27 March 2012

Autistic Empowerment: The Civil Rights Model

It was a busy day.

It began at 9:03 in the morning, when an Autistic friend who was planning to come to Georgetown from Pennsylvania called to cancel because her purse was missing, possibly stolen. Over the next several hours, the calls and text messages would increase in volume to near frenzy, pushing my smartphone to its hardwired and softwared limits. (So far, it's frozen at least nineteen times today. I've considered screaming in rage at Research in Motion or whoever-the-heck's responsible for creating Blackberries.) I count at least four missed calls from the last twelve hours. In the average week, I only have one.

Today was the culmination of months of ideas and attempts at planning. (Seriously, I created the event program sometime last night.) The panel was scheduled to start at 5:30pm, and we managed to assemble everyone by 5:20pm. We actually started at 5:52.

The event was "Autistic Empowerment: The Civil Rights Model." To my knowledge, this was the first time Georgetown hosted a campus event specifically focused around neurodiversity and particularly on the Autistic community. (I sincerely hope it won't be the last.)

(And yes, I designed the neat little logo to the left, which is also what appeared on flyers for the event.)

We were tucked away in a little-known but often-used space called McShain Lounge, where dinners, fundraisers, and lectures have been known to take place. Five maroon-cushioned chairs stood behind two tables covered with blue tablecloths on a small raised stage facing neatly arranged rows of identical chairs.

It took somewhere between thirty minutes and an hour of frantic phone calls and text messages about cabs and guard booths and benches to get everyone in one location. (As many of us in the Autistic community like to joke, getting a bunch of Autistics to do anything is like trying to herd cats. It doesn't work.)

I was happy that after my brief spiel and introduction, the audience took very readily to "flapplause," the Autistic adaptation of Deaf applause. Flap, don't clap.

The event opened with Melody Latimer, the author of AS Parenting and the Director of Community Engagement for the Autistic Self Advocacy Network. Melody's remarks focused primarily on the challenges of integrating the Autistic and parent communities, both of which frequently seem to overlook the presence of people who are both Autistic and parents (particularly of Autistic children.) Both of Melody's sons are Autistic. She has been diagnosed with Asperger disorder, her older son with Autistic disorder, and her younger son with the rather nebulous label "Autism spectrum disorder" in an attempt to recognize the rapidly changing nature of his abilities and challenges.

Melody Latimer -- Fun fact: This picture was taken at the Autistic Self Advocacy Network's five year celebration at the National Press Club in November 2011.

Too often, discourse among and between the Autistic and parent communities tends to be centered around Autistics who are not parents and parents who are not Autistic. Autistic parents may find themselves perched precariously on a hastily erected but well fortified fence separating two seemingly irreconcilable and discrete entities. Melody spoke of the necessity of urging parents to raise their children the right way -- rather than worrying about what you want your child to do, worry about what your child needs.

Why eliminate stimming behavior? Melody spoke of a parent who wanted her child to stop stimming so he wouldn't be bullied. "The problem isn't the stimming," said Melody, "it's the bullying." You stop the bullying, not the stimming. Then there's no reason to worry about the stimming.

(All of the Autistic panelists were visibly stimming throughout the panel, as were several of the Autistics in attendance.)

When Paula Durbin-Westby, former Board member and later staff member of the Autistic Self Advocacy Network, took the floor, she addressed first the issue of tokenism -- having one person from a group, in this case an Autistic, as a member of a group or leadership body. You're expected to be polite and well-behaved. Tokenism happens "in movies, where there is bit part for one character from a group" and when people are given long or important-sounding titles, like Co-Executive Director, but no real responsibilities, whether or not they have the capability of executing any duties.

Autism Speaks is guilty of this -- there are no Autistics actively or meaningfully involved with the organization's leadership and administration. In response to criticism for this egregious exclusion of the very group they claim to represent, they appointed one Autistic, John Elder Robison, to one of their advisory boards. (He serves alongside twenty-nine non-Autistics. Tokenism at its finest.)

