Liz Jackson is an inclusive fashion designer. She was here in Austin for a SXSW panel. Yesterday Liz Jackson tweeted about a SXSW conference with the unfortunate title of “The End of Disability.”
The End of Disability? Crazy. The title sent me looking for a paper bag to hyperventilate into. I like my disability. It’s a big part of who I am, although I don’t like the term disability. I am ND—neurodiverse. ADHD, and dyslexic. Just the thought of ending disability conjures up images of spotless Orwellian labs of the future where everyone different is normalized. A big part of my novel, The Love Letters of Abelard and Lily is devoted to the for-now sci fi question of: What if we could “fix” ND people? (also love—hello, love letters!) I’m not anti-science and technology, but I do want everyone who reads my novel to think about what it means to medicalize difference.
And who exactly decides what is normal, both physically and neurologically?
Doctors? The school system? The workplace?
One of the conference participants got on twitter and asked us not to judge. I wanted to give him a chance. I thought about getting in my car and driving the approximately three miles to the conference center and watching all the panels about disability and difference. I could also go see some day shows, something I usually do during SXSW. I got out of bed went to get dressed and realized that I couldn’t go.
I can’t walk right now.
I used to play guitar. It got harder and harder to play, and I went to see a doctor. She took an X-ray of my left hand and told me I didn’t have any cartilage left in my thumb joint. That was the end of playing guitar. I can’t complain because now I write, and I’m much more successful as a writer than I was as a guitarist.
But I like to think that my left thumb was an aberration and once I had surgery on my thumb everything in my life would return to normal forever and ever. End of story. But that’s not true.
MY right thumb is going bad. So is my right knee and my right hip, and my left foot and a vertebrae or two. None of this is getting any better and most of my joints will certainly get worse.
So yesterday, I lay in bed watching Liz Jackson’s Ted talk about inclusive design. And the first thing I noticed was that she has a really bad-ass cane. It’s beautiful.
And I remembered that I have my mother’s cane in my closet. ( my mother had degenerative arthritis too. Hereditary. ) It is not a bad-ass cane. It has one of those putty beige, shipped-from-some-Sovie-block-country-in-1977 rubber feet. My mother’s cane is ugly. But it was there.
I got the cane and I went searching for the great New York Guitarist Yonatan Gat. Since I can no longer play guitar, one of my greatest joys in life is watching a great guitarist shred, generally at SXSW. Wata of Boris. J. Mascis.
Yonatan Gat wasn’t At the Hotel Vegas yet, ( thank you, ADHD for my inability to read a schedule!) but I did get to see a good band from LA called Winter.
And I learned that a cane is not a concession. It’s a tool. I’m used to wearing mydisability— my difference of the inside and this was a new experience for me.
On one hand, people are helpful and don’t just assume you are being an asshole which is generally what happens when you have an ADHD moment in public.
On the other hand—pity. It’s not fun to wear.
Nor is this standard issue medical device.
I just wish my cane were not so ugly.