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.

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 ...
  

Audacity article up

Thanks to Nathasha over at Audacity Magazine for publishing my parenting article.

Thanks to Char for being such an inspiring daughter.

"Alison Lapper Pregnant" to appear in Trafalgar Square

Trafalgar Square's fourth plinth will be the home of sculptor Marc Quinn's "Alison Lapper Pregnant"

The Greater London Authority will install the eleven-foot-tall marble
sculpture this year.

I regard it as a modern tribute to femininity, disability and
motherhood. It is so rare to see disability in everyday life – let alone
naked, pregnant and proud,' said artist Alison
Lapper, with whom Quinn
collaborated on the piece.

I find it encouraging that this piece was chosen-- as a rule, our
society doesn't seem to expect people with disabilities to be
comfortable with their bodies, to have sex, or to have children. This
sculpture flies in the face of those stereotypes-- in part by making
people more aware of a real-live woman with disabilities who does all of
those things, and works as an artist, besides.

Also, Alison is beautiful, and the sculpture will be, too.

Do visit the link to Mr. Quinn's gallery exibit above. He has made some
interesting statements about disability and the nature of life.

Hat Tip: Ouch!

Eighth-Grader Gets Detention for Hugging?

According to news coverage of eigth-grader Cazz Altomare's recent detention, It's now against the rules for some middle-school students to hug each other during the school day. I think I understand what the administrators of these schools are getting at-- Any time spent at the mall or skating rink will provide an ample lesson in unbridled 14-year-old affection, and it isn't comfortable for most of us "older" folks. In fact, my daughter, now sixteen, even cringes when reminded of her PDA at that age. But hug-banning is not likely to create a positive environment at school, in my opinion.

First, any introductory psych textbook will tell you, eighth-graders' purpose in life is to stake a claim on their independence from adults: drawing such unusually strict lines in the sand for them is like begging them to jump across. Second, peer-bonding is a priority for them; any interference from authority is likely to create defensiveness and rebellion.

The adults quoted in the article are correct when they say it can be difficult to separate "sexual" hugging from "non-sexual." But if the only sexual thing happening in their hallways is hugging, I can tell you they're a long way ahead of my high-school, and my daughter's. Why do they feel the need to micro-manage the students even more?

Hat-tip to Peter Webster and Audacity Magazine.

Cinema adventure re: Disabilities

I recently watched both Coming Home and The Waterdance. Jon Voight and Eric Stoltz respectively, had the lead roles in these films about post-injury rehabillitation. Each did a great job playing a person with SCI, and will join Daniel Day-Lewis(My Left Foot) among actors I do respect for trying to understand disability in order to portray it. Obviously, I'd prefer to see actors with disabilities in these roles, but at least some films address issues without focusing on pity or suicide.

I liked that both of these films (all three, actually) showed people with disabiliies living independently; doing things like working, driving cars, and having a sex life. But nearly every such character I can think of in a movie is a man. Does anybody know of any films like this, featuring disabled women?

I CAN'T TAKE THE MESS ANYMORE!

As you can see, my blogroll is missing, along with links and images. I am starting from scratch on the template to fix whatever is making Firefox purée my column colors. Please bear with me 'til I figure it out.

Thanks.

I knew there was a reason I'm an over-protective mom...

According to AP, New York State Comptroller Alan Hevesi has discovered that our tax dollars have been paying for Sex offenders' Viagra prescriptions. How can we A) give these people their privacy, and B) keep from facillitating their unacceptable behavior?

Terri's Fight was just the beginning!

These stories show there's a lot more to do to protect people with cognitive disabilities from those who would call them non-persons.

Ethical discussions based on the theories of Peter Singer could suddenly put anybody who can't talk to a TV reporter in Terri's position. Those of us who value our "imperfect" lives need to
find a way to impact public opinion before this idea of shifting
"personhood" across the lifespan solidifies in American thought.

If I could be...

Thanks to Janette at Common Sense Runs Wild for tagging me to do this meme:

Immediately following there is a list of 18? 19? 20?different occupations. You must select at least 5 of them (feel free to select more). You may add more if you like to your list before you pass it on (after you select 5 of the items as it was passed to you). Each one begins with "If I could be..." Of the 5 you selected, you are to finish each phrase with what you would do as a member of that profession. For example, if the selected occupation was "pirate" you might take the phrase "If I could be a pirate..." and add to it "I would sail the 7 Seas, dating lasses from around the worlde." See how easy that is?

