William Davenport of Talk Story Films, who made the wonderful documentary "Too Sane for This World", has made a new film called "Citizen Autistic", about the autism rights movement. Its featured subjects include Ari Ne'eman, Zoe Gross, Robyn Steward-- and me! I love the way I come across in this movie and the fact that I get to talk about thAutcast in it. Lots of people have ideas about Ari being some kind of fire-breathing radical, but he's a wonderfully sweet, smart guy who cares about all kinds of people, and you really get to see that here. Zoe is one the emerging leaders in autism advocacy, whose contribution to a meeting with President Obama is a highlight of the film. Others are a meeting of AASCEND in San Francisco and Robyn Steward's dissection of an Autism Speaks walk. Robyn works with autistic people like herself.
The film is nearly finished, and you can see the current version above. You can also donate to help distribute the film. This is a movie we really want shown in film festivals, and the entry fees can cost thousands of dollars. Please watch and please donate if you can.
I share this message from Ari Ne'man and The Autistic Self Advocay Network with you with Ari's permission.
Last May, I and other advocates crashed a party – a twitter party, to be exact. USA Today had put together a live twitter chat with the nation’s “top experts” on autism – a group that notably excluded any actual Autistic people. Unimpressed, the live chat was crashed by a few dozen Autistic adults who did a great job communicating that old time “Nothing About Us, Without Us!” spirit. Liz Szabo, the USA Today medical reporter moderating the live chat, responded fairly well, apologizing and making sure that self-advocate participants were included after all. Later that day, I got a very nice e-mail from her, promising to learn the lesson about self-advocate inclusion for the future. Mission accomplished, right?
Well, perhaps not so much. Today, USA Today ran a front page feature by Liz Szabo on mental health policy, encompassing 3,024 words over three articles and including color photos, infographics and an extensive table analyzing mental health policies across the nation. What it did not include, shockingly, was the voice of a single person with a psychiatric disability. Given the topic – one article uncritically makes the case that involuntary commitment laws must be strengthened and expanded – this is a serious flaw and one that is undeserving of a newspaper of USA Today’s national stature.
The rationale behind an error like this is baffling, to say the least. It seems hardly credible that the author could not locate a single disabled person. One understands the pressures faced by modern journalists in these times of newsroom cutbacks, but surely they can do better than this. Furthermore, the failure to speak or present the opinions of a single opponent to the expansion of civil commitment laws is unbelievable, given the stakes. Does USA Today believe that expanding institutionalization and forced treatment is so uncontroversial as to not deserve the presentation of both sides? What possible explanation could be offered for such shoddy work?
Regrettably, the problem extends beyond Szabo and USA Today, both of whom have good intentions. Most journalists reporting on disability issues today come from backgrounds in health or medicine, where the working assumption is that physicians should drive the conversation and little difference should exist between parent and self-advocate perspectives. For many in the media, reporting the voices of those most directly impacted is an afterthought, too often forgot about in the rush to meet a deadline. This outlook has real and practical consequences.
In the aftermath of the unspeakable tragedy in Newtown, the news media plays a disproportionate role in shaping the public conversation. Policymakers and the general public look to newspapers to help determine practical solutions to challenges like gun violence. When journalists ignore the communities they are charged with reporting on, we all lose an opportunity to become better educated on the issues that face our country. Beyond that, ill-advised policy solutions are uncritically promoted without thought to their unintended consequences.
This is not journalism. USA Today’s readership and the public at large deserve better. As the media continues to stoke public fears about disabled people in the aftermath of Newtown, it falls to us in the disability rights movement to make sure that they get the message. Just as our community speaks up when Autistic people are left out of conversations about autism, we should be speaking up when other groups of disabled people are excluded from conversations in which they should play a major role. In the words of our nation’s founding father, Benjamin Franklin, “We must all hang together – or we will sure hang separately.”
Annoyed? Angry? Don’t just sit there and take it – do something! Here are some options:
- Tweet your concerns to Liz Szabo, the USA Today journalist who wrote the mental health pieces, at @LizSzabo – use the hashtag #aboutwithout so we can track your interest. Be polite in your comments – but be heard!
- Send USA Today a Letter to the Editor by e-mailing firstname.lastname@example.org. Include your name, address and daytime and evening phone numbers (if you cannot use the phone, note this and provide an e-mail address that you check frequently). The newspaper’s website notes that letters of 200 words or less have the highest likelihood of being accepted.
- E-mail Brent Jones, USA Today’s Public Editor, with your concerns about lack of self-advocate representation email@example.com.
Henry Frost recently won the right to attend his neighborhood school rather than a special school for students with disabilities. Today, in a moving post for The Autistic Self Advocacy Network, Henry discusses how important it is for autistic kids like him to be with their peers:
I did not read about a person who liked being in a separate school away from their friends learning cooking for life skills for living. Reading is living. Learning history is living.
Some parents and schools think separate is ok. If they listen to us they will understand it is not. We want to learn the same things. We are not so different.
Henry's post is also about the importance of role models. He was inspired by the stars of the movie Wretches and Jabberers:
I did not know about inclusion and advocacy before my friends Tracy Thresher and Larry Bissonette. It was cool to meet guys that communicate like I do. They opened the door for hopeful times of freedom.
And by ASAN's president Ari Ne'eman:
Last year I started reading about inclusion and found out about Ari Ne’eman. I read about his high school time. It was hard. He also did not like being at a segregated school.
I met Ari at the Autism Summer Institute. I wrote to him about my school and he understood. He helped me advocate for my rights. ASAN helped with the petition. He is also autistic. He is also my friend.
According to some parents of autistic children, it is never legitimate for autistic people to say anything about autism. Because "real" autistic people are nonverbal. like their kids, so anyone who can speak does not understand what "real" autism is. It is not surprising that some people who fall into this group would feel the need to release the video above, which suggests that screaming, naked children should have been part of last week's congressional hearing on the federal response to autism.
But-- there is no demand that autistic people shut up. In fact, the maker of the video even claims to admire Ari Ne'eman of the Autistic Self Advocacy Network.
This is progress. When Ari was nominated by President Obama to the National Council on Disabilities, his confirmation was anonymously held up for months. Age of Autism tried to keep him from serving. A petition to try to keep him off the Council was signed by over 750 people, and is still getting new signatures.
Sure-- we still have comments, like this one on the video from John Best, that suggest that Ari Is Evil:
Ari Ne'eman is a degenerate liar. ? Nobody in their right mind admires anything at all about this sadistic pig. Every word out of this liar's mouth is designed to do one thing, obfuscate the truth about the true abject horror of what autism really is.
But-- even the people who think vaccines cause autism are getting used to the idea that autistic people are going to have something to say about our lives, whether they like it or not.
A year ago, "Autism Every Day" was the top video when you searched for autism on YouTube.
Yesterday the House Committee on Oversight and Government Reform held a hearing on the federal government's response to autism. Although originally no autistic people were called as witnesses, GRASP's Michael John Carley and ASAN's Ari Ne'eman both spoke eloquently. You can see them speak in the video here. You can download Michael's testimony as a PDF here and Ari's here.
Amy Sequenzia wrote this poem about the hearing, which I got her permission to publish here:
Today I was called
A health crises
Then Michael John Carley and Ari Ne'eman called me as I know myself:
Autistic person who has a voice and civil rights.
And I am who I am. And proud
Yes That That Too offers another poetic take:
I am no mistake.
I am no new difference.
I do not come from coal.
I do not come from vaccines.
No conspiracy made me- I was always here.
Read the rest here.