Conversations with Self-Advocates: Part V
The Special Hope Foundation is very proud of our Self-Advocacy Advisory Committee, and for the value its members add to our organization. The committee reviews the proposals that the Foundation receives and provides input on whether or not applicants should receive funding, and whether a proposal is designed well for people with disabilities.
Today’s conversation is with Katie Murphy:
How did you learn about the Special Hope Foundation?
I learned about the Special Hope Foundation when Ruth Dimagmaliw reached out to me about serving on the Self-Advocacy Advisory Committee.
What has been your experience with health care through the years?
It’s been a tightrope act to be perfectly honest. Since childhood, I’ve had a very cynical view of health care. For me, medical settings have always been fraught with competing power relations.
I mean, I grew up with a disabled mother who spent the better part of her childhood in what was then known as Shriner’s Hospital for the Crippled Children. In a number of subtle and not-so-subtle ways, my mom impressed upon me that you need to advocate for yourself with doctors or you’re not going to get the care you need. By virtue of their white coats, doctors are able to enact power in very impactful ways, so patients need to use the means available to them to channel power in a way that helps themselves.
Like I said, very cynical.
But self-advocacy has been a part of my life for a long time.
What is the most common misconception that people have about you?
I’m really bad at reading body language and tone of voice, so most of the time I don’t know what people conceive of me.
But I do know that people tend to be super shocked when I tell them I’m autistic. I don’t fit many people’s preconceptions of how an autistic should look, act, or live. I’m not an 8 year old white boy from a middle class home. I’m a woman in her twenties who lives independently, works a steady job, and uses five dollar words.
People assume that I must be “really high functioning” as if one’s ability to function within society is an innate quality rather than the result of culture and social conditioning. Thanks to years of bullying and social pressure, I can suppress much of my natural behavior and appear as a weird, somewhat distant neurotypical.
Was there an “aha” moment when you realized that you wanted to advocate not just for yourself, but for others with disabilities too?
Not really. Growing up in a disabled family, there wasn’t much distance between myself and other people with disabilities. If my family went somewhere, if we did something, everyone’s access needs had to be taken into account. So, right off the bat, I was thinking about access and advocacy in terms of my own disabilities and those of others.
What kinds of things would you like to accomplish on the Advisory Committee of the Special Hope Foundation?
In the United States, the future of government funded health care grows more uncertain every day. It’s more important than ever that nonprofit funding goes to programs that best strengthen health care access for people with disabilities. (After all, disabled people are one of the biggest stakeholders in publicly funded health care.) The most effective nonprofits move beyond a one-size-fits-all model. They consider disability as being in concert with the many other identities disabled people hold that impact their access to health care.
I hope my work on the Advisory Committee will encourage the funding (and even creation) of high impact projects to increase health care access and equity.
Read about the other members of our Self-Advocacy Advisory Committee:
The mission of the Special Hope Foundation is to promote the establishment of comprehensive healthcare for adults with developmental disabilities designed to meet their unique and fundamental needs.