Here's the list:

• If I could be a scientist...
• If I could be a farmer...
• If I could be a musician...
• If I could be a doctor...
• If I could be a painter...
• If I could be a gardener...
• If I could be a missionary...
• If I could be a chef...
• If I could be an architect...
• If I could be a linguist...
• If I could be a psychologist...
• If I could be a librarian...
• If I could be an athlete...
• If I could be a lawyer...
• If I could be an innkeeper...
• If I could be a professor...
• If I could be a writer...
• If I could be a llama-rider...
• If I could be a bonnie pirate...
• If I could be an astronaut...

(Janette added):

• If I could be a politician . . .
• If I could be a kid again . . .
• If I could be an animal . . .
• If I could be a tree . . .
• If I could be a celebrity . . .

And my own addition is:

• If I could be a character from a book or movie...

Here are my choices:

* If I could be a scientist... I'd create a small, mobile device that would, without any damage to the user's actual health, simulate various disabilities, like blindness, deafness, cognitive impairments, or paralysis. The user would then live with the chosen disability for, say, twenty-four hours.

* If I could be a doctor... I'd create treatment plans based on respect for the patient, designed to communicate that respect without adding significantly to the costs of care.

* If I could be a painter... I'd create paintings to represent a song, a caress, or the flavor of chocolate...

* If I could be a professor... I'd teach my students that the only thing needed to achieve a dream is the decision to pursue it.

* If I could be a writer... oh, yeah, I am a writer!

And thanks to Janette for this one:

* If I could be a kid again... I'd stay in touch with my friends. And I'd realize how skinny I was!

* If I could be a character from a book or a movie... I'd be a dragonrider from Anne McCaffrey's Dragonriders of Pern series. I don't care what color my dragon would be, but I want to fight Thread before it disappears forever!

I'm tagging Summer, Rae, and Imfunnytoo

Senator Levin (or at least his office) responds to my email about Terri

Dear Ms. Petricko:

Thank you for contacting me regarding the case of Theresa Schiavo.

As you may know, on March 20, 2005, the Senate passed a private bill for
the relief of the parents of Theresa Marie Schiavo (P.L.109-3). This
bill was subsequently passed by the House of Representatives and signed
by the President on March 21, 2005. P.L.109-3 gives the parents of
Theresa Schiavo standing to bring their case in federal court.

These matters have been traditionally within the jurisdiction of state
courts. In this case, state courts in Florida have repeatedly ruled that
Theresa Schiavo’s feeding tube be removed in accordance with her wishes,
as determined by the evidence before the court and the wishes of her
husband and legal guardian, Michael Schiavo. Over the course of twelve
years, courts in Florida and the U.S. Supreme Court have refused to
overturn that original decision.

I believe it was unwise for the U.S. Congress to intervene in this
deeply personal matter. It is the responsibility of state courts to make
difficult determinations in these matters and that is what the state
courts in Florida have done. While I opposed the overall intent of
P.L.109-3, I worked in a bipartisan manner to improve the legislation
that was ultimately signed into law by the President. During Senate
consideration of an earlier version of the bill, I objected to a
provision in the bill that would have required a federal court to issue
a stay in response to an appeal by Theresa Schiavo’s parents. This
provision was later struck from the bill. Prior to Senate passage of
P.L.109-3, I entered into a colloquy with Senate Majority Leader Bill
Frist (R-TN) to make clear that the bill does not in any way restrict
the discretion of the federal court and takes no position on whether the
court should take any action in considering the Theresa Schiavo case,
including whether it should issue a stay. The colloquy was later cited
by the 11th Circuit Court in its decision denying a stay in this case.
The U.S. Supreme Court subsequently rejected the appeal. The full text
of this colloquy and other statements I made with regard to P.L.109-3
can be found on my website at
[levin.senate.gov/newsroom/release.cfm?id=234397].

I hope this information is helpful. Thank you again for contacting me.

Sincerely,
Carl Levin

UK Parents' wishes for their child overruled by courts

BBC:
High court says: "Baby 'should be allowed to die'"

Charlotte Wyatt
Charlotte was born with brain, lung and kidney damage

A severely brain-damaged baby should be allowed to die if she stops
breathing, a High Court judge has ruled.

The parents of 18-month-old Charlotte Wyatt have lost their legal battle
to overturn a court order allowing doctors not to resuscitate her.

Darren and Debbie Wyatt, from Portsmouth, had been fighting the ruling,
made in October.

But Mr Justice Hedley said that the new order was not open-ended and
remained subject to review.

I am so predictable...

I'd love to deny it... it's so....NICE! Blech! Thanks to Janette at Common Sense Runs Wild for letting me in on this quiz by displaying her (much cooler) Angry girl.

