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.

WACK FOR WACKIES

The summer just before I turned nine years old changed my life forever. It wasn’t that I acquired some profound bit of knowledge or underwent a religious conversion. Instead, it was a discovery I made with my friend and next-door neighbor, Trish.  Her family was from New Jersey, so she called pop “soda,” and tennis shoes “sneakers.” She had an infectious laugh, was rarely moody, loved Sonny and Cher as much as I did (which is, to say, a crap load), and had a wardrobe of nine or ten bathing suits. My personal favorite was a one-piece that was held together at the belly button by a plastic ring. It hurt her stomach when she’d plunge head-first down the water slide, but it made her look like a miniature Ali MacGraw.

 

One afternoon as Trish and I arrived at the neighborhood pool, I glanced over at another bicycle on the rack where I was locking mine up. On the fender was a Wacky Package sticker, the first one I’d ever seen. It was Six-Up (Six Fooey Ounces. You Hate It – It Hates You.) For me, it was love at first sight, later bordering on obsession.

 

For those of you too young to remember, Wacky Packages were a series of trading cards and stickers by the Topps Company that parodied consumer products. They appealed to me for a variety of reasons. They were bright and colorful. They often featured bodily humor like burps and B.O. (Spit & Spill Cleanser, Belch’s Grape Jelly, Heartburn Cereal) or jokes about current events, like the Cold War (Commie Cleanser, Moscow Syrup, Czechlets.)

 

Many included animal imagery (Pigpen Oil, Toad Bubble Bath, Ape Green Beans) and drawings of the disgusting (Nose-X Tissue, Bird Brain Leftovers, Decay Toothpaste.) I adored the Wackies of things supernatural (Hex-Lax, Scary-Lee, Play Skull) and even the jokes about death (Casket Soap, Killette Hair Spray, Nooseweek Magazine.) Their use of parody reminded me of my beloved Mad magazine.   

 

Starting the summer of 1973, I bought as many Wackies as I could afford with my meager allowance. Eventually, I acquired T-shirts sporting large decals of the stickers, including Rice-a-Phony and KoDuck. Forty-plus years later, I still adore them. I would decorate a room in my home with them from floor to ceiling, if I could. Wackies shaped the woman I am today. I still enjoy humor that uses both high-brow wordplay and low-brow crudeness. I appreciate tweaking the nose of corporate American and consumerism.

 

And I still think back fondly on lazy summer afternoons when I passed the time reading Mad magazine and buying Wacky Packs at the convenience mart and swimming with Trish.

DOING THE DME SHUFFLE

Let’s talk about a tricky dance with a lot of steps, and I’m not referring to the tango, waltz or minuet. It’s a dance familiar to everyone who uses a mobility device and has health insurance. I’m talking about the DME shuffle.

 

DME stands for “durable medical equipment,” the jargony moniker used by the insurance industry to refer to equipment like wheelchairs and scooters. It also refers to things like oxygen tanks and CPAP machines.

 

I’ve never worked in the insurance industry so I don’t know its inner workings. But I’ve been a consumer of insurance coverage for decades, so I’m an expert of sorts on navigating from the outside of what feels like an impenetrable, byzantine system. And despite my years of experience, I never cease to be amazed by its frustrating unwieldiness.

 

Take wheelchairs, for instance. I’ve been a wheelchair user for 30-plus years. I need one to traverse distances of more than four or five feet. Simply put: I gotta have a functioning wheelchair about 16 hours of each and every day, or I’m screwed.

 

Most of the time, it’s cool. But things get real tricky when it becomes evident that my chair is getting to the end of its life span. One can only repair and hold something together with chewing gum and paper clips for so long.

 

I can’t predict when the chair will crap out for good. And because it’s essential to my most basic functions, I don’t want to wait too long. Why? Because acquiring a new one is about a six-month process.

 

The process begins with getting a prescription and a letter of medical necessity from my doctor. Since he’s busy guy, I supply him with the essential info and suggested language he needs to write them. Once I’ve got these documents in hand, the real fun begins.

