A few years into my teaching career, I met Jack. Here was a kid who was bright, tough, gentle and born with spina bifida. He was in my class, a known entity among his peers and my first real education with students with a disability. Jack was, and still is, very capable, and I became fascinated with him.
For so long, I saw the wheelchair as an incarnation of sadness and pity, and here he was playing wheelchair basketball, sparks flying as he and the others on the court careened, flipped, twisted, rebounded, shot and scored. I was dumbfounded that I was not living as full as he was and others like him in the school. They made me see that their disabilities were just one aspect of who they are.
Then I met Kathleen Downes. Her disability kept her from slamming around a basketball court, but never has anyone spoken to me so clearly about her life as a young person. At first I thought maybe her disability was blinding me, in that I saw her brilliance “in spite of,” but I quickly learned that her disability was an essential part of her brilliance in the way it shaped her, and ultimately how she shaped me. There is no doubt that she would have found her voice whether or not she had cerebral palsy, but that she has been so incredibly articulate about who she is kept overwhelming me with every piece of writing she handed me.
She would share the joys and frustrations that her disability brought with it, while finding ways to laugh at all of the challenges she faced. Never has any student been able to put into words so clear a picture, so firm a grasp of who she is, as Kathleen has. My greatest education came from just listening to what she has had to say. Here are some of the lessons I’ve learned:
1. Embracing your disability shapes you like talents do: if you ignore it, it will be a regret, but if you own it, you can create a wonderful life. Redefining or breaking norms is essential for growth, no matter who you are.
2. The world can be an unforgiving place. More often the people around you are worse than the disability, not because they’re evil, but because they don’t understand. Your friends and family have grown up understanding who you are, but people less accustomed can harbor a xenophobic fear of disability and at the very least, forget their manners, and at their worst, they can be really hurtful.
3. If you are able to see past the chair, you won’t have to awkwardly ignore it. The chair is there, and while it has shaped the person in it, it is also not something to be desperately ignored (the person sitting in it knows he or she is sitting in it), and it is OK to talk about it like you would anything else in normal conversation. Normal conversation. The chair is also not an excuse for interrogation.
4. And I have learned about a million other things, but mostly, Kathleen has reinforced to me that my greatest asset was just to be myself, and that was all the special treatment she wanted. Yes, she may need my help with a door, or a spoon, but that doesn’t make me a saint. It just makes me normal.
Like many life lessons, this quickly became a lifestyle, and I am grateful, because as Kathleen mentioned in her story, “The School Assignment That Inspired Me to Feel Proud About My Disability,” there’s been a twist of fate. My son was born with Duchenne muscular dystrophy and was first diagnosed a few of years after I met Kathleen. While I was upset because it is a progressive disease, I never grieved his having a disability. It was a simple matter to imagine new dreams and different futures. I learned so much about the fullness of living with a disability (and some of the woes, but just try to show me any life without a woe) through my friendship with Kathleen Downes, Jack and others.
There is one thing that has been weighing heavily on me. Another student I had many years ago also required a power chair. David Nieves. He was very thin and sickly. He was in my class. He would come to the wheelchair basketball games, but he couldn’t really hold a ball. I regret that I only just learned that he had Duchenne muscular dystrophy (over 10 years later). I regret not learning more about this young man before he passed away. But I will say that I learned an invaluable lesson.
Everyone will know my son in his school. Everyone will know what Duchenne muscular dystrophy is, and he will not exist in de facto isolation because of his disability. For this, Kathleen Downes, I am deeply grateful, for you have taught me about living with a disability like no one else has. You have given such a powerful voice to those who are not comfortable or able to speak about those challenges people with disabilities face. You have opened my eyes to the amazing life we have ahead of us, disabled or not.
You have shown me how best to articulate my advocacy. You have helped me be a good teacher, a good friend and a better father to my son by teaching me about the fullness of life with a disability. Only The Mighty heart within you could be so big to hold us all.
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