Talking about disability

In her book The Rejected Body, Susan Wendell wrote “experiences of living with a disability are not by their nature private, separable from the rest of life and the rest of society. They can and should be shared throughout the culture as much as we share experiences of love, work, and family life” (1996, 66-67).

I love this quote. In society, there is this idea that if sick people, especially sick women, talked about their health less, then they wouldn't feel so sick. This is a lie. But it's a lie that hurts. This quote makes me feel better about choosing to talk openly about my health.

"But I don't see disableism very often"

A couple of months ago I tried talking to my best friend about why I find "Glee" ableist, which turned into a conversation about disableism in society. My best friend is a sociology major who always seems better at me at noticing failure around -isms. So I was shocked when she said she rarely sees disableism. Honestly, it really hurt--I see ableism every day. But what I had to remind myself is that ableism, just like sexism, racism, and any other type of -ism, can be easy to not see if you have that type of privilege (i.e. you are a TAB, etc.)

So here is a list of some of the places I see ableism. Because next time, I want to have a better answer than a look of shock and hurt. (This obviously isn't a list of all types of disableism, just a few of the things I experience frequently in my day-to-day life.)

I see ableism:

in the year it took me to make myself go to the Office of Accommodations at my university. And the fact it took me another year to actually start using my accommodations. I grew up in a society that told me that I had to be some stereotype of strong and using these accommodations was weak and bad. (Society was wrong.)

in what I call "the look of terror" so many people give me when they find out things about my health. Among other things, I strongly believe that if our society was more accepting about talking about disabilities, people wouldn't feel so bad or have so much pity when they find out about my health.

Parsons and the sick role

I am currently studying disability in uni and I thought I might post a bit about it this semester in case anyone was interested.

This week, I started off my course by reading “Social Structure and Dynamic Process: the Case of Modern Medical Practice,” which is a chapter in a book Talcott Parsons wrote in the 1950's that talks about functionalism (a sociological theory). It is an important theory in the sociology of health, but it has serious flaws when it comes to chronic illness and disability.

Parsons' sick role theory has four parts. The first part of the sick role is an exemption from certain societal normative expectations. For example, when you can call in sick to work with the flu. Second is the belief that the sick person cannot just will themselves to get better – they must be healed, and this often requires being taken care of. So you can't just wish you were better, you must go to the doctor (according to the theory). These two points are dependent on the third part of the role, which is that being ill is undesirable and the patient must wish to get better. The final part of the role is an “obligation” to go to a doctor and “cooperate” with him in order to get better(p. 437).

Gives me Hope, part one of many

So thanks to Annie, I recently found a website called Gives Me Hope. So here are some things that give me hope.

1. My doctor who, among other things, lets me email her as often as I want, asks about my life, and helps make sure I can afford my treatment.
   
2. The specialist who, a year ago, offered to treat me for a decreased rate so that I could afford it.
3. My roommate who (despite not having severe chronic pain) is always willing to listen to me talk about disableism, understands more about it than most fairly-healthy people, and is willing to admit that she doesn't know everything about chronic illness and disability.
4. My other best friend, wh0 is always there to listen to me, take me to medical appointments and who has done more than I can say for me.
5. People who deal with my health problems in a way that makes me feel respected and happy.
6. Friends made online.
7. People who laugh with me at my health jokes.
   
8. Chronicbabe.com
9. Feminists with disabilities

little-big disabling things

1. I MISS being able to leave my room easilty. Why does so much of the world have to be lit by florescent lights? Why do I end up in disabling pain just from sitting for an hour with my friends eating dinner under florescent lights?
2. I wish I didn't have to plan my wardrobe based on my pain level of the day.
3. Similarly, it would be nice if I could put my hair up without that hurting.
   
4. Chairs! Wouldn't it be nice if the chairs didn't hurt my back and make my pain levels worse?

It's funny how all these little things, that so many people never think about, can be so important. Can basically trap me in my room--and even hurt me in my room. Sometimes I flip off the florescent lights-curse them out with my hands and voice.

But how do you build a university and a world with my accessibility needs in mind? Would it even be fair of me to ask that?

Birth Control

Next up on my list of treatments is birth control. I may start next week. I really hope it works, but it seems unlikely. After all, I've tried over 20 medications.

But I'm scared: part of me is hopeful that this might help and that hope could be a problem. The more hope I have, the more it will hurt when the treatment doesn't work. And despite how many things I try--pills, injections and alternative treatments--it always hurts when it fails. I try to be as pessimistic as possible about the possibilities so that it will hurt less. (Sometimes people who don't have similar health problems try to convince me this is the wrong way to go about it. But I'd rather fall from a low height, of low expectations, than a high one.) I've fallen over 20 times and it still hurts every time. I think I cry every time.

So here's a hope it helps. And here's a reminder that it probably won't and that I have friends, online and in meatworld, who will be there to help when it falls apart again. And here's to hope. To still having hope. And to the strength it takes to still have hope and to keep trying treatements instead of saying "sod it."

I'm back

I haven't had internet access or been home for a couple weeks, but I'm back and ready to try to find more positivity and deal with more health decisions. Yay....?