SEVEN WHEELCHAIRS: A Life beyond Polio

Gary Presley, author of SEVEN WHEELCHAIRS, now Blogs at ...

2010-01-16T14:42:00.000-06:00

GaryPresley.com

Modern Love: Another Reaction

2009-12-04T12:49:00.000-06:00

By Carol VanHook

A teacher in our school has adopted “A Day in a Wheelchair” and is providing a couple of wheelchairs per day for staff and later, students, to “break from comfortable routine, the courage to act, the courage to be an agent of change, and a leader in our community...”

I had the privilege today. And I share my experiences. But first, I read Seven Wheelchairs over the Thanksgiving break.. Congratulations on a beautiful memoir and the recent attention in New York Times. You do have a magical gift with words; your story speaks of courage, pain, triump, humor, anger, and beautiful love! You are a role model in many ways for everyone. Keep writing and publishing!

Today’s thoughts ...

In the chair for the first time, I was positioned to see down a long, empty hallway. My initial thought, “Oh, what a long journey.” I have never looked at this hallway in the same view. I think this journey is symbolic of a bigger thing…the journey of life in a wheelchair.

As I took off on this journey, I saw I was in for a slow walk. A kind student came right up and asked to push me to the library. In a second, we were off. I didn’t forget the two important words…thank you!

I seem to be noticing natural things more. I hardy take the time to see the sun rise in the library, but today, my view is at a slower pace. And thus, I marvel at the sun shining in my office. But with my inexperience as a wheelchair driver, I am not moving too quickly and the sun begins to be a nuisance as it needs to move, rather than me move!

My first big lesson, BE CAREFUL when bending over to pick something up. I almost fell out of the chair. These chairs are wicked! Is it okay to laugh at yourself? I think so.

It is amazing the looks and stares from people. On the way to the lunchroom, I wanted to say, stop staring. Many students do indeed treat the wheelchair occupant as nothing out of the ordinary but others simply stare. It is a comfort when a person pops up and says, “Hey, let me help you carry that lunch or push you through the hallways.”

Our pathways are tight throughout the school. I see from this experience that it would be nice if people would push chairs back in and tidy the rooms. It is easier for accessibility when the pathways are clear.

I went to the Library Café for a cup of hot cider. I didn’t think about being a one-handed driver with a cup of cider. It didn’t work; I went in circles. Again, I discovered helpful students to get me from one location to another. More thank yous!

Oh, about the bathroom experience -- Being a staff member, I thought I would tackle the office restroom. No way! Even though the sign said wheelchair accessible, it was not!

I then proceeded to the girls’ student restroom with a similar sign. I had to have help with doors getting in and out! In the stall, I got stuck in the room backwards. What an experience! I hope it is not cheating that I had to use my feet to push myself backwards out! And then, I couldn’t exit the outer door. I opened the door enough to holler, HELP! Thanks to the young man who came into the bathroom to hold the door open wide enough so I could maneuver my way out! I had a large wheelchair that was forever getting stuck!

I enjoyed talking with a fellow student in his wheelchair. We talked about muscle strength, interests, and the normal school talk. I encouraged him to pursue whatever his heart desires for future after high school.

What I learned?

I am clumsy. Southeast Polk students are helpful for the most part, either by volunteering or with a simple please and thank you. I can maneuver a wheelchair with practice but do leave some nicks and dings along the way!

Door entrances are tight. We need to push chairs in for easier handicap maneuvering. Let’s just do it, without being asked.

Life moves at a slower rate in a wheelchair. I see things at this level that I might have missed a few feet higher up! Seeing the sun shine in the library today was a good feeling; ordinarily, I might have moved away from its glare and missed this feeling of appreciation.

Matters not if we are in a wheelchair or on two feet. We are all the same and valuable to this Earth, yet diverse from one another in some way. There should be no pity or sympathy for an obvious disability. We all have disabilities that just don’t show. Each life on Earth is important and should be lived and appreciated to the fullest. I am happy to have participated in this experience. Thank you, Southeast Polk, for this opportunity.

Thank you, Mr. Presley, for shedding light on the diversity, important gifts, and beauty within each and everyone of us!

Seven Wheelchairs: A Life Beyond Polio, Gary Presley (Univ. of IA Press, 2008)

Words spoken by Mr. Presley…

…murky line between compassion and pity, sympathy and condescension…

Sincere sympathy may be a little better, but I don’t want it. Whatever warmth it provides you, it is of no value to me. Empathy, silent empathy, which unvoiced assumption of our commonality, I suppose is best of all. Empathy does not ask me to decide if I am worthy. Empathy simply recognizes we all ride this world together…

p. 224

My response ...

I thank you sincerely for your kind words about my book, and I appreciate you taking the time to write, Ms VanHook.

Truth be told, many in the disability rights movement are ambivalent about "wheelchair demonstrations" -- primarily because such experiences do not reflect some of the most ugly aspects of life faced by people with disabilities (employment issues, discriminatory health care, etc.) but I think you've hit upon one important aspect of their value: an example of the need for universal design.

While I cannot remember if I stated it outright in my memoir, I know the implication of the story of my early isolation illustrates the ... idiocy of the resistance to making every home and business totally accessible. I would have recovered emotionally and perhaps even physically far sooner had I been able to visit friends and family without undertaking a major logistics enterprise.

Another thing that struck me about your thoughts is the idea that courtesy and empathy seems to bubble up when a person with mobility disabilities is in need of a bit of help.

Too bad, I think, that we are not as thoughtful in general.

Long ago, I used to refuse help. I reached a point where I accepted it. I apparently have evolved further -- now I ask for it, from friend and stranger alike. I suppose it's another aspect of my belief that I can "advocate" for disability rights (for that "commonality" which you quote from my memoir) by simply being present in the world, by refusing to sit in the background, by making my needs known whether that be assistance in opening a door or the insistence that society will continue to segregate people with disabilities because we are not visible in society unless we turn to (among other things) universally accessible design.

drawing image linked from Wheelchairnet.org

"We All Need a Sappy Story ... ?"

2009-12-03T14:40:00.000-06:00

image from Wikipedia

A comment on Modern Love from Voulez-vous and Tigger Too ...

"I love this story, Reader's Digest-sappy though it may be."

"I'm Crippled, Not Disabled!"

2009-12-02T14:47:00.000-06:00

Illustration of Quasimodo from Wikipedia

I have been surprised by some of the reaction to an essay of mine that appeared in the Sunday, November 29, 2009, issue of The New York Times.

The essay came out on the page at over 2500 words, and the Times keeps Modern Love essays to 1800 words. I worked with the column editor, and then the essay went through copy-editing. There the process came aground temporarily on a sandbar in the form of the word "crippled."

The New York Times does not use the word in relation to people's physical condition. I had used the word purposely, for the same reason I used words like "gimp" and "crip" in my memoir: to take possession of the person I am.

I recognize myself as being "crippled." I do mind being "disabled," which was the suggested substitute, because it seems to echo in its perception of limitation my father's constant admonition against using the word "can't."

I suppose my objection to "disabled" was somewhat hypocritical since I would rather term myself a "person with a disability" rather than be identified one of those ugly terms like "wheelchair bound" or "confined to a wheelchair."

On the other hand, I think the word "disabled" seems infinite, applying all the time in every circumstance, while " ... with a disability" suggests possibilities remain.

Neither the copy editor nor I got exactly the word we preferred. I suggested "paralyzed," and he agreed.

You can read the essay here.

Modern Love in the New York Times

2009-11-30T11:41:00.000-06:00

An essay, which is an expansion of an anecdote in my memoir (Seven Wheelchairs: A Life beyond Polio) appeared in the Sunday, November 29, 2009, issue of The New York Times.

You can read it here.

Guest Post: "Home Sweet Home"

2009-11-25T13:58:00.000-06:00

ADAPT Supports the Community Choice Act!

“Home Sweet Home”

By Joy Caldwell

“Home, sweet home.” What does this phrase mean to you? What kind of feelings does it stir inside? The feelings and thoughts attached to these words are as unique and different as the person hearing them. Generally though, there is agreement that the word “home” stirs feelings of warmth, welcome, and a sense of belonging in addition to a place of shelter where needs are met in a caring environment versus the word “house” – a physical place of residence providing shelter.

It was with some of these thoughts in mind that I ventured out to visit two of Washington State’s Residential Habilitation Centers (RHC’s) at Fircrest & Rainier in Shoreline & Buckley respectively. Having heard arguments on both sides of the debate – for & against consolidation & closure of these facilities, I wanted to see for myself and form my own opinion. “Are these institutions really home where people live in a place of warmth with a sense of belonging where their needs are met in a caring environment? Or are they institutional houses where people are placed with their basic needs met?”

I was particularly struck by the locations of both of these RHC’s. They are both located in lovely surroundings on large parcels of land, beautifully landscaped in picturesque settings, yet notably secluded and separate from their surrounding cities and communities. Arriving at Fircrest, I couldn’t help but notice the age of the brick buildings, the overwhelming impression - cold and impersonal. Of course the large unsightly food, laundry, and garbage carts located outside the front doors of each cottage confirmed I had indeed arrived at an institution versus a community. Rainier on the other hand reminded me of an army base or prison facility behind the gates and fences with its old-style stark white peeling paint and red Spanish tile roofs, and buildings connected by long covered walkways.