What kind of little girl were YOU?
brought to you by Quizilla

Justice for Judge Van Sickle?

N.D. Court Affirms Guardianship Case
Tuesday, April 5, 2005 - 04:45:27 AM
By DALE WETZEL

A retired federal judge who once issued a landmark ruling on the rights
of the mentally retarded to live outside state institutions was properly
moved to a locked Alzheimer's ward in 2003, a court ruled Monday.

I will be digging into Judge Van Sickle's case soon. Coming up: A
special feature on the controversy surrounding former Ms. Wheelchair
Wisconsin, Janeal Lee.

Terri's Gift: Disabled Man Makes His Wishes Clear

Terri Schiavo has not died in vain. Her tragedy is creating conversations that will save at least one life. The Associated Press reports that Thor Spencer, 29, has let his family know: "I'd rather be alive than dead."

Despite the fact that the AP headline calls him a "Child," Thor is a man with a strong will. After seeing Terri on TV, he decided he never wanted doctors or the courts to make life-or-death decisions for him.

As a result, the Spencer family held a meeting, designed to help them come to terms with Thor's wishes. The family sees a pressing need for this conversation, because Thor often has health problems due to a brain injury.
In explaining his wishes,he brings up an experience I share, and one I've heard from others with disabilities:

Doctors said his clenched right arm might never relax. It did.

Doctors said he might not learn to talk again. He can.

Doctors said he probably would never walk on his own. He does.

"They were wrong," he says. "They were wrong every time. So, don't make that decision from what they say."

Like Thor, I have begun to tell my family and friends that I want to live, no matter what the doctors say. I am asking them what they want, and suggesting that they file living wills and durable power of attorney documents.

Thank you, Terri.

Rapist Lottery Winner Paroled in London?

From London's Daily Telegraph on the web:

Rapist free to spend lottery win

By JAMES MILLS

April 2, 2005

LONDON: A rapist who won the lottery while serving a life sentence left prison yesterday and got his hands on the $17 million fortune.

Why is a habitual sex offender who's been sentenced to life in prison being paroled, anyway?

TERRI HAS DIED

Recovery Part II

My Apologies to CNN's Dr. Gupta-- I'm afraid I have to directly contradict him. I don't know much about neurology, but I found a study which asserts that there have been three people who recovered from PVS after being treated with the Parkinson's drug Levodopa.

There are very few medical absolutes. When I hear "always" or "never" in a medical context, I can't help remembering that in 1970 I was the smallest preemie to survive in the hospital where I was born-- I was "never" going to talk and would "always" have to be cared for by my parents. Today I am a mother, speaker and writer, I drive my own van and work full time. I've been told that I "never" shut up!

Doctors are smart, hardworking people who mean well. But they can't see the future.

One way to see the value of life...

My Thanks to Dr. Charles for this quote: “A lot of people pity me because I don’t see the right colors,” he told me. “That never bothered me much. First of all I don’t know what I’m missing, and second of all who’s to say my world isn’t prettier.”

I've been trying to say that for weeks now. Lovely, Doctor.

No cases of recovery from PVS?

It seems the reason CNN's Dr. Sanjay Gupta and others can't find cases of recovery from PVS is because the treating physicians change the diagnosis if the patient improves!

Rae has posted a whole list of stories about people who were diagnosed PVS, and recovered to one degree or another-- at which time the doctors said, "Oops, sorry!" ((NOTE: scroll down to the posts beginning March 23.))

Terri Can Teach us to Choose Joy

I've noticed lately that it seems easy for people to watch the video and say "Maybe Michael Schiavo shouldn't be able to make this decision, but I wouldn't want to live like that."  The truth is, they don't know what it's like.  They're making assumptions about how they'd feel if they lost the ability to walk, talk, or be independent. Of course it's scary to contemplate a big change in someone's health or abilities.  But I hope those of us who fight for Terri will make a difference in the way that change is seen by the world.  That's what inspired me to write "18 Ways to Live--" There is no real need for Terri's life to be bleak-- She is loved; that's the big thing.  If she is allowed to be comfortable, to experience the world, and to work toward rehabillitation, that can be a rich, fulfilling life, despite limitations.  Truthfully, all of us have limitations, and any of us can choose to find joy despite loss.

Why the courts and the government don't need to help Terri now

This Morning's decision by the eleventh appellate court is devastating. I knew in the back of my mind that the Federal courts could decline to feed and hydrate Terri, but I hoped that the language of the law, the request for a "De Novo" trial, would motivate them to give her time. It seems to me that the courts may be reacting out of anger at congress' intervention, trying to protect the modern legal process: Specifically, not only ruling on cases, but deciding which cases to take and what evidence and arguments to hear, in order to shape the canon of US law.

