BAD VACATION, Part One

 

It started out as lovely trip, a mix of business and pleasure. But it began to go oh-so-horribly wrong just as our plane was making its descent to our destination.

 

The flight attendant -- who'd seen me board with a wheelchair -- asked me if I could walk down a flight of stairs. It seems the jet bridge service we'd been promised upon landing in Miami was not available. I suppressed the urge to make a snarky reply and assured her that, no, I could not do stairs in a wheelchair.

 

No problem, my husband and I were told. A lift would be provided to take me from the plane down to the tarmac. And technically speaking, this turned out to be true. Except the lift was brought to the plane about an hour after the rest of the passengers had de-boarded and been whisked away in a bus.

 

As we waited for the lift -- and 15, then 20, then 30-plus minutes passed -- we had visions of our luggage being stolen without us there to claim it.

 

Could someone from the airline secure our bags until we deplaned, crossed the tarmac and made it into the terminal? This request provoked smiles and the response -- along with circular hand gestures -- that we shouldn't worry, because our bags would just go "round and round" until we claimed them.

 

We finally made it to the baggage carousel about 75 minutes after our plane landed. Our bags were not going "round and round." Instead, our bags were nowhere to be found. So, instead of heading to the rental car shuttle queue, we had to stand in the airline's MIA luggage queue.

 

We filed the report no traveler wants to think about, then picked up our rental car. As we drove to our hotel, we tried to find the humor in the situation. We can shake this off, we told ourselves. The airline will deliver our bags to the hotel tomorrow, and all will be right as rain.

 

I called the airline the next day and gave the customer service rep our claim number. I was put on hold. The rep came back on and asked me where we had changed planes. I assured her it had been a direct flight, from Columbus, Ohio to Miami. She insisted our luggage could not have been lost unless we had changed planes. Did we catch our connecting flight in Chicago? For a few seconds, I considered if I'd been drugged or comatose during the flight, which might explain why I had no memory of changing planes. Then I realized my husband would have to have been comatose or whacked out, too.

 

Further attempts to explain that we suspected our bags had been stolen were pointless. And given that my husband had a job interview 24 hours later -- and no appropriate clothing to wear -- we headed our car not to the beach but to an outlet mall.

 

Okay, we had faced worse situations before. Outline a strategy, then carry it out. Our bags had contained a mixture of cheap garments but a few nice pieces as well: a Joseph Abboud dress shirt, a Richard Tyler suit jacket, a Versace skirt. If the airline were to locate our stuff, we should buy only modestly-priced things we needed to get by. But if our things were lost for good, shouldn't we get high quality stuff the airline would reimburse us for? Ultimately, we decided to go the budget route. We psyched ourselves up and hit that darn outlet mall like shopping commandos. Into the discount department stores we flew; out we came with bags of clothes. Success!

 

Not so fast. My husband and I lack the ideal body types that most clothes are designed for. Our new garments needed to be hemmed. Time to improvise again! That night, when I should have been on a chaise lounge savoring my third mai tai, I spent it "hemming" our stuff with cleverly hidden safety pins.

DEAR SANTA: A WHEELCHAIR SPEEDOMETER WOULD BE NICE

Dear Santa:

 

It’s been a few years since I last wrote to you. Like, 45. Probably makes you wonder why I’m sending you this letter now.

 

First off, let me assure you I’m not writing to ask you for any gifts for myself. I mean, there are some neat-o gizmos that any gimp, myself included, would love. For example, I wouldn’t mind having a speedometer. Why, you ask? So the next time a stranger (that is, the 4,739^th stranger) looks at my chair and asks me “how fast can that thing go?” instead of yelling “bite me,” I can actually holler out a number.

 

I also wouldn’t mind receiving a pair of shoes. And I’m not talking about a pair of SAS orthopedic, turd brown lace-up Oxfords, like us crips and Denny’s waitresses are so fond of. No siree. I’m talking about a pair of Christian Louboutin Highness Tattoo Dragon platform pumps with a seven inch heel. (If you’re not familiar with Mr. Louboutin’s creations, think back to the type of shoes that only strippers used to wear. For a cool $1,595, now lady executives, lawyers and doctors can wear ‘em, too.)

 

And I wanna be clear: there’s no way on God’s green Earth I could ever stand in those shoes, let alone take a few steps. What I’d like to do is scuff up the soles real good so they look like they’ve been walked in a whole lot. I’d put them on, get in my wheelchair and go out in public. I’d be sure to sit in the chair so the bottoms of the shoes can easily be seen. Then, I’d take photos of the reactions on people’s faces. I would even create an Instagram account for them.

 

But enough about my flights of fancy. The real point of this letter is to ask for Christmas gifts for other very deserving people: people who have taken positions on issues affecting us crips. The gifts would show gratitude for their valiant efforts for disability rights.