Last year, the statutorily-created Massachusetts Autism Commission was also guilty of tokenism. To my knowledge (and I attended most of the Autism Commission's meetings as well as served on one of the subcommittees), the actual Commission itself had only one Autistic commissioner (Michael F. Wilcox), though there was at least one other person with a disability serving as a commissioner. (Charles Carr, who is also the Commissioner of the Massachusetts Rehabilitation Commission, has a physical disability, and has no neuro-developmental disabilities to my knowledge.) ASAN New England, however, attempted to rectify that, with several Autistics local to Massachusetts volunteering to serve on the Adult Services Subcommittee, one of several subcommittees assigned by age group of the target population. (Those were Dusya Lyubovskaya, Kevin Barrett, Phil Schwarz, Joyce Kohn, Sara Willig, and I.)

Paula C. Durbin-Westby -- This picture looks like it could definitely belong in one of those feature news or magazine articles.

At the panel, Paula further discussed the importance of mediums like the internet and social media in allowing Autistics to communicate and interact on our own terms, referencing Jim Sinclair's extensive history of the development of Autism Network International and the annual Autreat, and returning to describe the rise of the Autistic Self Advocacy Network in 2006.

Following Paula's presentation was Hope Block, board member of TASH New England and the Autism National Committee. Hope prepared a statement in advance that her iPod, which serves as an augmentative communication device, "read" aloud for her. In her statement, she explained the stigma and prejudice she faces as a non-speaking woman with autism by being presumed retarded and incompetent.

(Hope fluctuates between person-first and identity-first language, but prefers person-first. Those of you who read this blog frequently probably know that I stand very firmly in support of identity-first language, but I always respect others' wishes.)

Hope Block

Hope, who was unable to communicate with others until she was in her twenties, was placed in a sheltered workshop program, where she was put into a "back room" for participants who were unable to complete the regularly assigned task and treated in a particularly demeaning manner based on presumptions about her intelligence and abilities. She explained that her mother was able to remove her from the sheltered workshop and secure placement in a community-based program where she is able to be more independent.

But the most heart-wrenching part of Hope's presentation was the "reading" of a letter jointly composed by herself and her fiancé, Jacob Pratt, who is also a non-speaking person with autism. Hope lives and receives services in Rhode Island. Jacob lives and receives services in Connecticut. Though engaged, they cannot marry without risking losing eligibility for all of their supports and services. What is "the right even of life-sentenced criminals" is something that Hope and Jacob cannot have due to the current legal structures preventing them from achieving full self-determination.

(I was reminded of the fight against the Judge Rotenberg Center, the only institution in the United States that still electric shocks people with developmental disabilities and behavior problems. What is illegal and prosecutable to do to one's own children, students in the classroom, animals, convicted criminals, terror suspects, or even Guantánamo detainees is allowed to continue in the name of treatment.)

Autistic Self Advocacy Network founder and Obama appointee Ari Ne'eman began his presentation after a brief break for food. He opened with an anecdote describing a Midwestern university's decision several decades ago to integrate women faculty into the departments of the hard sciences -- physics, chemistry, biology, and the like. When the university administrators realized that the science building only had men's bathrooms (because there was obviously no need for women's bathrooms in the science building) and calculated the cost of converting some of those restrooms into women's bathrooms, they decided that "integration was too expensive."

Today, having both men's and women's bathrooms in a building is considered standard, Ari said, but at the time, it was viewed as an accommodation -- a form of going above and beyond the standard.

Ari Ne'eman -- Is it just me, or does he look way too happy in this picture?

Earlier, Ari commented that many popular TV series have what he terms "Very Special Episode Syndrome," in which, "the show contracts a disabled character for one or two episodes" before cleanly disposing of that character, with the disabled person "returning to the institution or special school where he or she presumably belongs, and the main characters learning a very valuable lesson."

The final presenter was Kerima Çevik, mother of a non-speaking young Autistic son and legislative advocate in Maryland. Kerima, who belongs to five minority groups, began her presentation by firmly declaring that she believes in the social model. "These beliefs came to me naturally," said Kerima, who continued to describe meeting other parents who believe that they are doing what is best for their children but who are actually hurting their children, infringing on their civil rights, and denying them voices. Her son is a self-advocate, Kerima said.

