KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Why 39? Because a few weeks ago, I had my 39th birthday, and because I couldn't quite decide which of my many tones and poses I wanted to strike for this diary...thirty-nine is not an especially long life, even considering (from family legend, at least), that it came close to not happening at all, but it does give you some time to see some things, probably in no particular order.
39. Having small children greet you, especially when you, yourself, are a small child, by saying "What's wrong with you?" fucks you up a little bit inside. Yes, even if your parents do a decent job and your mother shows you Itzhak Perlman as a role model...maybe because "What's wrong with you?" happens about a million more times than you'll ever see the Inspiring Crip Professional. Admit it. Acknowledge it.
38. Americans are really uptight about bodily functions, and the suggestion that they, or someone they know, has less than vise-like control of same. This is probably why it's so hard to pay caregivers decent wages. Then you can't get good ones...no wonder Catch-22 is one of my favorites.
37.Sometimes even doctors mix up my disability with more life-threatening ones.I'm guessing that's why some of them say "But that affects children, doesn't it?" with such bemusement. Adulthood affects children too, if they hang around long enough.
36.People born with our disabilities disappear from the national conversation once we are seventeen and invited to our first "Easing the Transition" conference. Everyone likes cute adaptive summer campers so much better.
35. The wheelchair ramp is always further away than you think, and the average able-bodied person is generally no help in locating it. Probably ever.
34. Disabilities as...intense as mine either make you really devout, or really not. I'm really not.