 

• First, Santa, please bring gifts for the politicians. In particular, I’m talking about the ones who say that the Americans with Disabilities Act hurts business owners. How does the ADA hurt them, you ask? Apparently, requiring a ramped entrance or lowered counters is likely to bankrupt restaurants, stores, theaters, etc. So, even though the ADA is a federal civil rights law, the politicos want to enable businesses to opt-out of it. Otherwise, the entire U.S. economy will collapse just like it did right after the Civil Rights laws of the 1960s were passed. (It did, right?) And we can’t have that. So, Santa please give these politicians the gift of not getting re-elected so they can make an honest living flipping burgers at businesses that discriminate against gimps.
• The next group of folks that deserve gifts are the architects, builders and town planners that oppose visitability. Visitability is the movement to change the way homes are constructed so that new homes will have things like a zero-step entrance, interior doors wide enough for wheelchairs, and a half bath on the main floor. Visitability objectors claim these things quash creative design and even worse, give the false impression that non-gimps might someday cross over into gimpdom! For those who are against visitability, please, Santa, give them the gift of six months in a long-leg cast and the inability to use crutches. This will require them to climb stairs on their hands and knees just to get the crapper. Think of the toughness of personal character this will build in those who oppose building accessible homes!
• And last but not least, Santa, please bring something special for people who lie about their pets. You know, the inventive folks who dress up their Shih Tzus and Rottweilers in nylon vests and claim they’re service dogs just so they can take them into the Gap and Olive Garden. Such resourcefulness deserves recognition, even if it creates ill feelings toward and distrust of disabled folks with genuine service dogs. For these folks, please give them the gift of a dog bite that gets infected so they end up with a pronounced limp. That way, even if they happen to misplace the dog vest and service dog ID card they purchased from a phony company on the Internet, they won’t need ‘em. The limp will speak loud and clear.   

 Well, Santa, I guess I’ve asked for my annual quota of gifts, so I’ll sign off. I’ll have to ask you for gifts for condo and home owners’ associations that bully disabled people next year.

 

Love,

Heidi

LESSONS ON BIRDS AND LIFE

When I was about 8 years old, I had an old, dog-eared field guide to the birds of North America. I read up on the most common birds found in the Cleveland area: blue jays, cardinals and robins.

 

What caught my fancy the most, though, were the brightly colored songbirds of summer. It was always a treat to catch a glimpse of a Baltimore oriole in the backyard or a scarlet tanager along a country lane.

 

Peculiar kid that I was, I thought I’d better figure out what kind of bird I wanted to be. I’d seen enough episodes of the Twilight Zone and the Outer Limits to know that someday I just might find myself in a position to have to make such a choice. It was best to be prepared.

 

After careful consideration, I selected the indigo bunting. It’s a small migratory songbird that eats seeds and navigates by starlight. Its defining characteristic is its color. It’s a feathered embodiment of the intense blue in Renaissance paintings. The first glimpse of an indigo bunting can take your breath away.

 

Then I got clobbered by juvenile rheumatoid arthritis. The arthritis hit me the way a closed window stops a sparrow in mid-flight: stunned, dazed, lying on cold concrete on a gray winter’s day. It sped through me with the intensity of wildfire. My immune system began an absurd attack, triggering an inflammatory response of the joints, resulting in swelling, excess fluid and severe pain. My body began destroying itself, the disease steadily consuming me. One day I awoke and realized: I am my own assassin.

 

By high school, I had permanently morphed into a member of the JRA race. My arms were short and my hands twisted, gnarled. I would never have an elegant gait, long straight legs or graceful posture. The arthritis had claimed me, had – as the result of my appearance – placed me on the margins of the human race, where those who are deemed “too different” reside.

 

At some point, I reconsidered my choice of bird should I ever change corporality. Beauty seemed out of the question. Because I felt marginalized and voiceless, I thought it would be cool to be the baddest bird on the block. No sweet little songbird for me, thank you very much.

 

I changed my choice to the harpy eagle: the largest, most powerful raptor of the Americas. An apex predator, the females are twice as large as the males. With wings that can span more than seven feet, they swoop down to make a meal out of monkeys, deer and domestic livestock.

 

I’m now on the other side of 50. While beauty and power still hold an allure, my perspective on life has changed. The days that bring the most joy are ones of balance and tranquility. Days when I don’t feel compelled to push the rock that will inevitably roll back down the hill. Days when I embrace, rather than run from, the things that set me apart from the masses.

 

I’ve selected another bird yet again, perhaps for good. Ideals of beauty be damned; I’d be fine with bald head and hooked beak. I don’t have to prove my power to anyone, instead content to hold my wings still and float for hours on the thermals.

