Friday, August 19, 2005

Pulling Punches

I've been thinking about yesterday's post, and I realize now that I didn't quite say what I meant to.

Whether there's anything wrong with the article or not, my reaction to it was about me. Unless I can get myself to hold still long enough to observe my own reactions, my insights won't be valuable to me or anyone; they won't be complete, or completely honest. I tried to do that yesterday, and I did, just enough to identify what in the article made me so uncomfortable. But that's only the first half of the job.

I can't stand to let people help me with personal tasks. I can't stand getting sad or angry because of my limitations. These aversions are ways that I cope with having disabilities, and they're so natural to me that I mistake them for truth sometimes. That's what I got stuck in while I was looking at those two pictures. For the record.

Thursday, August 18, 2005

I may be a writer, but I just don't understand journalists.

My news clipping service sent me a link from today's Knoxville News, called "Hope in a bottle." The article focuses on Lee Sims, a young man who has HIV/AIDS. Now, I must admit that I had absolutely no business clicking on the article at all, since it opened with a description of flowers AND was culled by the clip service based on the keyword "blind." I have learned, over the year since I began receiving these clips in my inbox, to stay away from anything with "Hope" or "Hero" in the title, flowers, animals, little children, coffins or tombstones in the blub that accompanies the link. But I thought I could handle it, since this appeared to relate to HIV, and maybe blindness, not mobility problems or wheelchair users.

I was wrong. The article features several photos-- the first one shows Sims crying. The caption explains that he was overcome with emotion "remembering how, as he lay in a hospital bed in 1994, he overhead a doctor telling his parents to make funeral arrangements for him." The second catches him making a "lipstick face" while someone else's index finger applies lip balm; this caption identifies the disembodied hand as his mother's. The caption continues: "Lee, who has lost his vision, keeps the lip balm, his medications and other daily necessities in a zippered bag in a certain place, so he can find it while his mother is at work." My immediate reaction was anger. Why the #@$% can't he put on his own lip balm? Just two pictures and their captions were enough to put a knot in my gut, and force me to read the rest of the (painful) article-- just so I could try to figure out the reporter's purpose. The article is really just a long list of Sims' tribulations. It goes into great detail about AIDS drugs and their arduous schedules, mentions in passing that at least Sims is still alive, and ends with the following quote: "I want things the way they were," he said. "I just can't seem to accept the fact that they're not going to be." I've seen articles like this all my life; What's the big deal? Still, I was angry. I read it again, scrolling up to the top several times to look at this guy's face.

On about my tenth scroll back up to look at those irritating pictures, it hit me. The stupid article's just a stupid article. The reason I'm so ticked off is that in those two pictures, the guy is doing things I Hate: 1. Crying about his illness and 2. Letting someone help him with a simple bodily task he can do for himself. On top of that, he's letting the newspaper take pictures of him doing both. Suddenly I can clearly hear the little tantrum going on in my head and my solar plexus: Has he no shame? If he hasn't, why is that newsworthy? I want to read about people who, whether they have disabilities or not, approach their lives with vigor, responsibility, and humor. Heck, as long as they don't gush about sunbeams and butterflies, I even want a little optimism.

For whatever reason, this article portrays none of that from Sims. I wonder: If I call him up, will he 1. be a cool guy who sometimes gets depressed or lazy, or 2. be as soppy and disgusting as the article?

I'd bet on number 1. So why did the reporter write the story that way?

News on Wheelz (Not)

Slow news day, at least when it comes to wheelchairs or disabilities. In future I will just skip this feature if there's no qualifying news to report.

Wednesday, August 17, 2005

Today South Carolina, tomorrow the Country!

South Carolina lawmakers are hoping to change their Medicaid plan into a kind of voucher system: Here's the money you're entitled to based on your age and health-- Go spend it however you want! The program's proponents say it will put patients back in charge of their own care, while creating significant cost savings for the government. Sound like a Win-Win situation? Of course it does. But there are some assumptions being made here: For example, when reporters bring up the scenario of someone with major health problems, the stock response is that person's best option is to purchase health insurance with their health-care money.

