WHEN WILL PEOPLE EVER UNDERSTAND THAT A WHEELCHAIR IS TECHNOLOGY

THAT DELIVERS FREEDOM, INDEPENDENCE, MOBILITY AND DIGNITY? 

“I’d rather die than use a wheelchair,” says the bigoted woefully ignorant ableist.

The same person ironically jumps into a sedan to drive 10 miles — because that wheeled machine covers more ground more quickly than his body.

Assistive mobility devices are liberating.

UNBROKEN

BY HEIDI JOHNSON-WRIGHT

Dear America:

It’s been nearly a quarter century since the Americans with Disabilities Act was passed. Many of you may think folks with disabilities are equal now. That perhaps we should just shut up already and move on. 

I understand that reaction. People with disabilities haven’t told their story. We’ve let others – usually clueless, often cruel -- tell it for us.

A common but inaccurate story is told by the business owner who resents the ADA. He thinks he’s done everything for those gimps, even put in a ramp. Why can’t they just be grateful, even if the ramp is dangerously steep? The local news airs a story of the struggling business owner allegedly on the verge of bankruptcy, because those darn gimps insist his ramp isn’t up to snuff.  

But the story fails to explain that the ADA is not a burdensome building code but a civil rights law. It fails to point out that its requirements are usually less expensive to meet than already existing structural, electrical and plumbing codes. The story doesn’t say ramps are involved so people with disabilities can get into the building like everyone else. The story doesn’t clarify that refusing to remove physical barriers is the same as denying basic civil rights by posting a sign saying “Whites Only” or “Men Only” or “Christians Only.”

There are other stories told about people with disabilities rather than stories told by them. Like when the media made Christopher Reeve the de facto spokesperson for every disabled person on the planet. 

I have no ill feelings toward Reeve. But Reeve expressed a very different mindset than the majority of folks with disabilities. He lived many years without a disability. After his injury, he was focused on curing disability rather than making a meaningful life with it.

Fueled by the national media, Reeve’s message aligned with the medieval way of thinking: a disabled person is a broken person. And the only way to deal with someone who’s broken is to fix him. There are normal people and there are disabled people. The normal are whole and valuable, and the disabled are broken and worthless. 

The media’s focus on Reeve and his obsession with a cure took away the focus on everyday folks living with disabilities. The message was that every red cent should be used to find a cure. Why direct resources to fund affordable, accessible housing so 30-year olds in nursing homes can have full lives in the community with in-home attendant care? The lives of the broken hold no value until they are fixed.

Only a fraction of news stories focus on the modest investments in the built environment and simple reapportionment of government funding that would truly improve the quality of life for millions of disabled folks. The majority of media coverage reinforces vile stereotypes of the pathetic, pitiable and broken.

If news outlets repeated reprehensible stereotypes of African Americans, Jewish Americans and Hispanic Americans, the public would be justifiably outraged. But pigeonholing Disabled Americans as pathetic is still acceptable.

So I implore disabled men and women to tell their stories. To assert their civil rights to employment and transportation and goods and services. To claim the right to a life, just like anyone else.

Tell your story now, or someone else will tell it for you. 

http://earthboundtomboy.blogspot.com/2015/07/unbroken.html

ASK A GIMP GIRL!

TRUTH FROM THE EARTHBOUND TOMBOY

 

BY HEIDI JOHNSON-WRIGHT

I get oodles of inquiries here at the EarthBound TomBoy and in the everyday world, asking me questions about gimp life. Many of my gimp friends get similar questions. So, it seems we gimps have an opportunity -- nay, a responsibility -- to educate you curious souls who want real insight into how we roll. So, I'm going to run a feature from time to time called "Ask a Gimp Girl!" And away we go...

Q. Aren't you really in it for the parking?

A. Wow, your insight has laser-like accuracy! Incredible! Now that I've been found out, here's the scoop. I was a precocious kid. Many years before I learned to drive, I knew close-in parking was the key to happiness and success in life. So back in the summer of 1972, I had my parents send me away to a medical experimentation laboratory. (We told everyone I was at church camp.) The chief doctor -- who bore a striking resemblance to Marty Feldman -- re-programmed my genetic material to ensure I would contract an autoimmune disease. And, golly gee wilikers, if I didn't come down with juvenile rheumatoid arthritis a year later, and a particularly wicked case at that. The disease ravaged my joints from head to toe leaving behind catastrophic permanent damage. I was using a wheelchair in no time!

