Gives me Hope, pt. two of many

It's been a hard week, but it's starting to get better, so I thought I would post somethings that give me hope:

• Finding people who are passionate about feminism, especially in someone I didn't expect to have that passion.
• Passion in general.
• Created families.
  
• My best friend. For helping me with my anger despite all she has to deal with. For not leaving me. For being the best person I know.
• Teachers who buy school supplies out of their own small salaries so that the kids can have basic supplies.
• Greg Mortenson
• Cuddling
• How hard people work to get an education.
• How hard people work to survive and to help their loved ones survive.
• Countries who try to measure their Gross National Happiness
• The ideals behind the Olympics
• When North and South Korea marched together at an Olympic opening ceremony

What gives you hope?

stages of change

Tonight was not a good night. I thought I was doing a lot better at accepting that I'm might be in constant pain for the rest of my life. That I might never be able to tell how my health was going to be from one second to the next. But I'm not. I just can't fully conceptualize this as my forever reality, which it might well be.

I thought I had gotten to a point where I was happy with the way I'm living my life. Until I realized how truly angry I am.

The five stages of change are denial, anger, depression, bargaining and acceptance. People go through them in different orders. I think I'm often in several of them at once. Right now, at least, anger's my main one.

Among other things, I'm angry at myself at not being more in the acceptance stage. It's been over 3.5 years since my migraines became constant, and it feels like a while. I feel like I should be "farther along" towards acceptance. (Or mostly-acceptance, as I'm not sure I will ever fully accept my chronic health problems.)

But then i think about how I spent that time. I spent the first year in denial--I just assumed they were going to go away. I spent the next year in a different type of denial---assuming I could just live my life however I wanted and decide to just ignore my symptoms. (That didn't go so well.) That's two years on denial.

But now, I'm much more in the anger stage. I'm angry at my body for this "betrayal," anger at society towards the way it treats people like me, angry at my friends when they say things that hurt, angry at insurance companies, angry at a G-d I don't believe in... The list could go on.

I'm angry at a lot of things, but some of them are targets of misplaced anger. The anger is spilling over into other parts of my life and I didn't even realize until today. I want to work on untangling and dealing with it in healthier ways. And I think I can do this, now that I have noticed how angry I am.

But I also need to work on accepting my stages of change. Because I'm not a bad person for taking however long I need to get towards a happier stage.

Olympic ceremonies win

As my friends and I were watching the Olympic ceremonies tonight, we were all guessing who would light the Olympic torch. Over two hours later, Rick Hansen rolled into the Olympic games with the Olympic torch. And together, Hansen, Wayne Gretzky, Nancy Greene, Steve Nash, Rick Hansen, and Catriona Le May Doan lit the Olympic torch in the stadium.

Every day, I am reminded that people with disabilities are considered lesser by society. Which is why, when Rick Hansen rolled in tonight bringing the torch, I smiled so wide my face hurt. Canada has this night to show off to the world what they are all about, and they decided to show off Hansen, a decorated paralympian. I am going to try to hold onto this happiness and hope.

The photo shows three smiling people holding Olympic torches at the opening ceremonies of the Olympic games. Hansen is sitting in his wheelchair on the left, a white man is standing in the middle, and a white woman is standing on the right.

This photo was found on India Times' website.

Working on remembering the good things

I'm feeling a little stressed and upset, so I thought I would post some things that have been making me happy.

• The song "Hide and Seak" by Imogen Heap (This YouTube video has the song and lyrics. Or you can find the lyrics here.)
• An online world of friends and people who understand what it's like to be constantly ill and in pain. And who help me cope and live better.
  
• Learning. Seriously, I love learning new things :)
• Feminism and feminists :)
• My best friend for starting a conversation about disability and telling me that I am not making up the hurt I feel. (Dear self-doubt, my friends will help me defeat you.)
• Lauredhel at Feminists with Disabilities decided to include two of my posts in the recommended reading posts last week.
• I am watching Un Long Dimanche de fiancailles (A Very Long Engagement) tomorrow night with friends. Love that movie!

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