 

Insurance providers typically subcontract with other companies to provide DME. The DME provider’s bread and butter, though, is primarily diabetic supplies and off-the-rack walkers. When it comes to wheelchairs, they try to push the bare bones basic, one-size-fits-all variety. Give them your height and weight, and they’ll order you a small, medium or large. Those are fine for the retiree who needs one only for trips to the mall or county fair.

 

But I use a chair many hours every day. I must be evaluated by a rehab professional to determine the type of chair that can accommodate my functional limitations and ergonomic needs. The seat must be high enough from the floor so I can stand up unaided. The back rest must provide comfort and support in the right places. I need a seat cushion that supports my posture but doesn’t aggravate my chronic sciatica. The underside of the chair must accommodate a large bolt that can lock the chair into my van’s tie-down system. I’ll spare you the remaining details.

 

My very real needs are at odds with the one-size-fits-all DME system. This means I must steel myself for a protracted back-and-forth with the insurance provider. It means many months of responding to requests for information and waiting for approvals that allow me, video game-like, to advance to the next level. Months of whistling through the graveyard that my faltering chair will continue to work.

 

It seems that, even if a wheelchair is essential to my ability to function, I’m supposed to have only one at a time. A back-up second power chair is frowned upon.  Apparently, insurance coverage does not mean ensuring I will never be without a working chair so I can go to work or the grocery store.

 

And heaven help you if you need a power chair sometimes and a manual chair others. For instance, I cannot independently propel myself in a manual chair. I need a power chair to get around on my own, but I also need a ramp-equipped van to transport the power chair. When my van is in the shop or not practicable for a trip, I need a lightweight manual chair because that’s the only kind that can fit in the trunk of a car. Insurance companies don’t seem to get that. I once had an insurance company employee on the phone ask me which is my primary chair: power or manual? My efforts to explain why both were essential were in vain. Barely containing my frustration, I asked them woman which was her primary leg: the left or the right?

 

With each passing year, I become a bit more adroit with the DME shuffle. But I really, truly wish I could simply mix myself a caipirinha and change up to a gentle samba.  

POWERING (AND EMPOWERING) THROUGH THE WORLD ON WHEELS

There’s no two ways about it: wheelchairs are demonized in our society. They’re seen as a symbol of weakness and failure rather than of power and liberation.

 

I had many orthopedic surgeries as a teenager and had to use a wheelchair for mobility during the long periods of rehab. But because of the way other people treated me when I used a chair, I was determined to get back up on my feet, even though walking was painful and draining much of the time.

 

I didn’t have a power wheelchair that I could use independently until I went away to college. I immediately realized the freedom it provided, but I was very conflicted about using it.

 

Normally, if I had a flare of pain, I would take my chair to and from class for a day or two. But I always preferred to walk, whenever possible. I still struggled to reconcile using a chair with my self-image. If I were a quadriplegic due to a spinal cord injury, I’d have to use one for mobility – there’d be no room for debate. But I inhabited a realm betwixt those who walked all the time and those who never did. There was no “how-to” guide for someone like me, or at least I’d never seen a book titled Sometimes Your Ass Walks, Other Times it Rolls: a Guide to the Wheelchair Netherworld at Walden’s at the mall.

 

Some part of me was still in denial about the severity of my disability and my need to use a chair. People treated me differently when I was in the chair instead of walking – no question about it. I sometimes felt like the homeless bag lady who everyone sees on the street yet looks right through. And like a street dweller much in need of a bath, people often made wider circles around me when I was on wheels, as if I smelled bad or had a contagious disease.

 

It was all pretty ridiculous, since even when I was up and walking, I would never be mistaken for an able-bodied person. My rear end stuck out, my strides were tiny and my gait included a side-to-side rocking motion. Standing or seated, I was still a gimp. But to a lot of people, a wheelchair is a prison, a sign of tragedy. It’s reflected in archaic terms such as “wheelchair-bound” and “wheelchair-confined.”

