Amy Dunaway-Haney is the 2003 recipient of the Muscular Dystrophy Association National Personal Achievement Award. Like me, Amy has Limb Girdle Muscular Dystrophy and uses a wheelchair. She teaches high school spanish, and takes her teaching seriously! Check out her Spark Enthusiasm website. In an MDA publication, I found an interesting quote from Amy;
"We have our savings account, my husband and I, and then we have our van/wheelchairs account," she explains. "People think that the hardest part of having muscular dystrophy is not being able to be a cheerleader and not being able to run. But for me, one of the hardest parts is just being able to afford it."
"If you want to be a vital, working person or be out and about, doing your thing, it takes a lot of money," she adds. "You either have to be really impoverished or you have to be really loaded just to get around and be able to work and do all the fun things you'd like to do."
My story is similar. In 1998, when I first began using a wheelchair full-time, I needed extensive home modifications, an electric wheelchair and independent transportation for work. Without financial help from my state office of vocational rehabilitation, the transition and continuation of employment would have been impossible. Even with that help, my cost was over $22,000. My 2 boys were in their early teens at the time, and ours was and continues to be a one-income household. 11 years later, I’m in the same situation; new van, more home modifications and an expensive rehab-style wheelchair. Even with financial help, I’ve had to incur long-term debt both times in order to pull this off. Plus, I pay $60 per week for attendant care and all repairs to adaptive equipment; in addition to a mortgage payment well past my retirement age.
Again, Amy and I both love our work and want to continue working and remain contributory to the system. The alternatives are long-term disability, Medicaid and fully paid attendant care; unnecessary extraction from the system rather than contribution! As Amy said, you need to be either impoverished or wealthy just to get around.
Neither of us are complaining, but the fact is that being disabled is expensive. The cost to society of keeping people with disabilities working is far less than the cost of the alternatives. People with disabilities generally want to be able to pursue the same opportunities others can. Right now, that pursuit is costly! Systemic change is necessary.