 

So, on winter days when the sky is sunny and clear here in Miami, I gaze out the window at the turkey buzzards and imagine myself gliding on the updrafts.

THE PERILS OF OVERTHINKING

Often, life is about simply putting one foot in front of the other -- without tripping yourself -- as you move from Point A to Point B. I don’t care for tattoos, but I’m tempted to have that statement memorialized on my arm.

 

I’m what’s called, in psychotherapy parlance, a ruminator. I tend to over-think and rehash things in my mind. My natural urge is not to move along the shortest line between two points but rather to take a tortuous route with lots of tangential side trips and backtracking.

 

I spend too much time inside my own head and not enough time living in the moment. I do this partly because it’s in my nature. But I also attribute it to my disability.

 

I have orthopedic issues; my mobility is quite limited. And this limits my options for physical activity. Other than walking a few steps now and then, my only viable exercise is adapted aquatics. While I love getting in the pool and moving through the water, I yearn for unadulterated, naked speed.

 

In the first eight years of my life – before arthritis came into the picture – I loved riding my bike. I would seek out large, empty parking lots in which I could pedal for all I was worth. I was enthralled by the feeling of zooming through space with nothing between me and the air.

 

When I meditate and tune out the world, I can recall what it felt like to run. The synapses fire and little smatterings of memories return. I’m once again a little girl in sneakers aware of nothing but my body’s forward motion and the emotional thrill it brings.

 

Sometimes I’ll even remember the long-lost joy of climbing trees. Once again, I’m straining with all my might to reach an overhead branch. My shoulders feel like they will pull from their sockets. Then I’m 20 feet above the ground in a maple tree that feels like the top of Everest. It’s a rush of joy, fear, and sheer power. It feels as if anything is possible.

 

To be clear, I don’t miss physical activity because I see myself as somehow broken or because it would make my life more meaningful. I simply want, from time to time, to get off the hamster wheel of mental rumination. I want to move without thinking.

 

I want to simply feel.

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. 

VISITABILITY -- MORE FREEDOM OF CHOICE

“We shape our dwellings…and later our dwellings shape us.” – Winston Churchill

Housing is the place we make our home, and home is a highly personal space where we make our lives. Home is an inextricable part of our identity. It becomes who we are and what we’re about.

 

Neither the ADA nor the Fair Housing Act requires accessible features in single-family homes built by private developers. Why does this matter? Because 69 percent of all housing units in the U.S. are single-family homes.

 

That means more than two-thirds of the housing in America is not required to be accessible to people with disabilities.

 

Visitability is an international movement to change home construction practices so that new homes offer three specific accessibility features. It’s similar to universal design, but very focused in scope and more about social reform. The three basic elements found in most visitability laws are:

• At least one zero-step entrance on an accessible route leading from a driveway or public sidewalk.
• All interior doors providing at least 31 ¾ inches (81 cm) of unobstructed passage space.
• At least a half bathroom on the main floor.
   
  Visitability is not about complete residence accessibility but access to principal spaces. Other features -- a roll-in shower or accessible kitchen features -- are typically not requirements found in visitability laws.
   
  In a study conducted by AARP, 90 percent of people ages 65 and over want to continue living in their current residence as long as possible; they want to age in place. In the U.S., more than one million households with a person with a disability over the age of 65 are inaccessible. As more Baby Boomers struggle with mobility, the numbers will only increase.
  BUILDER Online, a publication aimed at home builders, says U.S. Census data shows the number of Americans 65 and up will rise significantly between now and 2020. This means they’ll be an upswing in the desirability of aging-in-place home features accompanying the increase of multigenerational homes. Demand will only grow for residential designs that anticipate changes in health, vision or mobility. Such features ensure that homes are not only safe and comfortable, but also aesthetically pleasing.
  Such features include:

• Main living areas on the ground floor
• No steps between living areas
• Hallways at least 4 feet wide
• Interior doors 36-inches wide with levered hardware
   
  These features provide a basic shell of access to permit formerly non-disabled people to remain in their homes if they develop a disability, rather than forcing them to do expensive renovations, live in an inaccessible home which endangers their health and safety, or move from their community into a nursing home.
   
  Folks undergoing physical rehabilitation from an injury or illness can return home earlier, continuing their rehab on an outpatient basis. Designing for visitability is also convenient to people without disabilities who use strollers or carriages. It certainly makes it easier to move furniture or bring in a load of groceries.
   
  And true to its name, visitability make it easier for people who develop a mobility impairment to visit friends and extended family rather than having to turn down invitations, or not be invited at all.
   
  I can already hear the naysayers complaining that visitability equals utilitarian ugliness. Truth is, houses with visitability features are usually indistinguishable from those without them.
   
  Other objections? Check out 9 Myths and Facts About Visitability: http://concretechange.org/visitability/9-myths-and-facts-about-visitability/

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.