Raising consciousness about issues connected to being handicapped, particularly using a wheelchair & problems with disabled parking.

Posts tagged ‘disabled’

The Disability Contest

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Yesterday, my care provider dropped me off at the clinic before leaving to get lunch.  Without Susan to act as a buffer, a stranger quickly engaged me in conversation.

The attractive twenty-something brunette asked me if I’d been dropped off by a medical transport service.

“No,” I replied.  “My IHSS worker dropped me off.

“I wish I could get In Home Support Services,” the young woman sniffed.  “I’m epileptic, and they say I don’t qualify because I can dress myself.”

For those who don’t live in California, IHSS provides in-home care to those who need help with day-to-day living.  It’s designed to keep people such as myself out of nursing homes, which would cost the state more money in the long run.  The hours I’ve been granted each month cost about the same amount as one day in a nursing home.  Because of this program, I’m able to continue living in my own home, with a certain degree of independence.

Unfortunately, like many programs, people who don’t really need these services often see IHSS as a free, state funded housekeeping service.  And like many other social services, in recent years this program has been severely impacted by budget cuts.  At this point, only those in desperate need are able to meet the stringent qualifications.

“I’ve been waiting for the medical transport to pick me up,” the young woman continued.  “It’s been an hour now, and they still haven’t come.”

She glared at me, underscoring her resentment of what she considered my good fortune.  After all, not only did I possess a lovely motorized wheelchair, I’d been granted the coveted privilege of an IHSS care provider.

It never ceases to amaze me how many people are jealous of those in wheelchairs.  I’ve actually had people tell me they thought being in a wheelchair was romantic!  Judging from this young woman’s envious stares, she also coveted my medical equipment.

I realize not all disabilities are visible, and it’s impossible to judge the extent of need from a glance at someone’s exterior.  However, after suffering from seizures for several years during the 1990’s, I’m aware that most people who can’t drive due to seizures manage perfectly well by using public transportation.  Personally, I considered this woman lucky to be able to use medical transport services instead.

Since medical transports must schedule as many clients as possible into a given time frame, most won’t stop unless the rider is sitting outside when they pull up.  When I tried to use the local services, they all required clients to sit outside for a half hour prior to the scheduled pick-up time, and up to half an hour after; they can come at any moment within that one hour time frame.  I’m too frail to withstand the weather that long, and recurring pressure sores also limit the amount of time I’m allowed to sit up, so I’m not able to use medical transport services.

It seemed ironic that someone young and relatively healthy – at least, in comparison to me – was clearly so envious of the ‘perks’ I’d been granted.

Last month, when I went to an appointment with my pain specialist, an older woman expressed similar sentiments about my chair.

“That’s a nice wheelchair,” she remarked.  “What did you do to deserve that?”

Her words implied that I’d deliberately set out to damage myself in some manner, just so I could obtain a fancy ride.  I might’ve believed it was simply a case of poorly chosen words, but her snippity tone left no doubt in my mind that she meant exactly what she said.

Once again, I faced someone who considered me a rival in a contest of disability.

I summoned my dignity, responding  in a quiet, matter-of-fact tone.  “I have MS.”

“Oh, you must be voting for Romney, then,” she said.  “His wife has MS.”

I was flabbergasted by the assumption that I’d cast a vote for the highest office in the land, simply because I shared an illness with one candidate’s spouse.

Why do so many people assume that sharing the same condition automatically binds the disabled together?  To me, such thinking is dehumanizing.  I’m not my disability; I’m an individual who happens to suffer from MS.

I wanted to tell this woman that Mitt Romney’s wealth gives his wife access to the expensive treatment denied to me by Medicare.  My doctor informs me this medication is the one thing which might improve my condition, but dues to its high cost, Medicare refuses to allow it for those like myself.  Given that Romney opposes any plans to help the common taxpaying MS sufferer to obtain that treatment, suffering the same disease as his wife isn’t enough to win my vote.

