Autistic people spoke.
At least two of them did. They spoke on our behalf, eloquently and without drama or hyperbole.
Michael John Carley and Ari Ne’eman spoke about, to and for us, autistics. Not only about one group of autistics, but about all autistics. Because, in the end, we all need and want the same things: respect, acceptance, inclusion and support/services.
The Congressional Hearing was about the Federal Response to the Rising Rates of Autism. Several people were invited to talk about us. As it is sadly the practice, no one from our community was considered worth of listening to. But, as we have learnt, we must not be silenced. As a result of our protest, Michael J. Carley, from GRASP, and Ari Ne’eman, fromASAN, received the late invitation.
And that made all the difference.
The first part of the hearing was a sad demonstration of the lack of respect towards autistics. It was also a sad example of how words do matter. They can hurt and they show how much we need to educate the public about what autism is.
- Autism is not a disease.
- We don’t “suffer” from this “disease.”
- Vaccines do not cause autism. Neither does thiremosal.
- In the 1930’s autistics were not so visible, not because they were few, but because they were warehoused away from society, with different diagnosis. We cannot count what we cannot see.
- There is no correlation, nor causation, between “so many vaccines” we Americans have, and the high mortality rate in the US. That was very confusing. Autism does not kill.
- Autistic adults need services and those are lacking. The one member of the committee interested in our lives was shut down, her very important questions unanswered.
But the lack of respect continued:
- Autism turned a congressman’s grandson into a “messy situation.”
- We are a serious “health crises”, a “disaster.”
- We are “afflicted” with this “devastating” disorder and our families have a very hard time finding gluten-free food because reading labels is such a burden.
Burden. This word.
A burden for the families.
A burden for the government.
A burden on society.
A burden on the future.
Then we were tragedies, tsunamis, another health crises.
We are “an epidemic.”
And back to being a burden.
We were often referred to as “these people” who need “a life.”
This person here has a life.
It sounds funny, but it also hurt. If you are not autistic, make a list of a few words that are hurtful to you and imagine being described as such words for three hours, even though you know you are not the description given to you. It hurts.
The hearing was about the government response to autism. Most of the conversation, up to this point, was about causes and vaccines. For almost three hours we were compared to all that is ill in society. Many of us were saddened, but not surprised.
Some at the table began to talk about things that matter to us. Scott Badesch, from the Autism Society, talked about services. Bradley McGarry, from Mercyhurst University, talked about education. The future.
Then it was time for the autistics to speak.
Michael John pointed out the obvious, lost amidst the “tragedy” talk: that we need to focus on the present and on how to make it possible for all autistics to be accepted by our society.
He rightfully talked about tone and language that do much damage to our self-esteem. We need positive approaches because we are not a bag of deficits. Michael did not pretend that autism is, often times, complicated. As someone on the spectrum, he was probably hurt by the same words that hurt me and he let the ones who used those words know it:
“Such negative self-imagery makes self-esteem so much harder to achieve for an individual who is at a psychological disadvantage enough as it is. We have to remember that the vast majority of this population can read what is being written about them, and hear what is being said about them.”
Things were starting to change.
It was Ari’s turn. As we knew he would, Ari was very eloquent. He mentioned autistic women and what concerns us the most. He mentioned the under-diagnosed minorities. He mentioned the ones like me, who want to be heard, even though we don’t/can’t speak. He talked how AAC devices can bring more people to the conversation.
Ari showed how we can be productive, but find ourselves trapped between two bad choices we face when looking for support and services. He talked about the need for Medicaid and how it is not economically wise to continue with certain practices towards autistics and disabled people in general. And he showed how important government is in supporting us, the disabled, with our goal of inclusion.
Then, the most important statement.
“The challenges society currently faces in integrating and supporting Autistic people and our families are not new. We have faced these challenges and made tremendous progress with other disability groups in the past. I believe that at the end of the day this is a civil rights issue. I believe in the ability of the United States of America to guarantee the civil rights of all of its citizens. Autistic people want and deserve the same things that anyone else wants – inclusion in our communities, the opportunity to go to school and get a good job, the chance to make our voices heard about the things that matter to us.”
Yes, Autism Rights equals Civil Rights. After all the hurtful words, the words to lift us up!
Listening to the two autistics expressing so many of my own feelings, made me very proud. I will keep the texts of their testimony forever. It was one of those moments that, as Ari pointed out, are slow to come by, but when they do, everything changes. I believe this was an important moment. Autistic people spoke. Two this time. Hopefully more in the future. Thank you Michael and Ari!
Some of us have been speaking through blogs and conferences. But now it is official, and our case was presented in front of policy makers. No debates about who deserves more, who is “high-functioning,” who is “low-functioning,” no pity, no sorrow. Only one request: opportunity for all. That’s our civil rights moment.
It is now on the record: the beginning of the conversation of how our country will move on the policies concerning autism. The first step was to sit at the table and be heard, even when some words were so hurtful. There is no turning back, no one will be speaking for us anymore.
We won’t let them.
I will borrow President Obama’s words:
“We are the ones we’ve been waiting for.”
Autistic people spoke.
Nothing About Us, Without Us!
About the Author, Amy Sequenzia.