"I'm Going to Kill Myself, but at Least I'll Be Dignified"

Those who want to understand why many in the disability rights movement become so inflamed with the rhetoric of the euthanasia movement should note a particular adjective in this quote below from a BBC News story with the ugly title of MS woman wins right-to-die fight:

"Ms Purdy wishes to avoid an undignified and distressing end to her life. She is entitled to ask that this too must be respected."

Granted, no one wants a distressing end, whether it comes from Multiple Sclerosis -- or a car accident, a drowning, or perhaps being murdered.

But what is undignified about being ill, or to move the argument into realm of disability, about being physically or mentally handicapped in some fashion?

To say so -- to offer death as an alternative to a perception of indignity imposed by society -- denigrates the human dignity of every person who lives with a disability.

I Love the Serial Comma

I had a piece published recently in a very nice venue, but the editor pitched my serial commas overboard.

I suppose it's standard practice now -- I'm too cheap to buy a Chicago Manual of Style -- because this morning as I read the New York Times another example of the missing serial comma jumped out at me.

“Michelle was a very hard-working, intelligent and dedicated assistant,” he said. “I think she will be a very successful trainer.”

There's simply no need for this. Commas are as plentiful. And I doubt either production of the ink to print them or the voltage/amperage to display them add to global warming in a significant way.

More on Creative Nonfiction

A writer visited me with after the Springfield Writers Guild meeting and said she didn't seen any reason why the "sensory interpretation" tip could not be applied to fiction. Why not? Any event that can be rendered using sight, sound, touch, scent, and maybe even taste will lead to a narrative (and characters), and further on to metaphors and analogies, visible through those those five "windows."

Of course, the use of metaphor and analogy arises from a person's ability to recognize references and connections between things. It is a way of seeing, one generated by genes, upbringing, and experience.

It doesn't translate, though. I like and understand and use metaphor, but I rarely get modern art. Sometimes I see the essence of some of early Cubists, but show me a Jackson Pollock, and I will say "Huh?"

I think a writer can train the writerly brain to see metaphors, but it is easier if one thinks in that fashion -- at least without becoming overly pretentious, mannered, and self-conscious about their use.

Natural is better.

Talking about Creative Nonfiction

I was asked to speak on the art and craft of creative nonfiction at the Springfield (MO) chapter of the Writer's Guild last week. I'm no public speaker, and so I made myself an outline, which served as a hand-out as well, and was able to fill the 30 minutes.

The two things that created the most vigorous discussion were the idea of "truth" and, more prosaically, the definition (What is ... ?) creative nonfiction.

I offered my idea that there is objective truth and subjective (individual) truth, which some attending questioned. As to the definition, one writer attending thought that that writers could fictionalize essays to get across a "true" point, to which I replied no, no, no.

Another writer mentioned faction, particularly Michael Shaara's Killer Angels. I suggested the difference might be discerned by reading and comparing Evan S. Connell's Son of the Morning Star.

So how does a person write a creative nonfiction essay? I'd say incorporate these elements in telling a true story ...

• Reportage
• Interpretation
• Scene
• Drama
• Dialog
• Character
• Back story
• Sensory amplification
• Introspection
• Lyrical language.
• Visibility of the writer

The ADA Anniversary

From Sam Youngman in The Hill ...

Former President George H.W. Bush applauded President Obama on Friday for taking the time to commemorate the 19th anniversary of the Americans with Disabilities Act (ADA). Bush, in a statement distributed to reporters by the Obama White House, hailed the landmark legislation that he signed into law. Bush said "there is no place in our society for prejudice of any kind, yet it was not that long ago when Americans with disabilities were often not given equal rights and opportunities." "Whether the cause was ignorance or indifference, it was not acceptable," Bush said.

President Obama also signed a United Nations convention regarding the rights of people with disabilities.

Sadly, though, President Obama remains evasive about seeing that the Community Choice Act of 2009 is part of his health care reform program.

"Lies, Damn Lies, and Did You Contribute to My Campaign?"

Should people with disabilities -- no, let's make that "any political supporter" -- be surprised when a politician reneges on a political promise?

Frankly, I do not blame President Obama. He must cater to a myriad of constituencies, and I think in an atmosphere of political and economic neutrality, he would be sign the Community Choice Act of 2009.

The problem lies, I think, with Congress. No matter how progressive, the majority of members are tied to lobbyists and special interest groups with ropes woven from dollars. Representatives and senators need the dollars -- for reelection campaigns, to wield influence themselves, and because of a sense of entitlement.

