It is my turn to talk about identity. I want to write about it because I know who I am and I am the one who decides how I identify myself.
And I am Autistic.
Many other Autistics wrote about why they prefer identity-first language. Autism is all-pervasive, it cannot be separated from me; I did not “get” autism and I cannot “lose” it; I am Autistic in the same way I am a white female. I was born with these identities and I was born Autistic. My neurology shapes my interaction with the world.
As it was explained several times, no one can make a neurology go away. It is part of how my way of processing experiences shaped me. It is why I write this. It is why I have the friends I do. It is why I communicate the way I do. It is why I live my life the way I do.
Nobody says I am a person with femaleness. Nobody calls me I person with whiteness.
I want to say that I speak for myself concerning my neurology and how I communicate.
I want to say that if you want to show the benefits of AAC, you should ask AAC users and not their parents or self-important “experts”.
I want to say that you might have chosen to forget that AAC gives me a voice you cannot ignore but I will not be silenced.
I want to say that, once again, you are wrong. AAC does not make me look more “normal”. I am not your definition of normal. I don’t want to be what you call normal. I am, and will always be, a proud Autistic, very distinguishable from my peers.
I watched a video about AAC changing lives of non-speaking Autistics. It sounded great and the title - I Want to Say - seemed to indicate that our voices, the voices of Autistics who type to communicate, would be the main focus.
My first alert signal came when I saw the Autism Speaks logo associated with the video. It turns out that the video is part of a project – Hacking Autism – which is also an Autism Speaks project.
But I did not have to know this to feel disappointed. In the first few minutes of the video, Autism Speaks’ favorite statement: “more children will be diagnosed with autism than AIDS, diabetes and cancer combined."
The comparison is not real, since autism is not a disease and nobody dies of autism (unless one of us is murdered for being Autistic – it happens).
I want to talk about Autism Acceptance again. I want to talk about Autism Acceptance because soon we will be, again, referred to as tragedies, burdens, afflictions. This will go on, more than usual, for the whole month of April.
April is the month chosen by non-autistics to raise “awareness” about our existence. But most of the conversation does not include us, autistics, and the outcomes of such conversations do not improve our lives.
Autism “Awareness” Month is a frustrating and sad month for Autistics, because it excludes us, while portraying us in a negative way.
It has become a “war cry” for advocacy organizations. But it has become damaging to us.
There are myths and misconceptions that get talked over and over without our voices to educate the public:
I have written about my year in autism self-advocacy. I have a lot to celebrate and a lot to be thankful for. I think 2012 was a year of great accomplishments for our community, despite moments of deep sadness, moments of fear and moments of injustice toward us.
Some days were so sad, many of us could barely keep breathing.
Autistics continue to be murdered by family members, only because they are autistics.
Others are still abused, neglected, denied life saving measures and dying, sometimes because they cannot, or will not, speak.
The Judge Rotenberg Center (JRC) continues to defend the shock “treatment” on disabled people as if this is not torture.
Autistics are still the go-to diagnosis when uninformed and biased people try to justify mass murder.
“Science” continues to come up with absurd theories for causes of autism, while being lazy about research for improvements in our quality of life.
Schools are still denying inclusion to disabled students who are eager to learn.
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, from ASAN, received the late invitation.
Non-speaking Autistic Advocate Speaks about Myths Surrounding Disability and Independence
Written by Amy Sequenzia
Throughout my life I heard comments about how difficult everything would be for me, how I would never be independent, or have an independent life. If I could grow up to live independently, I would prove that my life had value. If the perception was that I would become an adult who could not live independently, that would prove that I was too damaged, that my life would never be fulfilling.
It was said that my future would be very bleak because of the many needs I have, because I communicate in a different way, because I cannot take care of myself.
I have written about how functioning labels are not helpful, how they help perpetuate myths and how labels don’t really tell our stories.
I wrote from the perspective of someone who was labeled “low-functioning”; someone who has been called “retarded,” “too severe,” “without human dignity."
Some autistics who are labeled “high-functioning” also wrote about how such label is unhelpful in their lives and how their struggles are dismissed, ignored and rarely acknowledged.
Why does it seem like very few people are listening?
Many autistics use the blogosphere to self-advocate. Part of this is a rebuttal to messages that we see as damaging to all autistics. Messages like some articles about the “science” behind studies - like the one stating that autistics are not capable of romantic relationships; messages of pity and fear, propagated by advocacy organizations; the disregard for our lives when one of us is murdered; and the constant talk of a cure.