Amythest Schaber is quickly becoming one of my heros. She is incredible, Autistic, and well spoken. Even cooler, she is from my province and there is a remote chance that one day I might actually get to meet her and thank her. Yesterday I had the chance finally to watch her keynote address, The Celebration of Autism, at the Richmond Autism Resource Fair 2015. I knew it would be good. It’s long, 21 minutes, so I had to wait until I had time to watch and listen undisturbed, but it is incredible. If you would, if you could, please watch it.
I want especially to share some of what she said with you, as it resonated so strongly with me.
You have to watch out for tolerance. It’s not love or understanding that most of us learn for people who are different, it’s tolerance. Not how to accept, but how to put-up-with. There is no love in tolerance. Tolerance is inequality. Tolerance says, “Who you are is different and wrong, but I, as the right majority, will conditionally allow your unpleasant existence to go on”.
It’s important because I have been raised on tolerance. I have been educated with tolerance. Tolerance is so tricky and it is wrong. I have taught in classrooms where I worked with tolerance as part of my foundation. It was out of ignorance and misunderstanding, not because that is what I wanted to do. Tolerance looks at what is wrong with a person, their situation, their behaviours, their choices, and looks away. It doesn’t understand, care for, or love anyone.
For many, the concept of Autism acceptance is a stretch out of their bubble of privilege that they are not willing to make. The thought of accepting Autistic people exactly where we are, as we are, disabled and human, challenges and joys alike, is too much. They are too deeply entrenched in the culture of cure and its panic-perpetuating tragedy rhetoric. To these people, to these people who try in vain to separate the person from the neurotype, to cut out the Autism, to mould a non-autistic child from an autistic one- the idea of accepting Autistic people as we are is outlandish to them. To these people then, to celebrate Autistic people, and even Autism as a neurotype, is disturbing…
The celebration of Autism transcends the shadows of ableism and the silence of tolerance. Celebration pulls first-person autistic experience and joy into the limelight. The celebration of Autism is the most powerful tool we have to hold back the dark of indignity, and to spread our message. In a world dark with pity, fear, and hatred for people with disabilities, celebration gets people’s attention. Celebration is radical.
This is radical. And I can see it. Celebrating with Jake when he is celebrating is enough to convince me. There are a few things here that I haven’t written about on this blog before that I want to address quickly. First is ableism. This is the idea that being disabled or able-bodied is somehow a difference that should be exploited, the same way that sexism, racism, or ageism separate humans into classes that have different worth. It is a term that I had never encountered before I dove into Autistic culture and started reading. Certainly, I have been guilty of ableism. Learning about it is opening my eyes to the prejudice that exists, even within myself.
The other thing is this idea of changing an Autistic child into on that blends in, that is non-Autistic in any noticeable way. It is an idea that is entrenched, promoted, and wrestled with in Autistic writing. I am now firmly in the camp of ‘that’s a terrible idea,’ with the caveat that any strategies that help Jake cope and succeed are worth learning and fighting for. The motivation always needs to be his happiness, esteem, and personhood, not my comfort or embarrassment.
To many of us, our disabilities are vital and intrinsic parts of ourselves, of our identities, the importance and meaningfulness of which cannot be denied. For many of us, disability is as an important aspect of our self as our race, religion, nationality, gender, or sexual orientation. But for too many people, disability is the last holdout of shame, of intolerance, of outright hate. Some of those people are disabled themselves and have internalized a lifetime of ableism.
I do not, nor will I ever, expose Jake to the public as a disabled person. I do not want to hold him up as inspirational, nor do I want to embarrass him. However, his struggles are real and if or when he wants to share them, I will support and stand beside him. Right now, my motivation is to help change culture and tolerance into something more meaningful; acceptance and a truly inclusive culture. Difference and disabilities are real, and they continue to be a source of bullying and negative self esteem, as well as the scary list Schaber has put together. Dissolving these ideas in the public will make Jake’s future brighter and safer.
I am amazed, when I find people who should be like me, who are also parenting incredible Autistic children, they are quiet. We talk quietly, about things that are a struggle and things that we have in common. We don’t talk about ableism, about neurodivergence, or about acceptance. It is so strange to me and quite frustrating. There is a hesitance to say it out loud.
It is this hesitance that continues to hold up that last holdout Schaber mentions. We have to push through our fear, our cautious quiet, and actually use positive words to expose the shame, intolerance, and hate. I have a few friends who get it, who see what I’m seeing and hear what I’m saying. They are a good, safe sounding board for me. It’s a start.
Amythest Schaber’s blog is here.