Wednesday, October 30, 2013

Ableism is alive and well in the medical community

Last week Oliver and I drove three and a half hours to a city in our region for his twice yearly appointment with a developmental pediatrician. I really like this doctor for a lot of reasons. She is thoughtful in her approach to medicine. She is always available to me by e-mail or phone. And I know that she cares about Oliver. However, I also really dislike that we have to drive such a great distance to see her and incur the extra cost of gas and an overnight stay.

We started traveling there a few years ago when we decided to see if medication might help Oliver manage his anxiety. There are local doctors who could have helped us but medication is enough of a trial and error game that I wanted to ensure our doctor had lots of experience managing medication for autistic clients. I got what I was looking for and feel lucky to have this doctor on our team.

BUT.

But, she's a doctor and that influences how she sees things.

And even though I really like her as a person, I don't always like her point of view.

A few words from her once put me in a downward spiral of depression. Maybe she thought she was being kind when she gently told me that maybe I shouldn't expect much from Oliver in life, or for his future. She works with many families and, I suppose, she sees that the real challenges of autism can sometimes be insurmountable.

But I didn't want to hear that. I still don't.  I worry as much as any parent but I have to put my effort into thinking about the present. I have to keep believing that he will go as far as he is able and that the future is not yet written. If I don't believe this how can I tell Oliver to keep trying when things seem insurmountable?

Still, this appointment was the first since Oliver had started to type in July. I was eager for him to show off his brilliant new ability to communicate. I was eager to give her a reason to revise her opinion about what is possible when someone is so greatly challenged by autism.

He typed a few things for her. He concisely explained how one of his medications made him feel. He answered a few questions for her and at the end of the appointment he asked a very poignant question of his own. She laughed it off at first -- I think it took her by surprise -- so he then added a sentence of clarification and she gave him a direct, appropriate answer.  It was a wonderful exchange and I was so proud of him.

And then she turned to me and asked if I had given any thought to signing up for the Intellectual Disability waiver.

What?

"He doesn't have an intellectual disability. He has autism." And then, to quote Larry Bissonette of Wretches and Jabberers fame, I added: "His disability is of experience, not intellect."

I wanted to add a few expletives. And also list his accomplishments: He taught himself to read and write. He has never spelled a word wrong. He has a photographic memory, can explain the big bang theory, and how gravity makes time relative. He taught himself math and can do algebraic functions in his head. He found a way to communicate despite all the odds against him.

If he could speak no one would think to suggest that he had an intellectual disability. If you or I could list these as our own accomplishments we'd call ourselves goddamn rock stars.

Her report, which we received a week later, contained this sentence: His mother perceives Oliver to be smart and feels an intellectual disability is not an appropriate description of his potential.

Damn straight, doctor.  He's a non-speaking, autistic rock star.

And I think he's going to change the world.

I know because he's already changed mine.




7 comments:

  1. I'm sorry Christine. It sounds like the doctor doesn't really see Oliver -- even now with his ability to communicate so clearly. You are both rock stars in my book.

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  2. Christine, that's appalling. And from your description it sounds like Oliver was right there when she said it. What was she thinking?!

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  3. Yes, it is appalling. I am wrestling with this. I've thought over and over about finding a new MD but like her so much. I kind of feel like we owe it to her and her other patients like Oliver to stay and keep making our point.

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  4. Serious rock stars, both of you. Educate the hell out of her. As John has taken to saying to me: "F is for Frustrated." xo

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  5. F is for Frustrated is my new favorite saying!!

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  6. Benedikta12:11 PM

    Equating non-verbal communication with intellectual disability seems very immature and stupid. Your son is obviously smarter, much smarter, than most of us. Perhaps you could ask your doctor if Oliver and she could exchange a few emails so she could get to know him better? It seems she needs to make a mental leap of how she perceives non-verbal people. I would go with your guts - if you really like her, give her a chance. Every doctor has a blind spot (well, most have many huge blind spots) and this one is hers.

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  7. Thank you Benedikta for commenting! I love comments and meeting new people!! And yes, I think you are right about the blind spots. We all have them, don't we? And it's so gratifying when you help someone expand their thinking about what is possible in this life!!

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