It is no surprise that those with the least influence (among which are people with disabilities) are able to affect the least amount of action on the part of their so-called representatives.

Washington, D.C. ---Demanding an end to the institutional bias in the nation's health care policy, ADAPT, the nation's largest cross-disability, grassroots disability rights organization, took their fight to the headquarters of the Democratic National Committee (DNC) in Washington, DC, with simultaneous protests at Democratic offices across the country, and at Senator Max Baucus' office in Missoula, MT.

ADAPT is calling for Congress to eliminate the Medicaid institutional bias in 2009 - either in health care reform or as separate legislation, specifically the Community Choice Act (CCA). CCA (S683/HR1670) allows people to choose to stay at home to receive long-term services and supports instead of being forced into nursing homes and institutions because that's what the law will currently pay for.

The protesters are additionally demanding that the Democrats apologize for the loss of freedom suffered by countless Americans that resulted when a Democratically-controlled Congress created the institutional bias over 40 years ago; and that the DNC facilitate an immediate meeting between ADAPT and Senator Max Baucus, Chair of the Senate Finance Committee; Representative Henry Waxman, Chair of the House Committee on Energy and Commerce; and Valerie Jarrett, Senior Advisor and Assistant to the President for Intergovernmental Affairs and Public Liaison, to develop a plan to pass the Community Choice Act and eliminate the institutional bias in 2009.

"For 44 years, Medicaid's institutional bias has stolen the lives of Americans with disabilities and older Americans," said Mike Oxford, ADAPT organizer from Topeka, KS. It has deprived them of their most basic freedoms. The Democrats were in power when that bias was legislated. Now it's time for them to apologize, and most importantly, it's time for them to take action and fix it."

ADAPT's action nationwide comes in part as a response to a video released last week by the Democratic National Committee. The video tells Americans "It's time" for health care reform, and urges them to call their Senators. Picking up on that theme, ADAPT released its own video this week telling the Democrats "It's time" to eliminate the institutional bias and pass the Community Choice Act (http://www.adapt.org/takeaction ).

"The Democrats say they want health care reform to focus on covering more people and saving money," said Cassie James, ADAPT organizer from Philadelphia, "yet they refuse to change the current law that mandates people receive long term care in the most expensive setting rather than less expensively at home where they would rather be. In addition, the current law forces states to go through complicated procedures just to let a few people stay at home and get assistance there."

Many states have no home and community-based services, or they may provide limited services with waiting lists that keep people stuck for years in institutions and nursing facilities before they have any chance of getting services. It is not uncommon for people to wait so long that they die before their name reaches the top of the waiting list.

In an unprecedented show of unity this year, disability and aging groups across the country have demanded that healthcare reform be the vehicle to change federal policy which favors paying for institutions over community based services. They have repeatedly asked Congress and the President to pass the Community Choice Act, but currently, NO proposal in the health care reform package eliminates the institutional bias in Medicaid.

"The Democrats have historically supported the Community Choice Act every time it has been introduced in Congress," said Dawn Russell, an ADAPT organizer from Denver, CO. "Many in the disability community were optimistic that the Democrats would finally pass CCA and eliminate the institutional bias, but the Democratic leadership in Washington is doing absolutely nothing. It seems as though the Democrats are so concerned with political maneuvering that they have completely forgotten about the people they represent who have no voice in Washington."

"ADAPT is concerned about people who right now are stuck in nursing facilities and other institutions. We are concerned about people on Medicaid who will continue to be forced into those places if the law isn't changed. And if the Democratic leadership won't speak up for them, then I will," added Russell.

How Ironic ...

This Friday President Barack Obama will sign The United Nations Convention on the Rights of Persons with Disabilities. That's all well and to the good, especially since Article 19 of the convention replicates what is proposed by The Community Choice Act of 2009.

There's only one problem. The government is frustratingly obtuse about the importance of free choice and deinstitutionalization of people with disabilities.

Want proof? The president's own Democratic Party is now the subject of a demonstration at the Democratic national headquarters, according to Facebook reports from disability activists. Want proof that the issue is at the edge of public consciousness? Put the words disability rights demonstration democratic national headquarters in the Google News search box, and there is no return (circa 1:00pm CDT 07/22/2009); put the words disability rights demonstration in the same search and the most recent entry is for a demonstration in Pittsburgh, Pennsylvania yesterday.

