Category Archives: disability

I am so motherfucking inspirational

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Last nighb587bfb85af8480e8e4d9179574f1029-adaptive-sports-wheelchair-sportst, I was in a Fringe play, and my character was a disabled woman who has figured out how to monetize pity and guilt by going on a motivational speaking tour circuit. (It’s fun! You should see it if you’re in town.)

This morning, I was at a coffee shop with a very young and charming gentleman who was chatting with the woman in lineahead of us.

The lady assumed that I was Connor’s mom, and he straightened her out on that with enormous detail. We chatted a bit. Little boys excited about scones are delightful. She is from Galway; I have been there. We all like scones and hash browns. Tea is good.

Because I knew that I would be carrying things in both hands, I hadn’t brought my crutches. Because I was standing in line, I didn’t move as we spoke.

She left with her stuff and Connor and I got ours and I lurched with him out of the coffee shop.

He asked me to move my wheelchair from one side of the seat to the other so he wouldn’t have to get in on the busy side of the street, because he is smart AF.

I proceeded to do this.

That’s when I saw the lady who likes scones and hash browns, sitting at an outside table, staring at me with that Very Special Expression.

“You’re amazing!” she said. “Good on you!”

I took a deep, cleansing breath. “Thank you,” I said.

“No, I really mean it— you’re astounding!” she said.

I took another deep breath. “Thank. You,” I said through clenched teeth.

So she started talking to Connor. “Isn’t she wonderful? So full of life and love and verve!”

Connor looked at her blankly, and then looked at me like: “What is this weird lady going on and on about?”

I smiled widely.

“Have a good day!” I said to the woman, staggering to my door and trying to get in without leaping over it and punching her.

“I really mean it!” she said. “You are AMAZING! Good on you! Good on you!”

I could not bring myself to thank her again.

“That lady talked funny,” said Connor as I pulled out into traffic, and I don’t think he was talking about her accent.

These sorts of scenes set me off for hours afterward, and I NEVER know how to respond. When you’re disabled, the micro or macro-aggressions are often SO well-meant. Responding to them with anything but brusqueness comes across as assholedry of the highest order. She’s probably sipping her tea, imagining she made the day of some poor crippled lady by complimenting her.

But I am shaking and furious and right now feel just as helpless as she clearly thinks I am.

I prefer the assholes who demand with hostility: “What makes YOU deserve that handicapped placard?” Or who try to Jesus at me. Those ones are so much easier to deal with.

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Dear Bitter Butch: How Do I Thank Someone For an Offensive Gift?

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. . . It was a Christian/Inspirational autobiography by a woman with polio, all about how turning her life over to Jesus helped her overcome her depression and the tragedy of her affliction.

Not only had I never thought of my cerebral palsy as a tragic affliction, at the time, I was a budding Neo-Pagan witch. Mostly, though, it hurt — because it was obvious that this woman wasn’t remembering me, at all — she’d never taken the time to know me in the first place. For a dozen years, she’d been obsessing over her own fears of disability and soaking them in pity. And that book just proved it.

Still, my mother insisted I write this woman a “Thank you” letter, because it was a gift, and the woman meant well, and that’s the gracious thing to do. . .

Read the full letter and my response at BitterEmpire.com.

Strange Hobbies

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minnesota-state-fairDo you enjoy stepping directly in the path of a person in a wheelchair and then just sort of standing there vaguely?
 
Or maybe do think there’s nothing better than walking at a smooth pace and then suddenly stopping for no discernible reason, no matter who is behind you?
 
How about walking straight ahead while looking off sharply over your left shoulder directly into the path of an oncoming wheelchair?
 
You should go to the #mnstatefair. Your people are waiting for you.

In Which Other People Really Want to Help Me

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Downtown Minneapolis, where the corporations live, is a strange place. If you looked at the streets and skyways at a typical rush hour or lunchtime, you would have no idea that Minneapolis is only 40% white and has a median income of around $50K for a family. Healthy white people from the suburbs wearing very nice shoes are bustling everywhere.

And disabled people, if they live in the suburbs, do not mingle.

In my neighborhood, besides the fact that people are used to seeing me, specifically, they are also used to seeing disabled people in general. The housing is cheap enough for a person on a fixed or reduced income to have bought a few years ago and if you’re willing to live small or double up you can still find a decent apartment. We also have quite a few group homes as well as lots of public transportation (at least compared to the suburbs), with a discounted rate for disabled people — so a lot of us bus or train around.

In the suburbs and downtown, I am an anomaly.

And people — especially men who were already raised to open a door for a lady — really really really really really want to help me.

When you are a white disabled woman, the microagressions that you experience due to your disability are nearly always completely well-meant on the part of the aggressor. I feel bad even calling them aggressors because they truly are not generally hostile. Although I get a few of the strange responses and accusations of faking it that my black disabled friends get, it’s mainly well-meaning completely unwanted help.

And when I’ve written about it in the past, I’ve made able-bodied people very very very very very uncomfortable. Why is she so angry? They ask. What’s wrong with holding open a door?