Flash forward to my thirties when I bought my first wheelchair-lift van. That's when my "get crippled to get parking" scheme really paid off. I would drive to fun destinations on a whim (i.e., supermarket, doctor, my workplace) and search for accessible parking (called "handicapped parking" by you outsiders). I made sure to have lots of music cassettes with me, so I could listen to my favorite tunes as I circled and circled, scouting for a parking space unoccupied by weekend athletes who'd borrowed their Great-Aunt Tessie's placard.

I recall one particular reconnaissance run when I explained to a motorist that he'd inadvertently parked in the access aisle between two spaces -- the area I needed to deploy my ramp and exit the van. He screamed and called me a word I first heard on my grandpa's Redd Foxx comedy album. That's the day I knew I'd finally arrived into the upper echelon of the parking elite.

Q. Can you have children?

A. So glad you asked. Honestly, there are few things I'd rather do than talk to a complete stranger about the parts of my life that the US Supreme Court says are protected by the First Amendment penumbra of privacy. Why? Because like all gimps, my duty to educate the general public on what it's like to be one of "them people in a wheelchair" trumps all of my personal feelings and needs as a human being.

Now, on to the question. Before I can answer it, however, I have to consult my gimp question de-coder ring. (I got it in a box of Peanut Butter Captain Crunch back in 1976 and it hasn't failed me yet.) Okay, I'll give the ring a spin...Hey, wait just one darn minute! "Can I have children?" is not really the question at all! What you're really asking me is "Can I carry out the act that has been the traditional way of conceiving children?!" Ah, you're a sly one, Mr. Question Asker, that you are.

Okay, I get it. Gimps are not exactly held up as society's ideal of sexual attractiveness -- Push Girls and the occasional fashion model aside. Most of us are pretty much sidelined as benchwarmers in the Big Game of Slap and Tickle. At least that's how you outsiders see it.

Let's see...how can I put this politely? How can I satisfy your longing for knowledge without compromising the gentility of the EBTB blog? Okay, here goes...

If I "can't have children," -- as you put it, Mr. Question Asker -- then I sure have wasted a king's ransom on contraceptives over the years.

http://earthboundtomboy.blogspot.com/2015/05/ask-gimp-girl.html

ROCK ‘N’ ROLL GIMP GIRL

ROCK ‘N’ ROLL GIMP GIRL 

“She started dancin' to that fine-fine-fine-fine music

Ooohhh, her life was saved by rock 'n' roll

Hey baby, rock 'n' roll”

-- Lou Reed: “Rock ’n’ Roll”

By Heidi Johnson-Wright

The first real rock concert I ever attended was Donna Summer. It was the summer of 1979, and she was touring in support of her Bad Girls album. The title track and the single, Hot Stuff, were in heavy rotation on top-40 FM radio.

Why did I choose the Disco Queen to be my first? It wasn’t because I was a die-hard Donna fan, although I did enjoy her music. It was more about female bonding.

I’d finally made it through a brutal six-month recuperation from bilateral ankle fusion surgery that included three trips to the O.R., a month in the hospital, and two months’ of missed classes during my freshman year of high school.

It was also the first time I’d ever attended school in a wheelchair. The first few days I drew lots of stares. Then I became invisible as most of my classmates looked right through me.

But not all of them. I was blessed to have a tight-knit group of loyal friends who didn’t care that my butt was planted in a 25-pound metal, vinyl and rubber contraption. Girls who weren’t bothered that I was making my way in the world in a seated position. Cool chicks who pushed me around school, joked and laughed and made me feel accepted.

My parents bought tickets for me and my crew, and drove the two carloads of us to Blossom Music Center in Cuyahoga Falls, OH to sit on the lawn and sing "toot-toot, hey -- beep-beep" at the top of our lungs.

Hey, at least it wasn’t Shaun Cassidy.

Since that time, I’ve attended a lot of shows in my chair: Elton John, Lou Reed, Iggy Pop, David Bowie, Bryan Ferry, Leonard Cohen, Robert Palmer, Eurythmics, Crowded House, Ween, Cracker, Mark Eitzel, Joan Jett – the list goes on.

(Of course, there are some I’d rather not cop to. Lionel Ritchie, Asia and the Spin Doctors come to mind.)

Sometimes attending a show in a wheelchair is more than a little risky. I recently saw the Gypsy punk band, Gogol Bordello -- at the Culture Room in Ft. Lauderdale -- while sitting in the pit right in front of the stage. Lead singer Eugene Hutz leaned forward and rained sweat down on me several times. That part was epic.

