Friday, November 30, 2012

Burden, Burden, Burden: Oversight Committee, You've Made Your Point

"Burden," "burden," "burden...." "Horrible situation.." "Cost to society," like we are not part of society.  ‎"WORSE THAN AN EPIDEMIC...IT'S A DISASTER"- "Congressman Dan Burton describes autistic people: "These people are going to live for 60 or 70 years, and they are going to be a burden not only on the families, but on society itself,"  which was later re-iterated: "The people will live for some time; they will be a burden on families and society."

And my not-so-favorite "What are we going to do with these afflicted people?"

Not to mention causes of autism such as COAL, thimerosal in the air, no recognition, that, yes, there were Autistic people before there were vaccines. Twice, people, presumably Autistic people, were asked to go to the "overflow room," where they might "feel more comfortable." 

Then there are the convenient scary disease comparisons, "Autism, like breast cancer," (which autism is not "like")  "Compare the response to autism to the response to AIDS and cancer." 

You know, that kind of language hurts. Even after all this time, and I've developed a bit of a thicker skin than I used to have. I watched the hearing as long as I could before having to drive to pick up my son at school. On the way over, in the car, I felt sort of awful, even though I don't believe a word of the hype that says that I should not exist as I am. Actually, given my age, I'm said not to exist as I am anyway, but I will save the "Where are all the adult Autistics?" for another post. I do admit to yelling, in the privacy of my car, "What are we going to do with these afflicted people?" "What are we going to do with these afflicted people?" a few times. I remember Karla Fisher's recent post about how she got the promotion of a lifetime and then went to listen to someone doing stand-up impressions of Autistic people. Yeah, I know, we don't have any feelings, but.... actually we do, and I will be writing to you Oversight Committee members and reminding you to be a bit more sensitive and respectful to Autistic U.S. citizens in future.

But, my friends were hurting too. Autistics. Moms of Autistic kids. Moms of nonverbal kids. Dads. Autistic parents. The hearing went on and on and it hurt us to hear ourselves characterized so negatively, over and over (sort of echolalic on the part of the speakers).

Landon Bryce, at thAutcast, referenced the Rolling Stones:

Stop callin' me your $*&(%ing burden
I hear your words. My ears are hurtin'.
All I know is that you
Got no Respect for Me

Landon re-posted this image during the hearing. I think many of us were feeling the same way: 

Kerima Cevik, a mom of a nonverbal son and an ally:

My son deserves to be respected. He deserves to be heard. Who the hell cares what caused him to be the way he is? How are you going to help him. He is here now. He is Autistic. Damn it stop talking about what is causing shit and talk about how you will give his disability the lifespan supports needed to help him.

Ariane Zurcher, a mother and ally, said "Can we please stricken "burden" from our language when speaking of Autism and Autistic people? How is this constructive?"

Claudia Pringles said "Dear autism professionals. Please stop calling my daughter a burden, a victim, or a terrible disease."

In some conversations people agreed with each other, "It's painful." "Yes, extremely painful."

Now what?

Autistics, that's what.

GRASP. And the Autistic Self Advocacy Network.

Michael John Carley of the Greater Regional Asperger Partnership was the first Autistic to speak, breaking into a long litany of burdensome rhetoric about how we are an epidemic, the costs of us, how to prevent and cure us. He said, in part, "Tone, and language may seem like pc-nonsense semantics to many, but not to someone on the spectrum who grows up having to hear words like “cure,” “disease,” 
“defeat,” and “combat”—words that have no medical basis given the genetic component of autism (for though we may improve dramatically, we’re born with 
this and will die with this) and given the harm these words cause there is also no ethical basis for their usage." Carley's written testimony can be found here.  He also wrote a very interesting assessment of the hearing assessment of the hearing afterward.

