Little and Cute

I spent the first twelve years of my life firmly attached to my dad's hip. He carried me a lot--to keep up with neighborhood kids, wander around the mall, or explore the woods around my summer camp. I couldn't walk or push a chair well enough to do those things, so he did them for me--for as long as he could.

In light of all that, I can understand Ashley's parents' decision to keep her small and portable. I honestly believe that their intentions are good, despite their nauseating babble. I understand that doctors are constitutionally inclined to see disabled people as "fixable." I don't condone what these people did, but I think I see the thought processes behind it.

There's one part of this growth attenuation procedure that confuses and angers me: "The treatment includes growth attenuation through high-dose estrogen therapy, hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and the associated discomfort to Ashley. We pursued this treatment after much thought, research, and discussions with doctors." from the parents' blog

I'm afraid I'm not convinced that Ashley's mother thought having breasts would make Ashley uncomfortable. I assume that the woman has breasts herself, and hasn't opted to have them removed for her own comfort. So why were they removed, really?

• To make dressing her easier?
  
• To accommodate the velcro positioning straps on her stroller-style wheelchair?
  
• To disappoint any passing sexual predators who might cop a feel?
  

Or is it designed to perfect the illusion that she is perpetually nine years old?

People love disabled kids. They donate millions of dollars to telethons, organize spaghetti dinners to buy cute pink wheelchairs, etc. etc. etc. It feels great to lavish gifts and media attention on the wounded cherubs sent to earth by God to make everyone else thankful for their able bodies.

That whole squishy pattern is screwed when adults with disabilities show up. We're not cute, we're heavy to pick up, and we look funny--our obviously mature bodies get carried around, dressed, fed, and positioned in ways that, in a perfect world, only infants would need. It seems to me that once the door was open to keeping Ashley little, it made sense to somebody to keep her cute, too.

The sad truth is, staying cute will make people more likely to engage themselves with Ashley. Minimizing the gap between her outward appearance and her intellect mitigates the deep discomfort people feel around people with mental impairments.

This little girl's life has been altered in ways that might just benefit her. But at what cost? How will a society that condones such procedures ever come to terms with the needs of disabled people who aren't little and cute?

2007 on Wheelz

In honor of the new year, I am newly committed to Wheelz Life Notes. I liked the format and focus of the blog before, so mostly I just want to say Tally-Ho and Back At It. That being said, I have never left well enough alone in my life, so you can expect some "improvements" at some point.

I don't do resolutions anymore, but here are some goals:

a weekly essay.
a weekly news roundup.
a monthly interview.

What do you think? Suggestions go with new years like peanut butter with chocolate, so go for it.

Katrina on Wheelz

"The disaster, it seems to me, is the failure of a philosophy. A philosophy of small government, tax cuts, deficits and privatization. The federal government should have arrived sooner but the federal government was doing other things." ~Stephen Elliott at Salon

That says everything I've been scribbling and scratching out, ranting and ruminating about for a week now. Well, almost:

How does a mayor call for manditory evacuation without evacuating the Intensive Care units in his hospitals?

How many people drowned strapped into their wheelchairs, or on their stairways as they crawled up on their bellies to escape rising water?

How many people starved and dehydrated in close proximity to food, water and help, because their power wheelchair batteries had died during the second day after the storm?

How many people died from insulin shock with dose after dose of ruined insulin in their laps?

After 9/11, the President called for disaster response plans that addressed the needs of people with disabilities. Did anyone actually work on that? Was any provision made in the days leading up to Katrina to evacuate people with disabilities before the catastrophe turned their city into a deathtrap? When Michael Chertoff and Michael Brown were smugly suggesting that the citizens of New Orleans had a responsibility to "Get to a distribution center," did anyone remind them that not everyone can just jump up and wade through the mess?

Katrina proved to me that our nation still forgets the disabled. We are unimportant to our government, the moment hard times arrive. How can we, wheelchair users still living, working, and paying taxes, get big enough, loud enough, to matter?

News on Wheelz

Talk Show Focusing On Disabilities Makes Worldwide Impact Online
Emediawire (press release) - 6 hours ago
If you are one of 56 million Americans with a disability who have wanted a place to be heard and understood by others, then tune in online to DisAbility News & Views Radio every Tuesday and Sunday.


InstantService and Direct Interactions Partnership Enables People With Disabilities to Work From Home
SEATTLE, WA -- (MARKET WIRE) Technology companies InstantService and Direct Interactions are using the Workforce Recruitment Program provided by the Office of Disability Employment of the U.S. Department of Labor (http://www.dol.gov/odep/) to provide opportunities for people with disabilities to work from home.

People with Disabilities Are Forced Into a Poverty Trap
Newswise (press release)
Newswise — Although the federal government spends some $87 billion a year on income support for people with disabilities, "today's obsolete policies" force many people with disabilities, whether they work or not, into a "poverty trap."

Training Center Opens in Chennai, India
A first-of-its-kind resource-cum-training centre for persons with disabilities was inaugurated here yesterday.

News on Wheelz

Air NZ wheelchair policy challenged
TVNZ
CCS, formerly the Crippled Children's Society, is pursuing its Human Rights complaint about Air New Zealand's treatment of wheelchair users despite the company making significant changes.

Grounds broken for UWI centre for students with disabilities
Jamaica Observer
THE Digicel Foundation has committed $5 million towards the construction of the UWI (University of the West Indies) Lion's Resource Centre for students with disabilities.

