A Collection of Disability, Arts, Journals, Tips…

As people go, I’m pretty marginalized. I’m disabled, I’m black, I’m bisexual , female, and poor. I’m basically the most screwed person on the planet. The only majority identities I claim are adult and Christian.

Back to what I was saying, having to deal with being so screwed so often, it causes me to seek community amongst other people. One thing I absolutely can’t stand is when a person from one of my groups is biased toward another element of my identity. Take Dave Chappelle for example. He’s this amazingly funny black comedian; he’s also a rampant homophobe. When I learned this I was more horrified than I would have been had he just been some random white comedian. With him I felt like saying, “You’re on my team, I have to claim you whether I like to or not, why are you so stupid?” I have talked to other people of color about this and a lot of us feel the same way. We have to claim other people of color because the world screws us over so much whereas with white people who behave inappropriately, we don’t have to claim them.

Granted, I claim certain white people, certain able bodied people, certain men and certain heterosexuals. On a couple of occasions, I even claim a person or two who falls into all those categories, although that’s pretty rare But if one of them is homophobic or racist or some other poor behavior, it doesn’t bother me as much because I don’t feel obligated to claim them and their waywardness.

Am I all by myself, or do other people do this too?

Pumpkin (electric wheelchair) is going to be fixed. I need a side support and a hip guide, the mechanics said, basically those are things that position you the wheelchair. I had them both in my old chair, but I (stupidly) let them talk me out of having them in my new chair.

Until he’s back up and running, I’m in Sheila (old chair) and feeling much safer; no tipping danger there. I’m never letting them talk me out of getting items I know I need for my chair to work again. I know my body better than any mechanic does, any day.

Live and learn!

I wrote yesterday about the Grys family; how their little boy was born with osteogenesis imperfecta and dwarfism. On Extreme Makeover Home Edition, the family was very excited because Jake could suddenly do all these things he could never do before, like take a shower, use a bathroom, wash his own hands, and sleep by himself. He could even get to his older brothers’ bedrooms in the basement.

Now, I’m sure that’s exciting just like my mom was happy for me when I got my first power chair but that excitement wears off when you realize you suddenly can’t control every motion your child makes anymore. My mother lost me in the mall. What are you expecting? I was 11 and free to move around myself for the first time ever. After she found me, we had a long talk about not just going somewhere without telling anyone even though I could.

I wonder if Jake is having the same experience. I wonder if his older brothers are annoyed that he can just come down and bother them whenever he wants to now. As they say, you never gain anything without losing something. With mobility equipment this is also the case. Granted, having someone you love be able to move themselves around and be more independent is of course the more important thing, but giving someone that freedom with no understanding of boundaries (such as “You can’t just show up in my room.” or “You can’t just run around the mall without telling me where you’re going!”) can get annoying at times I’m sure.

The Grys Family of Pekin, Illinois are a pretty amazing bunch. They have two biological kids (both sons in their 20’s), plus they’ve adopted three children with disabilities: 16-year-old twins Abagail and Rebekah (who have Fetal Alcohol Syndrome) and 8-year-old Jake who has Ontogenesis Imperfecta (a.k.a. Brittle Bone Disease) and dwarfism. Additionally, they’ve fostered over 250 children, often with special needs themselves. I met them, via TV, when they were featured on Extreme Makeover: Home Edition.

As many of you know, Sunday was not a particularly good day for me. My chair fell over with me in it (ouch!) and missed my much anticipated mall trip. But seeing this little boy whose bones break as easily as eggs, smile and ham for camera brightened my miserable day. After all, I thought if what happened to me (falling over in my wheelchair) had happened to him (he’s in a chair, too); he would’ve died or broken at least half of his bones on the smashed side. All I got was a neck and shoulder ache; what a lucky woman I am.

I suppose it’s all a matter of perspective. Thank you, Jake, for giving me some.

I’m not one to complain and my regular readers know that, but this week {in fact this entire month} has been really horrendous. I woke up today all sore and still having menstrual issues on top of the soreness from having fallen. It was not a good morning.

I was to sore even to go to scrabble club, which I have been looking forward to. Just to get out of the house if nothing else. But around noon I became so ill I had to go back to bed and I stayed there until around 6:30 tonight. Its not like me. I wonder if my new assistant thinks I’m a homebody instead of the active person advertised in the ad that she responded to. Well I guess everyone has those weeks. I can deal with them one at a time but they need to stop occurring one after the other with no break.

I feel on my head this morning. It was horrible. The chair tipped over again, as I was getting into it. I literally thought (as the chair was falling over), “Okay, I’m about die, sorry about being in underwear, Lord. I didn’t plan on dying today.” My second thought was, “If I don’t die I’m going to end up a quadriplegic.”

