A TRIBUTE TO STELLA YOUNG

She was slight of stature and made her way through life on wheels, but she was a force to be reckoned with.

 

Stella Young was a feminist, disability activist, comedian, writer, atheist, Aussie and avowed knitter. She embraced the term “crip,” turning it back on the establishment. She refused to play the role that society tried to impose on her: the cute, demure, little girl in a wheelchair.

 

Young once wrote: "I am not a snowflake. I am not a sweet, infantilizing symbol of fragility and life. I am a strong, fierce, flawed adult woman. I plan to remain that way, in life and in death."

 

Sadly, her death came all too soon. She recently passed away, suddenly and unexpectedly, at age 32.

 

Young lived with the challenges of osteogenesis imperfecta, a condition that affected her connective tissue and made her bones vulnerable to fractures. But that was hardly the thing that defined her.

 

She didn’t shy away from and the truths she knew needed to be told.

 

Young often spoke out against "the soft bigotry of low expectations" people with disabilities encounter.

 

"It speaks to this kind of assumption that people with disabilities are 'brave' because our lives are horrible and that's not true at all," said Young.

 

In a TED talk, Young referred to the trite phrases -- such as "your excuse is invalid" and "don't quit, try" – that accompany photos of disabled people online. She found them annoying, labeling them “inspiration porn.”

 

"The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, 'Well, however bad my life is, it could be worse. I could be that person.'"

 

In her TED talk, Young expressed disgust for the bromide, "The only disability in life is a bad attitude:"

 

"No amount of smiling at a flight of stairs has ever made it turn into a ramp. No amount of standing in the middle of a bookshelf and radiating a positive attitude is going to turn all those books into Braille."

 

But Young didn’t lambaste only greeting card-worthy clichés. In an open letter that she wrote to her future 80-year old self, she spoke of her struggle with disability identity and self-acceptance. 

 

“Remember those days back before you came out as a disabled woman? You used to spend a lot of energy on 'passing'. Pretending you were just like everyone else, that you didn't need any 'special treatment', that your life experience didn't mean anything in particular. It certainly didn't make you different from other people. Difference, as you knew it then, was a terrible thing. I used to think of myself in terms of who I'd be if I didn't have this pesky old disability.”

 

Thank you, Stella, for reaching out to disabled people struggling with the shame we’ve internalized from society’s devaluation of us. Thanks for your fearless advocacy. For not pulling punches with your words.

 

Stella is the Latin word for “star.” Although Stella Young has died, her ideas will burn brightly for eternity. 

ART AND DISABILITY IDENTITY, OR CRUSHING DUNG BEETLES BENEATH MY ORTHOPEDIC SHOE

Art Basel Miami 2014 is this week and naturally, art is on my mind. All year, I look forward to not only the main Basel show, but also the scores of satellite shows and gallery exhibits that have grown incredibly over the last dozen years. I always attend as many as my wallet and stamina allow.

 

Contemporary artworks most likely to draw me in address issues of identity: identity of an individual or a group or a nation. Art produced in Miami or by artists from the Magic City often deals with the identity of immigrants and refugees. At Basel, female identity or identity along the lines of sexual orientation are frequent themes.

 

But no matter where I go to view art – Miami, New York, Mexico City, London, Madrid and beyond – I find a dearth of works about disability identity. It’s not that it doesn’t exist. It simply isn’t anywhere near 20 percent of identity-themed art, 20 being the oft-cited percentage of people with disabilities in society.

 

It makes me a bit melancholy. It feels like one more confirmation of our lack of presence, of our lack of a voice. One more directive by society to either act/look/pass as non-disabled, or else go off to live in some mythical, isolated disability underworld.

 

Though I’m a writer rather than an artist, it seems like identity would be such a rich vein to mine for artists with disabilities. Just taking the stereotypes and roles that have been foisted on us and turning those back on themselves would make for provocative, edgy stuff indeed.

 

Want to disempower me with the label “wheelchair bound?” I’ll photograph myself in bondage gear, my ankles bound to this wheeled device that brings me power and freedom.

 

See me as a sorry little creature put on this Earth to make you feel better about your own troubles? I’ll paint you as dung beetle that I crush beneath my orthopedic shoe.

 

Think I sit at my window all day, looking at the world I cannot join and mourning my brokenness? I’ll make a movie that shows disability as the dominant culture, where so-called “normal” people hurl themselves down staircases in order to be accepted.

AN INCONVENIENT TRUTH (ABOUT LIFE WITH A DISABILITY)

Those without disabilities sometimes think that folks with disabilities go through life bemoaning their limitations. That we sit sad-eyed, looking out the window, hoping for something that will “make us whole.” That we pray daily for the miracle that will come along and mend our broken bodies.

