Comment

The End of Disability?

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. 

 

Comment

Comment

Neuro-diversity and the Tyranny of the Hug

I spent February in Connecticut with my brother, and his wife, and playing with their two adorable toddlers, Di-di and Buddy. But mostly, I went to write.  Connecticut in the dead of a long winter is a peaceful wonderland of nothing happening. It’s snowy and tranquil.  Nothing to do but write.

    I returned to Austin on a plane fighting an uncharacteristically lax jet stream, twenty minutes early.   As I stood by the luggage carousel waiting for my oversized suitcase to drop down the shoot, I saw my Henry’s broad shoulders appear in front of the screen advertising arriving flights. He didn't see me.

    It gave me time to gather my thoughts. I reminded myself that I should hug Henry.  It seemed like the right thing to do. I’d been gone for a month, after all. I have to remind myself to do this. Henry is a hugger.  I’m not. It isn’t in my nature. I’m twitchy and awkward, and I always feel like I’m doing it wrong.

    Henry turned and I held my arms out, the international airport symbol for feel free to hug me now.  And he hugged me, which is better.  He’s good at hugging.

    “You’re back,”  he said.  “I wasn’t sure you’d return.”

    “Of course I came back. We have children and a mortgage,”  I replied.  “Also, I missed you terribly.”

    I probably should have lead with “I missed you terribly”.  Even though I write romance novels, romantic speech does not come easily to me.  

    “Well you never know,”  he said.

    “Yes, you do,”  I replied.  “You have plenty of empirical evidence to support the likelihood of my return.”

    “You’re like the Dread Pirate Roberts of relationships," he said.  "Good night Henry.  Good work.  Sleep well.  I’ll most likely leave you in the morning.”

    Me: the Dread Pirate Roberts of relationships.  I don’t suppose the Dread Pirate Roberts was much of a hugger either.

***        

    Austin has an all-woman a cappella group entirely devoted to singing the works of Hildegard of Bingen.  Hildegard de Bingen, in case you were wondering, was twelfth century abbess who wrote philosophical and religious tracts and a great deal of music. She was a renaissance woman several hundred years before the actual Renaissance, and several hundred years more before woman were allowed to imagine doing a bunch of crazy things like writing music and treatises.  Hildegard is my hero. 

    Of course I wanted to sing in an all woman choir devoted the works of Hildegard de Bingen!  Who wouldn’t want to do that?

    I came to my first rehearsal absolutely out of my mind with excitement.  But before we got to singing, we broke into small groups of five or six to “share our triumphs and sorrows of the day, to commune and hug it out.”

    Up until the moment we broke into small groups, I’d had a pretty good day.  I was stoked to sing Hildegard De Bingens’s music. But whatever good had gone before was totally subsumed in blistering rush of anxiety I feltat the impending hug-fest.  When it was my turn to share, five very nice woman asked me what was bothering me, since I was just shy of hyperventilating.  

    I could hardly say “I don’t want to touch any of you. Please don’t hug me.”

    I made something up, some terrible personal trauma, and I got through the hugging.  

    I never went back.  

    What about singing medieval music says share your innermost feelings and hug random strangers?
  

 This was a while ago.  The phrase “neuro-diverse" hadn’t hit the public consciousness.  And I feel a little bad that I didn’t have that particular bit of language in my arsenal.  Those very nice woman, who shared my love of Hildegarde De Bingen, would have understood, if I’d said:

“I’m ND, and I don’t like to hug, and sharing my feelings is difficult too. Do what feels right to you, and I’ll join you for the singing.”

I've spent a good deal of my life with my hands at my side, hoping to god that  people wouldn't hug me.  But being honest and upfront about  my ND hug awkwardness has feed me from my hug fear.  I'm much more okay with being hugged. I no longer expect hugging to feel like a perfectly soulful expression of togetherness. I know my hugs are awkward and I don't care.  Hug away, if that’s what you like.

 

 

 

 

Comment

Valentine's Day-- A Neurodiverse love story.

Comment

Valentine's Day-- A Neurodiverse love story.

Henry spent the fall working on a red MG sports car outside the window of my bedroom. He wore a thin white t-shirt and looked for all the world like a blond Marlon Brando from  Streetcar Named Desire. ( see attached picture. Rather than post a picture of Henry and embarrass him, I have included Marlon Brando.  Enjoy).

Comment

My ADHD holiday season-- the Tarantino edition

1 Comment

My ADHD holiday season-- the Tarantino edition

    It’s a truism that there are as many different kinds of neuro-diversity  as there are neuro-diverse people, yet there is one  thing that unites us all.

    Holidays are hard for us. I have yet to meet anyone ND who doesn’t have a disastrous childhood holiday story.  

      Mine happened when was when I was thirteen.  I wanted to make snow ice cream in the blender.  My mom said I could if I hurried, and cleaned up after myself.  My grandparents were due to arrive at any moment.

1 Comment

Comment

ADHD and the Election

    One of the best things about being ADHD is that I don’t have to unfriend people on Facebook or twitter. All I have to do is lose my phone.  It happens all the time.  And it’s great.  I recommend losing your phone every couple of weeks or so.

Comment

Graveyards and the hidden history of Neurodifference

Comment

Graveyards and the hidden history of Neurodifference

I’m on vacation in Connecticut.  It’s fall, just before Halloween.  The leaves are amazing. It’s the perfect time to visit an apple orchard or a graveyard.

    I love graveyards. If books hold the collected history of important people, graveyard hold the history of just about everyone else.

Comment

1 Comment

Linda

 It’s Friday. My best friend Bob is in Port Aransas on the gulf coast with the ashes of his recently deceased girlfriend Linda. Bob asked me to go with him,  and I wanted to, but I had so many things to do, and then of course I didn’t.  I have trouble leaving the house sometimes.  To be fair, Bob didn’t tell me he was planning on scattering Linda’s ashes.

1 Comment