Lucky neither of those things happened. I’m sore, but can still move all my parts. I vow to call the chair repair people on Monday and make them fix the chair; whatever that involves (up to and including getting another new chair, as this brand doesn’t apparently work for me). Mass Health, Massachusetts Medicaid, will love that I’m sure. But I will do what needs to be done in order to insure that I’m safe in my chair. They can object, but I will triumph in end.

I had another “WTF” moment today. My new assistant and fellow poet who I really liked, bailed on me. She emailed me less than 2 hours before she was supposed to come. I didn’t even check the e-mail until she was late. I’m sorry, but when did everyone in the word become so irresponsible.

Luckily, another interviewee came and was nice enough to help me pee. Laura, my friend and frequent savior, came to stay with me tonight. Also, after this disaster, my Sunday daytime PCA said that her daughter broke her leg and she wouldn’t be able to come in. Assistance issues… Assistance issues!

As my cupboards were bare I went to Holyoke today and got a new foods stamps card. My old one is lost somewhere. I don’t know where despite hours of searching by multiple people. As this is my third foot stamp card (and I can’t afford to spend seven dollars every time I lose it) I’ve decided to attach this one to my key chain. I never lose my house keys so this should be a good arrangement.

However when I was in the office how screwed up the whole social service system is occurred to me. There were at least 30 people in that office waiting for services. Some of them, according to them, were there in emergency circumstances, but there were only two people available to help us.

The sidewalk wasn’t even cleared and I nearly flipped my chair over. Oh, having calling the Police or EMT’s in Holyoke to pick up a fallen woman in a wheelchair who was just trying to enter the food stamp office, that would have been fun (or not!)

I like MassTransit. I’m glad I live in a community where I can take the bus or the Paratransit to most places I need to go. However, today was not the Paratransit’s best day. Usually, I don’t mind if they’re late to pick me up from poetry group because it usually lasts longer than the time I’ve allotted so I’m always stuck leaving early. Today, however, we only had eight readers so group ended earlier than usual. Bad day for the van service to get lost. Worst day for the van service to forget to pick up someone, poor person. Even worse than that they had to drop someone else off before I could go home. I didn’t get home until 10:44pm. That’s about 45 minutes later than I usually get home from group. I didn’t eat before I went because they said they needed to pick me up at 4:30pm which is about an hour earlier than they usually pick me up and not the time I had asked for due to my PCA schedule. I would say, overall, that this is the worst van service day I’ve had in six months. I hope tomorrow goes better.

Yesterday, in the midst of all the drama that was happening for me personally, my assistant and I watched a Discovery Science show hosted by Dr. Michio Kaku on the ramifications of the Human Genome Project. We were sitting around discussing the ramifications of mapping the genome from genetic discrimination to cloning. As a disabled person, I am already aware that certain people wish to eliminate my kind from the spectrum of human kind. I know that sounds dramatic but look at the increased rates of abortion when fetal abnormalities are detected. I want to tell people, “Newsflash you can’t eliminate disabled people from the human spectrum”. Hitler tried and Margaret Sanger tried. Although I prefer to remember her for her role in creating good birth control methods which are utilized by many women to this day rather than her eugenically based ideology. Neither of them succeeded. Thank God. Disabled people have existed for millions of years. The Neanderthals used to take care of their disabled relatives and we’re supposed to be the civilized ones (but that’s another blog). We will continue to do so unless you (and this is a scary though) hire mercenaries to find us and kill us. Even in that situation, I’m sure some of us will survive.

But I digress. Back to Michio Kaku and the conversation I had with my assistant. She and I both agree that the idea or cloning a human is at best morally questionable and at worst morally wrong. However, I have no problem with them growing organs or body parts in a laboratory as long as that’s as far as it goes. I agree that I’m not entirely sure once we open that door we’ll be able to stop scientific “progress” in the direction of cloning. However, I know that many people die every year waiting for there to be enough human organs available for donation. Many people still want their relatives to die with all their organs intact. I don’t know why, but they do. It’s as if the person will actually need them where they’re going. In my opinion, that’s hopefully Heaven. I see no reason why someone else should die because someone’s relatives are too selfish or too overwrought to donate their organs. According to Dr. Kaku, this technology would eliminate organ donation rejection and that’s a good thing as being on immunosuppressant’s for your entire life is no fun. Trust me, I know and I only take one pill of it a day.

But maybe this is all playing God a little too much. But take that logic to the next step. Were we playing God too much when Jonas Salk invented the Polio vaccine? I don’t think so and since we’re still here God apparently agrees with me. Trust me. If we get too uppity, I’m sure he’ll deal with it in ways we don’t even want to think about. Remember the tower of Babel and Noah’s flood?

I hope people respond to this. I’m eager for others opinions.