I found the facilities at each campus were clean and maintained, though they felt cold, stark, archaic, and in great need of modern updates both inside and out. I found it peculiar that décor on both campuses looked like thrift store purchases from many years gone by, curled posters, cheaply framed faded prints, outdated curtains hung on barred windows if at all.

I appreciate the work that these residents perform: sterilizing used Comcast remotes, shredding documents, thrift store duties, and pouring beautiful paving stones. However, the biggest factor I found lacking was the sense of community. I kept pondering, “How will the community ever be able to appreciate the values of self-determination, independence, inclusion, integration, and productivity for people with developmental disabilities if they’re kept isolated and segregated? When was the last time these adults and youth went on a vacation, went camping, saw a school play, or heard the laughter of a child?”

At Fircrest, each living room is arranged with one shared T.V. and generic “Dr’s Office” chairs set around the sparsely decorated walls of the vinyl floor room. Each child, youth and adult at Fircrest has their own very small bedroom, meagerly furnished with a twin-size bed and dresser. Out of the dozen or more bedrooms I visited there, only a meager few appeared personalized in any way. I thought, “Even college dormitories are more appealing than this”. Unfortunately nothing I observed about this campus made me feel the least bit inclined to sit down, get comfortable and have a cup of tea anywhere – a pleasure I instinctively link to feelings of home.

To my surprise, I did observe more texture, color and variety when it came to décor and “home-like” comforts in the Rainier cottages, where 8 residents share two warmly decorated living areas per side with more comfortable furnishings, overstuffed chairs and recliners. I noted that some of the Rainier residents also share larger more personalized bedrooms, 2 to a room, comfortably furnished with warm décor. Colorful attractive home-style dinnerware adorned Rainier’s tables while residents ate from standard melamine cafeteria dishes at Fircrest.

I have a daughter with multiple disabilities, similar to many of the residents in these two facilities. When Jessica was born with Down syndrome and cerebral palsy, I was given the option to place her in an institution where she’d be cared for. As I toured the RHC’s, I kept thinking, “Would Jessica be comfortable enough to call one of these cottages home? Would she be happy with the lack of freedom, lack of choices and lack of independence? Is she really safer set apart FROM the community in an institutional house or safer IN a community home?”

I couldn’t help but feel sad and discouraged as I left these properties, wondering if the adults and youth were there willingly or if they’d ever been given a choice. I felt equally troubled for the families who had brought their family members to these houses. What choices and options were they given?

As I pondered the thought of “relaxing and having a cup of tea in the Rainier Cottage”, a wise friend kindly reminded me of the secrets behind these walls – the abuses committed when there is no choice, no freedom, no other option, no way of escape. Are these dear people really at Home Sweet Home or prisoners kept safe inside prettied up institutional houses? My friend is right; I don’t want to drink my cup of tea here either.

As I drove away from these RHC’s, these institutions, these duplex houses, I turned my heart towards the warmth of home. My heart felt lighter as I pondered my daughters, each with her own unique and different abilities - her sense of belonging, her safe place in our home where hugs abound, laughter comes easy, choices are made, freedom is earned and independence is learned. “Home Sweet Home” – the words have never meant more.

Joy Caldwell , Skagit County Parent Coalition Coordinator is a parent of a child with a disability. Joy Caldwell has been both a formal and informal advocate for families and people with disabilities for the past twelve years. Joy has developed and taught seminars and workshops to the general public, early interventionists, therapists, teachers’ assistants, caregivers, support workers, and parents. During her time in Edmonton, Alberta, Canada, she served as Chairperson on the Executive Board of Directors for the Edmonton Down Syndrome Society for two years.

Just Food: A Book Review

2009-11-16T14:25:00.000-06:00

I had the good luck to be assigned James McWilliams' Just Food for a review in this month's Internet Review of Books. It's a superbly argued thesis advocating a thorough rethinking of how human beings approach the idea of food.

If you cannot afford to buy a copy, I urge you to check the book out and read it when it arrives at your local library.

Just Food author James McWilliams also has an opinion piece in today's Washington Post.

Read his opinion piece at this link.

Read the IRB's review of Just Food at this link.

An Interesting Contretemps ...

2009-11-12T11:49:00.000-06:00

The story begins ...

"Glee" wheelchair episode hits bump with disabled
By LYNN ELBER (AP)

LOS ANGELES — The glee club members twirl their wheelchairs to the tune of "Proud Mary" and in joyful solidarity with Artie, the fellow performer who must use his chair even when the music stops.

The scene in Wednesday's episode of the hit Fox series "Glee," which regularly celebrates diversity and the underdog, is yet another uplifting moment — except to those in the entertainment industry with disabilities and their advocates.

For them, the casting of a non-disabled actor to play the paraplegic high school student is another blown chance to hire a performer who truly fits the role.

I understand, and I support the effort, not so much because I don't think a person without a disability can adequately portray a person with a disability, but rather because it makes for one less job for the PWD.

The central point to me is to see disability portrayed as one color on the rainbow of the human condition. That includes portraying authentically the character's
ethical/moral warts and scars.

Of course, if a producer, writer, or director is not willing to show the authenticity of disability, that person may not be willing to show the humanity of disability.

Congratulating Peter Singer

2009-10-27T10:59:00.000-05:00

There is an article in The Daily Princetonian celebrating Peter Singer's ten year anniversary at that institution.

Of no special import, this article, other than it accused one of the groups leading the opposition to Singer's appointment -- the disability rights organization, Not Dead Yet -- of staging "violent protests."

The misstatement has been retracted, but it is interesting to read the article and see (if the quotes are more accurate than the words about Not Dead Yet) how many students and graduates were captured by Singer's utilitarian logic.

Of course, many people who dissect Singer's work -- for example, his theoretical idea that infanticide in certain circumstances is the proper choice -- will recognize he wrenches utilitarianism into a corkscrew twisted enough to fit through the keyhole of logic.

Were we to substitute any other class of people -- chronic alcoholics, those with five felony convictions, those in permanent custodial care because of mental disease, etc. -- for infants born with disabilities no doubt we would see support dwindle rapidly away for his so-called philosophy.

One Small Step for the Wheelchair Bound

2009-10-25T14:44:00.002-05:00

The issue of the so-called "Dignity Wheelchair" came up for discussion about people with disabilities who can sometimes influence the media. One person took action, Brewster Thackeray, AARP's Disability Community Liaison.

Thackeray wrote me, "I just had a good chat with Jeff Deutscher, the media contact at Dignity Medical Services. Very nice guy. He was not familiar with disability terminology but was highly receptive to the points I made and felt they were very helpful. He and I did some marketing brainstorming and I shared a lot of disability perspective. He understood that both from a disability advocacy and an AARP-style caretaking perspective the term wheelchair-bound is misguided. He has promised to revise that term and also change "the disabled" to people with disabilities. I also learned a bit more about the product, which itself sounds rather promising."

I appreciated his action, especially since I didn't act myself. But, as I told him, the name "Dignity" continues to rubs me the wrong way, to coin a phrase. As far as I am concerned, evacuation of one's bowels or bladder is "dignity-neutral," and to imply that I need a certain type of potty/shower chair to preserve such doesn't suit my idea of myself.

Thackeray responded. "I don't use a wheelchair myself, though I have a disproportionate number of friends who do. The name didn't rub me the wrong way. I agree with you that going to the loo should be dignity-neutral, but I have seen how avoidable transfers can cut into the dignity both of the chair user and caretakers. I totally respect of course that transfers are often needed, and even desirable for circulation, etc., which is a separate discussion topic. But I can see how this chair in some circumstances could help avoid "indignifying" situations."

Perhaps I am overly radical.

An Undignified Observation

2009-10-24T11:16:00.001-05:00

I keep a Google Alert running for "confined to a wheelchair" and "wheelchair bound" simply because [1] I don't like the terms and [2] I am curious about how they are still used in the English language.

This press release came up via my alert settings earlier this week, and after I read it I found it was garnished with phrases that irk.

After reading the release, I was found myself mulling over the name of the device -- "Dignity Wheelchair."

I began to think the designation might be sufficiently inelegant enough to fit a company who would send out a press release with "wheelchair bound" in the first paragraph. I am still not sure how I feel about the ... indignity of the release later using the possibility of decreasing workman's compensation costs as part of the chair's selling point.

I admit to being undignified. And more often than I would like. Nevertheless, I tend to believe that neither using a wheelchair nor the necessity of urinating or evacuating my bowels subtracts from my dignity nor differentiates me from the billions of other human beings who travel with me on this mortal coil.

Thus, I have no reason to believe that I actually need -- or require -- a special wheelchair in order to move within polite society. Dignity arises from how we act rather than how we look. I imagine Bernie Madoff looked quite dignified in the custom-tailored suits his Ponzi-scheme investment scam allowed him to purchase.