One recurrent prize in the Disability Contest is handicapped parking.  Because I have to use a ramp to unload my wheelchair, I need the crosshatching of the handicapped parking space.  It’s not uncommon for such parking to be at the end of a row of spaces, with regular parking spaces often situated directly in front of a building’s doors.

Yet many people who aren’t in wheelchairs will bypass those regular, closer spaces in order to park in the handicapped spaces even though it means they must actually walk further!  For those individuals, it’s clear mobility isn’t the real issue; for them, making a point of the fact that they’re disabled is the most important thing.

When I first started using a wheelchair, I was still able to drive.  One day, I was turning my van to park in a handicapped space with the crosshatching on the wrong side; I had to back into the space in order to unload my chair.  A woman pulling into a space directly in front the dentist’s office, where we were both heading, quickly whipped her compact car out and cut me off to steal the handicapped space.  I leaned out the window to tell her I was in a wheelchair and needed the space to unload.

“I’m disabled, too,” she snapped.  Then she actually skipped down the sidewalk to the enter the office.

I’m not certain where she got the placard, but I’m fairly certain it wasn’t really hers.  After parking in another space across the complex, and struggling to wheel myself uphill to the office – I was still using a manual wheelchair then – I found the woman loudly explaining to everyone in the office that she’d cured herself of chronic fatigue syndrome by drinking two gallons of red wine per day!  When the receptionist, who’d seen the entire farce, tried to shame the woman by telling her I have MS, this individual suddenly changed her story.

“I have MS, too,” she declared.  “But I discovered that red wine cures MS.  The secret is, you have to drink two gallons a day.  Any less than that, and it won’t go away.”

Maybe someone should let Ann Romney know the magical effects of red wine.  Then her husband won’t have to spend so much money on expensive medication.

I’ll never understand why so many people view those of us with disabilities as some sort of rivals.  I only know that having a physical defect  isn’t a contest.   As long as self-centered people who lack compassion insist on competing with those of us who are struggling to exist with disabilities in an able-bodied world, no human being has any hope of winning.

The Amazing Dick Maxwell

When I went back to college in the 80’s, I needed a way to earn money without wearing myself out, or locking myself into a schedule that conflicted with my changing classes.  Hoping to pick up odd jobs, perhaps running errands, I placed an ad  in the local paper: “Almost Anything for a Buck!”

Not long after, I received a call from a gentleman named Dick Maxwell.  He was second in command of OSU Office of Disability Services, a retired Marine – there’s no such thing as an ex-Marine – who’d spent several decades as a champion of quadriplegia.  Like many handicapped individuals in need of extraordinary care, he sometimes found it difficult keeping care providers in his employ.

Dick thought my ad indicated I was a woman willing to give just about anything a try.  He was right.

My mother, Norma Pfaff Michel, was a juvenile diabetic whose condition turned terminal when I was seven.  My father, Dr. Don K. Michel, expected me to do my part in caring for her, so I’d gotten excellent early training in home health care.  This experience made me perfect for Dick’s needs, after a little special training in the particulars of caring for a man with severe paralysis.

Within a few weeks, I withdrew my ad, and began working exclusively for Dick Maxwell.

Dick taught me that his handicap was really only a small part of who he was.  He’d been born just a few blocks from the OSU campus, and except for his time in the Marines, he’d spent most of his life living in the heart of Columbus.  He’d lived a full, very busy, and productive life.  Whatever he decided he wanted or needed done, Dick found a way to do, and he never let anything stop him.

A little thing like a spinal cord injury was just a bump in the road for a warrior like Dick.

He’d been in college when the accident occurred.  Dick was a Phi Delt, playing fraternity football when he was injured.  It was the last play of the last game of the season.  Dick had possession of the ball, and was heading down the field when he was tackled.  As usual, the opposing team piled on top of him as he was brought down.

Dick was holding the ball to his chest when he fell.  The ball acted as a fulcrum.  Under the weight of the other players, his spine snapped between his shoulders, leaving him paralyzed from his armpits down.

