Diving for A Better World
by Judith Snow, MA, January 2001
When I was seven months of age, I was diagnosed as having Spinal Muscular Atrophy, a form of Muscular Dystrophy. This condition has given me a lifetime of very weak muscles. I have never been able to walk, and as I grew up I gradually lost the use of my arms. Early in life I was labeled 'severely physically disabled'.
I remember my father telling me that some US doctors were killing babies who they decided were 'mentally retarded', saying that society should not have to bear the burden of caring for these children. Dad, who grew up in rural England, explained that in his youth children with 'mental retardation' were able to grow potatoes along with everyone else. They were a regular, accepted part of his community. But children like me were killed, he told me. People felt they did not have enough resources to support someone who would likely not be able to grow food.
I asked my father why he was keeping me alive. He said: "Maybe you will find the answer."
At that time I thought he meant the answer to "Why do people get Spinal Atrophy or Down Syndrome?" I was inspired to study harder in school, hoping to become a research scientist.
Later I thought he meant I would find the answer to: "Why do people discriminate against people with disabilities?" I became a rights advocate.
Now I wonder: "Can we get along with each other?" I work to support diversity in community.
When I went to high school, in the class one year before me, there was a student who was an enthusiastic diver. Beverley went to the Olympics, not just once but three times! This is a very unusual desire, to park your body upside down in water, over and over again every day for years and years. It can drive your parents crazy. It is very hard on your skin, your friends, and besides it’s very expensive!
Everyone in Pickering knew that Beverley would need support to carry on. Her parents would need support too -- imagine parenting a kid who has to get up every morning at 5:30 AM to practice -- for twelve years! Beverley and her family needed money, equipment, coaching, tutoring, emotional support, encouragement and the odd kick in the butt, transportation, friends and someone to make sure that she wasn't forgotten when it came time to invite classmates to parties and the prom.
Many in town chipped in to do odd jobs, set up fundraisers, cheer her on at events, etc. And, of course, government regulation of sport was developed through the years, diving associations were established, and paid professional coaching became available to boost the supports received from her family and peers.
People say that the ability to dive in the Olympics is a gift and that diving is a contribution. It isn’t only that so many people ‘helped’ Beverley -- Beverley provided lots of opportunities for all sorts of people to do something they loved to do. Their contributions might have been small, like buying a raffle ticket, or large like becoming a politician who pushed through regulations for athletics. Whatever the contribution, Beverley made a space for it by being who she was born to be. Beverley, by being the star, the athlete, the determined young woman she was, gave a huge gift to her community and her country.
In order to attend Pickering District High School -- having no use of my legs and little use of my arms and hands -- I needed:
- money, equipment, transportation, encouragement and the odd kick in the butt, coaching, emotional support, friends, someone to make sure I was included, government regulation, associations, paid help and informal support from my peers. My folks also needed support of many kinds to continue in their role as parents with a kid who was so different from, yet so very much the same as, their other three kids.
I say that Spinal Muscular Atrophy is also a gift!?! It’s a tough gift to carry through life but it’s a gift just the same. Just as Beverley, by being Beverley, opened pathways of contribution for thousands of people, Judith, by being Judith, invites others to do what they love and offer what they are moved to give in terms of support and resources.
About fifteen years ago I began to look for the gifts in the circumstance that our society calls ‘disability’. I listened to the stories of people who knew someone who doesn’t walk, or doesn’t talk, or doesn’t see....
Some things are said over and over in dozens of situations. People commonly say:
- "My daughter makes everyone around her feel happy."
- "When I’m with him I know I make a difference."
- "I have learned to appreciate my own abilities. When I see what she has to do to hold down her job, I’m inspired to do a better job myself."
- "He’s a good neighbour. He is always offering to do odd jobs and we can always count on him to help out at the yearly community yard sale."
At this time in my life I am an activist and social inventor, exploring with people ways to turn obstacles, limitations and problems into gifts and sources of contribution in their communities. I build my life from my relationships with family, friends and colleagues, my experiences and my dream for a gentle, peaceful world. -- But everyone else builds their life, too, from their relationships, experiences and the dream that gives their life meaning. I am at one time a unique and a very ordinary person.
I look forward to the day when we welcome, celebrate and support gifts - ordinary and unusual - so that our world will become a friendlier and more prosperous community of communities.