Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twenty second question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge.
Here is this week’s question:
What would you tell someone who has recently been diagnosed with your disabilities or disabilities that you are familiar with?
I have been asked to speak to people with new injuries or those newly diagnosed with disabilities requiring use of a wheelchair. It is important for them to hear a message of hope, to see life doesn’t end just because they now use wheels for mobility. It is possible to have a full, active life even with a disability. Attitude plays a critical role in a person’s ability to adapt to a new disability – well, to most of life.
I find it more important to speak to parents of children who have been diagnosed with neuromuscular diseases like mine. I regularly speak to parents affiliated with my local office of the Muscular Dystrophy Association (MDA). While I may not agree with the organization’s history of inspiration porn-filled Telethons, I believe it is crucial for parents to see and hear from independent adults who happen to have the same medical diagnosis as their kids.
I enjoy speaking to parents because too many times, parents are given information about disability in a medical setting. This means they hear things like:
Your child will never walk like a “normal child.”
Your child will be “wheelchair-bound.”
While your child should have a normal life expectancy, he will always rely on others for personal care.
* Language rant: What exactly is a “normal child?” Why is a child NOT normal just because he or she happens to have a disability? Why do medical professionals continue to use this language, which implies any child with a disability would not be as worthy as a nondisabled child? I may not be normal, but I promise my use of a wheelchair is the least of the reasons why I could be considered abnormal!
Back to topic…I am not a parent. I have never carried a child in my womb for nine months, dreaming of what is possible. I have not watched my infant while thinking, “Something just isn’t right here.” I have not had to watch medical professionals poke and prod my child, causing pain in the hopes of finding a diagnosis.
And while I have never experienced those events as a parent, I have forty one years of experience as a patient in a medical system which demonizes disability as something bad. I have heard well-meaning doctors and medical professionals say the following to my parents:
If you’re lucky, she won’t need a wheelchair for several decades.
It’s important that she walk as much as possible, even if she complains of pain.
Her ability to walk must be preserved for as long as possible.
How is a girl supposed to develop a healthy self-esteem as she transitions to using a wheelchair for mobility having heard comments such as those all of her young life? I attribute my attitude and my success to my parents, and I am not the only adult with a disability who feels this way.
In March, I was one of four keynote speakers (all of whom happened to have a disability) at the Rotary District 9830 OneCare District Conference in Tasmania, Australia. Each of us had different messages, but we all mentioned the importance of family support in our abilities to excel in our chosen endeavors. The three of us with life-long disabilities spoke about our parents, and the benefits we gained from having parents who let us fall, scrape our knees, fail, and get back up again.
When I walked, I had a very pronounced side-to-side gait. My balance on uneven surfaces like grass or a steep incline was tenuous. I fell all of the time. Eventually, I learned how to fall. Friends described it as watching someone crumple in slow motion. Thankfully, I never broke anything other than my eyeglasses – even when I fell with my violin in my hands.
My parents could have protected me from falling. They could have prevented me from going outside and playing in the yard with my friends. They could have kept me home from the field trip to the New York State Museum in elementary school when I fell and got a bloody nose as we boarded the bus. They didn’t have to let me go to MDA summer camp three hours away from home every summer for eight years. They could have stopped me when I left home at age sixteen to be an exchange student to Australia.
Instead, I learned everyone falls from time to time but you can pick yourself up again with help from those around you. I found creative ways to engage with my peers. I discovered I had endurance and stamina. I became skilled at telling other people how to best assist me when I needed help.
Parents need to let their children with disabilities explore their world, in whatever way they can. They need to help their children become strong advocates by involving them in their medical and educational decisions when appropriate. Parents are often hesitant to let others become involved in caregiving for their children. How else do they develop the skills needed to become self-directing adults?
I tell my story to parent groups not to make them feel bad about what they are doing as parents, but to encourage them to think of possibilities. How different my life would be now if I didn’t have parents who looked beyond a medical diagnosis and let me be a person.