Sadly, the extreme measures made in the House, and the rhetoric that follows, probably mean there will be no more intervention from them because of these embarrassing facts:

a) The voting public has seen the boneheaded memo that may have been sent out to Republican congressmen before the debate on the House floor.

b) President Bush, while still Governor of Texas, signed legislation that allows doctors to refuse to execute an advance directive in some cases. Texas Children's Hospital recently used this law to remove a ventillator from an infant against his mother's wishes.

d) The public, by and large, doesn't seem to find a lot of value in a life like Terri's. Once she's gone, this issue seems likely to become weighted on the side of ending treatment for others like her.

c) The next election is too far away for Terri's death to matter at the polls.

Despite the Schindler's vow to seek relief from the Supreme court, it looks to me like this is the place where the buck stops. I am not a lawyer, or a politician. I fervently pray that I am wrong.

Why is Terri Schindler-Schiavo my Problem?

I use a wheelchair because of Cerebral Palsy, and a prosthetic arm to replace the wrist and hand I was born without. I grew up with friends who were as "vegetative" as Terri-- loving life, enjoying (sometimes instigating) childish pranks, and just being kids. When I fight for Terri and others whose lives are being considered worthless by the medical establishment and the courts, I am fighting for my own life, my own value in their eyes-- my freedom.

18 Ways to Live

In Honor of Terri Schindler-Schiavo

1.Listen to great music.
2.Do Saturday-morning cartoons in your jammies.
3.Sit outside and enjoy the sun on your face.
4.Keep an eye on squirrels, bluejays, and children-- there's always a comedian around, if you look.
5.Play "Name that cloud."
6.Count your blessings.
7.Look at family photos.
8.Sit quietly with someone you love.
9.Smell flowers, babies, or the ocean.
10.Get a backrub.
11.Laugh.
12.Cuddle.
13.Dream.
14.Throw a tantrum.
15.Meditate and pray.
18.Let people pamper you.
16.Listen to a story-- preferably one about you.
17.Watch fireworks, lightning, sunsets, rainbows, and snow.


For more information on the fight to save Terri Shindler-Schiavo, see www.terrisfight.org

Thoughts on Oscar

I love Morgan Freeman. The world of cinema would be smaller, flatter, without him. I wanted to be jumping around my living room for him tonight-- It'll come as a surprize to few that I can't get excited for anyone in "Million Dollar Baby."

It isn't because I think they don't deserve recognition for their accomplishments; an offensive film can still be an artful one-- and based on Baby's press I suspect it's well done.

The words of accolade for the film should be balanced with words (FILMS!) that challenge the ideas it presents. If the filmmakers are serious when they say that "Baby" is one story about one group of people, and not a broader social statement, then I challenge them to _make_ a social statement by sponsoring the distribution of "Murderball" to be distributed along side it.

O'Reilly's "Only My Spin" Zone

This is a small excerpt from FDCH e-Media Transcripts of "The O'Reilly Factor" originally aired 02/09/05, as offered for licensing from Valeo Intellectual Property I have purchased licensing to post the transcript in its entirety, but I can't do that from work. Check back Friday 2/11/05 late P.M.

By Bill O'Reilly

Show: THE O'REILLY FACTOR

Guest: Andrea Moore-Emmett

O'REILLY: In the Back of the Book Segment tonight, an estimated 50,000 Americans live in polygamous families here in the USA, more than half of them in the State of Utah. Now the Mormon Church banned polygamy more than 100 years ago, but some fundamentalists in that religion have ignored the ban.

Joining us now from Salt Lake City is Andrea Moore-Emmett, former Mormon who's now written a book called God's Brothel about the polygamy situation.

**MAJOR SNIP (Check the article-- there is only discussion of polygamy, especially in Utah; No other controversial relationships/families are mentioned)**

O'REILLY: Well -- and if gay marriage got approved, then polygamy would have to be approved under equal protection, as we have said many times.

All right, Madam. Interesting book. Thank you.

MOORE-EMMETT: No, I don't think so.

O'REILLY: We appreciate it.

Next, we'll wrap things up with the Most Ridiculous Item of the Day and some of your mail.

(COMMERCIAL BREAK)


I began tracking Bill O'Reilly a few months ago, on the recommendation of a right-leaning friend whose opinions I respect. It was some time in September or October 2004, and I was complaining about how difficult I find it to gather information from many points of view-- Most of the media outlets I am used to reading are liberal; My friend suggested Fox News as a good source, and O'Reilly in particular as a smart conservative commentator.

