Wednesday, April 29, 2015

Notable Tweets

I found these in my notes from last week. I saved them because together they explain why "Inspiration Porn" is bad. It's not just because it implies most disabled people are pathetic. The real problem is that by highlighting personal virtue, Inspiration Porn distracts from the unjust and entirely changeable situations that make such virtue necessary. Recognizing this takes nothing away from the individuals being virtuous by the way. In the absence of justice, a bit of one-on-one kindness and sacrifice is better than nothing. But let's not mistake them for solutions.

Hospital Blogging! Conclusion

Hospital icon on the left, active wheelchair icon on the right
Before I finish this “Hospital Blogging!” thing, I think it’s important to acknowledge that many people with disabilities have a much more difficult time in the hospital than I did. Partly this is because independent, empowered disabled people experience their disabilities in fundamentally non-medical ways, while the medical profession, naturally, sees disabilities as medical problems within their purview. It’s a culture clash.

However, in my indirect experience assisting other disabled people, the disabled people who have the most difficulty in hospitals are those with what I like to call “Rodney Dangerfield Disabilities” … disabilities that "don’t get no respect." Emotional / mental impairments fall within this category. So do certain chronic pain / chronic illness conditions like Fibromyalgia, POTS, Chronic Fatigue Syndrome. In fact, any conditions that are hard for doctors to precisely identify, localize, and treat tend to be treated with skepticism, which means the people who have these conditions are treated as suspect.

For a variety of reasons, the medical profession seems to be on guard against being duped or swindled by a supposed horde of lazy malingerers, “head cases”, and just plain drug seekers. I suppose all three exist, and hospital personnel probably do meet them more than most of us. But huge numbers of disabled people are tarred with this suspicion, which poisons what should be a collaborative and trusting patient / provider relationship. When you are in the hospital, by necessity, and that’s how they feel about you, your can’t even get away. You’re stuck needing treatment from people who won’t give it to you, but in a weird way won’t let you go either.

I am lucky that I have never experienced this for myself. It’s a huge problem that still needs a lot of work.

If you want to read my hospital blog posts again, from start to finish, here are the links: