May is "National Mobility Awareness Month," according to the National Mobility Equipment Dealers Association (NMEDA), which held a contest for the second year in a row to provide three accessible vehicles to individuals with disabilities. This contest is to identify a "a local hero" and to "raise awareness of the mobility solutions available in your community." According to the press release, to qualify as a "local hero," entrants had to submit either written or videotaped stories of how they are "triumphing over their mobility issues through their academic and career ambitions, as well as their family and local community contributions." Caregivers, friends and family members were also welcome to submit entries.
Thousands of disabled people entered this contest, including a good friend of mine. People were asked to vote once per day for their favorite entrant to win a vehicle. I wished all of them luck; who wouldn't love to win a brand new vehicle, regardless of disability status? I didn’t enter the contest this year, and I won’t any year; or any contest like it. You see, NMEDA is an organization that promotes the companies that design, produce, and sell adapted and modified vehicles. Vehicles just like the one in my garage. The one that cost almost $80,000 in total with the conversion (lowered floor, kneel system, and ramp) and modifications including an 8-way power seat and high tech hand controls that enable me to drive with one limb. Even though it often breaks and will soon need to be replaced, I already have an adapted vehicle.
I learned to drive when I was 17. It felt like I had to wait forever, when my friends were getting their learner's permits at age 15. My mom drove a huge Ford Econoline with a raised roof and wheelchair lift for years to transport my power wheelchair. When my parents weren't transporting me, I rode the "short bus" to and from school; at times in my childhood, this meant getting picked up at 6:00 AM and having to ride the bus for miles around rural areas while all the other disabled children were picked up.
For the first vehicle I drove, my parents purchased a used Dodge minivan. The ramp was in the back and two wheelchairs fit in addition to the four regular seats. In order to afford to learn to drive, I was fitted for a prosthetic arm. The van was equipped with simple right angle hand controls, which cost us about $500 out of pocket. You see, insurance won't pay for hand controls, but it will cover (at least in part) for prosthetics. I drove this way for about 7 years. It was do-able, but physically very difficult. I had trouble getting the leverage I needed to apply the gas pedal and relied heavily on cruise control. When I was in graduate school, the van kept breaking. The ramp would stop working, the door had continuous problems, and insurance would assist with none of it.
In order to complete my graduate degree program, I needed my own transportation. I could not rely on public transit to get to campus and my clinical rotations in the community. It was simply too unreliable and the routes and schedules too rigid. My family assisted me by gathering up enough money for a down payment on a new van. I opened a case through state vocational rehabilitation. My family contributed a large down payment on the new van, vocational rehab paid for the hand controls and conversion, and I was able to take on the monthly payment and maintenance. The total cost of this van was almost $80,000 in the end. I can drive much more easily with this set up - no cumbersome prosthetic; a seat that turns for easier transfers. I've had the van for almost 8 years now, and it has over 170,000 miles on it. I have put well over $10,000 in repairs into it. I take it everywhere. I drive to work, I take my 18-month-old son to and from daycare, and I run errands with it. When going places with friends or family, or taking a road trip, we always take my van so I have my power wheelchair and maximum independence.
I know soon it will be time to replace the van, and I dread it. I'm not really sure how I'm going to afford it. There is no assistance with such an expense for people like me. The resale worth of one of these vehicles used is very low, so I can't count on a good trade-in value. I do not believe that I am eligible for vocational rehabilitation assistance any longer because now I make too much money (they helped me get employed but don't believe it is important to help me stay employed); we'll find out when I meet with my newly assigned counselor at the state vocational rehabilitation program later this month. I will probably have to independently finance a vehicle that will cost almost what I earn for an entire year. The truth is, I must do it. My independence, my professional life, and my personal needs depend on it. Even though I have the same expenses as my able bodied peers, like buying a home, health care costs, a car payment, and paying for childcare, the expense of vehicle modification is in addition to that. The worst part to me is that the modifications on these vehicles break all the time. The ramp, door, power seat, and hand controls on my van have broken countless times, just from routine use. There is very little competition in the market, so the prices for the adaptations and repairs are astronomical. When equipment breaks, my independence is yanked away until it is fixed. In my case, the nearest repair place that is authorized by the manufacturer of my modifications to repair my van is over 80 miles from my home.
So what does this have to do with NMEDA's contest? And why didn’t I enter? If "National Mobility Awareness Month" was really about mobility awareness, it wouldn't be a bunch of pity stories trying to get votes to prove one has "overcome" disability. The disability pride community is speaking out against this type of objectification; we aren't here for anyone's inspiration. We are asking that individuals and organizations stop "othering" us and making it seem like doing everyday things is somehow extraordinary simply because of the presence of disability. All that this does is reveal prejudice: if the fact that I have a job is amazing to you, then you have low expectations for people like me.
If "National Mobility Awareness Month" was really about mobility awareness, it would include this type of information:
1 - The public para-transit systems (public buses and transit that is accessible to those with disabilities) in the U.S. are TERRIBLE. People with disabilities can't count on them due to a multitude of problems, including inaccessibility, segregation, unreliability, and lack of flexibility. 2 - The average person with a disability could never afford the adaptive technology NMEDA promotes. 3 - The market is such that these technologies do not have to hold up even to routine wear and tear, and repairs and replacements cause additional financial burden to the consumer. 4 - Health insurance does not cover adaptive driving equipment.
If NMEDA really wants to give away a vehicle, draw a name out of a hat. Base it on actual need like income level. Or skip the giveaway all together and work on making the products more durable, with better designs, at affordable prices.
The things I do with my vehicle are hardly inspiring. I do regular tasks for myself and my family just like anyone else. The fact that I came from a family that could afford to help me learn to drive and purchase a vehicle isn't inspiring, either. It was just lucky for me. Winning a brand new modified vehicle would be lucky, too. My friend didn't win a van; I don't see how she is any less deserving than anyone else. She works hard and lives a full life; I guess that just not inspirational or sensational enough. I'm not sure what kind of story is needed to get enough votes, but I suspect it has to be a pretty pitiful one; that's not what my friend is about - the LAST thing she'd want is people feeling sorry for her because she's disabled. The way I saw it, she, and thousands of others, simply want freedom and autonomy. Lucky for NMEDA, thousands of disabled people and their loved ones fell into the trap this year, lured by the chance of a promise for greater independence, to sell their stories for the profit of multiple corporations (NMEDA itself is non-profit, but it's an association of businesses that make huge profits off of disabled people). All the while, no one is talking about or advocating for a better system where the kind of independence that driving brings is no longer reserved only for the rich, or the lucky.