 

There’s also the disability myth that we’re fixated on being able to live “normal” lives. If only we could move without a wheelchair or cane. If only we could be like them.

 

While I wouldn’t turn down the ability to climb a flight of stairs, my inability to do it doesn’t cross my mind that often. I don’t stare each day at folks walking by me and shed tears because I can’t go through life in an upright position.

 

No, far from it. But what does annoy me on a regular basis is inconvenience. I’m talking about the hassle I encounter not because of my body but because of the environment around me. Things that could be changed if our culture stopped devaluing and marginalizing people with disabilities.

 

For example, if you don’t have a disability and get into a fender bender, it’s not fun. But it simply means you rent a car to drive while your vehicle is being repaired. But if my van is in the shop, there’s no place I can go to rent a comparable one with a lift. Wheelchair-accessible taxis are very hard to come by. To get to work, I would have to use paratransit or the bus. This means an added layer of planning ahead, building in trip time and modifying my regular schedule. And until I get my van back, I probably would avoid extra trips for such unnecessary things as grocery shopping or dining out.

 

You’ve probably been web surfing at least once and come upon a website for a hip boutique hotel or quaint B&B. It may impress you so much that you begin planning a vacation around it that very day. Book airfare online and your dream trip materializes right away.

 

My husband and I love to travel, and have had our own share of dream trips. But planning takes months. The vast majority – upwards of 95 percent – of hotels, inns and villas we find online are out of the question for a wheelchair user. Even the ones that are suitable require trading numerous emails and calls back and forth to confirm the accessible room with a roll-in shower. Now imagine the time it takes to also confirm access to restaurants, shops, theaters, etc. and nailing down accessible transportation to get there.

 

If, as a culture, we demanded that people with disabilities have the same opportunities as everyone else, then we could craft a world that included accessible rental vans and taxis. A built environment in which all structures were open to all people. A world that automatically includes everyone.

 

I don’t sit around bemoaning my “brokenness” because I’m not broken. Rather, I grow irritable with added layers of hassle and inconvenience at every turn. And the icing on this reeking heap of inconvenience is that it’s unnecessary and preventable.

STEP RIGHT UP AND ASK THE GIMP GIRL

My husband and I were in Mallory Square, gazing out at the water. We’d gathered with the rest of the crowd to enjoy the evening sunset celebration. The light splashed across the sky was changing colors minute by minute: topaz and tangerine, hot pink and periwinkle, scarlet and cinnabar. We held hands and smiled, enjoying the remaining minutes of a leisurely day spent in Key West.

Just moments before we hoped to spot the elusive green flash, a woman came up to us out of the crowd. I’d never seen her before in my life, and from the look on my husband’s face, it was clear he didn’t know her, either.

“I’ve been watching you from my window,” she said, pointing to a nearby hotel. “You’ve been standing up and also sitting in your wheelchair.”

“Huh?” I thought, startled from my reverie, then instantly realizing what was happening. She was one of those insensitive knuckleheads who felt it was her God-given right to pepper me with questions.

As if on cue, she asked me why I use a wheelchair, how long I’d been using one and why I sometimes stand and walk.

“I have arthritis and use a wheelchair to get around, but sometimes I need to stand and stretch,” I replied, hoping that would satisfy her curiosity and she would turn around and depart.

She did not. She’d gotten her foot in the door, and burst forth with another round of highly personal questions about my disability.

My face flushed hot and for an instant, I mentally debated – but rejected – the idea of kicking her in the shins. Instead, I quietly turned away from her and back toward the water. Mercifully, she got the message and walked away.

The light on the water was still breathtaking, but the magic was gone.  I was shaking with anger but unsure of whom I was angrier with: my interrogator or myself for even answering one of her questions. My husband was equally disgusted. But we didn’t want to end the day on a sour note, so we shook it off.

The next day when I was more introspective and less irate, I thought about what had happened. It was hardly the first time that a total stranger had treated me this way, yet it left me just as puzzled.

Why do some otherwise normal people think it’s OK to behave so brazenly? Why do they see folks with disabilities as a sort of “community property,” as walking or rolling encyclopedias they can demand answers from whenever they please? Why is this sort of behavior acceptable to them, yet they would be appalled – and justifiably so – at the thought of asking an African American they’d never met before intimate questions about his or her racial identity or experiences with bigotry.

Some people just don’t get it, and they probably never will. So I’ve resolved to respond the following way to the next dolt who dares to interrogate me:

“Which STDs have you had?  Why is your credit score so low? When are you going to take off a few pounds?”

When I see a flabbergasted expression and hear nothing but crickets, I’ll wrap it up this way:

“Are you shocked by such intimate questions from a complete stranger? Now you know how I feel.”