaging several passerby in conversation about the damage that Autism Speaks and its agenda of cure has done to the autistic community.
Close to thirty protesters turned out over the course of the demonstration, and we represented a diverse cross-section of the disability community. Emily Titon, co-chapter leader of ASAN Rhode Island, and Yosef Treitman, chapter leader of ASAN Rensselaer Polytechnic University, traveled from out of state. Autistic folks from throughout Massachusetts turned out in large numbers, along with protesters from the blind, quadreplegic, little people, and psychiatric survivor communities. I counted at least two adorable service dogs.
We were there because we believe in the power of disability pride and autistic community.
There is the derisive presumption that the words disability and pride do not belong in the same sentence, because disability is wrapped up in so many layers of baggage and stigma and shame. But those of us disabled out there, we are disabled and proud.
This presumption is also embedded into the dismissal of autistic activists who stand against hateful organizations like Autism Speaks. It is commonly believed that we think of ourselves as merely different, a bit quirky, a bit eccentric, but not really disabled. Again, because disability is nearly universally assumed to be undesirable, the status that no one would want to have or own.
We were protesting because we are disabled and proud.
Disability is embedded into the human experience. To be autistic is to be disabled. There is no shame in that. I am proud to be autistic and I am proud to be disabled.
Organizations like Autism Speaks use fear-mongering and hateful rhetoric that relies on stereotypes of autistic people as burdens on our families, public health crises, tragedies in human form worthy of pity and charity, and terrifying specters for the rest of society to contemplate.
People like Dr. McDougle routinely invalidate autistic activists who stand against Autism Speaks by relying on a certain toolbox of de-legitimization tactics.
Tactic 1: Those people represent a very small proportion of people on the spectrum.
Tactic 2: Those people are really very high-functioning, and don't experience the severe levels of disability that most people on the spectrum do.
Tactic 3: Those people don't really have the same disability as people who REALLY have autism.
They're not old, but they're still hurtful and still dangerous.
Dr. McDougle, some of the protesters from last week have personal care attendants (PCAs) to assist with activities of daily living. At least one usually communicates using AAC text-to-speech. Some are unemployed. Many have multiple disabilities.
High-functioning and low-functioning are arbitrary labels with no scientific validity or consistent criteria for differentiation. Is speaking the criteria for being high-functioning? Plenty of speaking autistics are unemployed, unable to complete formal education, and unable to live without the support of personal assistants. Is working the criteria for being high-functioning? Plenty of working autistics don't speak, have intellectual disabilities or psychiatric disabilities as well, haven't completed formal education, or live with support people. Is living alone the criteria for being high-functioning? Plenty of autistics who have their own housing are unemployed, have multiple disabilities...
No one has the same skills and knowledge at one age as they did at another. No one skill or ability is necessary constant or consistent, or consistently increasing in ability. Skills are not static. And the presence of one skill or ability certainly doesn't indicate the presence of another.
This shouldn't matter though.
But it does, and you and people like you are the reason that it does. Were it not for your, shall we say, perseverative insistence on functioning labels as a means of categorizing, segregating, and invalidating autistic lives and experiences, this conversation would never have to happen.
This picture (photo: Lydia Brown) shows three protesters, Ruth Ricker, Reuben B., and John Kelly. Ruth's sign (John later made a matching one) says, "Nothing About Us Without Us." Reuben's sign says, "0 Autistic Leaders... Autism Speaks for Whom?"
Nothing About Us Without Us is a longtime slogan of the disability civil rights movement. Autism Speaks, which lacks even a single autistic person among its entire Board of Directors or executive leadership, somehow purports to represent the interests of autistic people.
You, Dr. McDougle, and the Lurie Center, have become complicit in this profoundly disturbing and dangerous misrepresentation.
Autistic people have been organizing for decades to work toward more inclusive, accepting, and equitable futures.
For the vast majority of us, the rhetoric of cure is deeply rooted in a pathology paradigm of disability that ultimately contends that people like us should not exist. We share so many experiences, sensory, movement, communicative, emotional, relational, and social with one another. Our community, for all its fractures, is still a community.
And you have no right to attempt artificial divisions along the propagandistic lines of high and low functioning.
We do not need the medical-industrial complex to serve as the gateway for autistic identity.
Our futures must be our own, not dictated within the agenda of eugenicist organizations like Autism Speaks. It is time for your complicity to end. Do you want better futures for autistic adults? Then include us in the conversation, in the decision-making process, in all aspects of the research from development to analysis and implementation. Reject the harmful rhetoric and hateful mission of Autism Speaks. Respect the voices of autistics because we can, have been, are, and will continue to be speaking for ourselves.
Photo: John Kelly. A line of protesters holding colorfully printed signs, such as "Autism Speaks for Whom?", "Nothing about Us without Us (my favorite), "We Are People Not Puzzles," and "Civil Rights, Education, Healthcare – Not a Cure." Protesters are on the sidewalk, greeting viewers after the film promoted by Autism Speaks.
love it Lydia. Scott Ricker, Reli-AbilitiesReplyDelete
But Lydia, I am still called low-functioning so it is ok for the doctor to want to eradicate me. My life is so tragic, I don't understand anything, I can't even feel things. I am not like those high-functioning autistics who have such a great time and don't need any kind of help or accommodations. They are almost normal! I need the doctor to cure myself from my existence so the world does not feel my burden (sarcasm)ReplyDelete
Not sarcasm now: If I lived in MA, I would have been there. Thanks for this article and for doing all that you do!
I keep wishing there wouldn't continually be more reasons for things like this to be written. The rhetoric used by Autism Speaks supporters is just tiresome to see every day. But as long as it's being said, I'm so glad there's someone as eloquent as you (along with so many other spot-on advocates) to write responses like this.ReplyDelete
Defending A$ is like having a heart attack over a girl that doesn't love you back-it's pathetic.ReplyDelete
"Naturally if you’re someone with very high functioning autism, you don’t want to hear things about being eradicated as a person. Lumping everyone under the same umbrella leads to this confusion."ReplyDelete
I wish people who don't know anything about autism would stop talking.
Oh, and Christopher? When Autism Speaks is using the statistics of 1 in 88, YOU are lumping me under that umbrella.
If, on the other hand, you're going to go the route of "we're not talking about eradicating people like you, we're just talking about eradicating the severely disabled who can't defend or speak for themselves," then you really need to think more about what that says about you as a person. If you're only talking about eradicating the people who you've decided probably can't fight back.
Thank you for writing this brilliant post. I'm autistic and when I tell people they say, "Really? But you speak so well. You don't sound autistic." I find it a little offensive because not every autistic person is nonverbal, and I do speak.ReplyDelete
Thanks for the post! I was almost going to watch that movie but a quick google search led me here and saved me the trouble. Y'all are making a difference!ReplyDelete