A Collection of Disability, Arts, Journals, Tips…

I am so pissed. My mother who is able-bodied, as you know, royally made my want to kick her in the butt. She suggested that I come home in a manual chair and leave my power chair Massachusetts over Christmas vacation. I told that was not acceptable. My mother kind of a slightly Scrooge like person when it comes to money. I don’t like, but overall I tolerate it, because try though I might I can’t alter her.

I don’t know how to explain it, and most able-bodied people don’t get it, but if I don’t have a power chair I can’t move independently at all accept for a few inches. That’s an amazing sacrifice to ask someone to make. Last time I checked I was supposed to enjoy the holiday to not just accommodate other people. If I don’t get to take my chair, I’ll be sore (because whatever would be rented won’t have my seating system), cranky, and miserable. That’s not a recipe for a happy holiday at least for me!

I do own a seating equipped manual chair, but it’s kind of big to fit in a normal car, which my mom brought when our van died. My mother is a sweet person, no doubt and the fact that she loves me is not a question. But, I’m in a wheelchair. I’ve been in one since I was 4. One would think that my parent’s house were I lived for over 22 years full time would have a wheelchair accessible bathroom (not a john where I have get out of my power chair, get into my manual chair, pee, reverse process). I know wheelchair accessible bathroom aren’t cheap especially if you have to install them in an existing bathroom, but my parents manage to pay for a time share!

At the moment, I feel disrespected and annoyed. Maybe I’ll share this blog with her. If I actually tried to talk her in speech, I get flustered and cry. I have always expressed myself better in the written word anyhow.

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!

There is a somewhat cheesy show on We TV called The Secret Lives of Women, they recently did a show on short statured women (the politically incorrect term is midget). The title of the episode was “Mini-Women”. I find that title offensive. Just because you’re a little person (politically acceptable term) doesn’t mean you are less than any other women. Would this producer do I show on physically disabled woman and call it “Broken Women”. One would hope not!

Other than my title issue, I liked the show. They portrayed these women as empowered, employed, and for the most part happy. The three women profiled are Tara (a mom and mascot for the Florida Panthers), Ali (an actress and rental agent), and Marilou (a tax accountant and sexuality educator). The show doesn’t take pity on them and they aren’t portrayed as these magnificent overcomers of everything as so often happens when disabled people are talked about in the media. As a disabled person, there are moments in this episode that make me uncomfortable. Ali, for example, seems to think it’s perfectly fine to let her boyfriend push her around in a grocery cart while they go shopping. I’m sorry. It’s my opinion that if you can’t walk through the grocery store you should buy mobility equipment or have your insurance buy it for you as opposed to looking like a two year old sitting in a grocery cart. However, it’s her life and if she doesn’t mind being pushed through the grocery store like a toddler who am I to question her decision?

I would recommend that this show be a part of diversity awareness trainings mostly because the people involved are portrayed as so average. For years, most people with disabilities have wanted to be shown as just your average guy or girl. Most shows that attempt to do that fail miserably. This one didn’t. The only issue I really had that the production team had any control over was the title, and I’m sure they got a lot of letters about it.

I got my new wheelchair back on Friday, after it had been repaired for like the sixth extended absence. I love my wheelchair mechanics, but they worry overly much. I drive my wheelchair in r<eclined position in the bathroom only so I can get out of it and back into it after I use the toilet. I might also (although I didn’t tell them this) do it in some very choreographed and much practiced performance piece one day.

Basically, they were worried that I would drive the chair in tilted position in the street or around my apartment. I am not 11. I don’t need a lockout device to protect me from myself. I (surprise, surprise) got what I wanted in the end. No wheelchair mechanic is going to outsmart me.

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.

After watching a show on the history of comic books on the History Channel, the next show was about people with super abilities. Real life X-Men or X-Women as the case may be. The host of the show had a disability called Ehlers-Danlos Syndrome except he didn’t consider it a disability. In fact, he used his hyper-mobility to make money as part of a magic show where he performed tricks. All I kept thinking was, that works now but wait till you turn 40 and suddenly get arthritis in all of those double joints. One word, ouch!

But that got me thinking. Are all the X-Men really disabled? Here I include both the real ones he found and the fiction alones. I thought about this for quite awhile, and I’ve come to the conclusion that some of them, like Professor X, who’s in a wheelchair anyway and Rogue who can’t touch people ever, are definitely disabled. The rest of them, with the exception of Wolverine who I think has some psychological issues, are pretty much able-bodied. What do you all think of this idea? And have you ever seen the show Superhuman on the History Channel? Do you think they are real life X-Men?

I was so proud of myself for being ready for book expo early, but as always, something happened. I am supposed to go to Book Expo America (writing event), but my house host had an emergency. I need to arrive Wednesday (5/27) and then will get out of your hair on june 5, by noon (at the latest). If you have a non step house and ideally a wheelchair accesible bathroom and don’t mind my assistant and me, let me know. Much appreciated… Please google Martina Robinson for details of me. I can pay a little and you don’t need to feed us.

There are days where being disabled sucks; especially the nights when the aches and pains of life prevent REM sleep and the use tricks simply don’t work. Those nights lead to these mornings. Mornings when you’re still tired and need to decide whether making the pain in your back better (by sitting in your wheelchair) is worth making the pain in your still injured knee (from a month ago) worse by getting up, standing, transferring, and doing all the things that morning entails for this body. Last night was just night and this morning is just a morning. I’m not presently a happy person!

It occurred to me yesterday when I logged in here, I haven’t been here in over a month. I was just to busy with my other work to be here much. Blogging is a big part of my life, but not (despite some people’s opinion) the only thing I have going. I’ve applied for three fellowships and was awarded half of one. I was also busy doing activism. Arrest 24 and 25, check and check (proudly). I hurt myself while doing said activism (bruised knee) and was one bed rest for one very long week.

That’s it for my update. How are y’all?