Ari Ne'eman spoke next, giving some of the most eloquent testimony I have ever heard: 

"As Autistic children grow into Autistic adults, the research shows that racial and income disparities continue to persist. Compared to youth with other disabilities, Autistic young adults are less likely to have employment or higher education opportunities in the six years after leaving high school. At least one-third of Autistic youth have no higher education or paid employment experience after school. For African-American, Hispanic and low-income youth, the rate of unengaged youth is significantly higher. This reinforces the need for serious investment in post-secondary transition for youth with significant disabilities to try and address this gap before the upcoming generation of Autistic youth is condemned to a lifetime of social exclusion and un- and underemployment."

After Ari and Michael John spoke, the tenor of the online discussions and posts changed, from one of anger and sadness, and even despair, to one of joy and hopefulness. The hope for our community lies in the strong civil and legal rights messages given by Ne'eman, in the caveat by Carley to stop using negative language to describe us, to Ne'eman's call for research into Augmentative and Alternative Communication, to Carley's admonition to focus on the present, not on cures in the future.

These are the people who publicly give hope and meaning to the lives of people with disabilities and the people who care about them. 

After the AUTISTIC testimony, people reported feeling strengthened, that their children's needs and concerns had been accurately and respectfully addressed. Significantly, many parents of nonspeaking children wrote these comments. Both sighs of relief and expressions of renewed commitment and strength; relief from the relentless "burden" metaphors, and relief because someone finally said something of current importance for actual parents and Autistics, not "cure in the future" stuff; renewed commitment because it's hard to keep going on advocating when you think no one is listening (do note that Congresswoman  Eleanor Holmes Norton was cut off from commenting during the hearing).

NOTE: I am looking for more quotes from people who would like their reactions and comments from yesterday's hearing to be added to this blog post. I can either attribute to you or post your comment anonymously. 

Poetry by Amy Sequenzia and Alyssa Z can be found on their blogs:

"I am" by Alyssa Z on her blog Yes, That Too, begins:

I am a burden.
I am a "situation."  
Read more here.

Amy Sequenzia:

Today I was called
A health crises
A "situation"
A burden
An epidemic
A burden
A tsunami
A burden
A tragedy
A burden

"These people"
A burden.
Then John Michael Carley and Ari called me as I know myself:
A person
Autistic person who has a voice and civil rights.
And I am who I am. And proud

A Facebook page was created to deal with the upcoming (and ongoing) Autistic Tsunami Step on in, the water's fine!

Parent and ally Kerima Cevik wrote: "
 I feel a deep respect and gratitude to him as the head of an organization representing my son's people. He spoke for the entire spectrum, across gender, racial, and ethnic lines. He was eloquent and I am not young, and so have heard many people speak. Self Advocates were calmer, better prepared, less theatrical, and more informed than medical professionals, parents, and the leaders of organizations who keep demanding my money insisting that they know what is best for my son. How can they? They have never asked him, or even us. This makes the case for Autistic self determination more than any other action would. "

Both Ne'eman and Carley received numerous messages of support and gratitude thanking them for representing our community. 

Testimony that affirms our right to exist while at the same time addressing the immediate and serious concerns in our lives? Excellent. Alarmist, skewed statistics, grabbing at straws? Not so much. It needs to stop, so that funding, which was the ostensible purpose of convening a meeting of the Oversight and Government Reform Committtee. (The other purpose was to prove that vaccines cause autism.)

The entire hearing has been archived here:

THIS JUST IN: ASAN President Ari Ne’eman on C-SPAN’s Washington Journal December 1 at 9:15 AM. A dedicated number for Autistic people to call in is posted in the comments section here.

More reading material about this hearing:

TPGA Congressional Autism Hearing Recap

Emily Willingham: Autism Bingo: The Congressional Version

Inner Aspie: Speaking About #Autism- Rising Numbers and Funding

ThAutcast: Autistic Voices at and About Autism Hearing

Diary of a Mom: The Hearing 

Autism News Beat Part I    Autism News Beat Part II

Twitter's #AutismHearing feed

ASAN's Updated Statement on November 29 Hearing

Emma's Hope Book: Two Autistics Spoke. How Many Listened?