 

At age 20, part of me still bought in to the idea that to use a wheelchair – even when I hurt so bad, I was sick from the pain – was a sign of failure. I simply wasn’t trying hard enough, wasn’t soldiering through like I should. Using a chair meant giving in, that I would never be fully accepted into the “cool kids’ clique” of the able-bodied.

 

I’m ashamed to admit that, on the days in college I did take the wheelchair, I hid it. I would purposefully arrive early, find an adjacent empty classroom, park it there, then walk over to my class. Crazy, huh?

 

After half a century of living, I’m finally comfortable navigating through the world on wheels. The top of my head might be a couple of feet lower in altitude, but my mind, heart and soul are the same. If other people choose to devalue or infantilize me, it’s their problem, not mine.

 

The Most Dreaded Disease of All

I like my breasts. I truly do.

They’re nothing special -- certainly not Playboy caliber. But they’re mine. And I’d like to keep them healthy.

Which is why I was disturbed the other day when I passed by a pink mobile mammogram RV. It was parked on a public plaza to motivate women to stop by and have breast imaging done.

I’m all for that. Anything that can detect cancer early on is a godsend. But what stuck in my craw were the four steps at the entrance of the RV. I circled the vehicle but saw no ramp.

I guess the message is this: access to medical care doesn’t necessarily include access for folks with disabilities.

In the interest of full disclosure, I’d already had my annual mammogram done at a world-class cancer clinic. But I thought about other women with disabilities in my community who, for whatever reason, may not able to go to a conventional facility for imaging. Shouldn’t they be able to stop in and get services at the mammogram RV, like anyone else?

It got me thinking. I thought back to my mammogram the previous month. Although the machine’s height was adjustable, there was no way I could have contorted myself into position without standing upright. Because even though I use a wheelchair as my primary means of mobility, I can stand and walk a few steps.

What about others – such as women with spinal cord injuries -- who cannot stand up for a few moments to complete the imaging? And why aren’t people designing imaging machines that are accessible to people with disabilities? If such machines exist, why wouldn’t a major cancer clinic with a stellar reputation have one?

Then I remember how, a couple years ago, I needed a breast ultrasound to supplement the mammography. That same clinic’s ultrasound rooms were so small, I had to park my wheelchair in the hallway and walk into the room to have the test done.

This made me angry, which then jogged my mind further. I remembered how I’ve been going to the same rheumatologist – a wonderful doctor whom I adore -- for 13 years. And though his clientele consists primarily of arthritics who have chronic pain and struggle with limited mobility, none of his exam tables have adjustable height. Should he need me to get up on the table, I would have to either pole vault onto it, or be lifted by a couple of his staffers. Both options are unpleasant and quite frankly, should not even have to be considered.

More memories flooded my brain. I recalled my week-long hospitalization after major hip surgery last year. My room was located on the orthopedic unit, yet the bathroom was inaccessible to me. My surgeon allowed me to get out of bed and use the commode -- even encouraged it. But I couldn’t because the hospital could not provide a garden-variety seat riser. I was also denied a shower because the bathroom had a tub shower but no transfer bench.

Access to health care, from financial and even geographical perspectives, is challenging enough as it is. Why should folks with disabilities have additional hurdles that make them struggle for -- or even  forego -- medical care in one of the most prosperous, developed countries in the world?

I ask the question, yet I already know the answer.

Because ableism -- discrimination in favor of able-bodied people -- is as prevalent and destructive as cancer has ever been.

WHEN PUTTING ON THE DOG IS A PUT-ON

What is it with human beings and their tendency to exploit something, even if means hurting others?

 

It seems there’s been an incredible proliferation of fake service animals as of late. Some people without disabilities are choosing to masquerade as folks who are disabled and pretend Fido or Fifi is a service dog rather than a pet. Then the dog can accompany them anywhere the general public can go: restaurants, stores, theaters, parks, hotels, airplanes – you name it.

 

How can this be? Unfortunately, the law inadvertently makes fraud possible.

 

If someone is legitimately disabled, the disability is obvious and the dog’s assistance is readily apparent (e.g., the dog is guiding an individual who is blind, pulling a person's wheelchair, or providing assistance with stability or balance to an individual with an observable mobility disability), then the ADA says a business is not even supposed to ask questions. Owner and dog are to be admitted.

