“Please try to remember that what they believe, as well as what they do and cause you to endure, does not testify to your inferiority but to their inhumanity and fear.” ~ James Baldwin from The Fire Next Time
If there is one thing I want my Autistic child to know, it is this idea written by James Baldwin. He was writing about race, but his words apply to any who have been on the receiving end of prejudice.
I think about my father a great deal. A proud, athletic man who broke his back in a horse back riding accident which eventually forced him to rely on a wheelchair to get around. My father used to call me every Sunday. We would chat about things that interested him, the weather, his garden, his cat, the dogs, the horses. He would ask me about what I was working on. He was tremendously supportive of my career. I was battling my own demons, demons of my own making, but demons never-the-less that I rarely discussed. I would ask him how he was, but he would always answer, “I’m still here.” I knew that I would have to call my mother to learn about his physical well-being if I wanted anything more in depth. He never complained.
One day I told him I was tired of him always saying he was fine, I really wanted to know how he was. I wanted him to tell me the truth. He said, “You want me to tell you about the constant pain I’m in? You want me to tell you about how my bodily functions are slowing down and what that’s like? Is that what you really want to know?” I remember pausing for a second and feeling confused. And then felt terrible for my hesitation. What I really wanted was for him to be fine. I wanted him to be happy and energetic and well. I wanted him to feel good and he did not. He did not feel happy and energetic. He was in pain. Physical and emotional pain and a lot of it. At the time I wanted to be the one who would change his circumstances. I wanted to be able to make him better. I wanted to save him from his pain. But I couldn’t. I couldn’t.
When my daughter tells me she wishes there was a cure for autism, I feel that same stab of pain. This is the price of our inhumanity. I think how society and my past actions have done this to her. All those people, the media, the articles, the doctors, the therapists who spoke of her neurology as a terrible thing, a neurology that is not understood, that most see as inferior. And I blame myself for having bought into this belief for so many years. The idea that if I could just find the right pill, the right bio-medical intervention, the right therapy, we would successfully alter her brain and make it so she could talk and have conversations with us, so she could learn to “pass” if she wanted to, so that she’d at least have that option if she chose it, despite the devastating price she would have to pay to achieve this. So that she’d have a chance.
But she couldn’t achieve this goal and I learned to stop asking her to. I found other methods, not therapies, not treatments, but rather ways to teach her, ways to work with her specific neurology, and I keep practicing these methods because I have seen how others who created them and have trained in using them are able to converse with her through writing. While I do all that, I keep telling her and showing her that she is loved and of value. She is worthy and perfectly imperfect and deserves to be treated kindly and as the intelligent, sensitive, talented human being that she is. She has as much right to be in this world as anyone else. She is equal to her peers not less. Being indistinguishable is not a goal.
My daughter’s neurology is not inferior. Those who believe this are wrong. My daughter is no more inferior than I am. She has challenges, they may feel at times insurmountable to her, but we as a society can make her challenges easier. It is our inability to lessen her challenges that is at fault, not her neurology. It is our responsibility to challenge our views, to call each other out when we see injustices being done, to treat each other with the same respect and care we would have others treat us. We must never give up. We must never allow ourselves to fall into lethargy or the false believe that we are better than anyone else. We are not. We are human. Imperfect. We need each other. We need to push each other to do better. We can do better. We must do better for our children, for this world, for all humanity.
Jen at Down Wit Dat is doing a blog hop. It is open to all blogs in the disability and special needs communities: self-advocates, allies, parent advocates, and others are encouraged to share posts.
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“My daughter’s neurology is not inferior. Those who believe this are wrong. My daughter is no more inferior than I am. She has challenges, they may feel at times insurmountable to her, but we as a society can make her challenges easier. It is our inability to lessen her challenges that is at fault, not her neurology. It is our responsibility to challenge our views, to call each other out when we see injustices being done, to treat each other with the same respect and care we would have others treat us. We must never give up.”
((Ariane)) Absolutely! At the heart of all you are doing is the honouring of your daughter, and others, who may process and experience the world differently. Please keep writing and shifting the world, even a little corner of it, and so will I, and with others we can/must/will pull together our perhaps small movements to make a tremendous difference. ♥
Thank you Leah. Sending you love…
Oh and congratulations to you and H. for such a terrific presentation! Sounded wonderful!!
Another wonderful, strong argument for equality and an end to prejudice. I’m sure that continuing to advocate for this will make a difference. Thank you.
Thank you Ben, I hope so.
Thank you Kristin.
Ariane- I use your blog to stay inspired as I work with all types of children on the Autistic Spectrum and one of my own boys has severe dyslexic characteristics. We are talking about civil rights here, always.
You and your family are living the change by example. You promote honest conversation and investigation. You talk about interventions that are doing damage because they are overused on a child and then backfire. Last night I watched the video of the 14 year-old girl from Michigan whose treatment is currently captured on her mom’s blog: The Status Woe. The family is in a terrible situation but my point is that at this research institute in Michigan there are three interventionists who cannot contain the girl safely, and their approach is like a set-up, a trap for the girl. There’s a grown and two grown women who have super long hair, untied, and they move around and away from the girl so tentatively, if I were her, I’d pull their hair too. How frustrating to be oppressed by such ineptness. How intrusive to be dominated by people you have no relationship with and how unfortunate for the mother to not have had role models along the way to help her develop a deep, meaningful relationship with her daughter. A relationship where they would both feel known by each other and not feel like sources of disappointment for each other. Anyway, I keep tuning in and thank you.
Diana – it is really sad what is being done to so many of our kids in the name of therapy. The stories are everywhere. But strangely, until I began digging, I didn’t hear about them, or if I did, I didn’t recognize them for what they were.
So glad you keep checking back. Thank you so much for reaching out and leaving this comment here. I appreciate it.
Fabulous post. Your opening quote gave me pause… it is certainly something I want my child to know as well.
Thank you for sharing this post in our blog hop. x
Jen! So glad to have been a part of it and thank you so much for organizing it. Just wish wordpress allowed for everyone’s posts to show up on here instead of having to click on that linkey thingey. But what a great round up of posts! Really great 🙂
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