Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the fourth question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later. Here is this week’s question:
Do you think that it’s more important to emphasize medical treatment, life skills, community integration, or a combination of these things?
I think all of these things are important, and not just for people with disabilities. I rely on modern medicine to keep me healthy, and to provide the technology and adaptive equipment I need to maintain my independence. But without the skills I have acquired and the experience of lifelong integration, I would not be a successful professional and advocate.
I have only known life in a “mainstream” or fully integrated environment. I did not attend a special school, and was never in a self-contained classroom. Until I started attending a summer camp sponsored by the Muscular Dystrophy Association, I did not know of any other person living with a neurological impairment besides violinist Itzhak Perlman.
I have said many times, and will most likely continue to say, how blessed I am to have been born into the family I call mine. My parents made no exception for my disability, and expected me to perform chores. I set the table, washed the dishes and learned to cook and sew just like my other sisters. My first job, at the age of fifteen, was as a dressmaker’s assistant for a local seamstress. I participated in school activities with my peers – choir, orchestra, concert band, marching band, student council and yearbook.
Because I was always fully integrated in my community, at an early age I learned how to adapt and adjust to daily situations in a world not always designed for my abilities. As a result, I am an excellent problem-solver. Dr. Mark Ylvisaker, one of my incredible professors in college, used me as an example of a person with well-developed executive functioning skills. These are the skills which help us plan, organize, focus attention, juggle competing priorities and remember instructions.
I use these skills unconsciously. I can illustrate how this impacts my daily life by describing what happens when I walk, or roll, down the sidewalk. As I move, I am constantly scanning the ground ahead for potential obstacles, seeking the most level path. I continually make minor adjustments to my trunk and hip muscles so I maintain an upright posture as my chair flexes over uneven sidewalks or tree roots. I do my very best to avoid running over toes while I weave in and out of pedestrians who are slow, avoiding the walkers who just stop for no reason at all in the middle of a sidewalk (WHY?!), or the oncoming pedestrians who don’t see me and cut into my path thinking there is an opening they can use themselves to overtake a slow walker. Some day I’ll invent a word for the shock they exhibit when they realize I am there.
What do you do when you walk down the street? My best friend says she automatically walks to the wheelchair curb cuts while crossing the street even if I am not with her because she is so conditioned to look for them. Community integration changes everyone, not just those of us with visible disabilities.
While community integration has been valuable to me (and many others), I cannot discount the technology and medical advances which have improved my quality of life. I rely on my customized wheelchair and its elevating seat base to independently transfer onto the toilet. My fully electric hospital bed means I do not require assistance during the night for bed mobility. The Bi-Pap machine I wear at night compensates for my weak respiratory muscles which cannot maintain adequate oxygen levels during sleep. I am alive because of the technology used to revive me after a near death experience in 2013.
In the disability community, some talk of a debate – cure vs. care. There is no cure or treatment for my disease. There are many research studies and trials involving mice and gene therapy. I am not waiting for a cure. But I know people with other neurological diseases who have improved quality of life due to medical treatments. I am happy for them, without longing for a cure for myself. Disability, while not the most important aspect of who I am, is definitely a defining characteristic. I wouldn’t mind halting the progression of my neuromuscular deterioration, however I’m not holding my breath waiting for a magic pill to take disability out of my everyday life.