Richard the Monkey as a Service Animal, or Not

2009-10-23T12:44:00.001-05:00

photograph linked to the story on the Springfield News-Leader website.

The local "monkey as service animal" case made the radio talk show to which I listen today, and Richard the Monkey earned one pro and one con vote from the hosts. In relation to "service animal," the rules are both general and specific. From an ADA Business Brief:

Service animals are animals that are individually trained to perform tasks for people with disabilities such as guiding people who are blind, alerting people who are deaf, pulling wheelchairs, alerting and protecting a person who is having a seizure, or performing other special tasks. Service animals are working animals, not pets.

Under the Americans with Disabilities Act (ADA), businesses and organizations that serve the public must allow people with disabilities to bring their service animals into all areas of the facility where customers are normally allowed to go. This federal law applies to all businesses open to the public, including restaurants, hotels, taxis and shuttles, grocery and department stores, hospitals and medical offices, theaters, health clubs, parks, and zoos.

Traditionally, we seem to think of service animals as "guide dogs," but dogs do other things, including compensating for limited range of motion. With the historical "seeing eye dog" in mind, we often leap to the conclusion that all service animals are dogs.

A friend recently posted a comment, in fact, suggesting a further definition -- that is, only dogs of a certain breed might be qualified. Reading the government's text, though, leads to the inference that other animals might be service animals, at least in a sense that access must be available to them.

An aside: our family rescued a retired racing Greyhound dog about 20 years ago. It fell to me to walk him around the neighborhood for exercise. When people would ask me, "What kind of dog is that?" I would reply, "He's my seeing leg dog."

A most interesting intellectual exercise, however, is to read the actual court decision in the "Is Richard the Monkey a Service Animal?" case. The judge avoided making law -- that is, he avoided deciding whether a monkey-not-Richard might be considered a service animal. Instead he suggested, first, that the plaintiff did not have a disability, and second, that Richard had no service animal training and did not perform any task other provided the same sort of comfort and companionship that any other animal considered a "pet" might offer.

A Bonnet Macaque Named Richard

2009-10-22T15:10:00.000-05:00

The Bonnet Macaque from Wikipedia

Here in southwest Missouri, mainly in the city of Springfield, there has been an ongoing dispute about the nature of a service animal. Today a federal district judge ruled that a Macaque monkey is not a service animal in relation to a person with agoraphobia and anxiety disorder who desires to move about unrestricted in the public forum.

The local county health department was involved early on when the person made several attempts to take the monkey into restaurants. Another defendant in the court action was one of the two primary health care providers in the region, CoxHealth.

The news report is somewhat ambivalent in that there's no clear indication that a monkey cannot be recognized as a service animal under any circumstances. The dismissal of the suit seems to rest on the idea that the plaintiff was not disabled as established by law.

In her lawsuit, Rose claimed Richard is a service animal because he helps her deal with agoraphobia and anxiety disorder.

But the judge ruled that although Rose claimed to suffer from the disorders since the 1970s, she married three times, had children and worked at a variety of jobs and was not diagnosed until 2006.

The story in the Springfield News-Leader can be read at this link. Below the story are several comments, mostly derogatory personal attacks against the woman claiming disability.

Monkeys, of course, have been used as service animals for several decades, mostly in-home and to carry out physical chores for people with mobility disabilities. The plaintiff in this case apparently uses the monkey (the service animal) as psychological support.

Granting that her disability is real and that the monkey allows her to cope with it in some respect -- or to state it this way: that the monkey is a service animal meant to compensate for disability -- I am not sure that the animal should be allowed in facilities where food is served or in other places where transmission of bacteria or viruses might adversely influence a critical environment.

This monkey may be a descendant of a line of tamed ancestors, but it is a creature that can transmit disease more easily to humans than the standard service animal (dogs). The situation is made worse because tamed monkeys are so rare within the general population that people have not built up a lifetime of tolerance as they have with domesticated animals.

I'll not judge the woman's sincerity. I will say were I in need of a monkey as a service animal I think I would choose not to take it into public venues.

Why I Never Like the Ironsides TV Series

2009-10-19T15:47:00.000-05:00

A fellow member of a disability-in-the-media discussion list found this photograph on a site called Cheezburger.com.

It reminds me why I always resented the Ironsides television show. Raymond Burr -- Detective Ironsides -- would cruise around town in his custom van (Might it have be subtly racist that his driver was an African American? Of course, Don Mitchell later became a police officer and attorney as consciousness was raised among the writers.) and stopped at various venues.

The next shot? Ironisides indoors.

I've spent enough time outside of people's houses and public places to know that only the American with Disabilities Act opened doors for people who use wheelchairs.

Too bad these people didn't remember it.

And yes, I know the shot was probably taken from a perspective that obscured the ramp.

Book Review Published

2009-10-18T16:08:00.000-05:00

LIFE IN THE RING:
Lessons and Inspiration from the Sport of Boxing
By John E. Oden
Illustrated by Brooke Adams
224 pp. Hatherleigh Press $15.00

Life in the Ring is John Oden’s second book on the sweet science. Oden also penned White Collar Boxing: One Man’s Journey from the Office to the Ring.

A cynic might offer the opinion that Oden’s quest to find an audience while writing about boxing seems quixotic in this world where mixed martial arts dominate the sports page when it comes to fighting—unless another big name team player is in court because of a drunken nightclub brawl.

Life in the Ring tilts at an even more illusory windmill. Oden wants to discover universal life lessons in a sport few modern fans seem to follow.

Read the complete review here.

"Presley Is Not a Prose Stylist"

2009-10-15T20:32:00.000-05:00

A review in the Canadian Medical Association Journal, which is more supportive than the sentence would suggest, especially since the reviewer soon comes describes one section with "This fear is ever-present and palpable, and lends what Presley writes an incantatory quality."

Helen Keller, a Statue for a Proponet of Eugenics

2009-10-08T14:41:00.000-05:00

One of the ironies of life on this mortal coil is that heroes are flawed. This week Helen Keller became the first person with a disability to be honored with a ceremony in the Capitol Rotunda during which a statue bearing her likeness was unveiled. It’s the first statue in the Capitol showing a person with a disability.

She might have been the most highly visible person with a disability in the United States early in the 20th century, doing much by her accomplishments that disability can be irrelevant to a life lived in full. Oddly, though, Keller had a Peter Singer-like utilitarian approach to some elements of disability.

From Exceptional Family, Canada's Resource Magazine for Parents of Exceptional Children.

Among those high-profile supporters cited by Dowbiggin were utilitarian philosopher Robert G. Ingersoll, biologist and early eugenics heavyweight Charles Davenport, Food and Drug Administrator Harvey Wiley and Margaret Sanger, the founder of the American Birth Control League which eventually became Planned Parenthood. Other supporters were Helen Keller and civil rights lawyer Clarence Darrow, who advocated in 1915 that it was just to "chloroform unfit children . . . [and] show them the same mercy that is shown beasts that are no longer fit to live."

In this discussion it is perhaps interested to remember that Keller wasn't born "unfit." It is believed she lost her sight and hearing in early childhood as a result of Scarlet fever.

Here is a link to the ceremony honoring Keller.

Seven Wheelchairs: A Review

2009-10-01T15:01:00.005-05:00

A sophisticated and insightful review of Seven Wheelchairs: A Life beyond Polio is now appearing in Eclectica under the byline of the Canadian writer Niranjana Iyer.

Presley states that the aim of his book is to "show that a life disabled is a life worth living." But this work calls to my mind Socrates words—that the unexamined life is not worth living. Presley meticulously analyzes every instance where his actions and attitudes fell short of his own (very high) standards.

Read the complete review here.

"Look! It's Magic!"

2009-09-30T14:29:00.001-05:00

I have always been intrigued with how children respond to a visible disability, something I notice because my power wheelchair attracts attention where it goes. I wrote a guest post about children and disability perceptions recently for a busy blog called Ramblings of a Texas Housewife.

Find it at this link.

Cure: "The Holy Grail"

2009-09-29T09:39:00.007-05:00

Disability "cure" has been in the news of late. There's a long piece in Newsweek about a man with a spinal code injury who has evolved away from the idea of a remedy to repair a spinal code injury will be found in his lifetime. And in the New York Times, there is a long article about scientific work to find mechanical/electronic devices to compensate for blindness.

The stories touch on an element of living the life disabled that has troubled me since the time I was pulled from the iron lung and set free to roll my way home. I cannot recall ever having a desire for cure. In fact, I don't think I ever believed in the possibility of cure. I naively prayed for a miracle, of course, but ... at some point, I decided to live within the mystery of What Is.

Along the way, though, I have met people with disabilities, or read work by people with disabilities, who offer the thought that they would not accept a cure, would not accept a miracle, would not change from living with a disability to living with full physical function.

I thought the statement disingenuous at best. It doubtless is a reflection on my character and my flawed emotional state that such statements would frustrate me to the point of anger.

Don't they know what they are missing?

I did. I remembered running. No, better. I remembered being able to do for myself all that I cannot do now -- being independent of other people, which in some way is a fallacy discussed in a recent post.