Talking Back to Peter Singer

Thanks to Stephen Drake, I've learned that it is possible to leave a comment on Peter Singer's "rationing health care" piece in the New York Times.

It's interesting to me that Singer receives a significant amount of support, although there are several who mentioned the elephant in the room: health care is already rationed using the "ability to pay" as the mechanism. That is true, of course, somewhat so even when a person is covered by Medicare. The only true socialized medicine we have in the USA operates under the auspices of Medicaid, but no one sends a Medicaid patient to Memphis to secure a liver transplant.

Here is the link to leave a comment.

Here is my comment, mainly a restatement of yesterday's blog post.

There is simply no valid means of mathematically objectifying a person’s subjective appreciation of his or her life. If we lose our moral compass and head down this ethical detour, we should not limit to the QALY standards to people with disabilities; we should apply it to everyone. By that means, Singer can weed out people who are unhappy because of racial or religious discrimination, because they feel they are trapped in lousy jobs, or because they never got their big break in Hollywood.

And then of course, Singer can move on to using QALY in his quest to bring euthanasia into the health care dynamic.

Peter Singer Applies Utilitarian Values to Your Life

As a disability activist wrote elsewhere, The New York Times seems to be infatuated with utilitarian philosopher Peter Singer's take on social issues. Today, the newspaper prints Singer's essay "Why We Must Ration Health Care."

What people with disabilities (current, or subsequent) should be concerned about is Singer's desire to assess value to other people's lives in order to determine how much should be spent to preserve them. Deep into the essay he delves into polling and mathematics and economics to assign value to human lives, especially those who have disabilities.

"One common method is to describe medical conditions to people — let’s say being a quadriplegic — and tell them that they can choose between 10 years in that condition or some smaller number of years without it. If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life. (These are hypothetical figures, chosen to keep the math simple, and not based on any actual surveys.) If that judgment represents a rough average across the population, we might conclude that restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar."

Singer then begins to suggest a standard called the "quality-adjusted-life-year," a factor he is willing to compute by allowing people with disabilities to judge their lives on the basis of prospective cure.

"If we do that, and we find that quadriplegics would not give up even one year of life as a quadriplegic in order to have their disability cured, then the QALY method does not justify giving preference to procedures that extend the lives of people without disabilities over procedures that extend the lives of people with disabilities ... This method of preserving our belief that everyone has an equal right to life is, however, a double-edged sword. If life with quadriplegia is as good as life without it, there is no health benefit to be gained by curing it."

Singer's argument has three flaws, as I see it from down here in my wheelchair.

1. If "QALY" is a judgment value, why should we not apply the standard to those who live unhappily in poverty or constrained by the rigors of racial discrimination?
2. Why does Singer believe it is possible to use mathematically objective formulas to assess other people's subjective appreciation of the value of their lives?
3. Do those who might support this "quantification of life" understand that this same logic can be applied to any interaction between the individual and the collective, which given Singer's record suggest pre-natal screening and QALY-applications to euthanasia?
   

Crips, Midgets, Language, and Freedom, Part II

As a follow-up to a recent post -- "Crips, Midgets, Language, and Freedom" -- I learned of an article on Salon.com regarding the controversy over the (incorrect) supposition that The Little People of America wanted to ban the word midget.

It's an interesting, well-researched, and nuanced piece, written by a person who has a little person within her family. Find the article here.

The most telling comment is near the end, one which applies to nearly every person with a disability. It comes from the actor Mark Povinelli.

"You can call me 'midget' -- that's your problem, not mine. But when you ignore me as a human, when you don't give me the courtesy you'd give a person of average height, that's when it really gets me."

However, I am also intrigued -- I might even say somewhat dismayed -- is the nature of many of the replies from readers.

The Rationale for Assisted Suicide Carried to the Ultimate

Here is the lead paragraph in a story from The New York Times about assisted suicide.

LONDON — The controversy over the ethical and legal issues surrounding assisted suicide for the terminally ill was thrown into stark relief on Tuesday with the announcement that one of Britain’s most distinguished orchestra conductors, Sir Edward Downes, had flown to Switzerland last week with his wife and joined her in drinking a lethal cocktail of barbiturates provided by an assisted-suicide clinic.

Downes was not mortally ill. He chose death over living without his wife's companionship. I understand that.

And I understand the reaction of euthanasia advocates. Downes' choice takes the argument for assisted suicide to the ultimate, far past their dream that euthanasia be incorporated into the dynamic of medical treatment.

