A Collection of Disability, Arts, Journals, Tips…

I haven’t dressed up since I went to arts camp at 15. Every week they would have a dance with some theme. You could dress up and if you had the best costume you’d win prizes. I never won as I never win anything (except for some DVD’s from Charter). But, this year, I’m inspired to dress up as Justin Dart, one of the leaders of the disability rights movement in America. May he rest in peace.

I decided to do this after reading about a Halloween party in Berkeley, CA. At the party, everyone had to dress up as a famous disabled person whether fictional or real. I figure it will be pretty easy to construct a realistic Justin outfit. I’m going to the Survival Center tomorrow to get a man’s sports coat, a white shirt, and a red tie. This was classical Justin uniform. I never saw that man in anything else. The tricky part will be acquiring a cowboy hat which you can’t play Justin without. If I don’t find one at the Survival Center (which I doubt I will) I will have to add yet another item to my Holyoke Mall shopping list. But, as always, I’m hoping to get it for free!

Since I started writing here, I’m sure that most of you heard me complain vehemently that no one disabled people in my area get together and do things. Today, Amherst had its second annual ADA celebration. You would have thought I would have been there. You would have been wrong. I wanted to go, but you see, I got pink eye which is contagious for the next 24 hours according to my pharmacist.

It wouldn’t have been very communal of me to go to the party, make all the people ill (some of them who have weak immune systems), and then they would have given it to their PCA’s, their spouses, etc. Those people would have given it back to them. It would have just been one vicious circle that I didn’t want to be responsible for.

Funny thing is I missed last year’s party too. I got a very severe case of diarrhea on the day the party was supposed to happen. Of course, I couldn’t go out like that. I was running to the bathroom every half an hour and eventually ended up in the ER.

I’m beginning to think it’s just not my destiny to ever attend this event.

It’s the 19th Anniversary of the Americans with Disabilities Act today. I go out every year on this day, even if I’m horribly ill. I think it’s important to go out and celebrate our freedom and civil rights legislation. The world over disabled people fight for legislation like the ADA and they’re winning. Going to the movies and restaurants, school, jobs, politics, what have you is not such a big deal anymore, but before the law passed it used to be. For myself, today, I went to lunch with Robyn (my assistant). It wasn’t the bravest action, but at least I was piblicly visible. I smiled at people, was cordial, and brought stuff that I paid for with my own money. I tend to spend money on this day just to prove that disabled people are in control of at least a bit of our own funds, however small.

I’m giving up taking an integrated dance, which means disabled and non-disabled people dancing together, class on Saturday. As I love dancing more than just about anything else on Earth, one might ask what is keeping me from dancing this weekend.

The answer?

And, I bet those of you who have been reading my blog here can guess is politics. There is an Obama rally at the exact same time at the dance class, just my luck. As I told my assistant this afternoon, “God knows, I could use the exercise; but I could also do with helping McCain not get elected.”

We all make choices everyday, big and small. How I choose to spend this Saturday is just another one of mine.

I am a Personal Care Assistance (PCA) user. That means that I hire (on my own) people to help me do things most people do on their own- using the bathroom, washing myself, cooking, housework, and so on. They even sometimes help me type entries into my blogs.

One of things that is really important to me is helping other PCA users live full and happy lives. One problem I’ve discovered is what do you do if you hire someone who lives with walking distance of you’re house? Are such people allowed to go home (when I don’t need them; I don’t need someone every second and I like my privacy, too, so sending them home as long as they’re only a phone call away was never a problem for me). However, other workers (who don’t live close enough to do this) complained that it was unfair.

My solution? People can still go home, but they only get paid for the time the actually work. That way everyone feels fairly treated and I don’t have to hear grief, which is always a good thing.

I’m so jumpy today, as I double took my steroids under doctor’s orders. I’m on steroids to combat severe, permanent, environmental allergies (I’m allergic too hard plastic, which is impossible to avoid in regular life). I usually take two kinds of allergy medicine, but every two or three months they decide I only need one kind of medication.

Then I need to double up on the remaining medicine just too keep breathing. Often, this gives me insomnia, which means a not fun night for both my personal care assistant (PCA) and me. I think that I slept about 2 hours and poor Amy, my PCA, got about 4. This is because I only called her when I needed her, not just because I was awake. At least now I have my right medicine, so hopefully I can get a nap this afternoon.