I am no longer angered by such statements, although I've yet to grow to the point that I comprehend the complexity of their meaning or that I can visualize the strength of character, the equanimity of spirit that allows a person to express that thought with sincerity.

What I do comprehend is that a rush to cure -- a choice of cure over services -- works against the full integration of people with disabilities into society.

But that's another discussion.

"Accessibility Should Be for Everyone, Everywhere, Always."

2009-09-27T11:58:00.002-05:00

William Loughborough writes in the current issue of Independence Today about how language can sometimes define the perception of disability in society.

For the first few years of our lives, all of us are totally dependent on others for survival. Then, after discovering that we can survive without a full-time personal attendant -- usually "Mommy” -- we think that we are fully independent.

Read the complete essay here.

End-of-Life: Give Me the Right, Not the Decision

2009-09-25T01:22:00.000-05:00

Timothy Egan, a former reporter for the New York Times, continues to blog for the newspaper. His blog post yesterday provided an insight into end-of-life issues, as filtered through the family experience of a physician who happens to be the governor of Oregon.

What I especially appreciated was a comment by a bioethicist, Dr. Colleen Clements, which is worth reading after reading the Egan piece.

My own thoughts are that Dr. Clements comment highlights the idea that the motivation in restricting end-of-life care is financial rather than the comfort of the patient. The governor's parents were allowed to make their own decision. His mother was not required to leave the hospital because it was too expensive to treat her.

I might make the same choice to refuse some measure of treatment. I wouldn't want to be denied the right to have that choice.

Selling Seven Wheelchairs

2009-09-20T17:32:00.000-05:00

A few things I learned while attempting to market Seven Wheelchairs: A Life beyond Polio appear as a "how to" article on the website Selling Books.

You written a book? Now what? Surprise! A book author’s work increases post-publication. And the most important facet of that job is understanding that selling the book is mostly about selling yourself.

Read the list here.

Book Reviewing: Truckers, by Mary Richardson

2009-09-18T12:44:00.001-05:00

I review books regularly for The Internet Review of Books, and since many lucky reviewers get to choose what they'd like to review, I found myself with Truckers in hand. When I read the public relations material, I expected a coffee table book. And that would have been fine. I have one from Life Magazine on World War II that I treasure, and one on 1960's era Formula One racing that's dazzling. And that's why I ended my review with ...

Truckers suggests nothing so much as the grand old photo essays that were done best by Life Magazine during the 1940s and 1950s. If that’s your cup of tea, or bottle of mayonnaise—if you find information through imagery, Truckers delivers.

TRUCKERS
By Mary Richardson
With photographs by Phil Andrews, Jenny Williamson, & Meshakai Wolf
123 pp. Mark Batty Publisher $32.95

NAMI and Personal Miracles

2009-09-16T13:29:00.004-05:00

A writer and activist I know through the Internet has given me his permission to post a short piece about what NAMI has helped him accomplish for his family.

NAMI LA Walk 2009
by Jim Randall

It's that time of year again, NAMI (National Alliance on Mental Illness) is having its annual walk here in Los Angeles on October 3. It gives me an opportunity to tell you why this organization does terrific work and why they deserve your support.

In my teens, I doubt there were many families as affected with mental illness as mine. Both my older brother and sister had schizophrenia, the disorder that leads to hallucinations and delusions. Their illness was so disruptive that it made the rest of our lives seem almost more than we could stand. Through a tragic set of circumstances, we lost contact with both my brother and sister.

About 5 years ago, I became more interested in learning about mental illness to try to better deal with my past. I took the Family to Family class and learned about the various intricacies of mental illness, how to talk to someone suffering from a disorder, and how to accept them for who they were. I had thought I knew everything about mental illness, but the class taught me how little I truly knew.

But only a year later that new found knowledge became my family's salvation. I ran into my brother on the street after not seeing him for almost 25 years. The knowledge I learned in the NAMI class taught me how to play a positive and active role in his life and to get him the care and treatment he deserved. He's now off the street and has a part time job at Step-Up. I can tell you that miracles happen.

Better yet, I can tell you miracles can happen twice. I didn't pursue a career possibility outside the state because I thought my sister might some day turn up at my door step. After not seeing her for several years, that day finally came. Again, through the knowledge I gained from NAMI I was able to help her off the street and get her decent care.

So that is why every year I ask for your support. If you want to donate money, please click on this link.

If you want to be part of my team and help raise money by asking your friends and coworkers for donations, you can find out how at this link.

Sheri Fink Interview about Her New York Times Article

2009-09-15T19:48:00.001-05:00

Healthcare PSI blogger DK Raymer found an interview with ProPublica reporter Sheri Fink who discusses her piece that appeared in The New York Times, Strained by Katrina, a Hospital Faced Deadly Choices.

What continues to fascinate me is that even in the Fink interview, at least as displayed above, there is little recognition that people died -- no, were apparently killed -- because physicians did not know how to cope with their illnesses or disabilities within the environment of a disaster.

The worry I think even for Fink, I infer, is to avoid putting doctors and other medical professionals in situations where they might be forced to kill again.

From The New York Times article

Emmett Everett, a 380-pound man — was “very aware” of his surroundings. He had fed himself breakfast that morning and asked Robichaux, “So are we ready to rock and roll?”

The 61-year-old Honduran-born manual laborer was at LifeCare awaiting colostomy surgery to ease chronic bowel obstruction, according to his medical records. Despite a freakish spinal-cord stroke that left him a paraplegic at age 50, his wife and nurses who worked with him say he maintained a good sense of humor and a rich family life, and he rarely complained. He ...had no D.N.R. order.

Everett’s roommates had already been taken downstairs on their way to the helicopters, whose loud propellers sent a breeze through the windows on his side of the LifeCare floor. Several times he appealed to his nurse, “Don’t let them leave me behind.” His only complaint that morning was dizziness ... .

... what happened next. She told Justice Department investigators that she watched Pou and two nurses draw fluid from vials into syringes. Then Johnson guided them to Emmett Everett in Room 7307.

What happened to Emmett Everett has nothing to do with disaster planning; it has everything to do with doctors being unable to deal with a specific situation and choosing the easy way out.

Dependency and Being a Jerk, Further Thoughts

2009-09-14T15:23:00.005-05:00

Discussing my comments on this issue, one reader reminded us that what is happening to Nyle Nagy at Brookhaven Care Center (update) is sheer negligence and, secondly, a civil rights issue. Another person remark through Facebook, "So -- what's the alternative? Being a good little inmate?"

My point, obviously not properly made, is that this ugly situation, this brutal bullying is precisely what many people with disabilities have come to expect when they are forced to rely on other people for essential services.

It's a sad fact that this sort of coercion, this sort of punishment occurs in family situations as well. And let's not mention the acts of homicide.

Obviously, it does not happen everywhere in every situation, but it happens often enough that people with disabilities should be apprehensive. To me, it goes beyond professional negligence and a violation of civil rights. It is an ugly display of immorality.

For much of my life, I have often lacked the courage to confront people who seemingly intend neglect. And I am certain it takes courage to accept the consequences of being a strong person, the sort who is willing to demand that his or her needs be carried out exactly as that person wishes even if it is contrary to what the service provider believes is acceptable.

And even if it is a threat to safety or welfare.

I prefer manipulation. Whether that manipulation comes in the form of good manners, hypocrisy, or outright bribery depends on the situation.

Negligent care? Outright abuse? Violation of my human rights?

I intend to endure. I will survive the bastards I encounter.

Dependency and Being a Jerk

2009-09-13T15:57:00.000-05:00

One thing that helps a crip survive is good manners. It's a fact that jerks get waited on last, whether the jerk is in line at the hardware store or happens to need personal attendant care because he has a physical impairment. Thus, "good manners" -- and appreciation, even if it might be necessary to fake it.

All this is brought to mind by a story circulating about a man with MS captured by a nursing home in British Columbia, Canada. He uses medical marijuana. Apparently the nursing home administration doesn't like that, even though the medical marijuana is provided to him by the Canadian federal government.

The result? The man claims the nursing home administration took away his power wheelchair and has sentenced him to seven days in bed. Thus, no marijuana, given that the man was using his power chair to move out away from the facility so that he could smoke the marijuana without disturbing other inmates.

What does this have to do with being a jerk? Not much, really. The man is only demanding what is rightfully his, but when a person is dependent upon other people, that demand can sometimes be classified as jerkinesss.

Happy Suicide Prevention Week!

2009-09-11T10:10:00.001-05:00

Stephen Drake at Not Dead Yet says, "Have a happy Suicide Prevention Week - for you young, healthy, nondisabled people that seem to be its only focus right now. For the rest of us, it's just another week."

Read the complete essay here.

And for those of you in Washington, Oregon, and (perhaps soon) Montana, if you're ill or physically disabled and visit your physician, never tell your doctor that you're depressed about your condition.

The New York Times and Euthanasia

2009-09-10T10:33:00.001-05:00

The New York Times, the venue wherein Peter Singer often finds a soapbox, has sometimes countered his utilitarian approach to life with several other pieces which present a more rational point of view.

