How do you use the restroom?

the transparent lifestyle of living with a disability.  

I imagine some of the most difficult parts of being famous would be the lack of privacy and being constantly pegged with questions that no one should have to answer on a regular basis. Of course there are coaches and professionals who specialize in shaping the public perception of celebrities. Unfortunately, those coaches do not exist for those with disabilities. Though we may not be the feature of US Weekly or some other gossip column, people with disabilities have to prepare themselves to answer questions that at times can be absurdly personal.

People are bold. Every year in elementary school would begin with my mom coming into class with a book explaining what Spina Bifida was and would attempt to field questions from my inquisitive classmates. The first question would normally be some variation of if I was literally born with a wheelchair. Within a few questions the money question was inevitably asked: How does he go to the restroom? My mom was a master. For what should have been an embarrassing question, my mom answered confidently with either just like you, or, my favorite, how do you go to the restroom? I favored the second one because it usually made my classmate realize how personal of a question it was. As I got older, the questions got more specific. What is Spina Bifida? Can I catch it? How do you drive? How do you get dressed? Do you use a special toothbrush? Over time, the questions became repetitive and I became quite good at answering them.

Until around middle school, my parents opted to keep me separate from the disabled community. In their mind, the world would not make any special arrangements for me and neither should my parents. I believe the term for this parenting technique is called “mainstreaming.” Mainstreaming had a few big perks that would stay with me even as an adult. The first was I was never put off when my environment wasn't accessible. No ramp? Crawl up the stairs. Cant fit in the desk? Figure it out. A lot of my elementary school years were exactly that: figuring it out. It really was not a big deal because, in a way, thats what my friends and classmates were doing.

In 1996 the Paralympic Games (not the same as the Special Olympics, but that is another issue entirely) were held in Atlanta. Ill never forget it, because it was when I was introduced to the disabled community. I was surrounded by people who were “just like me” and were doing things that I did not even know were possible. As a result of mainstreaming, I had only been introduced to programs and sports for those without disabilities, but were adapted slightly so that I could merely participate. For example, when I played T-Ball, I would get to swing at the ball, but because it was played on a dirt field, someone else would run the bases for me. I would play basketball in PE, but no one was allowed to guard me, and everyone would clap when I shot and the ball ended up anywhere near the goal.

The Paralympic Games were different. These games weren't made in spite of those with disabilities; they were made for those with disabilities. Athletes had to dribble in basketball, and it was a high contact sport. Athletes would often fall out of their chair and yet the game would go on. I think this was when I started believing I could live with my disability instead of in spite of it.

A year or so after the games, two non-profits were formed: AAASP and BlazeSports. Both had the intention of introducing kids with disabilities to sports to promote a healthy lifestyle. I remember being surrounded by other youth with disabilities to be very jarring. No one asked the usual questions. No one was put off by my disability. They had an entirely new set of questions. Why don’t you have a sports chair? You wouldn't expect your sister to run in sandals would you? Why are you wearing gloves? No one wears gloves. Some, if not all, of my teammates had been involved in disabled sports at a very young age and they could not imagine someone who had not been. I was foreign to them.

Though I eventually was accepted by my teammates and the disabled community, I always felt that my life was split between two very different worlds: the disabled world and everything else. I do not believe I was the only one. It found it interesting to talk to athletes at competitions about their other life. Girls who might have been extremely shy in school, would be social butterflies at competitions. To some extent I think a large portion of people, including myself, developed a split personality and lifestyle. As I got older, especially in high school and college, it became increasingly difficult to keep these worlds separate. I think a defining moment in entering adulthood for me was accepting that those worlds would have to fuse and deciding which parts of those personalities would survive to become who I am. It was not a pleasant process and more of an awkward second round of being a teenager and finding myself.

Lately I have been thinking of how I could have made that transition smoother and specifically what would have helped me along the way. One of my favorite blog posts to read is a feature called How I Work on lifehacker.com. It is basically a standard set of around seven questions that people in the tech industry would answer. Though its tech based, I think it is extremely interesting just to read about how people work and live. I think this could be replicated for people with disabilities. I would like to come up with a list of around twelve questions that could be sent to other people with disabilities that would give insight on their daily life. Some of the questions should be geared towards readers without a disability others would be beneficial to others with a disability. I would also like to include some questions that have no affiliation with a disability at all. My goal would be to publish these answers in a blog type of format possibly biweekly. Here are some of the questions that I have so far:

• How would you explain your disability in lamens terms?
• What is something that you would say you do better than most people?
• What is the best advice you have ever received?
• How has having a disability affected your day to day life?
• What is something that you would wish you would have known growing up with a disability?
• What is something that you wish everyone knew about living with a disability?

Any other suggestions would be greatly appreciated. Also, if you would like to contribute to the blog, please let me know. I think this would be an invaluable resource for both people with and without a disability alike.