From Ableist to Self Advocate

Amy Sequenzia, AWN Contributing WriterI was once an ableist. And I was my own target.

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.”

I absorbed all these concepts and lived my life just like the doctors, the teachers, the experts in developmental disabilities and, by extension, my parents expected. My newly found voice was to be used to show the world how terrible, devastating, exhausting and tragic autism was.

It was very confusing to me. My parents loved me so much and there was so much I wanted to say to them. But every time there was a hint of despair in what I typed because that was the expectation. I had to be feeling the burden of “having autism.”

So I did what was expected of me. I typed about the awfulness of autism. I buried the pride of being able to type my unique, original and intelligent thoughts and I played the role I was given. And part of me believed in that role.

Sometimes I typed about my dreams and how my brain worked so fast; about how I was smart and how the other kids did not want to play with me. But in the end of my statements, I blamed myself, and autism, for these frustrations. I typed that I wanted to be cured, that autism was “hell.” That’s what I was hearing from everyone.

I became the “very smart girl, poor little girl, so needy and with so many issues. If only she did not have autism.” I accepted this definition and I became my own obstacle.

At the time it seemed to be the right thing to say. My parents and other people who loved and believed in me were told they should be invested in “saving” me and all the other kids “suffering from autism” from a life without a future. We needed to be fixed before it was too late. I kept typing these myths.

I must say that I don’t blame my parents or anyone in my life that, I know, loved me deeply. They were acting on information they got from the so-called experts. They wanted and fought for the best education I could get. But the fear was present in every advocacy meeting, every flier and it was spreading fast in the celebrity world. And how to resist celebrities trying to “save” all those children?

I was happy having found my voice, I was finally talking to my parents but when the subject was autism, it was almost as if I should not be too happy: children “with autism” didn’t have a shot at happiness. All the propaganda was working: my parents and I could not see how I would have a future if a cure for autism could not be found.

My self-esteem was low, not because of autism but because of the way autism was – and still is – portrayed. Those lines were blurred in my head.

As I grew up the conversation about autism became about the epidemic of autism, the urgent need to “fix us before families were completely devastated by this horrible fate.”

To make things worse, autistic kids were growing up without a good education or proper services. For autistics like me, non-speaking and with many needs, things were probably worse. We were often deemed too severe for mainstream schools or for a productive life. I believed in that and continued to devalue myself by typing how sad autism made me feel.

So, when did things change? I think I started to change when I went to a conference and met a group of autistic and FC users that were advocating for their rights. At the same time, people close to me were listening and paying attention to what I had to say, questioning me about different topics and I started typing short poems. When I said that I hoped to be more like those autistics, I was heard and taken seriously. Autism was no longer a tragedy in my life because I had a goal and being autistic was central to that goal. I wanted to be valued as I am, without having to pretend I had certain abilities or that I could hide my disabilities (I couldn’t have done it anyways).

People around me became supporters of my newfound self worth. It was hard to achieve this goal, it was a slow process. I still participated in “autism awareness walks”, not fully grasping that the organizing groups were not accepting of who I was, of who I am. It is still hard to keep my head up all the time. Sometimes I sense the approach of my low self-esteem, I begin to have thoughts of unworthiness, but this does not happen as often anymore. And today I have my community of autistic friends who support me and neurotypical allies who accept me. Maybe that’s why it is important for me to say that “I am autistic” instead of “I have autism.”

I am proud of my identity and of my community. I don’t “have” something that makes me who I am. I simply am.


About the Author, Amy Sequenzia.