That sounds great until I think about the last time I looked into purchasing Health insurance for myself: Because of my cerebral palsy, most insurers rejected me. The state-subsidized insurer who could not reject me offered a bare-bones policy that would have made most of my major medical expenses (wheelchairs, artificial limbs, etc) my responsibility, AND their premium was twice that of the other companies. Forgive my skepticism, but I don't believe they'd be offering me a voucher for _that_ much over the baseline.

Of Course South Carolina wants to reduce the costs associated with Medicaid. But keep in mind, they also want to keep their cushy relationships with big-business healthcare. This Medicaid reform plan is a sweetly stated attempt to strip the program down to a level of well-baby, once-a-year-checkup coverage on one end and ventillator, ethics-committee-tango on the other. I've got to find a way to get loud about this because if South Carolinians allow it, every state in the union will be lining up.

News On Wheelz

Czech Government to integrate children with disabilities in schools
Prague Daily Monitor
(PDM staff with CTK) 17 August - The Cabinet will discuss today its plans to markedly increase the number of children with disabilities to be placed in regular schools.

Ghana's Govt provides ¢1 billion for People With Disabilities
Manpower, Youth and Employment minister, Joseph Kofi Adda, says the Office of the President had provided ¢1 billion through the Department of Social Welfare for a micro-finance scheme for Persons With Disabilities (PWDs) in 20 selected districts in the country.

Tuesday, August 16, 2005

New Feature-- News on Wheelz

There are exciting things in store at Wheelz Life Notes this week. I have been inspired by some excellent blogs to add additional content to this site. The first new feature is "News on Wheelz," Items culled from Google News that meet the following criteria:

  • Stories pertaining to people with challenges to their mobility that are national in focus. There's a lot of great local stuff happening; I just don't have time to look at it all.
  • Stories that are NOT reporting crimes perpetrated by or on a particular disabled individual. I can't see any value to the wheelchair-using community in focusing on this. This rule does not exclude stories about US Supreme Court cases or their equivalent in other countries, far-reaching scams, corporate crimes applying to national products or programs, or any other story reasonably expected to affect lots of people with disabilities.
  • Stories that are NOT syrupy human-interest profiles of people "overcoming" mobility problems. This rule will exclude any story in which phrases like "Jimmy never complains" or "Sue never lets her wheelchair stop her." I understand that reporters writing such stories "mean well," but that doesn't mean I have to read them, or point to them from my website.
  • Stories that are NOT Op-Ed. As I see it, it's my responsibility to write the editorial material here.

    OK, now that all of that stuff is out of the way:

    Today's News on Wheelz

    NEC Wheelchair Tennis Tour
    Lawn Tennis Association - Aug 15, 2005
    British Men's No 1 Jayant Mistry (Loughborough, Leicestershire) won his sixth wheelchair tennis doubles title of the year on Sunday when he partnered Frenchman Michael Jeremiasz to victory in the Men's Main Draw Doubles final at the Swiss Open, part of ...

    Access at sea: What about land excursions?
    Los Angeles Times
    By Alfred Borcover, Special to the Chicago Tribune. When the US Supreme Court ruled in June that foreign-flagged cruise ships sailing from US ports must adhere to the Americans With Disabilities Act of 1990 ...

    Group Builds Playgrounds to Serve Disabled
    Wired News
    By DAVID N. GOODMAN Associated Press Writer. SCIO TOWNSHIP, Mich. (AP) -- Shallon Kovac loves her school's new playground, which is designed so that children with disabilities and those without can play together. ...

    IBM donates accessibility code to Firefox
    ZDNet UK
    IBM said on Monday it will donate 50,000 lines of code to the Mozilla Foundation's Firefox Web browser to make it friendly for people with visual and motor disabilities. The contribution would allow the addition ...