Susy

Hometown:

Springfield

Last seen:

watching my granddaughter's play-off basketball game

My story:

I'm the mother two children, Rachel and Adam, my 30-year old son with a developmental disability. I also have two grandaughters, one who has a learning disability. I'm also the Director of Disability Services at University of Illinois in Springfield. My son was never supposed to live to be 30 years old- he was supposed to die by the time he was 13. He's had 18 surgeries and many times, I was told to make plans because he's not going home from the hospital but he's fooled everyone. He's married and he works for the National Guard in Springfield.

Why I advocate:

I feel that if we don't use our voices, nobody will understand our stories. If you don't deal with a disability on a daily basis, you don't get it. A life lesson to me was when Adam was 10, nobody wanted him in their class because of his medical issues. I kept trying to go back, and back, and back, and I was so frustrated. It was the year the American Disabilities Act was signed into law, so I wrote Barbara Bush, just thinking she was a mom and maybe she would understand. She called my house and asked me what I needed, to which I told her that I didn't want Adam bussed out of town anymore. She said "Consider it done" and my son was never bussed out again. My two life lessons were: 1) Everybody has a voice and we have to use it. 2) It didn't change anything for anyone else but Adam. We have to change things systemically so it impacts everyone.

LifeMyWay means:

It's means that you're respected and that having a disability is secondary to who you are as a person and that you get to have choices. I've been told that I raised my son just like he doesn't have a disability and I take that as a compliment. It's really important not to underestimate what people with disabilities can do. I want our state to give people the supports they need to be able to do what they want to do with their lives.

My dreams:

I want people with disabilities to have the same options as people without disabilities, for people to realize the extent of what people with disabilities can do with their lives, for people not to be judged on how they look and for people to have the opportunity to be happy in their lives and do whatever they want to do to make them happy.