Columnist Russ Douthat recently wrote "A More Perfect Death," a piece on the effort in Montana to have that state join Oregon and Washington in implementing physician-assisted suicide. An interesting reference in the article referred to thoughts from Dr. Ezekiel Emanuel.

Consider the words of a prominent oncologist, bioethicist and health care wonk, critiquing assisted suicide in 1997, just before a Supreme Court ruling on the issue. “Once legalized,” this writer warned in the pages of The Atlantic, “euthanasia would become routine. Over time doctors would become comfortable giving injections to end life and Americans would become comfortable having euthanasia as an option.” From there, it would be an easy slide to euthanizing the incompetent: “Comfort would make us want to extend the option to others who, in society’s view, are suffering and leading purposeless lives.”

The piece is especially interesting when read in conjunction with a longer piece in the New York Times Magazine about what may or may not have happened in a besieged New Orleans hospital during Hurricane Katrina.

That piece is relevant, I think, because once "physician-assisted suicide" becomes part of a doctor's toolkit, his responsibility as written down in the book of healing arts, the doctor might find himself in circumstances wherein he might rationalize that the "assisted" is assumed.

I think that happened in New Orleans. And I think it happened because the doctors were weak and fatigued, and gave in to an act they instinctively knew was improper.

And I believe the writer of the Katrina piece wanted readers to understand that the hospital's doctors were wrong. Criminal? Apparently not, at least so far as discovered by proceedings so far. But surely a moral and professional failure, which can be accepted with or without rancor.

People fail. Doctors are people.

Central to my reading was the discussion of triage in the Fink article. The doctors at the hospital corrupted that rational and ultimately empathetic practice.

Triage, as a moral choice, would have meant to sedate the "not expected to survive" group and then leave them behind for possible rescue later. That would be triage. What happened was homicide.

What I most regret is not that the central actor in this drama escaped criminal indictment. Instead I despair that her action has apparently has projected upon her some sort of expertise that allows her ideas to be taken seriously.

Plot Summary: "You Don't Know Jack"

2009-09-09T13:32:00.000-05:00

A plot summary of sorts for the Barry Levinson HBO film "You Don't Know Jack" can be found at Comingsoon.net wherein readers learn the film is ...

Loosely based on Neal Nicol and Harry Wylie's book Between the Dying and the Dead: Dr. Jack Kevorkian's Life and the Battle to Legalize Euthanasia, the HBO film follows Kevorkian's (Pacino) rise as he builds his infamous Mercy Machine and sets out to perform assisted suicides while waging an epic legal battles defending a patient's right to die.

I am always bemused with euthanasia advocates present their argument with the phrase " ... right to die ... " which seems to offer the corporeal obvious as some sort of beneficial grant from the state.

Kevorkian, I suppose, is a radical, but he has his supporters, enough so that Oregon and Washington states allow physician-assisted suicide.

Bizarro World

2009-09-08T14:50:00.003-05:00

Death as entertainment?

The filmmaker Barry Levinson has undertaken a film on Jack Kevorkian, with Al Pacino set to portray Dr. Death.

Ironically, the HBO film is titled "You Don't Know Jack."

If you'd like to get acquainted, there's no better resource than Not Dead Yet.

In some respects, Kevorkian is old news, but remember this. Kevorkian solicited people to serve as examples in his cause, he ignored the idea that many who approached him were in the midst of despair and depression and killed them. A paper written by Steven J. Taylor, Ph.D., of Center on Human Policy at Syracuse University in 2000 notes that while some of "Kevorkian's victims had chronic conditions or disabilities such as muscular dystrophy (ALS or "Lou Gehrig's disease"), multiple sclerosis, quadriplegia, emphysema, cognitive disabilities, or other long-term conditions" other "victims had histories of depression or alcohol or drug use, and, in some cases, had no discernible physical illnesses or conditions."

Like a Signed Copy of Seven Wheelchairs?

2009-09-04T14:56:00.000-05:00

Drop by Borders Bookstore in Springfield, Missouri from 1-to-3PM, and I'll sign every one you buy.

Facebook, According to Jean Dobbs in New Mobility Magazine

2009-09-03T12:34:00.003-05:00

There's a great article in the current issue of New Mobility Magazine about the place of Facebook in the lives of people with disabilities.

Jean Dobbs begins with, I remember feeling a surge of hope when I read last year that social networking sites had surpassed porn in terms of Internet traffic. Good news, I thought — maybe we aren't doomed to the hedonistic demise predicted by cultural historians. Perhaps this increasingly seductive technology could even deliver us to a finer place: a world with more genuine human connection.

If you read the entire article you'll find insights like this:

What does all this mean for people with disabilities? A lot: Every connection represents an opportunity to break stereotypes, exchange support and reduce isolation. Facebook also offers a free method of publicizing helpful disability organizations, books, products — and the people behind them. Advocates view it as a powerful tool for social change. Throw in the fact that it's just plain fun, and suddenly you have a lively, integrated community that's been hard to achieve in the physical world.

Ten Grand Is the Fee When Builders Ignore Universal Design

2009-09-02T15:26:00.000-05:00

Twenty years or so ago, my boss built a wonderfully elaborate McMansion near a small fishing pond at the edge of town where we lived then. He loved to walk out after a stressful day, toss in a line, and then toss back the little bluegills or perch that he caught.

I only visited his house once. It was built with a stepped entrance, and I didn't enjoy the hassle of carrying a ramp. The time I did visit I noticed every bathroom door was 24-inches wide. I wondered aloud, and probably not in a polite way, where he intended to shower, shave, and ... if he or his wife broke a leg or were otherwise disabled, even temporarily.

And two decades later, I now have the same problem -- and with a house built in 2006! It boggles the mind that contractors continue to build homes without at least one ground level entrance and with bathroom doors wide enough for wheelchairs. It would add no significant cost. Actually, I believe it could be done for the same investment.

Modification for wheelchair access is a different story, probably 10,000 different stories paged with dollar bills even if a person finds a sophisticated contractor. But we are underway, and the house will soon have a ramped front entrance; a patio-door-level deck and ramp-to-surface at the back; a 36-inch door in the second bathroom where a 24-inch now resides; and a true roll-in shower.

Doctors, Hurricanes, and Morphine

2009-08-30T20:24:00.001-05:00

From today's New York Times Magazine, clipped from an article about the alleged "mercy killing" of patient's under critical care at a hospital hit by Hurricane Katrina ...

Hurricane Katrina marooned Memorial Medical Center in Uptown New Orleans. The hurricane knocked out power and running water and sent the temperatures inside above 100 degrees. Still, investigators were surprised at the number of bodies in the makeshift morgue and were stunned when health care workers charged that a well-regarded doctor and two respected nurses had hastened the deaths of some patients by injecting them with lethal doses of drugs. Mortuary workers eventually carried 45 corpses from Memorial, more than from any comparable-size hospital in the drowned city.

Investigators pored over the evidence, and in July 2006, nearly a year after Katrina, Louisiana Department of Justice agents arrested the doctor and the nurses in connection with the deaths of four patients. The physician, Anna Pou, defended herself on national television, saying her role was to “help” patients “through their pain,” a position she maintains today.

It's interesting that this indictment of euthanasia comes from a publication that regularly provides a venue for Peter Singer.

Medical Professionals Interacting with People with Disabilities

2009-08-28T12:14:00.003-05:00

While disability is not illness, people with disabilities are no more exempt from dealing with medical professionals than any other person. Sometimes, though, people with disabilities become their condition. I thought it might be interesting to learn how a medical professional might approach a person with a disability in a treatment setting.

How a Radiography Technician Should Interact With Patients with Disabilities
by Adrienne Carlson

The very mention of the word therapist has people looking at you strangely – they think that if you’re seeing one, there’s something very wrong with you. But therapists help lots of people and bring about significant positive changes in their lives. An RT can make a whole lot of difference in the way people with mental and/or physical disabilities see life and live it, just by the way they interact with their patients. To provide patients with optimum benefits, an RT must:

Focus on the patient, not the disability: A good RT is not necessarily one who is naturally skilled at his job but one who can see beyond the disability at the person it has affected and is affecting on a continuous basis. He or she must be able to separate the person from the disability and focus on their needs rather than on how the disability is reflected in their life.
Be good at their job: A therapist must know his craft and be good at what he does; otherwise he is of no use to the patient. He must be skilled in providing the right kind of treatment, one that is tailored to the patient and that suits his needs, not a general or broad routine that is developed as a matter of fact for every patient, no matter how little or how much their disability is.
Have the right amount of compassion: Most people with disabilities resent pity and too much compassion. They are fiercely independent and do not take kindly to people patronizing them because of their disability. But they will accept genuine offers of help if they are given with the right amount of compassion. And that is exactly what an RT must be able to do when interacting with a patient with significant physical or mental disabilities.
Know how to deal with tantrums: An RT must be very patient, especially when dealing with patients who are mentally ill. They often have no idea that you’re trying to help them and are prone to violent behavior at times. The therapist must be ready and able to deal with abrupt changes in behavior. With someone who is only physically disabled, the RT must know how to deal with temper tantrums that come about because of the patient’s frustrations at not being able to do things like normal people. The key to all this is an infinite amount of patience, which is really no different than the attitude a RT must use in dealing with any person seeking care.
Know how to coax and push: Physical therapy is difficult and even painful at times. The therapist must know when to coax, cajole and even push the patient to go through the routines even though they are reluctant or unwilling to do so. He or she must be able to get a patient to do what they’re supposed to do, because without the therapy, there is no hope of improving the quality of their lives.