News on Wheelz

National Associations to Be Recognized for Empowering Citizens with Disabilities
Business Wire (press release)
WASHINGTON--(BUSINESS WIRE)--Aug. 29, 2005--The National Organization on Disability (NOD) announced today a competition that will recognize five major non-disability associations from across America for their work on behalf of people with disabilities.

TRICARE ANNOUNCES NEW EXTENDED CARE HEALTH OPTION
FedNews-Online
The military health system TRICARE announced recently the Extended Care Health Option, which will replace the existing Program for Persons with Disabilities effective Sept. 1.

Paralympics: BC’s Alan Bergman wins men’s wheelchair marathon
RunnersWeb
ESPOO, Finland-Alan Bergman of Cobble Hill, BC, won the gold medal in the men’s wheelchair marathon Saturday which concluded the European Paralympic track and field championships for athletes with a disability.

Alison Lapper on Parenting and disability

BBC's Ouch! Has posted an interview with Artist Alison Lapper-- the model and collaborator on the sculpture chosen famous "fourth plinth" in London's Trafalgar square.

This interview focuses on Alison's experiences as a mom and as a participant in a televised study on parenting. Her thoughts are not only articulate and pithy, they bring to light experiences I believe are widely felt among parents with disabilities: The need to adapt, educate yourself and get help from experts to find methods that work, the guilt we feel when we perceive ourselves as judged or distrusted by able-bodied parents around us, and the ultimate need to trust our own judgement and our relationships with our children.

Alison mentions the fact that child-welfare authorities have "threatened" her when she didn't have someone able-bodied on hand to look after her son. What are we going to have to do to stop disability itself from being a reason for intervention in obviously loving, functional families?

News On Wheelz

Paralympics: Jason Dunkerley and Andre Beaudoin win gold for Canada
RunnersWeb - 10 hours ago
ESPOO, Finland-Jason Dunkerley of Hamilton and Andre Beaudoin of Cowansville, Que., each won gold to highlight a seven-medal performance for Canada on Friday at the European Paralympic track and field championships for athletes with a disability.

Exerpt from the draft Constitution of Iraq

Article (30):

1st _ The state guarantees social and health insurance, the basics for a free and honorable life for the individual and the family _ especially children and women _ and works to protect them from illiteracy, fear and poverty and provides them with housing and the means to rehabilitate and take care of them. This shall be regulated by law.

Article (31):

1st _ Every Iraqi has the right to health service, and the state is in charge of public health and guarantees the means of protection and treatment by building different kinds of hospitals and health institutions.

2nd _ Individuals and associations have the right to build hospitals, dispensaries or private clinics under the supervision of the state. This shall be regulated by law.

Article (32): The state cares for the disabled and those with special needs and guarantees their rehabilitation to integrate them in society. This shall be regulated by law.

Maybe I need to move to a new democracy? (Know of any not blown up on a daily basis?)

News on Wheelz

Quadriplegic woman sails solo across Channel
By Jenny Booth, Times Online
[Hillary Lister] today broke a world record by becoming the first quadriplegic to sail solo across the English Channel.

Teams ready for wheelchair hoops tourney
Houston Community Newspapers Online
Pasadena is gearing up for the annual International Shootout Wheelchair Basketball Tournament to be held Labor Day Weekend.

Computer Issues.

We are having Computer Issues, so I can't really post tonight-- tune in tomorrow, though, for lots of interesting stuff: supreme court nomination, Murderball, and access in Israel.

News on Wheelz

Family loses right-to-life appeal for baby

Darren Wyatt, 33, and his wife, Debbie, 24, who have been told by the hospital treating their daughter [Charlotte] that she has made "remarkable progress", failed to persuade the Court of Appeal the order should now be rescinded.

News on Wheelz

Segway finds niche among people with disabilities
DetNews.com
Shane Latham said he had tears in his eyes last month when he received his Segway Human Transporter, a self-balancing, electric-powered transportation device.

Taipei Hospital offering custom-made wheelchairs
Taipei Times
BY JEAN LIN. The Rehabilitation Center of Taipei Veterans General Hospital has begun offering wheelchairs specially designed for specific users.

Comment Spam and disclaimer

WLN has gotten its first comment spam. IF you are an actual reader interested in having a conversation with the author of this blog, and not a hit-monger, and your comment was inadvertantly deleted, please re-post it. I have no desire to edit comments that are posted by bloggers and blog readers, only to keep spammers off my blog.

Sometimes I'd like to skip Sundays

I went with my daughter to a church function in a local park last night. It was a fun event; they were giving away bikes, backpacks and clothes to low-income schoolkids, and Char sang and performed some dramas with the youth ministry team. There were even a few dance numbers.

I may just spend a lot of time with "churchy" people, since my daughter's involved with youth ministry and my grandfather is a pastor. But it seems that whenever I go to one of these things, people come up with all sorts of annoying things to say and do. These are actual examples from a two hour time period:

• A guy told me he was "led by the LORD" to bless me by giving me an ugly cookie jar.
  
• A lady assumed I was deaf, since I was sitting near the ASL interpreter.
  
• A guy assumed I knew a friend of his, just because the friend also has disabilities.

Incidentally, I heard these two comments, as well:

• "I'd rather teach in a black school, because in a black school I can pray, I can talk about Jesus. Nobody says anything..."
  
• On being introduced to a young man who recently moved to our area from Ghana: "Oh, do you know Pastor X.? (the young man gives her a puzzled look) Oh, well, er, I think Pastor X. used to be an ambassador to Ghana for our President."

Now, I know these people can't really be idiots, and I know they mean well. I also know that I won't get more than one annoying moment out of a whole day, if I'm just walking around the park with the general public.

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.

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.

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.