Jo Ashline: Congressional Hearing on Autism: My Son is Not a Burden

Liz Ditz: Historic Congressional Autism Hearings November 29, 2012

Radical Neurodivergence: What I Faxed to the House Committee Hearing

Raising Rebel Souls: Rebel Response to the Federal Response

Washington Post: Adults with autism tell Congress more funds needed for services

Special Ed Post: Congressional Panel Urged to Spend Less on Investigating Autism, More on Alleviating It

"Burden?" I Don't Think So. Emma's Hope Book

Karla's ASD Page: Congressional Hearing on Autism 2012

And then there was: C-SPAN

Federal Role in Support of Autism,
a prestigious Washington Journal program with a dedicated phone line for Autistic callers, thoughtful questions by the interviewer, an apparent attempt to ensure that Autistics got a chance to talk (phone answerer person asked me if I knew I was calling in on the Autistic line). Ari talked about so many things that I suggest that you watch the video. Ari covered, in a systematic and compelling way, every single issue (I think) that actually faces Autistic people, from children to adults, from people with significant disabilities to those who appear to not have all that much difficulty (and he did a great job of explaining that). He even mentioned one of my favorite organizations, Asperger Adults of Greater Washington (AAGW). If a transcript is made available I will post it here. STAY TUNED because this blog post keeps changing!


Elizabeth J. (Ibby) Grace said...

'Oversight' can grammatically relate to both 'oversee' and 'overlook.' I hope the inclusion of Autistic voices, actually useful voices, will not only continue to galvanize families (a report which I'm beside myself with delight to hear!!!!!!!) but also help the government to redress its oversights by ceasing to overlook us and our real needs and those of our families and beginning to oversee important change.

Excellent post, Paula, thanks!

Kerima said...

Paula I loved the post and am proud to be a part of it. It was moving and helpful, and summed everything up so well. Yes I have tragedy model fatigue, and didn't see it until I read your latest post. THANK YOU

Kerima said...

I did not realize how much "tragedy model fatigue" I had until I read your latest post. I brought everything together and I'm feeling better about things in part because of it. THANK YOU Paula for the way you pulled this all together. It is true, hope came out of the ashes of hopelessness.

Paula C. Durbin-Westby said...


Yesterday was a historic day for the Autistic self-advocacy movement. For the first time, we had representation at a congressional hearing on autism. Although much of yesterday’s House Committee on Oversight and Government Affairs hearing focused on the same tired old questions on causation and cure, but thanks to your efforts, we had a seat at the table to offer another perspective for the first time.

Tomorrow, we’ll have a chance to continue having our voices heard. C-SPAN’s influential morning call-in program Washington Journal has invited ASAN President Ari Ne’eman to come on the show tomorrow morning from 9:15-10 AM to discuss federal disability policy, autism acceptance and the neurodiversity movement. And we want you to be a part of it.

To participate, you can call-in, email or tweet. C-SPAN has specifically urged Autistic people to participate, and has provided a dedicated call in line to help make sure we get on the air.

Call-In Numbers:
Democrats: (202) 585-3880
Republicans: (202) 585-3881
Independents: (202) 585-3882
Autistic People: (202) 585-3883

Please follow us as we also livetweet from @autselfadvocacy with hashtag #AutismOnCSPAN.

Liz said...

As I often do, I've made a list-post of responses, including this one. I will keep adding to it as the days go by

Marc Rosen said...

Additional poetry about the discrimination our people face:

Paula C. Durbin-Westby said...

New blog post on the C-SPAN hearing: "The Optimism Epidemic: Autistics on C-SPAN."

(If you can't access it, try later; it's still in the throes of being written, and I have a migraine.)

Rebel Mommy said...

Thanks for adding my response Paula! It is an honor to be mentioned among these good people. Thank you for all your hard work.

Stephen said...

I'm totally with you on the self advocacy. But there's no link between vaccines and autism. The Wakefield study was shown as fradulent, and he's now barred from practising medicine in the UK. Rep. Dan Burton(R) has some sort of agenda, but it's not yours, and it's not reality based. If he was a promoter of citizen health, he'd be backing vaccines.

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