Stigma, Skinny Repeal, and “Charity Case” Health Care

Posted July 28, 2017

By Matt Kramer, Operations Assistant

Growing up as a kid with a disability, I felt both the stigma society places on people with disabilities, and the importance of connecting with people to make change.

 I had “friends,” which I later learned often meant kids the teacher asked to talk to me. Add society stigma and misunderstanding about disabilities, along with meanness of kids at that age, and you have a pretty lonely, isolated childhood. Adults who weren’t directly taking care of me were either afraid of me, or walking on eggshells trying to say the right thing. I remember people praising me lavishly about being brave, and an inspiration. Although flattered at the time, I look back at this and often ask why.

As for services, most did not exist, and those that did were impossible to find. This was long before the days of e-mail or the internet. We had the Yellow Pages. You had to know someone who knew something. Families like mine who had complex medical issues from birth were on their own figuring out how to pay for the gargantuan medical bills.

My parents served on the first Governor’s Council on Developmental Disabilities. The group analyzes state policy for people with disability, makes recommendations to the governor, and provides research grants to improve the lives of people with disabilities.… Continue reading »