Therapy is a boon, and RTs bring a ray of hope where earlier there was none. And the way these medical personnel interact with people with disabilities can bring about significant changes in the lives of the affected.

This guest article was written by Adrienne Carlson, who regularly writes on the topic of radiography technician schools . Adrienne welcomes your comments and questions via email.

End of Life, Disability, and the Delusion of Death Panels

2009-08-26T18:34:00.000-05:00

The New York Times over the past few days has published two nuanced articles on end-of-life issues, both rebutting the panic over the idea there will be compulsory counseling suggesting voluntary rejection of coverage. They are worth reading.

Bioethicist Becomes a Lightning Rod for Criticism
By Jim Rutenberg
Published: August 24, 2009

Largely quoting his past writings out of context this summer, Betsy McCaughey, a former lieutenant governor of New York, labeled Dr. Emanuel a “deadly doctor” who believes health care should be “reserved for the nondisabled” — a false assertion that Representative Michele Bachmann, Republican of Minnesota, repeated on the House floor.

At the End, Offering Not a Cure but Comfort
By Anemona Hartocollis
Published: August 19, 2009

Palliative care has become a recognized subspecialty, with fellowships, hospital departments and medical school courses aimed at managing patients’ last months. It has also become a focus of attacks on plans to overhaul the nation’s medical system, with false but persistent rumors that the government will set up “death panels” to decide who deserves treatment. Many physicians dismiss these complaints as an absurd caricature of what palliative medicine is all about.

The problem in the current discussion about how to remodel our national health care model is that this issue is ammunition for demagogues. That in turn overshadows the legitimate concerns of people with disabilities, always the first drafted as discussion fodder in the campaign for euthanasia and assisted suicide.

No one gets out of this world alive, obviously. All people with disabilities want is an equal and fair opportunity to squeeze it dry before we go.

George Weigel, Ruth Bader Ginsburg, and the People We Have Too Many of

2009-08-22T16:54:00.000-05:00

We receive The Mirror, a publication of our Roman Catholic Diocese. In The Mirror, there is a regular columnist, one George Weigel, identified as a "Distinguished Senior Fellow of the Ethics and Public Policy Center, is a Catholic theologian and one of America's leading public intellectuals."

In this week's column (not yet available on the Center's website), Weigel writes of an interview with Supreme Court Justice Ruth Bader Ginsburg, which he noted appeared in a recent issue of The New York Times Magazine.

Weibel writes "There, in the course of relating her surprise at the court's 1980 decision upholding the Hyde Amendment (which banned federal funding for abortion), Justice Ginsburg had the following to say about legal history, social policy, and political surprises:"
"Frankly, I thought at the time Roe was decided, there was a concern about population growth and particularly growth in populations that we don't want to have too many of. So that Roe was going to be then set up for Medicaid funding of abortion."

Weibel then goes on to discuss the eugenicist mindset of Margaret Sanger, the founder of Planned Parenthood, and the ugly history of eugenics in the mid-20th century.

But what I find surprising is how little notice Ginsburg's comment attracted. In fact, the bold supposition that abortion has a social eugenicist element by Ginsburg didn't even earn a follow-up question. Imagine if it had been uttered by Scalia or Thomas.

All this is nothing new, of course. There is an element of utilitarianism in progressive and liberal social theories, even though the argument for abortion has evolved into a libertarian one -- that a woman has the inherent right to exercise control over her body.

However one approaches that ideal, and as a man I have no comprehension of the emotional and psychological issues inherent in a woman's approach to life in the womb, I know that Ginsburg utilitarian (and somewhat elitist) idea to abortion provides an insight into the issue of disability.

First, it does so in a practical sense. Children-in-womb with Down's Syndrome (something that can be determined by pre-natal testing) are being aborted ninety percent of the time. That has an enormous social impact, and one displayed in ways we cannot comprehend.

Second, Ginsburg has a vote in any issue regarding disability rights that comes before the US Supreme Court. It is difficult for me to understand how a person can compartmentalize utilitarian values. However liberal Ginsburg might be regarding, for example, the scope of The Americans with Disabilities Act in employment or access issues, I see no reason to suppose that she would not support a Singer-inspired movement to apply utilitarian quality of life assessments to life issues relating to permanent disability.

Vulnerability as a Person with a Disability

2009-08-19T17:44:00.002-05:00

A writer friend who has a chronic condition requiring the use of steroids wrote to me about how people with her particular disability -- Rheumatoid Arthritis -- are in a sense diminished in news reports relating to the expected H1-N1 virus invasion of the US.

Noting that the first person who died from the virus "had both of these conditions," my friend wrote ...

Since then anytime a death is reported in America the reporters add the caveat, "but the person had pre-existing illnesses."

It is amazing the power that these words have on me. Yes, because I take immuno-suppressant drugs I am at much higher risk of contracting H1-N1, and even dying from it.

So while I understand these words are intended to comfort the 80 percent perfectly healthy majority, I certainly feel that it also devalues the life of people with illnesses who are in danger as this virus spreads.

While I understand a person is not necessarily ill because the person has a disability, I've thought about how illness relates to my life as a disabled person for decades.

I am the poster boy for "pre-existing conditions." In fact, it takes a conscious effort for me to close my ears to the idea that someone with restricted vital capacity is in greater danger during flu season.

I'm so paranoid about it that I ask (demand) my MD allow me to keep a prescription of routine antibiotics on hand, and at the first sign of a stopped-up head or a prickly chest, I swallow a little penicillin derivative.

But I don't take -- in fact, I've never taken -- steroids, and I don't really know how they "feel," so to speak. I do know enough to understand steroids can compromise the immune system, and that's a danger.

I explored the issue a bit in my memoir, noting that many physicians can sometimes view any person's rational concern over how treatment or medications influence overall health. If a person asks too many questions or makes too many suggestions, the person is often labeled as a hypochondriac.

About all we can do as people with disabilities, I suppose, is appreciate that physicians generally are "mechanics" in that most all of their interactions are with people who need "repair." With that in mind, many of them might assume any questioning comes from people who tend to borrow trouble.

Of course, in the instance of H1-N1, we're all at risk, but to varying degrees. I look at it this way: I am at no more risk than a person with emphysema, for example, or even perhaps a heavy smoker. With that, the news story "pre-existing conditions" notice becomes both a warning and a caveat to prevent general hysteria.

In that regard, it becomes a glass-half-full perspective for me rather than another reminder of my vulnerability.

But that wasn't a very good answer to your question to my friend's question, was it?

The Appeal of Creative Nonfiction

2009-08-17T11:39:00.001-05:00

Click on image for Joylene's blog

A short piece about "The Appeal of Creative Nonfiction" appears today on writer Joylene Nowell Butler's blog ...

It's an exciting and stimulating genre, both for reading and writing. Don't be fooled, though. It is not an unwelcome blend of fiction and nonfiction. Creative nonfiction pieces, essays or book-length works, are factually accurate narratives told using the tools of fiction to better reveal truth. And Story.

Read the complete essay here.

Author Interview: BookPleasures.com

2009-08-13T14:43:00.003-05:00

The book is a memoir, one I began when a few writing friends convinced me that using a wheelchair for a half-century gave my writing an interesting perspective on life. When you think about it, I have rolled through the time when people with disabilities were considered "invalids" and "shut-ins" up to the current atmosphere, a time when the Americans with Disabilities Act has opened doors in education, employment, and social settings ...

... read the complete interview here.

Disability Advocate in the US News and World Report

2009-08-12T13:53:00.001-05:00

Laura Hershey speaks out in The US News and World Report against rationing health care on the basis of ephemeral quality of life values.

What I've never been able to understand in this debate is why the federal government does not use the system in place -- Medicare -- to provide coverage for those presently without insurance. It appears we are reinventing the proverbial wheel.

That would solve one element of the problem: coverage.

The second aspect of the problem -- ever-increasing costs -- could be tackled separately. No one denies that insurance companies, hospitals, pharmaceutical companies, and adjunct industries need to be regulated, but that is an issue distinct from providing coverage to everyone that wants it.

Access Means Integration, Integration Means Access

2009-08-05T14:40:00.001-05:00

As a person who lived through the bad ol' pre-Americans with Disabilities Act, who saw multi-million dollar commercial properties erected that lacked access for those with mobility problems, who lived in a town with only a minimum number of curb cuts, who is presently in the process of retro-fitting a near-new house for wheelchair access, I am happy to see Terri O'Hare's article receiving national circulation.

