A Collection of Disability, Arts, Journals, Tips…

Today I learned the most ridiculous thing. My apartment, which I have a rent subsidy for, would cost $1,011 on the open market. My apartment, mind you, is nice. Two adequate bedrooms, a big kitchen living room combined area, a nice wheelchair accessible bathroom, but it’s not worth over $1,000 per month. No way! For $1,000 I would move to Amherst, Northampton, or Burlington. I’d move to better bus route. I’d insist on a roll in shower which I don’t have now. Any person who would pay $1,000 to live where I do now is, in my opinion, a trifle slow in the mind.

I went shopping today at the after Christmas sales, like lots of other Americans looking for a bargain in this bad economy. As a disabled person, sometimes shopping can be difficult for me, because people insist on talking to my assistant like I can’t communicate (what I can) and as if it’s not my money that’s being spent (which it is).

But the staff at JCPenney must have had some sensitivity training. They treated me like any other customer, granted that meant they wanted my money. But the moment of normality was somewhat precious to me. And I got some great deals to boot!

Today I was watching ESPN, which is a very rare thing for me to do, as I am not a sports person but all the men folk in my house were watching Sports Center, and what was I supposed to do? But I guess the universe wanted me to be watching Sports Center so I would notice this story. Adam Bender is this nine year old boy who was born with cancer, which I didn’t know was possible. He had his left leg amputated all the way up to the pelvis just a few days after his first birthday. As I said, now he’s nine and apparently quite athletic. He plays four sports, baseball, soccer, flag football where he’s a quarterback, and wrestling. In wrestling, the sportscasters say he might have a good future because that sport favors people with strong upper bodies.

The news crew tried, I think, unintentionally to make Adam seem like one of those Tiny Tim characters. But Adam was such a force of nature in the filming and it just didn’t work. Adam is, in my opinion, proof that you can be inspirational without being pathetic. Whatever television’s intentions might be.

A few days ago I was remarking to my new assistant that I thought so many disability rights activists smoked because for a good portion of our lives most of us had no control over anything, when we got up, what we did or were able to do, what we ate and when we went to bed, were controlled by family members or caregivers. So we developed often unhealthy habits over things we could control. Whether we smoked or drank, whether we cleaned our rooms or whatever, just so we could feel we had some control over something happening in our lives. When we moved out and achieved freedom however, we still had these bad habits or addictions to contend with. Of course we don’t need to engage in these behaviors anymore. We’re free grownups now. But sometimes it’s hard to kick an addiction or habit even when you know you should.

What a day, I’ve had. I went to train station hoping to catch a train home for the holidays, but as the train was delayed by 2 and a half hours. That meant that Ivy and I would miss the last train from Philadelphia to Harrisburg, where my parents live. So, I went back home (after spending $3.50 for paratransit, each way) and risking life and limb traveling in the bitter, bitter cold and unplowed ice and snow outside the train station.

Also, Ivy and I are usually forgetful people, but I forgot my meds (Amy brought them to the train for me or my mom would’ve killed me for showing up at home without them, but Demi forgot her cell phone so I couldn’t call them to tell them to forget it because I coming back home anyway), plus Ivy forgot her shoes and phone. I swear the universe is trying to tell us something, but we’re too determined to do what we want to listen.

Now, the third “Get Martina home for Christmas plan” is that my parents and their repaired van will come get us early tomorrow afternoon, then drive us to Pennsylvania. I’ll let you know how it goes.

I was supposed to be going home today. Well, to my parent’s house anyway. But the snow sort of spoiled that plan, as did my parent’s broken down van. In truth, I am glad they didn’t come. Because I have no idea how I would’ve maneuvered Pumpkin (my power chair) into the van in so much snow. Last I check it was still snowing although according to the weather channel, it was supposed to stop 19 minutes ago.

Ivy and I have train tickets for tomorrow. And come hell or high water, I am departing Massachusetts before the 24th of December. I don’t plan to spend Christmas with just myself, my assistant, and not even my cat. He’s at the cat sitter. That’s just too depressing an idea. My mom says that if I can’t get the train tomorrow she’ll bother the mechanic to fix our van until he does. And if know him, he will. It’s easier to restructure your life than to tangle with my mother when she wants something. Trust me. So I would say the odds of one disabled person and one assistant making it to Pennsylvania by Wednesday at the latest are about 99.5%.

I am proud of the fact that I run my own personal care assistance program. I decide who helps me and what hours they work, I train people and if needed fire them. I decide what they do when they’re here. I manage the 91.5 day hours I get during the daytime per week to be used between the hours of 8 AM and midnight. That works out 13 a day on average, plus I receive overnight support of three hours per night. The person stays over with me for eight hours but only gets paid for 3, as I am supposedly sleeping and won’t need their help as much. I don’t like this system as I tend to be a night owl and require work-related help like typing during the hours when the muse is awake. I’m a writer and have learned the muse will be active when she wants to be. Not necessarily when I want her to be.

Ideally, I would like the state just to hand me the money for my care. I am perfectly capable of determining how much money people get per hour; I would totally raise the night rate. Day people get a lot of little breaks when I don’t need help for a half an hour or so. Night people never get more the 2 hours of sleep in a row.

All across the country, disabled people are fighting for more control over their government funded services. We deserve it. We can manage own lives. The only reason we don’t have it is because of ableist (discrimination towards disabled people) bias. I demand the right to determine factors that effect my life, whether I pay for it or whether the government does.

In California, there is plan to tax millionaires an extra 1% of their taxable income (or approximately $10,000 per millionaire for the every everyone with even one million dollars net income. If the country undertook this process it would mean 1,660,000,000,000 in taxable revenue for the country.

When I purposed this on today, in my other blog, people were quick to ask if I donated 1% of my own income, before proposing that other people do it? Yes, I do. My monthly income is about $900 (200 income, 700 benefits). I gave to my local food bank. Plus I usually give money to whatever charity my grocery store is collecting for. Not to mention, I do volunteer work. In November, I raised about $50 by being in a write-a-thon, like a walk-a-thon but for writers.

If I can happily give up my one percent, why can’t millionaires give up theirs? They’ll probably miss it less than I do. I’m doing my civic duty (helping my neighbors), I expect them to do the same. If that makes me a socialist, so be it. I thought it just made me a good person, doing what the good book said.

People (who are not bigots themselves) let bigoted comments and behaviors go by without comment. For myself- being black, female, disabled, and queer- I see it several times a week, at least. I can understand why people don’t want to interrupt socially biased behavior, even if they find it distasteful. We are trained not to make social waves. We fear consequences.

However- if we don’t interrupt such behaviors, be they racist, sexist, homophobic, ableist (fear of disabled people), the result of religious bias, or xenophobic (feat of foreigners or foreign things)- we won’t be doing our part to build the society we want and desire go ourselves and future generations. Do you really want to live with the results of that decision? I know I don’t.

Last night was bad. I hardly slept. The reason, my doctor screwed with my medicine regime again. Every three months they do this, forcing poor me (and my poor workers) to deal with the side effects of too much steroids. I was jumpy, peeing every hour, and sort of moody (taking the required double dose of steroids- as I must whenever my other medicines are absent always makes me especially moody).

My trips just cancelled do the poor weather; it snowed 4 inches. Plus Celina couldn’t come in because the roads in her area were so bad. Poor Demi has been working since 10 PM last night.

Happily, the weather is supposed to get better tomorrow and Demi can get a well deserved 24 hours off!