I’ve been writing articles about autism for April, “Autism Awareness Month”, for 6 years now. That sounds like a lot in some ways, but compared to how long other autistic activists have been writing, it’s not much. Yet, I’m already tired of it. I mean, if you’d been saying the same thing and seen hardly a speck of change after 6 years, you’d feel discouraged too. If you’d been trying to make your voice heard for that long but were still hearing the same predictable rhetoric over and over, answering the same questions over and over, don’t you think you’d be tired of it?
I wonder sometimes how long it will take. How many times do I, and the many others I know, need to say it before people hear us. I know, I know, there are some people who have heard. But there are so many more who stubbornly choose to go with the dominant message.
How many times and ways do we have to say that our lives are not tragic? That we do not want to be seen as burdens? That we are happy as we are and don’t want to be fixed or cured? That if you will look with eyes that value diversity, you will see our worth?
How many times do we have to ask for the people who wish to sell our stories as pity porn in order to attract fundraising dollars, to stop and instead let us speak for ourselves about our lives and what we need to live well?
How many more Aprils will pass before I don’t feel like the media coverage about autism makes me want to crawl into a hole and hide for the whole month?
How long until “Autism Awareness Month” focusses on the voices of Autistic people?
How long until being Autistic in April is not something Autistic people dread?
The problem with “Autism Awareness Month”
Autistic people have the same rights as all other people. Awareness campaigns, such as those run through April, don’t really help us to move toward a world in which those rights are acknowledged. We won’t “solve the problem of autism” by fundraising for organisations run by non autistic people so they can help us in ways they determine we need help.
The problem with “Autism Awareness Month” is that until it focusses on the words of Autistic people, it will continue to spread untrue and damaging rhetoric. Until the focus is on acceptance of Autistic people and acceptance of diversity, we aren’t making progress or actually helping Autistic people at all.
What can we do better?
We can improve the lives of Autistic people by
- listening to them when they share information about their lives.
- believing what they say.
- acting on the requests they make for support.
Sadly, most people are not willing to hear this message. So, the temptation to hide away this month is strong. Being Autistic in Autism Awareness Month is hard. I won’t hide, though.
When I made the decision to publicly identify as Autistic, I made it knowing that there would be hard times like this. I knew that people would see me differently. I knew people would treat me in ways that would be uncomfortable for me. When I made the decision to publicly identify as Autistic, I made another decision too. I decided to be proud of who I am.
So this April, just like the rest of the year, I will live my life. I will live it well. I won’t make apologies for being who I am. I am not a tragedy, I am not a burden. I will continue to ask for the support and help I need, when I need it. And I will continue to remind people that awareness is not what I need. Acceptance of me, my Autistic community, and diversity in society, are the only ways to make sure I, my family and friends are truly helped to live better lives.