THE DAY I BARED MY DISABILITY

Wearing Nothing but Eyeliner and Pearls

By Heidi Johnson-Wright

Disrobing in a dusty, boarded-up hotel for a complete stranger didn’t bother me. But when the cops showed up, I have to admit it got a little weird.

But before we get to that, let me tell you a little about myself. I was born non-disabled. 

Then one day when I was 8 years old, I awoke and could barely raise my left arm. Pain – deep, sharp and gnawing — had settled into my shoulder. I found it baffling. My parents dismissed it as one-too-many handstands. They were sure it would go away. But days turned to weeks turned to more than a month, and my pain only grew worse. The tomboy who used to climb trees as well as any of the neighborhood boys was earthbound.

Rheumatoid arthritis hijacked my entire body, from my jaw down to my toes. Over the next five years, the arthritis roared like a freight train: catastrophic, unstoppable. I lived with severe pain every day. No drug or therapy had any effect. By high school, my shoulders, hips and knees were destroyed. The summer before I turned 16 – while my friends were getting their drivers’ licenses – I had both of my hips replaced.

During my adolescence, I had no one to talk to, no manual to consult about not only becoming a woman, but a disabled woman. The only time my body was discussed was in the context of medical treatment. Life as a patient meant a lot of disrobing and examinations. I felt like an inanimate object to be stared at, poked and prodded by docs, nurses, X-ray techs, PTs, etc. In fact, my arthritis clinic was used to teach medical students.

One time when a particularly cute male med student was observing, my doctor commanded me to walk down a hallway so he could observe my gimpy gait. While strutting along the “catwalk,” I felt a breeze behind me. I ignored it and made my turn, walking back toward the group of white lab coats. Then more breeze. The gown was coming untied, I was certain. I could feel it gaping open to reveal my granny panties. My face grew hot with embarrassment. Adolescent girls’ diaries should be inscribed with purple prose about secret unrequited crushes, not about the shame of being used as a visual aid while wearing a hospital gown.

And body shame was my constant companion for years. I used to think acceptance was an all-or-nothing thing: you either accepted something completely or not at all. I eventually learned that it’s much more layered and complex than that. Even after I thought I’d accepted my disability, I still felt pressured to pass as non-disabled. I forced myself to walk when I should have used a wheelchair. I tried to hide my scars. I was hesitant to let others know when I couldn’t physically do something. I felt ashamed simply for being different because different meant inferior.

Full story and fully nude photo at the Mighty -- follow link here

POSTER CHILD HAS-BEEN

Earth Bound Tomboy

By Heidi Johnson-Wright

Check out the link below to the excerpt from my forthcoming memoir, The Earthbound Tomboy at New Mobility magazine online. It's about my stint as a poster child for the Arthritis Foundation. New Mobility is the premiere lifestyle magazine for wheelchair users.


http://www.newmobility.com/2015/01/poster-child/

AN INCONVENIENT TRUTH (ABOUT LIFE WITH A DISABILITY)

Add caption

EARTHBOUND TOMBOY

BY HEIDI JOHNSON-WRIGHT

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.

 

http://earthboundtomboy.blogspot.com/2014/12/an-inconvenient-truth-about-life-with.html

WACK FOR WACKIES

FROM THE EARTHBOUND TOMBOY FILES...

BY HEIDI JOHNSON-WRIGHT

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.

 

http://earthboundtomboy.blogspot.com/2014/11/wack-for-wackies.html

POWERING (AND EMPOWERING) THROUGH THE WORLD ON WHEELS

EARTHBOUND TOMBOY


BY HEIDI JOHNSON-WRIGHT

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. 

http://earthboundtomboy.blogspot.com/2014/11/powering-and-empowering-through-world.html

THE MOST DREADED DISEASE OF ALL

EARTHBOUND TOMBOY 

BY HEIDI JOHNSON-WRIGHT

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?

http://earthboundtomboy.blogspot.com/2014/11/the-most-dreaded-disease-of-all.html  

WHEN PUTTING ON THE DOG IS A PUT-ON

EARTHBOUND TOMBOY

BY HEIDI JOHNSON-WRIGHT

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.

http://earthboundtomboy.blogspot.com/2014/11/when-putting-on-dog-is-put-on.html