In an instant, this tough Marine found himself thrust into a new way of life.

A few weeks later, as he was recovering in OSU hospital, John F. Kennedy was assassinated in Dallas.  Dick told me JFK’s death hurt him more than his physical injury.  Even then, he considered a broken back to be a small event in the larger scheme of the world he lived in.

Rather than wallow in self-pity, Dick was determined to remain as independent and productive as possible.  Many of the tools that mobility impaired individuals use today can be attributed to Dick Maxwell’s refusal to let others do for him.  He helped design arm braces that allowed a variety of utensils to be attached to them, and he worked to optimize his control over his hands so that he could once more write, feed himself, and drink from a cup.

Many people give up when facing a future constrained by quadriplegia, but Dick never considered surrendering.  He told me he believed it was his fate.  Just before the accident, he’d been preparing to graduate from college, and was slated to do a tour of duty in Vietnam.  Dick felt certain that, had he not been injured playing football, he’d have suffered a similar injury serving his country.

As far as he was concerned, God had given Dick a mission.  It was his duty to make the world a better place for those with physical limitations.   He’d been assigned the job of trailblazer, and it was his job to set an example.  Suicide was not an option.

Instead, Dick overcame every setback to finish his degree and graduate.  He found employment with OSU, and worked his way up to a position of responsibility where he could do everything in his power to encourage others to succeed, despite what many would consider insurmountable obstacles.

His very presence in OSU Disability Services was a testament to what those with disabilities can accomplish if they set their minds to it.  Dick had no patience with those who used their handicap as an excuse to fail; he scorned those who clung to self-pity.  He never viewed himself as a quadriplegic.  Dick was just a guy, like everyone else.

If there’s one thing I learned from him that I wish I could make the world understand, it’s that a person with a disability is not their disability.  Handicaps don’t define a person.  A disability is  just another characteristic, like eye color or height or how you dress.

Dick was never “the quadriplegic”.  It’s more accurate to call him “the Marine” than anything else.

Because he wanted to live indepently, Dick became involved in the construction of an apartment complex for those who’ve become chairoteers.  This wheelchair accessible housing was dubbed ‘Creative Living’, and it’s still operating in central Columbus, Ohio.  It’s a model for accessible housing, giving those with mobility issues a chance to live a fully functional life.  Publicity about Dick’s lack of housing was the inspiration for this organization.

Dick also worked hard to bring the ADA into being.  He fought to have curbs modified with ramps so those of us on wheels don’t get stuck at the edge of the sidewalk.  Dick Maxwell insisted on living in the mainstream of life, and allowed nothing to push him out of the current of progress.

Above all, this man fine-tuned his sense of humor.  On one occasion, I remember taking him to pick up his updated disabled parking plates.  The clerk spoke to Dick in a very loud voice, pronouncing each word carefully, as if being in a wheelchairiot was a sign of deafness.  I got a little irate at her behavior, but Dick told me to chill, and pretended he couldn’t hear her!

By the time we left, it was clear the girl was quite proud of her skill in dealing with her latest customer.  I laughed all the way back to the van.  With Dick, the joke was on her.

When we travelled in the van, I may have held the wheel in my hands, but it was Dick who was actually driving!  He’d monitor my speed, making sure I maintained exactly the right pace, telling me when to change lanes, and figuratively holding my reins during every maneuver.  Some people might have called him a backseat driver, but I think his tutelage improved my driving skills.  The only time I got annoyed was during a very intense night drive through the hills of southern Ohio, on a visit to his dad’s.  His comments were breaking my concentration, so I finally told him to shut up.

Luckily, Dick was big enough to realize I needed a little space, so he didn’t fire me for talking back!

Dick Maxwell was always a man in a hurry.  His signature phrase was: “Hit it and git it!”  There’s no time to waste when there’s so much to accomplish.  Life’s too short to squander.  And a disability is just another part of life.

http://creative-living.com/history.html

Chairioteer of the Wheelie Tribe

Never thought I’d become a blogger, but here I am: a small voice in the web wilderness.

