Friday, January 18, 2013

Having a Baby with a Disability

If you’re not Family or know us personally, you may not have heard: my wife, Shannon, is pregnant! Yes, I’ll be a father for the first time later this year and we're both really excited.

At one time in my life, I was worried about having a child with a disability. My congenital disability is hereditary and, for a long time in my younger years, I worried about passing that gene along. I obsessed about it, really. Now, I understand that it's a pretty correctable condition thanks to our most modern medicine. But at one point, I worried that my child might have to go through childhood being picked last for sports or possibly teased by other children for being different. Ironically, all the things that I now attribute to building character in my own life.

The day after I had found out that I was having a baby, I was at an event where a speaker was talking about her child with a disability. I listened to her experiences and had an epiphany. It was like a weight lifted from my shoulders. Unlike many people, I’m not worried IF my baby has a disability. Of all my encounters with people with disabilities, I am not worried that a child with a disability couldn't live a full, happy life. I know he or she could and would. It should be no surprise that I’m not ashamed of my congenital disability (but I will correct you if you call it a “birth defect”). In fact, I take pride in being part of the disability community.

If we had a kid with a disability, they would be lucky to get me and my wife as parents. Some of the greatest parents I've ever known have worked in the Independent Living Movement, too. As a result, we're less worried about our baby being "whole" or "healthy" and more focused on providing a meaningful life for our child, disability or not.

No, I’m not worried IF my baby has a disability. Instead, I’m worried FOR my baby if it has a disability. I'm scared for my child's feelings being hurt because of the perception of others. I worry about how society currently views and treats people with disabilities. I am scared to death that he or she won’t have true equality or equal opportunity in our society. If it's a severe disability, I worry about lack of community based services, that to get the services we need, we would have to lock our child up in an institution. I worry about a staggering unemployment rate.

I have no problem if my kid has a disability. If she or he happens to end up with a disability, then the work I've been doing for the last ten years for disability equality and accessibility just becomes that much more real to me. And if you're inaccessible for whatever reason, watch out. Actually, either way, watch out. Because for everyone's child who could have been mine, I'm working even harder now for equal access. 

- Keith Hosey