Paula C. Durbin-Westby
Paula, holding my book. She provided crucial help on it.
My hero this week has been Paula C. Durbin-Westby. When I was figuring out how to begin to respond to the tragedy that happened last Friday, she sent me a message suggesting that I make an image of my autistic characters crying. I wasn't sure I wanted to share that with the world-- is a cartoon really an appropriate response to a massacre? But I decided to make the picture, and share it at least with her.
And something happened that had also happened when I asked Paula to give me some suggestions on my book I Love Being My Own Autistic Self. She just understands some of the autism advocacy stuff better than I do. She's been doing it longer, and she understands levels of things that I do not. Her ideas take me to places I would not go on my own. I could not say with words what Paula got me to say with this picture-- Marko, downcast and in the shadows, Vector's sad and wide-eyed shock, Ramikin's sorrowful, reproachful gaze. Maybe it's bad taste, but it's what I feel and it's what I had to say.
Getting this last week right-- saying the right things, not too much-- has been important to me. If I've done okay, it's because Paula has provided a touchstone.
This is not about us.
But we have to respond.
That's what I've tried to say, and what Paula has been saying all week. I'm grateful for her guidance, and grateful that she has been sharing her wisdom more widely.
She was quoted by The Washington Post:
“The way the media said it, it was like ‘that explains it, that’s why,’” said Paula Durbin-Westby, a mother in Louisa, Va., who has autism and blogged about this issue over the weekend . “I was going to write something about feeling grief over the whole shooting. I didn’t want to talk about the Asperger’s thing because I wanted to respect and honor the victims.
“I don’t think anything could be worse for the families in that community, and I didn’t want to focus attention away from that. But then I thought about the autistic adults and children I know. . . so many nice, gentle, loving people, and how they’re going to get labeled like this, and I just had to say something.”
Paula also appeared on television. Click here to watch.
And always read her blog.
Paula C. Durbin-Westby is an autistic woman who sometimes does not speak and sometimes sings, beautifully.
Sometimes I talk, sometimes I don't. And, sometimes (not always), I sing. I have always been fairly shy about singing, and that's a long story. I did not take any voice lessons until I was in my 30s, and that was partly because someone told me I would never be able to train my voice to sound good (I believe the exact expression was "too old"). Thank you, person who said that, because I love a challenge. Now I am 53 and my voice is what it is. This is the only recording of me in existence, and it's not great, but I am posting it because 1. I want to. 2. I might not be able to record another until spring if I lose my voice like I usually do this time of year (I tend to get laryngitis from Thanksgiving weekend until mid-February).
"If you want us to include you when we talk about autism,
you have to stop asking so autistic."
(thAutoons book I Love Being My Own Autistic Self
now available for sale.)
Next Thursday, November 29, the House Congressional Oversight Committee is holding a hearing on the federal response to autism. Unfortunately, no autistic people have been called as witnesses. Fortunately, there are things you can do to make this situation better.
1. If you can, please attend the hearing. It is taking place in the Rayburn House Office Building at 2:00 pm. The Autistic Self Advocacy Network is rallying in front of the building at 11:00 am. If you cannot attend in person, the hearing is being streamed live here.
2. Please sign this petition, also from ASAN, which asks that autistic people be included as witnesses.
3. Please submit your own written testimony and contact your Representative in Congress.
You can fax your own testimony to (202)225-2974. Dr. Matthew Carey has created a form that allows you send a fax.
Dr. Carey also suggests some things that you might include:
1) We need focus on improving the quality of life of Autistics
2) While not all Autistics can self-advocate, if we are going to have autism organizations represented, we need to have Autistic-run organizations represented.
3) Autism is a very broad spectrum, all with challenges of some sort. The government’s response needs to be broad (read-larger than it is now) in order to encompass all the needs of these communities.
4) The vaccine-epidemic hypothesis has been very damaging to the autism communities. Please don’t allow this meeting to be a way around the science in order to keep that idea alive.
5) There are faux therapies in common use for autism. Many are harmless. Some are dangerous and based on incredibly poor science. We need to get accurate information out about these practices.
Emily Willingham recently wrote about things that autistic people want from science, which are pretty much the same things many of us think the government should invest it. You might want to look at that article in terms of suggesting priorities.
Thanks to Paula C. Durbin-Westby, who is responding passionately to this situation.
Ariane Zurcher continues her conversation with Paula C. Durbin-Westby, an autistic woman who sometimes does not speak:
I have read more than one author who opines that without language there is no thought. Nothing could be farther from the truth. Language includes both written and spoken words, as well as picture-based communication systems like PECS. Not talking (and also not writing) does not equate with "not being able to think," "being lost in an unknown world" or anything other than specifically not being able to talk. For some people it could mean a lack of focus on the present moment (how many people are fully present in each moment anyway?) or not being able to think in words, which is another one of my reasons for not talking. But it is not, generally speaking, accurate to assume that because a person can't talk, they can't think. You wouldn't look at someone who has a tracheostomy tube and go "Oh wow. That person can't think!"
"Conversation is okay. But friendship is better."
Paula C. Durbin-Westby's recent blog post and accompanying video about trying to talk and being unable to are important, and might be very helpful to neurotypical people who wonder what being autistic is like:
For me, not being able to speak does not always coincide with "social anxiety." I was at home, with only the dogs around. No social anxiety. I also was a bit tired all day because I had insomnia the night before, which made me less likely to be able to talk. I only have so much energy. Various things precipitate my not being able to speak: being tired, being overloaded, trying to talk when other people are talking too fast over me, reading or seeing something disturbing. Or, in the case of yesterday, because I was not speaking to anyone but working at the computer, I was "not used to talking anymore" and so had trouble getting started again. It does not take more than half a day of not talking for whatever reason before I need to sort of urge myself to take it up again.
I have had only rare episodes in my life when I have completely unable to speak. There was a period of about two years during college when I was under a great deal of stress and would sometines completely lose speech. I had nightmares for years after this in which I would pick up the phone and be unable to form words. More often, my speech simply gets less sophisticated as I get tired. I become more reliant on scripts, am less likely to find the words I want to use, and interrupt myself frequently with lengthy and confusing pauses.
Some of you may have noticed that I've been in a less verbal period lately. Writing is often very difficult for me, and I've been expressing myself in pictures a lot of the times instead. Some people have liked this, some have hated it. I don't know to what extent others have been aware that it is an adaptation that I have made because of my own limitations with words.