Friday, July 11, 2014

Health Care Survey

Illustration of a multiple choice survey
If you have a disability, or are connected in some personal way to the disability experience, I urge you to click the link above and complete the online survey from the University of New Hampshire, about your experiences with health care. I’ve done it, and it seems really well-designed, and best of all, brief.

It’s good to see some attention focused on the gaps and differences in how disabled people experience health care.


“You listen to me grasshopper. There is going to be a million Buddy Garritys out there, who will try to tell you aren't worth anything. And you just gotta look 'em right in the eye and flip him the bird … ‘Cause the Buddy Garritys of this world, they’re a cancer to you and me.” — Herc talking to Jason, Friday Night Lights.

A Little Moxie Summer Blog Hop - "Talking Raw, Talking Real: Challenges Related to Disability"

Summer blog hop series: challenge!
Most of the time, the challenges related to disability aren’t about disability alone. In my experience, and observing the experience of others, 75% of the time, it's actually about disability and something else:

Social stigma … Everything from mild awkwardness and ignorant comments, to open ridicule and bullying. They invade our space when we least expect it, an it hurts in a very personal way. In some ways, it’s the least significant problem we face, but in other ways, it’s the most painful.

Discrimination … Prejudice put into action, where it concretely affects our mobility, inclusion, and opportunities. People can think what they like about disabled people, but prejudice causes real, lasting harm when we lose a job opportunity because of it.

Poverty … Money can’t buy happiness, but it can buy off a lot of the hardships of many kinds of disabilities. Money can buy ramps, lift vans, decent wheelchairs, tutors and therapists, and pay other people to help us do the things we can’t do for ourselves. The flip side is that when we don’t have money, everything about our disabilities becomes exponentially harder.

Segregation … Being cordoned off into “special” programs of any kind may seem to have superficial advantages, but the harm is deeper and longer term. Separate is not only unequal, it is artificial, inauthentic, and it provides cover for neglect and abuse. Plus, segregated programs are almost always maintained for the convenience and comfort of people other than the actual disabled people they’re supposed to serve.

Lack of agency … In little ways and big, we are often treated as something less than complete human beings. Most people don’t realize they are doing it, and very few believe we are literally inferior. Yet, we are treated like a bundle of symptoms and behaviors. Adults are treated like children or tweens. People speak to the person with us instead of directly to us. Even our families sometimes seem to forget that we are people ... not symbols or tests of their moral character.  In many ways, the biggest challenge of disability is simply to assert and maintain our basic personhood.

Disabilities impose themselves every day, and occasionally they can be very sharp and punishing. But disabilities are different and distinct from the hardships associated with them that are imposed from the outside. The good news is that most of them are easier to fix, both personally and systemically, than most disabilities. It doesn’t always seem that way, and lots of disabled people would disagree, I think, but I believe it is true.

Disabilities are largely beyond our control. Human behavior is not. The real challenges of disability are the “… and other things” that go along with it.