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nightengalesknd

June 2017

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[personal profile] nightengalesknd
My prior Blogging Against Disablism Day posts are (2006), (2007) (2008) , (2009), (2010), (2011), (2012), (2013), (2014), (2015) and (2016) on Live-Journal. This is my first year (actually my first post) on Dreamwidth

The question is so common, I often answer it before it is asked. Scripting for the win.

“Will my child ever - ?”

Talk? Talk more? Walk? Be in a regular kindergarten class? Have friends? Graduate from high school? Go to college? Live independently? Fall in love, get married, be a parent?

In very, very rare cases, some of these questions can be answered. There are a few biological conditions where one can say with certainty that a person will not be able to walk, for example. Not many, but a few.

But in most cases, the answer is “We don’t know.”

Even more importantly, the answer is, that in most cases, anyone who claims to be able to predict the future development and life of a very young child doesn’t know. Not the people who say “she will never” and not the people who say “he’ll grow out of it” or “with treatment, your child’s diagnosis will go away.”

Following the “we don’t know,” though, I say something else. Not that a disabled life can be a happy life, which is true but not something most families are ready to hear in this moment. Not, “what if your kid is asexual, which is a real thing, disabled or not, and doesn’t want to fall in love?” which is also true but is also not something most families are prepared to discuss about their two year old who was just diagnosed with autism or cerebral palsy.

No, I say, “I don’t believe your kid is finished.”

Actually, I generally use the child’s name, here. And age. And other specific details. Because it’s not just a script, it’s a conversation. “I don’t believe that Matthew* is finished. He’s two. Look what he’s already learned. I don’t know if he is going to talk more, although most kids do. But I don’t think he is finished. After all, I learn new things every day and I can keep learning. So can you. If we, as adults, can keep learning, why should we set artificial deadlines, that if he doesn’t talk by a certain age, he never will.”

*Not his real name. Unless it is. I see a lot of Matthews. And a lot of Jacobs. And Elijahs. That’s not a breach of confidentiality. It’s a statistical reality. But I don’t think I’ve said this about a Matthew in awhile, actually, so I’m going with Matthew.

Sometimes I quote a study about autistic kids who started talking between 4 and 8 years of age. Sometimes I don’t. I don’t usually bring up Einstein, but sometimes the parents do. I occasionally bring up Stephen Shore, who didn’t talk until he was 4 and has a PhD and I have heard him speak and he has authored books, etc.

It’s sticky to do this, because the “X didn’t Y until she was Z and NOW” trope is actually really ableist. I mean, it’s real, that people develop skills and abilities past the typical age, all the time. But the specific skills and abilities and traits aren’t culturally neutral. There is such a high premium placed on walking, on talking, on living independently, on romantic relationships, and in some communities, on certain levels of academic achievement, that holding these things out as possibilities or probabilities devalues the lives of people who can’t or don’t attain those goals.

But there is no way to go into all of this at the first visit nervous parents have with a new doctor.

After all, if I do my job right, they will be back for further conversations. We’re not finished.

I was fifteen when I learned how to tie my shoes. This was not for lack of people trying to teach me at a more typical age, but I didn’t have the motor planning skills or the visual processing skills, or the language to describe my visual processing and motor disabilities. All I knew is that I had tried and failed and tried again until everyone got completely frustrated, especially me. I actually didn’t learn on shoes at all. Asynchronous development being what it is, I learned to tie a lace while standing on a scaffold learning to hang theatre lights. My teacher, a girl a few years older, patiently taught me how to use the wrench and the various parts of the light. She then told me to tie the cable to the pole using a shoelace. When I asked how, she told me to tie it like a shoelace bow or half-bow. When I explained I didn’t know how to do that, she showed me a half-bow. Slowly and carefully. Two stories up in the air on a scaffolding.

And so I learned to tie shoelaces. If you had asked me at fourteen if I was ever going to be able to tie shoes, I would have shook my head and muttered something about how sad I was Velcro and buckle shoes were not readily available in my size.

Because, you see, tying shoelaces is a useful skill. It opens up a wider range of shoe options. But it is not a necessary achievement. It is not, for everyone, a possible achievement. And people who can’t tie shoes now but may be able to tie shoes later, as much as people who will never be able to tie shoes, are entitled to a range of other options, from Velcro to buckles to parents who tie shoes without comments about “isn’t it about time you. . . “ to personal care assistants, and to potential employers who do not judge applicants by the shoes they wear.

My worth, as a 5 year old and as a fourteen year old, should not ever have been judged by the fact that I couldn’t tie shoes then but would be able to learn some day.

One problem with the term, “developmental delay” is that is suggests a goal that should be met, just late rather than never.

We’ve all got a lot of ableism there to work through. I’m certainly not finished there.

Yesterday I helped run an unusual, if not unique event, a celebration of autistic community for autistic people of all ages, families and professionals. It was a party cleverly disguised as a resource fair. We borrowed a sensory gym and brought in piles of fidgets and books. In the spirit of Autreat, the first autistic run autism conference, we offered what Jim Sinclair described as “opportunity without pressure.”

Professionals from different parts of the community met for the first time and shared information. Parents got a chance to talk to each other, professionals and adult autistics. Kids climbed, assembled trains, stimmed, drew. Someone spent half an hour in the back hallway reading through a book I had suggested might help her in her work with a new client. A parent asked me for books that his child could read about autism.

One invited professional, a speech therapist demonstrating AAC programs, commented that it was good for her to see autistic adults. So much of her work is with young children that she doesn’t really have much chance to see their possible futures. I agreed. Then I handed her a book open to a chapter written by one of the adult autistics in the room running the event about the benefits of typing over talking.

I had a few minutes to speak with one of our exhibitors, from a local disability history project and I talked about my work educating other health care providers about the realities of disability. He asked if it was frustrating, and of course it is, to hear negative and stereotyped notions about disability over and over from professionals working in disability related fields.

And yet, I answered, things are changing. Often at glacially slow speed, I hear the language used by my coworkers shifting, away from function labels, away from “suffering” and “wheelchair bound.” They may not know of books written by disabled adults to share with patients, but they know they exist and to ask me for titles. They ask me to speak on the topic of advocacy.

I looked around the room, full at that point of about 40 people talking, learning or just being disabled together, at an event run by disabled adults and hosted by a children’s rehabilitation hospital.

“I don’t know if this would have been possible even five years ago, here, in this city or in this organization,” I mused.

Of course there is still a lot of work to do.

But as I often tell my families, none of us are finished.
Date: 2017-05-01 04:28 pm (UTC)

From: [personal profile] jedibl
Just wanted to let you know that I found you here! I'm glad it sounds like your event went well.
Date: 2017-06-13 03:29 am (UTC)

shehasathree: (Default)
From: [personal profile] shehasathree
Yay, you're here (on dreamwdith)! (More to the point: Hooray, I remembered to look for you on dreamwdith and here you are!)

<333
"None of us are finished". - love it!
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