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.