I always pictured myself waiting to write my autobiography until there was a cure. I’d open the book running to Tom Petty’s “Free Fallin’,” singing along in my head, while my legs became visibly strong like Forrest Gump’s did.
But that isn’t going to happen. I have a rare disease called Friederich’s Ataxia, a neuromuscular degenerative condition without a cure. So instead of writing a typical memoir with a beginning and an end, I write, I guess, to vent. Most importantly, I want others to understand what people with disabilities go through everyday so that they might begin to act in more sensitive ways.
Like most young people, I want to date, marry, start a family and live independently. I attend UW-Milwaukee, where I am preparing for a career in writing. Because I have plans for my future, I don’t want my disability getting in the way. Still, every day brings new challenges and frustrations that most people never have to think about.
Take, for example, transportation. I am in a wheelchair and cannot drive, so I must depend on others to drive me around. My family and friends are generous, but every request I make feels like an imposition.
When I do get a ride, the relatively few handicap parking spots often present a parking problem. Far more frustrating is when someone takes one of those spots without need. Take, for example, the Walmart on Capital Drive I visited recently. People without handicap needs had claimed the spots I so desperately need. They made a statement with their choice: “I have the ability to use my legs, but I choose not to.” I would give anything for the ability some people choose not to use.
Milwaukee is the only city in Wisconsin that offers door-to-door buses specifically for people with disabilities. MCTS provides door-to-door service, but only for medical appointments, so when I need to go elsewhere — whether to UWM or Bayshore Mall to be a regular twenty-year-old — I sometimes take the handicap public bus, known as Transit Express. But Transit Express is under-funded, so it lacks a sufficient number of buses and trained drivers, and I’ve been late to class due to a delayed bus.
Perhaps worst are the problems that arise when I’m in desperate need of a public bathroom. I must first find a bathroom that allows room to enter with a wheelchair. Narrow doorways, sharp turns and tight spaces can all bar my entry.
When I do find one and relief is in sight, the handicap stall is often occupied by — you guessed it — a person with no evident disability or special need for the space. Maybe you imagine I can wait or take one of the other unoccupied stalls. But that’s impossible since my wheelchair doesn’t fit in a regular stall, and I can’t walk into it. Most bathrooms also lack railings that help with transfers. I’ve had to hold the toilet paper dispenser hoping it doesn’t break or place my hands on the toilet seat to steady myself if there isn’t a railing.
Bathrooms aren’t the only public places where it’s hard to maneuver a wheelchair. Most stores and restaurants advertise their accessibility (it’s the law), but they may want to measure how true that claim is. Shelves and clothing racks are often too close together or placed too high. In some shops I can’t reach the counter or see the cashier. Some stores don’t have accessible doors. If I can’t open the door myself, I wait for a good Samaritan to come by. Some of my favorite downtown Milwaukee restaurants prevent my entry with a single step.
These examples focus on the unfairness and difficulties disabled people often experience, but what is perhaps more painful is the effect on my sense of identity.
Many people stare at me, or only notice my wheelchair. Some quickly look at my legs — as if my legs display my disability. Or they pretend not to see me at all. We have a president who has openly mocked people with disabilities.
All these reactions make me uncomfortable. What I’d like is for people to recognize me and not be afraid to talk to me.
These daily frustrations are magnified by my current concerns over healthcare. With the high costs, I constantly worry about my future. Our president continually threatens to cut Medicaid, and he refuses to support universal healthcare. The House and Senate are stalled on the Affordable Care Act.
And at the moment, Medicaid in the state of Wisconsin refuses to pay for the physical therapy that would help slow the progression of my disease, arguing that adaptive devices are sufficient — for helping me in the bathroom, getting into bed, etc.
But here again there are problems: I live in an apartment in suburban Milwaukee, so I can’t build add-ons or installations without penalty to our damage deposit. The biggest issue is this: I cannot afford it. Everything involves out-of-pocket cost that stretches my budget. I simply can’t afford to move to a more accessible house or apartment.
My future scares me the most. Someday, I’ll lose the ability to stand or move my limbs voluntarily. I won’t be able to walk, talk or eat. The lifespan of a person with Friedrich’s Ataxia is about 30-40 years, and I am now in my twenties. Not one day goes by without a thought for how fast my life will go.
You could help me and other people with disabilities in many small but important ways. Respect dedicated handicap spaces. Tell stores and other businesses when you notice they are not accessible. Always offer to help when you see a person with disabilities struggling.
Realize that I am a person first, before my disability, and talk with me like you would with anyone else. Be sensitive to my concerns. See me.