They would assist the physically ill or the physically disabled,, but they do not want to face the fact that sometimes that other part of our make-up -- our intellect, our soul, our emotions -- turn against us.

We are free to kill ourselves. What I do not want is to shift that responsibility to an organization that might substitute its will for our own.

Budgets, and Bodies

There was an interesting piece published recently in the Chicago Sun-Times. We all know nearly every government agency has taken a budget hit over the past few months. "It's the economy, stupid," to quote one of the instigators of this mess, Ronald Reagan.

But governments provide services, one of which in Illinois is paid attendant care for people with disabilities who need such to live independently -- and productively -- in the community.

Read the piece here.

Michael Ervin is waiting to find out if he will be able to get out of bed Wednesday morning.

That's what this state budget crisis means to him and thousands of other residents in Illinois.

Ervin is a Chicago playwright, free-lance writer and community activist. He also happens to be physically handicapped. Without the help of a home service aide, paid for by the state's Department of Human Services, he can't get out of bed.

This local-to-Illinois crisis reflects the need for the incorporation of the Community Choice Act of 2009 into national health care reform.

The uninformed might say, "A nursing home or other institution is the place for people in such circumstances."

That's wrong, both from a civil rights point of view and from an economic point of view. The cost of the attendant care Ervin needs is probably half the cost of incarcerating him in a nursing home -- a place where his life would be regulated rather than productive.

There is a place for nursing homes in our society, but a nursing home is not the place for every person with a disability who requires attendant care.

Reason, Faith, and Revolution Review Re-published

• On the newjerserynewsroom.com site

Book review: Defending the divine
Monday, 13 July 2009 12:04
REASON, FAITH, AND REVOLUTION: Reflections on the God Debate
By Terry Eagleton 185 pp. Yale University Press, $25.00




Click on cover image for Internet Review of Books site.

What Am I Doing Here in This Fishbowl?

There's a new greeting card company which now offers cards featuring people with disabilities -- Fishbowl Cards, Inc.

I'm not sure how I feel about the idea. Of course, there seem to be greeting cards for almost every occasion -- divorce, for example -- and I do understand the impetus for dolls and other toys to be offered that reflect the identity of the buyer.

But, the ugly truth be told -- and despite nearly 50-years riding around boob-high to the world -- I would not put disability as the first element of that which makes up Gary.

The card designs are interesting, and fill a niche, all the same, and I wouldn't be offended if someone chose to send me one.

ACLU Takes on National Identity Numbers

A friend sent me the link to this clever little Shockwave Flash File that leads to the American Civil Liberties Union website. It's a skit about the Orwellian capabilities if and when national identity numbers are mated with persuasive computer technology.

Random thoughts ...

• We already have unique identifying numbers, our Social Security numbers, and I find I'm often asked to recite the last four digits as a semi-password.
• I've found that more than one business establishment knows from where I am calling if I use my land-line telephone.
• Those who complain most about illegal immigration and undocumented workers -- We need action! -- implicitly are calling for something like this because there may be no other way to gain control of the issue.
• It's also intriguing that the ACLU skit refers to a "national health insurance provider," and we are in the process of reordering the medical system in the USA in that direction.
  
• The real push for such identities won't come from the government but rather from international corporations in the name of efficiency.

Assisted Suicide in Great Britain

There's an interesting article in The Herald wherein the writer, one Anne Johnstone, recounts her epiphany on the subject of assisted suicide. She writes ...

"Why have I changed my mind? The leader writer in me would carefully marshal the intellectual arguments against reform and harvest some key quotes from medical and religious leaders but that would be fundamentally dishonest because this change is primarily heart-felt."

... and goes on to relate the "heart-felt" change came about because of personal experiences.

It's well worth the read, and I finished the essay believing that among assisted suicide advocates once the personal meets the utilitarian there is invariably a change.

Sadly, if we recognize the impetus of the assisted suicide movement is utilitarianism -- an assumption that humans can take control, to direct life along the path of least resistance and most profit for those who can profit -- we find ourselves shouting into a whirlwind.

That understood, it is depressing that those who talk about "death with dignity" can be persuaded that humane and empathetic palliative care is far better than utilitarian disposal only when it influences them personally.

Crips, Midgets, Language, and Freedom

BROOKLYN, N.Y.: Little People of America is petitioning the FCC to add the word "midget" to the list of what cannot be uttered on broadcast television. The LPA, which represents people with various forms of dwarfism, is urging its 6,000 members to file complaints with the commission over the use of the word in an episode of "Celebrity Apprentice."

