nothing about us without us

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Ed note: Yesterday, I sent the following letter to Autism Speaks Co-Founder Suzanne Wright, President Liz Feld and three others. I added the links this morning for your reference. 

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Dear Suzanne, Liz, et al,

I hope this finds you all well.

I was thrilled to read yesterday that the House Oversight and Government Reform Committee has scheduled a hearing on the federal response to autism on November 29th. I eagerly read the Autism Speaks press release stating that “the committee, chaired by Rep. Darrell Issa (R-CA), will hear from panels of government experts, as well as advocates, including Autism Speaks Co-founder Bob Wright.”

The issues that the committee will address, including the allocation of government resources for ASD and a review of research and treatment options for those on the spectrum are vital to my daughter’s – and our nation’s – future and deserve our urgent attention. I was thrilled that they would be discussed and debated by those with the power to affect change on a governmental level. Until I read ASAN President Ari Ne’eman’s reaction on Thautcast.

“We’re profoundly disappointed that the House Majority has once again decided to convene a hearing without the voices of the community impacted. Less than a year after the famous contraceptive hearing without women, the House Committee on Oversight and Government Reform will be convening a hearing on autism without any Autistic witnesses. ASAN condemns this kind of exclusion and urges the House leadership to include the voices of the organized Autistic self-advocate community.”

I realized that I’d made the dangerous – and inaccurate – assumption that “advocates” included “self-advocates”.

It seems that it didn’t.

The very people who have the most to contribute to the conversation – and upon whom it will have the most effect – are apparently excluded from it. Again.

In August, I wrote the following in response to Congressman Todd Akin (R-MO) comments regarding pregnancy from rape.

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“It seems to be,” he said, “first of all, from what I understand from doctors, [pregnancy from rape is] really rare. If it’s a legitimate rape, the female body has ways to try to shut the whole thing down.”

How is it possible that the people who would decide our fate – who would make laws about our bodies and how we care for them, what our insurance can and can’t cover and who would set priorities for massive amounts of research dollars and healthcare subsides – have so little understanding of who we are?

Legitimate rape? The man said, ‘legitimate rape.’

This scared me. It really, truly scared me.

Yesterday, President Obama said that Akin’s comments “underscore why we shouldn’t have a bunch of politicians, the majority of whom are men, making health care decisions on behalf of women.”

And that was when it hit me.

Last week, I had a pretty deep conversation with Liz Feld, the President of Autism Speaks. We were talking about the words that we use. About how we discuss autism in the public forum. About how difficult it can be to create a balanced perception of such a broad spectrum. About how we need to fight for help for the disabling aspects of autism while steering clear of demonizing it in order to do that. About how difficult it can be to set research priorities for such a wide array of people.

We had gotten into some of the nitty-gritty. I was explaining why a particular term was problematic and I said that I’d heard self-advocates condemn its use. She asked what they would prefer that we use. She really wanted to know how to better frame it. In context, the question came out, “So what do they want?”

It took me four days to answer the question. I finally wrote the following.

The other day, you asked me what they (self-advocates) want. I don’t know if you caught it – but I was somewhat stymied by the question. And it’s bothered me ever since. I wondered if I couldn’t answer it because perhaps I just didn’t have the handle on this that I thought I did.

But then I had a revelation.

I can’t answer the question because I’m not the one of whom it should be asked. They are.

What they want is representation. What they want is to be included in the decision-making process. What they want is for us to stop asking *each other* what they want.

What they want is to not be the “they” in this conversation but the US.

That’s the answer to your question. 

xo

J

I am grateful that Liz has begun the process of reaching out to self-advocates. I am hopeful that through her conversations, the gap can be bridged, changes will be made and that when Autism Speaks it will be autistic voices that we hear.

Because after yesterday – watching a group of men in sharp suits argue in the public forum about what MY body can and can’t do and what I should or should not do with it, while it’s still not the same, I get it more than ever.

**

We MUST do better.

As the largest and most powerful autism advocacy organization in the world, Autism Speaks has a responsibility to lead the way. Not just to speak for the community, but to ensure that the community has the opportunity to speak for itself. Isn’t that what we’re fighting for after all? A seat at the table for our loved ones? For everyone?

Please, urge Congressman Issa and his colleagues on the committee to include the voices and perspectives of those whose fates they will debate on November 29th.

It’s unconscionable not to. Because it’s long past time for them to be the “US” in this conversation.

Sincerely,

Jess

www.adiaryofamom.wordpress.com

**

If you are so inclined, please click HERE and copy the text below to send directly to Congressman Issa.

Dear Congressman Issa,

I was thrilled to read yesterday that the House Oversight and Government Reform Committee has scheduled a hearing on the federal response to autism on November 29th. I greatly appreciate the committee’s time and attention on this vital issue. 

However, it came to my attention that the hearing’s invitees do not appear to include any autistic witnesses. Undeniably, it is autistic people who not only have the most to contribute to the conversation, but also upon whom the committee’s recommendations will have the most effect. While parent and medical perspectives are certainly important, without the autistic perspective, the conversation is woefully incomplete. 

I implore you and the committee to invite autistic self-advocates to contribute their testimony on behalf of the autistic community. 

Thank you,

[your name]

**

A list of the House Committee on Oversight and Government Reform members can be found HEREincluding links to each member’s website.

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20 thoughts on “nothing about us without us

  1. Thank you for keeping us informed on these important issues. I sent an email to Rep. Issa. I really hope self-advocates are included, I don’t understand why they would be excluded. Thanks again.

  2. Always hold their feet to the fire as you did so expertly here. The light of day often causes people to move to the right solutions. The renewed administration is talking about more inclusion and so should Autism Speaks. The agenda is that of the people and not the politics of the organization. Sometimes we have to hold our own to the fire lest they lose their way. I wouldn’t want to ever be on the wrong side of your pen.
    Love you,
    Dad

  3. One, it is not an exaggeration to call Autism Speaks’ activities as fraudulent. Calling them an advocacy group is ignorant at best. No matter what we say to them, we can count on them to try to stuff words into our mouths. Forcefully, if need be.

    Second, adults can be autistic too. (I am looking at some of the commenters.) Nothing about us without us? Bah. It should be nothing about us unless it is FROM us, so far as I am concerned after reading some parents mistaking it yet again for being about them.

    Finally, the goal of a place at the table for the autistic is not compatible with allowing Autism Speaks to continue existing. Look at the manner in which they behave and tell me I am wrong.

  4. Pingback: A rare opportunity: a congressional autism hearing « Left Brain Right Brain

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