The short answer is: there’s nothing wrong.

The long answer is: everywhere I turn in downtown Minneapolis, nearly every person I encounter assumes that I am helpless.

And it gets old.

This morning, I crutched toward a set of doors I have opened and closed countless times. I moved with purpose and focus and speed, with every confidence that I would manage to open the closed door I was approaching.

Through the glass door, a man saw me approaching those doors and began SPRINTING for the door. SPRINTING.

I deftly opened the door with my foot as I have done a trillion times, and he stopped short, his mouth hanging open.

“You know how to DO that!” he said.

I laughed. “I do,” I said.

That single encounter isn’t terribly upsetting. Neither are the ones with the very very nice cleaner who always HAPPENS to move to clean a door I’m heading toward so he can hold it open for me. (He’s actually funny because he narrates what he does. “It’s not that I don’t think you can open this door,” he says. “It’s just this door is SO DIRTY.”)

All so so nice. So kind. So helping.

But cumulatively, it begins to feel very infantilizing.

I’m trying to see these all as individual incidents, because that is what they are. Well-meant. Kind. And I’m trying to see it from their points of view.

Man in wheelchair about to open a door

Someone help this poor man!!!!!

When you live in an area that doesn’t have a lot of disabled people, you haven’t seen us negotiate doors and things. So you see me approaching a door with my arms encumbered and you think of what you would do in that situation as a person who always uses his arms in a certain way instead of what a disabled person with a lot of experience moving through the world with both hands occupied by crutches would do, and you panic.

OH NO SHE IS STUCK FOREVER

And so you run and open the door.

I am practicing appreciation and compassion for each moment with a big smile and a thank you, but it is starting to wear on me, I have to admit.

On assuming you know things and being happy and biking

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I posted this wonderful article on Facebook last night by The DIY Couturier: 21 Tips to Keep Your Shit Together When You’re Depressed.

It was a direct response to one of those interminable articles by happy people on how to be happy just like them (quick sum-up: it’s not luck, stunningly easy access to the upper middle class, or the blessing of well-balanced brain chemistry! Happy people are happy because they are doing things right, and if you just followed their blithely oblivious rules you’d be happy, too) titled The 21 Habits of Happy People, which I will not link to because after reading a few of them my blood began to boil AND I began to die from boredom, which is a uniquely unpleasant sensation I do not wish upon my readers. Also the stock photography was aggressively banal.

Besides the fact that these 21 alternate rules are extremely helpful and well-written and make me feel less alone in this world, I share this article because I want to talk about biking. Yes.

When people hear that I am a year-round bicyclist, I get, mainly, one of three reactions:

  1. You’re crazy! (Often followed by stammered reasons for the person’s failure to bicycle. I am not a bike nut AT you, my dear fellow on this planet; I couldn’t care less if you bike. I do not exist solely to make you feel bad about yourself.)
  2. You’re so brave! (Often followed by even more panicked reasons for the person’s failure to bicycle. If a cripple can do it, she must judge me for not doing it!)
  3. You must have something to prove. (This being Minnesota, this judgment is nearly always couched in alternate but crystal clear language.)

Oh! People are saying. I know you. I know you are crazy. I know you are brave. I know you have something to prove.

And none of these things are true.

I bike year-round because it is fun. I also bike year-round because I am depressed, anxious, and I have an autoimmune disorder. If I do not bike nearly every day, I get sick, I have a flareup, or I become a heinous bitch. I have real and rather personal reasons for bicycling every day, and if I don’t share them with every random person who asks me about the bicycle helmet in my office that’s my prerogative. Speaking out in a chosen time and place (such as this blog) to de-stigmatize mental illness is one thing, but telling someone deeply personal health information who just stopped by to borrow a stapler and wants to get defensive about my reflective vest hanging on the doorknob is another.

When I got my concussion on glare ice this winter (after writing a commentary on the joys of winter biking, ironically), someone actually said to me: “Well, I hope you learned your lesson.”

I’m sure many, many more people thought it.

The only way in which this comment makes any sense is if you are assuming, incorrectly, that you know why I bike.

Well, if you’re reading this, you now know why I ride. I ride for the OPPOSITE reasons of crazy. If I were to ‘learn a lesson’ from this concussion, it would be: do not do things that make you happy and healthy; you might get hurt! Do not fly gloriously over the frozen tundra. Do not take dance classes that make you look silly. Do not try for that job that might be a stretch. Do not write a book that digs into your deepness. Do not ever, ever fall in love.

So, no — I have not learned my lesson, and I hope I never will. Yesterday, even with a very bad head cold, I biked to work for the first time. It was glorious. Even just 25 minutes of bicycling made me start to feel myself for the first time since I fell in early February. Today, I biked again, in the rain. It is now snowing out. If the puddles have not iced over, I’m riding home again.

I bike because it makes me feel solid, sane, and whole. I am working my own 21 Tips in my own way.

Everyone you meet is fighting a hard battle, as the famous quote misattributed to Plato goes. Be kind.

You work your own tips, and I’ll work mine.