I blog regularly for two websites and anyone can find my mini biography on those sites. Until recently, my bio said “Autistic self-advocate”. I changed that to the more comprehensive “Autistic Activist”.
First, I am still a self-advocate. I do pay attention to what affects me personally and I exercise self-advocacy everyday. What I do not believe is in a so-called self-advocacy group where the main voice and the ideas come from a non-autistic person.
I do think that we all should participate and get involved with the autistic movement. We should all do some activism. We also should exercise self-determination.
I changed how I refer to myself because what I do is no longer only about me. It is about my community and about future generations of Autistics.
It is true that I have written a lot about myself and my life. But there are many reasons for that. I want to show that labeling people and pitying them is the same as locking them in a metaphorical institution. Presumption of incompetence is denying a person’s growth. Everybody has something to say.
When I write about my experiences, I am being an activist, sometimes being attacked by parents who prefer to see their children as sick, tragic and lost. I try to show that I was, sometimes still am, a lot like their children. This is activism and it is not always easy because I end up disclosing more about myself than I would prefer.
But by doing this, I might have helped change how some other Autistics are perceived. My activism paid off, it made a difference in some autistic lives.
Activism became a very important part of my life. I don’t move easily. Going places to protest can be complicated and overwhelming to me. But I have a lot to say and I write. I pay attention to what is happening and I let my voice be heard. I demand to be listened.
Knowledge and increased empathy: being an activist makes me a more informed Autistic.
I am not only fighting for autistics who look a lot like me, or only for autistics that are non-speaking. I must know and understand what supports ALL my brothers and sisters want and need.
I heard some negative feedback after I wrote an article criticizing a video about autistics using AAC. My disliking of the video was because of the manipulative tone and the message. While AAC is a very important tool for all autistics, the video implied that we are a little more acceptable if we can use this tool. But we are still not good enough.
As an AAC user, I had to make a choice between praising the acknowledgement of its use in our lives (self-advocacy), or criticizing the fact that many autistics were still being labeled “tragic” (activism). I chose activism because if ALL are not included, it is not good enough.
Mentioning AAC, because it is the latest trend (a valid one), while denigrating some autistics who still struggle to be understood and grading the community is not what I call advocacy.
Being an activist means speaking up, protesting, demanding, advocating for every member of our community. We do this in our own unique way; however each one of us can.
It means being politically, culturally and socially engaged.
We can only effect change if we engage with our community, and to the larger disabled community, if we understand our place in the world. We must know where we are, how we are perceived, and what our rights are. We need to know who we are.
Because I try to be engaged, I hope I can be part of what – I am sure – are events that will be written into the history of the Autism Rights Movement. My name might or might not be remembered, but this is not the most important thing. The most important will be what we will have accomplished as activists, not anything that I might do benefiting only myself.
Activism is speaking up against abuse of Autistics (and other disabled people).
Activism is demanding justice when an Autistic (or disabled person) is murdered.
Activism disowns any “justification” for these murders. We are not “too difficult” or too “pitiful” to be better off dead. Difficulties in life cannot justify murder. Besides, these are our lives and we demand our right to live it.
Activism is educating policy makers and demanding to be heard on what affects our lives – Nothing About Us Without Us! – we should be shouting this loud and clear.
Activism is relentlessly demanding that our brothers and sisters receive proper medical treatment, the same treatment a non-autistic or non-disabled person would receive.
Activism is protesting advocacy groups that claim to speak in our behalf but that never listen to us – and often demonize and denigrate our existence.
Activism is showing up.
Activism is speaking out.
Activism is non-compliance and it is defiance when our rights are being denied.
To non-speaking Autistics like me, to the ones who need more than just a little help everyday – also like me: I hope to see more of us engaged in issues that, at first glance, don’t seem to be part of our reality.
We should be letting ourselves be seen and we should be participating more in protests (physically or virtually), we should be writing in outrage when we see injustice and abuse.
We should know more about other disabilities and what other disabled people are demanding. We are stronger together.
We should be making ourselves more visible, not allowing non-autistics to make decisions for us.
We need to not be afraid to tell parents and teachers when they dismiss their children. Some of us look incapable and we need a lot of help. Yet, we’ve accomplished much. Parents and young autistics need positive examples from us: we were once dismissed as without a future, today we are success stories.
If we sit on the sidelines and wait for individual acknowledgement only, we miss the chance to encourage more autistics still believed to be unworthy (and parents who just need some support to fully presume their children’s competence) to join us. If we do nothing, we risk going down in history as exceptions, splinter successful individuals. We need to show that our stories can be the stories of many, many more. I believe activism is what will give Autistics like me the tools to succeed.
I am an Autistic Activist and I am proud.
I am also helping to write the history of the Autism Rights Movement.
About the Author, Amy Sequenzia.