 

When the person’s disability is not apparent – as would be the case for someone malingering but also for someone with a legitimate but hidden disability -- the law allows a business to ask the dog owner two questions. Does he need the animal because of a disability and what tasks has the animal been trained to perform? But that’s it. If the fraudster says the dog is a service animal and gives one example of a “task,” the inquiry ends. Come on in.

 

Under no circumstance can a business require the owner to present any special identification cards or proof that the animal has been certified, trained, or licensed as a service animal.

 

Obviously, knuckleheads gaming the system hurt folks with real but hidden disabilities the most. But in the end, the fakers hurt everyone. Businesses are becoming more suspicious and, ignorant of the law, are insisting that a legitimate service dog must wear a special vest or its owner must have some sort of a wallet card certification.

 

Because folks with real disabilities are growing tired of being hassled every time they go to Red Lobster or the Gap with their dogs, they’re buying these unnecessary things. Plenty of companies online are more than happy to sell you a $5 vest, a $2 tag and a $1 wallet care for $200, plus shipping and handling.    

 

The more folks that outfit their dogs with these unnecessary items, the more business owners think they’re required. It creates an ugly vicious cycle.

 

The fraudsters apparently see no harm in their lies. They think it’s no big deal that disabled folks are being eyed with suspicion and may even be turned away by frustrated, misinformed business owners.

 

In the end, people with real disabilities who truly need service dogs are the ones who pay the price.

ADA EQUALS CIVIL RIGHTS? RIGHT ON!

God bless the Americans with Disabilities Act. But a pox on the houses of those who named it.

Why is it that the ADA – the most broad-sweeping piece of civil rights legislation affecting people with disabilities – does not have the phrase “civil rights” in its title?

If you’re disabled or love someone who is, you probably know it’s a civil rights law. A law that guarantees that people with disabilities have the same opportunities as everyone else to participate in life -- to enjoy employment, goods and services, and State and local government programs and activities.

But a whole lot of people haven’t a clue. People who should know better -- like civic leaders, business owners and journalists.

Folks who are ignorant in this way sometimes dismiss the ADA. The reason I hear most often as to why the ADA need not be complied with is cash.

“Oh, it would be too expensive,” they shrug and say, whether their cost assessment is accurate or not.

When I hear this, I think, “Are you really OK with reducing my equal enjoyment of civil rights -- and that of millions of others -- to dollars and cents?”

Would these cost-benefit analysts say “Sorry, too expensive!” about the civil rights of people in other protected classes, such as race, gender, religion or ethnicity?

Some would, yes. There are always a percentage of willfully obtuse knuckleheads who can’t be reasoned with.

But I think a lot of folks simply don’t see the ADA in the same light as the Civil Rights Act of 1964 because of its moniker. Just as importantly, we disabled Americans have failed to tell our story.

We haven’t gotten the message out that when a restaurant entrance could be ramped but isn’t, it’s the same as having a sign over the door telling African Americans they won’t be served.

We’ve failed to express that when a city has a website inaccessible to blind residents, it’s no different than telling Jewish people they’re forbidden from using that website.

We haven’t communicated that when a company refuses to provide a reasonable accommodation to a deaf employee, it’s equal to paying a man more than a woman, simply because she’s a woman.

We disabled folks have let others hijack our message and “tell our story” for us. And what has it gotten us?

Slanted news stories about those angry handicapped people who should shut up and simply be happy with their special parking spaces.

Shamelessly bigoted politicians who demonize the ADA as something that allegedly bankrupts hard-working business owners.

Sensationalistic, inaccurate headlines about some malcontent in a wheelchair who sued one of those hard-working business owners because a toilet stall was one-eighth of an inch too narrow.

How do we fix it? How do we turn this around so Americans understand the true character of the ADA and its importance to people with disabilities?

I’m not sure. But a good start would be for disability rights organizations to align themselves with other civil rights organizations.

I yearn to see Jesse Jackson on TV asserting that the ADA is just as important to the equality of Americans as the civil rights acts passed in the 1960s.

