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.
Self-advocacy is not easy. It is true that anyone can self-advocate, even through simple actions like saying “no” to another person, or refusing to follow an imposed activity. And that’s why it can be hard to self-advocate. When we say “no”, when we refuse to do something we don’t want to do, we are said to be non-compliant.
That’s especially true for people like me, a non-speaking autistic who needs a lot of assistance with everything. It is also true for some people who live in group-homes or other facilities, where the schedule made by the staff must not be disrupted, and where individual preferences are ignored. This is ableism.
I had never before thought about my life and where I am now in these terms: from ableist to self-advocate.
It might seem strange to think that I could have sabotaged myself into saying things that diminished my life and my struggles. But I did. And I believe this is not very uncommon.
From the moment I began to type until I finally let my voice reveal my real thoughts, I typed stereotypes and misconceptions about myself, about autism, about life as an autistic.
I was a child who had just started to type and some people saw that I had intelligence to be explored. But according to pretty much everyone I was “trapped,” “suffering from this terrible impairment” and “isolated from real life” - I “had autism.”
The Autistic Rights Movement UK(ARM UK) is holding its Annual General Meeting and Conference on Saturday, June 4th 2011 at The Islington Resource Centre, 356 Holloway Road, London, N7 6PA. 1.00 p.m. for 1.30 p.m. until 5.30 p.m.
Guest speaker Ari Ne’emanPresident of the Autistic Self Advocacy Network (ASAN), Member of the US National Council on Disability (appointed by President Barack Obama) and member of the Inter-Agency Autism Coordinating Committee
AUTISM AWARENESS MONTH: NOTHING ABOUT US WITHOUT US!
Written by Elesia Ashkenazy
To some, Autism Awareness Month might mean purchasing puzzle shaped cookies at local restaurants in order to support a cure for autism. For others, it might mean participating in walks, writing letters to legislators, screening an autism-focused movie, or connecting with community members to raise positive awareness. But there are many different kinds of awareness. When I polled several Autistic self-advocates by asking, "Do you feel anything is missing in the big picture of Autism Awareness? If so, what changes would you like to see?" this is what they had to say:
Alyson Bradley in Christchurch, New Zealand:
We need national recognition. This is a hard question for me because I have autistic, mental and intellectual differences.
Diagnosed with "Atypical Development with strong autistic tendencies" Dr. Shore was viewed as "too sick" to be treated on an outpatient basis and recommended for institutionalization. Nonverbal until four, and with much help from his parents, teachers, and others, Stephen completed his doctoral dissertation at Boston University focused on matching best practice to the needs of people on the autism spectrum. Stephen presents and consults internationally on adult issues pertinent to education, relationships, employment, advocacy, and disclosure as discussed in his books Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, Ask and Tell: Self-advocacy and Disclosure for People on the Autism Spectrum, and the critically acclaimed Understanding Autism for Dummies.