A few years ago, a French energy company developed a TV spot that made the rounds of disabled advocates’ blogs as a quicktime movie. It shows a city scene packed with people. One man stands out: he walks slowly, carefully observing those around him. As the camera pulls back, we see he’s surrounded by pedestrians using wheelchairs, some walking with canes and guide dogs, some using sign language to converse with friends. He’s apparently the only non-disabled person in the city. The spot imaginatively conveyed the “otherness” people with disabilities experience as they negotiate most American cities, large or small.

Read Access Is Everything here.

"We Shall Overcome ... "

2009-08-01T11:18:00.005-05:00

From Diane Coleman's post about President Obama's hedging after she attended the Washington, D.C. ADAPT action for the Community Choice Act of 2009 ...

I was raised to believe that it was my responsibility to “overcome my disability,” not society’s responsibility to accommodate me. It was up to me to avoid inconveniencing others and to prove my abilities and worth “despite” my disability. President Obama praises his father-in-law for never complaining even though he had to work harder to overcome barriers. He holds up the “Overcomer” as a role model.

Ms. Coleman is correct. President Obama is a man of significant intellect, but he is responding to the the issue with emotion. That's a shame.

I wonder if Mr. Robinson expressed thoughts about how the ADA and other access efforts improved his life? That would have been a better reference.

What we hear, I think, is our own earlier "make do, soldier on" attitudes being expressed by Mr Robinson through President Obama. Perhaps Mr Robinson didn't live long enough to join the cause.

"I'm Going to Kill Myself, but I'm Going to Be Dignified about It"

2009-07-30T18:38:00.001-05:00

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.

Creative Nonfiction

2009-07-27T19:35:00.003-05:00

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

Happy Birthday to the ADA!

2009-07-25T10:46:00.000-05:00

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.

ADAPT Press Release

2009-07-23T15:47:00.004-05:00

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.

Miles to Go before Promises Are Kept

2009-07-22T13:02:00.001-05:00

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.

Commenting on Peter Singer

2009-07-20T13:57:00.003-05:00

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

2009-07-19T14:23:00.005-05:00

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.

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?
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?
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

2009-07-17T11:13:00.000-05:00

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

2009-07-15T11:42:00.007-05:00

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 People

2009-07-14T13:17:00.003-05:00

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.

Review Reprinted

2009-07-13T14:12:00.000-05:00

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.

Fishbowl Greeting Cards

2009-07-10T13:27:00.001-05:00

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 thought to send me one.

Assisted Suicide in Great Britain

2009-07-09T15:32:00.000-05:00

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

2009-07-07T14:43:00.000-05:00

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.

The Last Vestige of Pain, and Comfort

2009-07-04T14:17:00.002-05:00

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.

"No, I Just Like Paying $25k for a Place to Sit"

2009-07-01T19:46:00.001-05:00

My favorite cartoon.

"Yesterday we had a garden party," Maria wrote, "and I invited one of my clients, John, who is also becoming my friend as well. He sits in a $25,000 wheelchair, one he has used for 10 years."

Maria went on to tell me that another guest, a woman, approached John and asked, "How long have you been in the chair?"

"Oh, about a decade," John replied.

"Can you walk?"

"No," John said. "But I don't think about it. This is my life."

Maria wrote me, "I was so embarrassed by her question. This might be one to add to your dumb-ass disability stories."

Those of us who cruise around boob-high in the world have this sort of thing happen regularly. I hear it most often when, for example, I go to a doctor or dentist, or perhaps to a theater where I'm asked if I'd like to transfer to house seating.

Like John, I try brush it off, but my distorted view of the world demands that I use humor "I brought my own chair, Do I get a discount?"

Irony -- gentle sarcasm? -- can teach better than anger.

Then, of course, there is The Big One: the question of "Why?"

Ride around long enough and complete strangers will approach you with, "Why are you in that wheelchair?"

I suppose it is a query brought on by the perception of "otherness," only slightly different in degrees of boorishness than, for example, asking "How much did you pay for that dress?" or noting out loud "You need to lose some weight."

Depending on my mood -- and my sense of the motive of the questioner-- I ignore the question or engage in a bit of straight-faced surrealism. "It is a condition of my parole for my fifth jaywalking conviction."

I told my friend Maria the only dumb-ass comment that seems unanswerable is "I'd rather be dead than have to use a wheelchair."

I've never been able to understand whether that's meant as a positive comment on my endurance or a negative comment on my psychological stability.

Air-Boats and Wheelchairs

2009-06-29T19:15:00.002-05:00

There are apparently limitless ways to entertain oneself in New Orleans, one of which was to sign up for an air-boat tour of the swamps surrounding the city. Alas, air-boats are not wheelchair friendly, but my wife and son were ready and willing.

The pilot of their air-boat was a certified merchant marine captain whose family owns the 4,000 acres of swamp available for the tour. He was a native Louisianian, a man whose great-great-etc. grandfather was a French fur trapper and explorer who married into a local Native American tribe.

Funnily enough, when discussing his ancestry, he noted that the description Creole had come into disrepute in some quarters as a racist term. I had always thought that Creoles are a mixture of European, Native American, and African heritage, but apparently that's not so. In any event, Cajun is still acceptable. Language, it seems, is ever-evolving. I have no regrets about losing "cripple" or "invalid" or "confined to a wheelchair," but there is some melancholy when a word like Creole is no longer appropriate. Creole, unlike the ugly disability terminology noted, generates a positive image in my mind.

The pilot noted that his fleet of air-boats -- and almost every other available air-boat -- had been put to use scouring the swamps for debris in the aftermath of Hurricane Katrina. The clean-up took months, and thousands upon thousands of man hours labor.

The alligators living on the family's swampland lived as alligators are meant to live -- that is, they are not "farmed" for meat and hides. The one exception to their wild life is being trained to approach the air-boats to be fed ... marshmallows. The training begins when their but hatchlings, mere inches long. The largest to approach the boat was about ten feet from nose tip to tail end. What a measly marshmallow might mean to a beast that size, the pilot didn't say.

Alligators, though, are the most primitive of creatures. The pilot said they live only to eat and lack any sort of maternal or parental instinct. If the female loses too much body fat in brooding her egg clutch, she is likely to eat the hatchlings.

Writing is the hardest way of earning a living, with the possible exception of wrestling alligators. -Olin Miller

Accommodation by Any Other Name?

2009-06-27T13:44:00.002-05:00

I have used a wheelchair for nearly fifty years now, rolling out of the dark ages before the Rehabilitation Act, the ADA, and the Olmstead decision. In that time, I have come to believe that three primary factors confront those of us with disabilities.

Money. Few with disabilities have the resources to afford the appliances and assistance that would make for a more sophisticated life.
Class. Since most people with disabilities are relatively poor, we face class discrimination as well.
Fear. The fear of the other, exemplified more than once to me personally when I have heard "God, I'd kill myself rather than spend my life using a wheelchair."

For years, I have written about "accommodation" -- the use of government authority to force changes that will allow people with disabilities to integrate more completely, more fully into society.

Today, however, an acquaintance and fellow disability rights activist may have changed my mind about what I want for me, and for every other person facing discrimination.

Here are the words of Lawrence Carter-Long.

"Not to get too Luntz and Lakoff here, but people think of issues in frames. The words we use to describe access can either rein force negative frames or facilitate more positive meanings.

An accommodation, given the nature of how the word is both used and understood, implies extra work; a hardship. No matter how we attempt to spin it, pressing for an accommodation reinforces two negative frames 1.) a good deed is being done which reinforces the charity model and 2.) some degree of hardship to those given the task of accommodating inherently burdensome disabled people given the context.

Using the very word implies non-disabled people have to modify or adapt to satisfy us and is, I suspect, resisted because of the conflict it creates.

If we take the same concept and begin to frame it as an expansion however, we open up the space in which we all think about what it is we're actually trying to do ... a benefit rather than a burden."

A Major Milestone, with Work Left to be Done

2009-06-25T11:51:00.000-05:00

10th anniversary of freedom for people with disabilities
By Mike Ervin, June 21, 2009

June 22 marks the 10th anniversary of a landmark ruling for people with disabilities.

Doin' Things Big in Texas!

2009-06-25T09:26:00.002-05:00

ADAPT has arranged for a billboard display in support of The Community Choice Act of 2009. Read the story here.

One Post is Better than Two

2009-06-16T14:24:00.004-05:00

I'm writing book reviews, selling properties, buying properties, moving furniture, storing furniture, hiring a contractor to make a house wheelchair accessible -- all in anticipation (October 2009, if you'd like to buy a condo so that I don't own one place more than I can use) of moving from here to there. Thus, I'm posting only to one personal blog, which you can find by clicking here or on the image. Or you could buy the book.

Rage Against the Machine

2009-06-15T14:28:00.002-05:00

A fellow blogger, Wheelie Catholic, wrote an interesting piece about a "wrongful birth" lawsuit filed in Oregon. Her thoughts are linked to Beth Haller's blog, Media dis&dat

The short piece asks several intelligent questions, but they are related to the practical influence of disability on individuals and families, and the responses a humane society should make.

However, to when we speak out on issues like this, we are "raging against the machine." The "wrongful birth" mindset implies that disability is not a condition to be compensated for, but rather the declaration that a particular human life was an error.