There is some discussion among disability activists about the The Little People of America's attempt to move the m-word into the province occupied by the n-word, the r-word, and f-word. Ironically, a good number of people with disabilities have co-opted the word "crip," although not without some controversy within the ranks. I use crip myself, mainly as a way to assume control of a situation.

One thread of the discussion focused on the idea that too many of the individual "ban the word" attempts are counterproductive to the collective disability rights movement. Alternately some worry about freedom of expression.

I find myself in the second camp, even though I truly understand that any language or label that attempts to differentiate often attempts to denigrate. The very incident the LPA points to illustrates the word was used in a hateful and derogatory manner. Think not? There's a simple enough test: substitute the n-word, or even its once-acceptable root word, negro.

I'll make it personal. Even though I don't believe the word should be removed from the language, I don't like being called a cripple, and so I can readily understand that a little person would object to being called a midget.

Funnily enough, I thought that forms of the word "dwarf" were not acceptable, but I note that it appears in the first paragraph of the news release. Apparently, the LPA proposes "little people" to incorporate every person of short stature.

We all know that language, which is both symbolic and defining, is one of the primary elements of self-identification. And people of small stature historically have faced derisive comments. In fact, the word midget has resulted from a negative derivation: midge -- small dipterous insect inflicting painful bites.

When dealing with the perception of disability by those who are not yet disabled, I sometimes think "Anything goes!" is the correct approach, by which I mean humor (aggressive humor) and in-the-face tactics work far better than complaints.

• For more on the issue, I suggest these two short pieces about the word.

"I'm Going to Graceland, Memphis, Tennessee ... "

Graceland, June 2009

Don't be fooled. Choosing an early hour on a Monday morning in June won't let you avoid the crowds at Graceland, the late Elvis Presley's home in Memphis, Tennessee.

Another thing: telling management that your surname earns you no discount.

Frankly, Graceland was disappointing in many ways. As I think I remember, the family sold the "rights" to Elvis-as-a-legend to a large corporation. That corporation -- or perhaps the family before the sale -- now has 15 or 20 acres across the street which incorporate most of the tourist site. There's an admission area and several gifts shops, and there are exhibits of automobiles and aircraft, one a large 4-engine jet. Both those exhibits are tour'able only for an extra fee. The $100 went spent earned four adults admission to the mansion.

And that required a shuttle ride across Elvis Presley Boulevard, a shuttle that was equipped with a wheelchair lift. In fact, as far as I could tell, only the mansion's basement and the aircraft were inaccessible.

Graceland's living room.

The mansion itself wasn't built for Elvis. He purchased it from a prominent local family. It seemed ... small. Small, at least, compared to the mansions commonly presented on television tours. And having been frozen in time at the point of Elvis' death, Graceland also seemed ... dated. But not in the way we think dated when we tour a Victorian exhibit and marvel at the classic style; instead, it seemed tacky.

Were I cynical, I would say Graceland and its environs gave off the air of being a tourist trap. But it was a hot and muggy day, and I suppose I left the place tired and cranky.

"Swords into Plowshares ... "

Evangel to Demolish Last of WWII Barracks

Once in a while, I'll see a story in the local newspaper about a couple celebrating an anniversary, with the man having arrived in Springfield, Missouri either as a patient for or on an assignment to O'Reilly General Army Hospital.

It was one of the primary military hospitals in the midwest during World War II, quickly thrown up in the early days of that great conflict on a patch of open ground in the northeast part of the city.

From a local history of the hospital ...

O’Reilly’s staff served over 100,000 patients during the hospital’s five years of operation. 42,000 patients were wounded and injured soldiers—even a few German prisoners of war. All were treated at an average cost of five dollars per patient per day.— In addition, 60,000 civilian dependents of military men also were treated at O’Reilly’s outpatient clinic, and a few even gave birth to children there. Healthcare today could take a lesson about efficiency from O’Reilly’s staff.

During the years after the war, the part of the campus was turned over to the Assemblies of God church, and it became the site of Evangel College (now University).

"Swords into plowshares ... "

• Despite sharing its name with a prominent local family, the hospital was named for a former surgeon general of the US Army, Robert Maitland O'Reilly.
• Evangel University's O'Reilly Army Hospital history.
• I suppose the "last building" resonates so much with me because I lived in a converted hospital barracks, albeit at Fort Jackson, South Carolina, circa 1950 while my father was stationed there.