When I was small I would beg for a ride to the regional library, far away across the bay. My father, muttering about the inconvenience, would sometimes take me there on the way to his job. This was fine because I didn't need to browse: I was working my way alphabetically through the stacks.
Make-a-Wish and similar charities either did not exist or did not reach my hometown in the year I was diagnosed with two different kinds of cancer and a rare genetic disorder. If they had, I would have asked for something along the lines of a trip to England and a visit to the set of a certain science fiction television program.
But they didn't, so instead, I got a television of my very own. I curled up around the pain and the remote control and watched endless cryptic episodes of Doctor Who, wishing myself away. Anywhere, everywhere, elsewhere.
Today This Manic Mama talks to Sarah Talbot and Yantra Bertelli, co-editors of the book My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities.
I'm writing this today, not because I see myself as a political activist, but because our daughter lives with an on-going, critical need for healthcare, and because I want everyone to be able to put a face to the idea of healthcare reform. And what better face than our goofy, gorgeous, brave baby girl's?
The first and fundamental principle is simple: always tell the truth. No matter how difficult, unwieldy, or frightening, it is better by far to acknowledge what is actually happening.
I dare you to read this interview: click for more.
Seventeen years ago I went to a conference with my friend and colleague Jenni. We were both students, idealistic and outspoken, committed to making our society accessible to people with disabilities. We were making this happen by forcing the campus to comply with the ADA, and coordinating a task force for the Governor's office with the objective of reforming structural (translation: boring) policies.
For three quarters of my adult life I have earned as much or more than my partner. Going way back to my teens, this included a stake of cash - an emergency fund - consisting originally of blood money from the accident. Thanks to that haunted reserve I was able to cover rent, buy books, stay in school, demonstrate my academic skills, long enough to earn merit scholarships sufficient to pay for my entire education.
When I was 19, I was in a car wreck. As a result I had a spinal fusion that was successful for two reasons. First of all, I can walk and second, the fusion is in excellent shape twenty years later due to an excellent surgeon and prudent care on my part.
However; this puts me in a category known as "pre-existing condition" to insurance providers. Once you have one, you must stay insured at all times or you will never be insured again.
Fortunately, most people who have met my son can look past the labels and see what a beautiful, charming, and mischievous little boy he is. We can only keep friendships with people who are truly interested and respectful of him, friends who embrace him as Ulysses and not as Down syndrome. Since we cannot befriend the whole world and help them to understand that there is no tragedy in having a child with Down syndrome, or any perceived 'disability' for that matter, I have devoted my time and efforts towards work that will educate the general public. In joint efforts with other organizations, we can extend this education and change in conventional wisdom to the rest of the world. I hope that by the time that my son is an adult, he will live in a liberated society that does not impose limitations on him based on his appearance and perceived 'learning differences.'