I long for the day when other leaders – such as those representing Jewish, gay and women’s rights groups – champion the rights of people with disabilities along with those from their own organizations.

Until then, the struggle of folks with disabilities may have plateaued out.

Look on the bright side: we still have the parking.

THE PRISON OF DENIAL

I used to think denial was like a light switch: either all the way on, or all the way off. For example, you either believed in evolution, or you clung to your knuckle-dragging dogma and denied its existence altogether.

But like so much of human behavior, denial is complicated, shaded between stark black and white with many hues of gray.

Denial can only be put to rest with unconditional acceptance, and acceptance is a long, multi-layered process. I know this all too well. It took me many years to fully accept my diagnosis of rheumatoid arthritis.

No one wants to accept that something terrible has happened to them or to a loved one, especially something utterly undeserved. We want to believe that, all things considered, the universe is fair. The good will be rewarded; the evil, punished. 

What if the terrible thing that happens is starkly real today, but illusive tomorrow? A severed leg ain’t growing back -- ever. You either accept it or you’re going fall down a lot.  But rheumatoid arthritis, or RA -- my disability, is often episodic. Just when you think you can’t take one more miserable day, it eases off for a bit. This only encourages the false hope that the medication, prayers or copper bracelets are actually working.

None of the many forms of arthritis have any known causes or cures. Lots of theories, nothing for certain. This always leaves the door open to “someday they’ll find a cure.” I can tell you that – if you’re not careful -- that door leads straight to the dungeon of denial.

Today, there still are no cures for RA but there are many good medications that can effectively manage symptoms and prevent joint damage. But back in my day if you had the disease in severe form, effective treatment options were sparse.

After half a century of living, I accept that I will always use a wheelchair for mobility. That I will never climb the terraces of Machu Picchu, or wear a pair of high heels.

If you’re struggling to accept a disability, don’t beat yourself up. It takes time, lots of crying, a good sense of humor and perhaps some talk therapy.

Stay strong. Fight past the shame of “otherness” imposed on us by society.

Ultimately, acceptance isn’t defeat. It’s liberation.

TESTING THE TABS

It’s sometimes hard to gage how folks see you when you have an obvious disability. In their eyes, are you a pitiable creature, a thing to be loathed, a fetish object or simply another human being? I occasionally assume the worst about TABS – the temporarily able bodied. I catch myself now and then presupposing someone harbors bigoted views, even if they don’t.

 

When I was younger, I used to secretly put others through tests. Perhaps it wasn’t the nicest thing to do, but it seemed necessary at the time. I would make a new friend or meet a cute guy who was boyfriend material, then see how they would react to my disability in certain situations. I was B. F. Skinner and they, my lab rats.

 

When I went away to college at 17, I had my first personal care attendant that wasn’t a family member. I felt an immediate connection to her. She was enthusiastic but not fawning, and clearly had a sense of humor. She seemed perfect. Or was she?

 

One day shortly after Lexie had begun working for me, we were in the dorm bathroom. She was helping me with my morning ablutions. We were telling jokes – some cheeky, others raunchy – to pass the time. When it was my turn, I told her a joke that poked fun at disabled people but was straight-up hilarious. She laughed and shook from her head to her toes. Other people I’d told that joke to had frozen just after I delivered the punch line, afraid to laugh. Lexie showed no such fear. She passed my test with flying colors.

 

The tests I devised for boys were different. If -- when I first met them – I’d been walking, I made sure they’d see me later in my wheelchair. I then watched their reactions. Did their faces show shock or disgust? Discomfort or curiosity?

 

If a boy passed my initial test, then he moved to the next level. On a first or second date, I’d be sure to hold his hand at the restaurant or movie theater. My hope was he’d be at ease being seen with a disabled chick in public. Usually, he passed. Usually.

 

Looking back, I realize that my little tests were as much about my own presumptions and biases as anyone else’s. I wasn’t yet comfortable in my own skin and sometimes projected my discomfort on others. Now in my fifth decade of living with a disability, I can finally admit it.