The risky part was being wedged in a mob that was pogoing, shoving and passing crowd surfers overhead. My wonderful husband anchored himself next to me, his body serving as a buffer between me and everyone else.

Other times, showing up in a chair is a major advantage. In October 1993, my husband and I saw Nirvana at Hara Arena in Dayton, OH. It was during hockey season, and most of the crowd had to stand on the plywood covering the arena’s ice floor. But some visionary had built a large raised, ramped platform six foot above the floor. That’s where we gimps and our companions sat, our sight lines gloriously unobstructed as we rocked out to Heart-Shaped Box, Lithium and Smells Like Teen Spirit.

Perhaps my greatest wheelchair triumph story was showing up to see the Replacements in February 1991 at the Newport Music Hall in Columbus, OH. I’d won admission to the show by calling in to a local alt-rock radio station. But when the door guy checked the guest list, my name was inexplicably missing. I looked up at him with the saddest hangdog gimp expression I could muster. My husband and I got the wave to go on in. Nobody got bent out of shape at that swingin’ party.

http://earthboundtomboy.blogspot.com/2015/05/rock-n-roll-gimp-girl.html

THE VIEW FROM THE BACK OF THE TROLLEY

ISOLATIONIST POLITICS

By Heidi Johnson-Wright

Trolleys are making a comeback. Not the trolleys on tracks like you see in old black and white photos of American cities from the early 20th century. You know, the ones bought up by the American car companies after World War II in order to increase dependency on the automobile.

 

No, I'm talking about small circulator buses designed to look like classic trolleys, right down to the uncomfortable wooden bench seats. They make frequent stops along short routes to give folks more transportation options. 

I'm all for options, as many as possible. Choice is good. But if you're a wheelchair user and you want to hop the sort of trolley I'm referring to, well, your options are fewer. As in, only one. There's only one spot onboard where you can sit, and that's at the back. Behind the last row of seats. And it gets worse. 

You see, I thought that 25 years after the passage of the ADA, we had worked out some of the issues. It appeared that newer buses were being designed to let people in chairs board in front via a ramp. And the driver could easily deploy the ramp at the touch of a switch without having to exit the bus. This is not true for the new trolleys.   

No, the trolleys require the driver to exit the vehicle, manually open a rear door, deploy a lift (not a ramp that remains stationary while you're on it), get the chair user on the lift, raise the lift up, manually close the rear door, board the trolley, walk all the way to the back, tie down your wheelchair, then return to his/her seat. All while your fellow passengers look at their watches and sigh.

But it doesn't end there. Once the trolley starts up again and hits the first small bump or pothole, you realize that the wheelchair seating is located behind the trolley's rear wheels. You know, the bounciest part of the vehicle: the spot that whips riders up and down. And on hot days -- and we have a lot of them in Miami -- the rear A/C unit mounted on the ceiling drips, drips, drips big drops of unpotable water down onto the wheelchair-using trolley rider.

After taking a ride on one of these trolleys, I wasn't sure which part of the ride motivated me the most to never want to ride one again. Was it the discomfort I felt at inconveniencing the driver or delaying my fellow passengers? Was it the slight vertigo from riding on a lift instead of a stationary ramp? Was it the big wet spot on my dry-clean only dress, courtesy of the A/C unit? Was it the bouncing that imperiled my tail bone?

No, it wasn't these things. It was sitting dead last behind everyone else onboard. Not because I think I'm better than anyone and should sit up front. But because of the way it made me isolated. And those of us who are disabled already get a bellyful of isolation, day in, day out.

Invitations to the homes of friends and family that have to be turned down because houses are rarely built without steps. Entering buildings at the side or the rear because even newly built facilities often have steps at the main entrance. Sitting in the "special wheelchair section" behind the last row of seating at a concert. Happy hours spent sitting three feet below and out of earshot of your friends because all of the seating at the bar is on stools at raised tables. And on and on...

A quarter century has passed since George H.W. Bush signed the ADA. Yet society still insists on constructing minimally inclusive, isolating built environments. On denying that disability is part and parcel of the human experience. On looking the other way when the largest minority group is told -- in so many words -- to either pass as non-disabled, or go sit in the corner.

It's time to come out of the corner and plant ourselves in the middle of the room.

http://earthboundtomboy.blogspot.com/2015/04/isolationist-politics-view-from-back-of.html