My purpose is to bring the gift of awareness to those who are limited by their able-bodied lives, and present a window into the world of disabilities.  Many individuals cherish prejudices about those of us with disabilities, which are frequently nutured by television programs that don’t present a true depiction of the issues individuals with disabilities face.

Although I can’t speak for everyone, nor every type of handicap, I’ve got lots of experience with the World of Wheelchairs (or chairiots, as I like to call them).

My main gripe: those who illegally use disable parking spaces.  I’m hoping to change the law here in California so that illegally parked vehicles can be easily towed, to discourage the misuse of parking that rightfully belongs to those who truly need it.

I don’t pretend to be politically correct, so if you don’t agree with what I say, feel free to read someone else’s blog.  I intend to call ’em like I see ’em.  For example, if you have difficulty walking due to obesity, don’t expect me to feel sorry for you.

On the other hand, I’m not asking for pity because of my disability.  (I have multiple sclerosis.)  I don’t want pity, but I do request compassion.  There’s a difference.  With pity, one person is looking down on another.  With compassion, people are equals.

If you believe disabilities are God’s punishment for someone’s sins, we obviously don’t worship the same God.  The Creator I’m familiar with doesn’t punish missteps by making someone ill, or allowing them to be injured.  If you think I’m disabled because my faith isn’t strong enough to allow God to heal me, let me remind you: they’re called miracles for a reason.

If you believe disabled people are looking for any easy ride on your tax dollars, you clearly have no idea of the struggles those of us with physical limitations face.  By the way, I’m collecting my father’s benefits; he was a doctor who never lived to collect a penny that he paid in, & I couldn’t use the tax dollars he payed into the system in my lifetime.  My mother also died young; she & I both paid in, so I’m not spending any of YOUR money.

If you believe I’d get all better if I just followed whatever quack cure you believe in, forget it.  Herbs/juicing/positive thinking/light therapy/ionized water/exercise, or whatever, is not going to cure me.  I’m not being stubborn, it’s just reality.  None of us are immortal, and magical thinking stems from fear of death.  If you can’t face your fear, then get out of MY face.

If you believe I’m a whiner because I expect people to grant me what is mine under federal law, then you have no heart beating in your pinched little chest.  The Americans with Disabilities Act (ADA) was passed to guarantee that people such as myself have free passage in the world.  Just because your legs function and mine don’t, doesn’t mean you own the planet.

Often, I feel like a Native American living on a reservation.  (And I’m part Cherokee, so don’t call me racist for saying that!)  The law grants me a limited amount of space: parking with cross-hatching so I can unload my wheelchair, ramps so I can get up & down curbs, extra-wide bathroom stalls so I can eliminate without hassle.  When the able-bodied hog the small piece of the world that’s mine by law, I get pissed.

How would you feel if I took your property?

If you only had a tiny space to live in, wouldn’t you defend it?

Don’t make excuses, cos I’ve heard them all before.

“Oh, I was just going to park here for a minute while I run in to get one little thing.”

“I didn’t know the cross-hatching was part of the handicap space.”

“I love using the disabled shower because it makes me feel like a princess to sit on the padded stool with the hand-held shower wand.”

“My son thinks it’s fun to use the handicap stall, and he’s just a kid, so I don’t have the heart to tell him ‘no’.”

I don’t expect anyone to read this blog.  If anyone does, it’s probably going to be someone with a disability, because the able-bodied usually aren’t interested, so I’ll just be preaching to the choir.  Don’t want pity, just want others to understand what it’s like to have to deal with limitations on a daily basis.  I don’t want to be famous or draw attention to myself.

All I want is what’s rightfully mine, and what’s fair to everyone.

And most of all, I want to mend broken perceptions, free small minds from being cooped up inside walls of  ignorance, and open doors that should never have been closed against me & mine in the first place.

I’m a wheelie.  That’s my tribe.  And as long as I have a voice, I intend to use it for the benefit of those who may not have the ability to speak out themselves.