PROFESSIONALLY CRIPPLED

FROM THE AUTHOR OF THE UPCOMING MEMOIR: Earthbound TomBoy

By Heidi Johnson-Wright

Denial and acceptance seem, at first blush, to be polar opposites. Or perhaps two sides of the same coin. 

As a kid, I figured you either completely accepted something, or completely denied it. The light switch was either on or off, with no shades of gray in between. Decades later, I eventually realized the irrationality of such an extreme viewpoint.  I began to see that one could indeed accept certain layers of something, yet deny others. Such as a disability.

Since I was about 10 years old, my disability had become visually obvious. I could walk unassisted sometimes – wheelchair on the sidelines – yet there was no denying I was disabled. 

Arthritis had irrevocably claimed me. I had the classic look of a 1970s-era juvenile rheumatoid arthritis survivor. Should you meet anyone of my era who had severe JRA, our look is unmistakable. 

We have very small chins because of jaw joint damage. Our faces simply didn’t grow fully. We can’t turn our necks so we follow things with our eyes only. Our shoulder width is narrow. We struggle to raise our arms, which are short. Our hands are small. Our fingers are twisted, gnarled.

A JRA survivor’s gait is more of a side-to-side motion, rather than one of forward strides. If our hips were affected – especially if they were replaced – our lower backs are arched and our buttocks stick out. We have knee contractures that keep our legs perpetually bent.

With all of these undeniable physical changes, you’d think my acceptance of my disability would be complete. Yet when when I started using a wheelchair more often for mobility, I would sometimes find myself jumping hoops of rationalizations.

“I can still walk a little bit, so I’m not as disabled as those other chair users,” I thought.

One thing I tried to avoid was looking – as I called it – “professionally crippled.” While I couldn’t actually define the term “professionally crippled,” I knew it when I saw it. Kind of like Supreme Court Justice Potter Stewart’s take on “obscenity.”

The professionally crippled of the world tricked out their wheelchairs with beverage holders and bumper stickers. They didn’t discreetly hide their wheelchair battery chargers or reacher sticks or even urinals. They left things spread out for anyone to see. They cared more about convenience than appearance.

As I began my second half-century on this Earth, I still like to look my best. But now I value convenience and ease and lack of hassle more than ever. Part of it stems from just being older and a bit more depleted of energy. Plus, with age, comes wisdom and the ability to sort out what really matters and what doesn’t.

Time has also eroded away some of my underlying layers of denial. You might even say I’ve moved up from amateur to professional rank. I’ve learned to embrace my disability identity. It’s who I am. 

I’ve earned it. I own it. And I refuse to be ashamed.

http://earthboundtomboy.blogspot.com/2015/09/professionally-crippled.html

THE FUTURE IS UP TO YOU

DEAR GRADUATING CLASS OF 2015: 

BY HEIDI JOHNSON-WRIGHT

Dear Graduates:

As you head out into the world, I’d like to offer a few thoughts and bits of advice:

·        Do not be fooled. It might be 2015, but there is still a lot of inequality out there. Just because a law gives everyone the same rights doesn’t magically make it so. Equality comes not from statute books but from the attitudes and everyday acts of human beings.

·        Donating money to a cause or clicking “like” on a Facebook page is nice, but won’t change things very much. If you want to change things for the better, speak up when you see unfairness. Tell a business owner that you will no longer patronize their store or restaurant because disabled people can’t get in the door or up to the counter. By the same token, praise those who make an effort to include everyone.

·        If your body, mind and sensory organs function within “normal” parameters, be grateful. But don’t assume that makes you superior to anyone else. Blindness, Down Syndrome or a nasty limp may present challenges but do not make someone a lesser being.

·        If you wouldn’t make a statement about someone of a different race or religion, then don’t make that same statement about someone with a disability. For example, telling someone that it’s a shame she’s in a wheelchair is the same as telling her it’s a shame that she’s African-American or Jewish. Get the picture?

·        People with disabilities do not exist for the purpose of inspiring you or making you feel better about your problems. Imagine if your every breath, thought and act took place not for you own self-actualization, but for the benefit of everyone around you. Scary, right?

·        Borrowing your grandmother’s handicapped parking permit or lying that your pet is really a service dog are not victimless crimes. They make the whole world that much more suspicious and distrustful of disabled people with legitimate permits and service dogs. Simply put: that crap makes my life that much harder, so please don’t be that type of douchebag.

·        As your careers take off, try to make your corner of the world a little better. How? If you own your own business, make it fully disability accessible. If you become an HR director, recruit employees with disabilities. If you design anything – houses, cars, appliances, tech devices – make them universally accessible to all. If someday you’re a high flyer – a company’s CEO or the governor of your state – create a corporate culture of inclusion, from the top down.

Now go forth and do great things.

http://earthboundtomboy.blogspot.com/2015/05/dear-graduating-class-of-2015-future-is.html

A TRIBUTE TO STELLA YOUNG

 
earthBOUNDtomBOY

by HEIDI JOHNSON-wright

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.  

http://earthboundtomboy.blogspot.com/2014/12/a-tribute-to-stella-young.html 

DOING THE DME SHUFFLE

EARTHBOUND TOMBOY

BY HEIDI JOHNSON-WRIGHT

 

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.

THE PRISON OF DENIAL

FROM THE EARTHBOUND TOMBOY FILES

By Heidi Johnson-Wright

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. 

http://earthboundtomboy.blogspot.com/2014/11/the-prison-of-denial.html