So OK-- O'Reilly is smart, but he's also contentious and arrogant. His gay marriage comment is out of context for this conversation; On top of that, his guest obviously disagrees. So what does this smart guy do? He jumps to a commercial break. I feel so bad for Ms. Moore-Emmett. I would've felt like a dirty kleenex after that exchange.

I Have Comments!

I am allowed at least one pathetic-blogger-moment, right? (Does Happy
Dance) I have two comments on my Blog!

Thank you Amrod and Milton, for leaving my first-ever comments. I tried to
return the favor, but was unable to find blogs or working sites for either
of you. Please do let me know if/when you have a blog for me to read-- In
the meantime, you are both on my NICE list.

UN Treaty Debate Hits Me Where I Live

The United Nations has been debating the Treaty on the Rights of the Disabled lately, and has taken up the issue of whether people should be allowed to abort pregnancies when a disability is detected in utero.

This is obviously a charged subject for me, even though I don't think my parents would've chosen to abort me if they had knowledge and the choice. We live in a society that constantly reminds itself (Think Terri Schiavo or even the Oscar-nominated films "Million Dollar Baby" and "The Sea Inside") that life isn't worth living if you can't walk. I don't think we can trust new parents or malpractice-panicked doctors to make a truly responsible decision about a child's quality of life, before the child is even born.

I would love to see a Hollywood director with Eastwood's clout, or an actor with Christopher Reeve's dignity and voice, begin to speak for the richness of a life lived on wheels.

As I was reading about the UN treaty, with its provisions that governments give financial assistance to families with disabled children, I couldn't help thinking that the US won't ratify it. I might have to move to Sweden.

Boxing is Dead...Long Live Boxing

Yippee!! My new Dell 700m has left the "Boxing" stage and is in transit to the carrier! Now I'm just waiting for my laptop sleeve and router... crackberries ain't got nothin' on me-- I check my order status every time I check my email.

Bill O'Reilly's Victory Dance

This morning Bill O'Reilly is celebrating his influence-- specifically,
VIllanova University's decision to remove a plaque in memory of Mine An Ener, a former history professor at the university who confessed to killing her baby daughter and then committed suicide. Ener seems to have exhibited symptoms of psychosis, postpartum or not.

This is a terribly sad story; all children should be protected from danger,
and Ener's daughter deserved to live, no matter what affected her mother's
mental health. But O'Reilly's self-congratulations are in poor taste. A
story like this is not appropriate fodder for his stick-it-to-ya
attitude. If he were truly concerned with what is a right and proper
response to the tragedy, his own response to the university's decision
would not have looked so much like an arrogant victory dance.

I tried to email Mr. O'Reilly to offer this feedback, and discovered that
since I don't pay for premium access to his website, he doesn't want to
hear my opinion. I can't say I'm surprised.

New Laptop, Email blogging

I've ordered a Dell Inspiron 700m laptop, after seeing the one ordered for
a collegue. I've become a compulsive checker of my Dell order status, only
to be stuck in "boxing" for more than 24 hours. If I worked for Dell, I'd
find a way to stretch out the time an order is reported in "testing" instead.

Also, I can now apparently email my blog. Why does this happen _after_ I
buy a laptop?

Not a new idea, but...

NPR's Morning Edition reported this morning that a group of Catholic-school parents have objected to the enrollment of a pair of twins, because their parents are gay. The group is concerned that the children will be used as "pawns" to obtain greater acceptance from the Church for homosexuality. Never mind that they are children, or that they aren't necessarily gay themselves-- (why do those people so easily forget that there are innocent children involved in these stupid power struggles? How do they convince themselves it's ok to reject children on the grounds of these trumped-up "concerns?") I grumped around my bedroom about it, but didn't have time to write anything before work.

Then I read Laura Miller's article on Salon:Books about Witch Hunts in early Europe and America. Yes, I know that linking these two stories is a huge cliché. But the article cites local records of trials from the Witch craze on both continents, in which there is evidence to support the idea that the accusations weren't driven by weird happenings, or even by a Church trying to eradicate pagan practices or to subjugate women. The new scholarly work Miller cites illuminates a different motivation: The discomfort created among the neighbors when someone refuses to conform, and the need to blame.

I don't know any of the parents from that California school. But I've been around enough PTA meetings to know how easily "Can you imagine having to put one of Them on a committee?" becomes "This is a plot to undermine our values!"

Clichés happen for a reason, after all.