Kerima and her two siblings were the first three African American children to integrate an all-white elementary school in Illinois. Kerima continued by retelling a story often repeated throughout elementary school -- at least it was in Massachusetts, where I'm from. She told the story of Ruby Bridges, who at six years old was volunteered by her mother to the NAACP to be the first African American child to integrate the New Orleans schools.

"People pelted her with tomatoes, shouted racial slurs at her, wrote racial slurs on the walls she walked by as she walked to school. Four federal agents, at President Eisenhower's orders, went with her to school. Her mother could not make that walk with her."

Melody Latimer (left) and Kerima Çevik (right) -- This is one of those cell phone pictures, hence the grainy quality. Fun fact: I cropped myself and a third friend from this picture. :)

Artist Norman Rockwell made a courageous decision when he chose to resign his post at the Sunday Evening Post so that he could stop painting African Americans solely in positions of servitude. He took a position withLook, and painted The Problem We All Live With, depicting Ruby with "two federal agents walking in front of her and two federal agents behind her. There is a racial slur on the wall behind her." Rockwell's decision transformed him from being a bystander, said Kerima, into becoming an ally.

"I have a gift for all of you here, and it's on the back table," said Kerima, indicating the table in the back of the room where I'd placed copies of various literature for distribution. She adapted Dr. John Raible's "Checklist for allies against racism" into a "Checklist for Allies Against Ableism" targeted specifically for non-Autistics like herself who wish to be allies of the autism rights movement.

Of all of the panelists, I was glad that Kerima spoke last. (She was originally to be second-to-last, but she and Ari arbitrarily changed the speaking order halfway through the event.) Her presentation tied the idea of a civil rights perspective on autism and the struggles facing the Autistic community most closely to the civil rights struggles that other traditionally marginalized and underrepresented communities have faced. Kerima's son is very lucky to have her as his mother.

From left to right: Paula C. Durbin-Westby, Melody Latimer, Ari Ne'eman, Kerima Çevik, and Hope Block. (I took this picture with my phone, so I guess phone pictures can sometimes be decent quality.)

Following each of the presentations, questions ranged from asking about amusing things that Paula's son has said recently to requesting a distinction between the social and disability models of autism and to questioning the assumption that Autistics perceived as "high-functioning" have no legitimacy to address issues facing those perceived as "low-functioning."

"I'm pro-gay marriage," said one member of the audience, "but I'm very disturbed when people talk about the LGBTQ civil rights movement as the last great civil rights movement."

The autism rights movement draws directly from the disability rights movement, which has existed for far longer than the publicity afforded what is incorrectly termed a "new" movement. As Paula explained earlier, the Autism Network International rose in the early 1990s with Jim Sinclair. And Ari expounded on the history of the disability rights movement writ large in a talk last week at the D.C. Developmental Disabilities Awareness Month Celebration, where he named such leading figures as Ed Roberts and Judy Heumann, whose names are omitted from most elementary history lessons as surely as those of Martin Luther King Jr. and Susan B. Anthony are included and repeated.

The conversation about disability was already stirring at Georgetown with the creation and growth of Diversability, the student-led disability awareness organization, three years ago. My hope is that that conversation will expand to include critical engagement of the issues facing the developmentally disabled and Autistic communities as well as transition from mere awareness of disability to acceptance of those with disabilities, and from acceptance to full inclusion and meaningful engagement.


In addition to the five panelists at the event, I asked six people to write brief position papers on further topics, including one person who authored a critique of the civil rights model (last link.) I cannot provide further materials from the panelists (yet.) Here are links to online copies of the materials that I do have available.


  1. Thank you Lydia for recapping last night. I clearly missed an incredible event that carried such important message and information. I was very happy to see this morning you provided this post and the position papers of the panelists. Thank you again for being you.

  2. Wish I had been there as well; it sounds like a wonderfully informative event. I hope this particular post goes "viral", I certainly will do my best to spread it around... echoing the previous commenter in thanking you both for organizing the event and reporting on it so cogently.

  3. Same. Didn't realize you were in DC area--just started following! Will keep closer watch on your events so I can attend next time. I'll post on twitter too to help spread the word.

    1. If you're on Facebook, that's generally where I post information about events and not to Autistic Hoya.

  4. Thank you for the detailed recap. What a great group of people. Thanks for making this happen.


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