And we "rage against the machine because, unless people have experienced disability in their lives, whether personally or through a friend or relative, they see disability as totally negative.

There is an additional factor: the disability experience must be a positive one (i.e., the person with a disability must be happy, and preferably accomplished and productive).

Otherwise, disability is a negative, one to be prevented by abortion, infanticide (thank you, Professor Singer), or euthanasia (over to you, Dr. Kervorkian).

To declare otherwise may be choosing to speak against the tide of history, against the utilitarian concept of 9-out-of-10 Down Syndrome children being aborted, against unacknowledged sex selection by abortion, and against the dark promises of genetic manipulation.

But we speak for all that makes us human.

A Chance to Fight ALS

2009-06-05T19:07:00.004-05:00

Another writer, a friend by the name of Dawn Goldsmith, is involved in The ALS Association Florida Chapter's quilt raffle. Tickets available online or by calling 888.257.1717.

The issue is especially important to Dawn's husband's family.

If you would like to read aa review of an interesting memoir about ALS read Karna Converse's review of ...

WHEREVER I AM, I’M FINE:
Letters About Living While Dying
By Catherine Royce
273 pp. Xlibris $19.99

... at this link.

And read Carter Jefferson's short memoir piece about the author at the Camroc Press Review.

Susan Boyle and Appearances, in the World of Disability

2009-06-03T17:49:00.003-05:00

Two comments about yesterday's post discussing the New York Times's essay, Desperately Seeking Susan, by Ricky Jay suggested that I hadn't revealed the "profound truth" missed by Jay.

I had written about that truth in an earlier post, which mulled over the general surprise when a frumpy woman -- and here I reveal my own prejudices -- arrived on stage only to be greeted by laughter and doubt. Once her angelic voice was heard there came calls for her to have a a make-over. Obviously her choice would be made based on how she has internalized reactions to her appearance over her lifetime.

At bottom, though, a "make-over" in this context means to re-style one's appearance in order to conform to society's idea of comeliness, or normalcy. In the context of disability, that's something that people with visibilities disabilities cannot do.

Two of Jay's other references -- Mathew Buchinger and Thomas Quasthoff -- were also people with visible disabilities, which meant the evolution of his argument into a rumination on "15 minutes of fame" left most readers with the idea that Boyle, Buchinger, and Quasthoff relevant only in the sense that their talents gained them notoriety.

I say instead that their notoriety is enhanced, their talents celebrated more elaborately, at least initially, because their appearances lowered expectations. Each was prejudged as less than.

Boyle, who reportedly has a learning disability because of a problem during birth, is closest to the norm, closest to being able to disappear in a crowd, but that she was greeted with snickers illustrates also that prejudice because of appearance doesn't always relate to disability.

Ask any significantly overweight person.

The profound truth Jay missed, to me, is that the wisest among us should sit quietly and wait for character, intelligence, and gifts to be revealed without prejudgment, without undue expectation, with understanding that we are all flawed creatures who might best serve one another with kindness, compassion, and empathy.

A Truth in "Otherness"

2009-06-02T11:41:00.000-05:00

There's an interesting piece in today's New York Times -- Desperately Seeking Susan, by Ricky Jay -- discussing the Susan Boyle saga.

What is interesting is that Jay writes, "Because of their appearance, both Buchinger and Ms. Boyle were saddled with low expectations. This can work to the performer’s advantage: lessened anticipation coupled with high ability can bring on an exponential acceptance."

The Buchinger he refers to was Mathew Buchinger, who in 1726 performed in Scotland. He played musical instruments, danced, "and performed conjuring tricks ... "
"Buchinger was 52 years old, 29 inches tall — and, he had neither legs nor arms."

Jay then goes on to note "Thomas Quasthoff, the magnificent contemporary German singer whose physical appearance somewhat resembles Buchinger’s (he is a phocomelic thalidomide baby), also provoked low expectations."

But even though he goes on to note that, "It is not only physical appearance that colors our expectations, but also class, education and location ... " Jay weakens his observation by refusing to see the power of the lesson to be found in the issue of "otherness" -- that is, discrimination -- and instead limps to a conclusion built around the cliché of fifteen minutes of fame.

A performing cycle that once could have taken years is herein reduced to days. She’s unknown, we’re surprised. She’s embraced, we’re disenchanted. She’s the runner-up ... next?

Too bad Jay does not recognize that he wrote past, and thus buried, the profound truth to be found in the Boyle saga.

Read the essay in the Times here.

Reason, Faith, and Revolution

2009-06-01T16:05:00.001-05:00

I've been reading, and writing a review, of ...

REASON, FAITH, AND REVOLUTION: Reflections on the God Debate
By Terry Eagleton
185 pp., Yale University Press, $25.00

... for the June issue of The Internet Review of Books. Eagleton writes plainly, but his arguments are complex, a tightly knitted garment woven from threads of mysticism and strands of liberation theology. What's most intriguing to me as I am finishing the book is his argument that atheists and agnostics have too much faith in reason.

Watch for the review on June 15th.

Armbands and Parking Spaces

2009-05-28T18:03:00.004-05:00

A friend noted that the identifier mentioned in yesterday's post might be considered as something similar to the license plate or sticker that allows a person with a disability to use an accessible parking space, which she felt was a consideration offered by the state to a person with a disability.

I think the license plate or the sticker signifies only a right to a privilege. And it is entirely voluntary. No one is forced to use an accessible parking spot simply because he or she happens to be a person with a disability.

Of course, I do wear a badge -- in the form of a large red and black power wheelchair. And that experience has taught me that my badge changes the way I am treated in every new situation.

As to considerations, I offer that we (meaning people with disabilities) deserve no more consideration than any other "set" of citizens who happen to reside at a different place on the scale of normalcy.

Our only right is to equal access and accommodation.

Where's My Armband?

2009-05-27T15:42:00.001-05:00

Two pieces circulating among disability activists remind me of a truth my wife often uses when she sees bullying or discrimination. "People are like chickens. They will peck the different one to death."

It's a farm girl's observation. Chickens tend to kill the sick or injured among them.

That bit of folk wisdom came to mind when a report began to circulate noting

"JAKARTA, May 26, 2009 (AFP) - Disabled pedestrians in Indonesia are required to wear signs identifying them as handicapped under new traffic regulations passed unanimously by parliament on Tuesday."

Perhaps an armband? Nothing new in that, as every sophisticated person knows, with medieval marking carried forward to modern times and spread from Jews to other concentration camp prisoners and then into places like Cuba.

To point to that is not to suggest fascist motives to members of Indonesia's parliament but rather to point out the danger of "otherness."

Spanish disability rights activist Javier Romañach speaks to that issue when he identifies "The Three Phases of Bioethical Immaturity."

As Romañach offers, "We" (meaning every human being) "are all unnecessaries."

The first phase begins with "cutting out" humans regarded as "others", e.g. by labeling them pejoratively as "retards", "cripples", etc. and ends with institutionalization, sterilization, or even euthanasia, including "mercy killings"

Is Overstocked.com the Big Time?

2009-05-26T17:28:00.003-05:00

My memoir, released October 2008 by The University of Iowa Press, has appeared on Overstocked.com.

The author escapes stereotypes about people with disabilities by giving readers the unromantic truth about life in a wheelchair, in a powerful memoir that elicits sympathy, understanding, and laughter.

I don't know what to make of this.

Is it a sign the publisher thought more highly of the memoir than the public?
Or is it a sign that the book is popular enough that it has pervaded even the outer reaches of marketing?
And most of all, are the books sold going to add to my total sales or have they already been counted?

Of course, I am bemused that another memoir is being advertised on the same page: My Horizontal Life: A Collection of One-Night Stands.

Killing Me Quietly with Legal Drugs

2009-05-25T15:49:00.000-05:00

A story about the state of Washington's first legal "assisted suicide" circulated last week on the news wires. Here it is as reported in The New York Times. What surprises me is there has been relatively little discussion among disability activist networks that I monitor.

In the Times story, there were notes relevant to those working on disability issues.

Some critics fear that physician-assisted suicide will pressure people with terminal illnesses who have low incomes or are disabled to end their lives to avoid becoming a financial burden to loved ones. Supporters cite studies that they say have refuted that idea.

Ms. Fleming, who was divorced, filed for bankruptcy in 2007 with $5,800 in credit card debt, according to court records and a lawyer who had represented her, Hugh Haffner.

Of course, I'm not so hard-bitten that I can envision a circumstance where someone with terminal cancer might want to take an lethal dose of narcotics. On the other hand, the so-called "health care crisis" has many progressives touting the benefits of managed care -- which can be an euphemism for rationed care, which in turn means the so-called right-to-die becomes the duty-to-die.

People with disabilities were long shunted aside -- shut-in, made invalid -- and we have only stepped out into society as a group after people like Ed Roberts opened the door.

Now that we are here, we should not be the first asked to leave.

Beyond Frustration, Part III

2009-05-21T19:00:00.001-05:00

One anecdote that was removed from Seven Wheelchairs by the editors at The University of Iowa Press involved my interaction with an office supply salesman forty years or so ago.

I don't remember the name of the man I knew that long ago, but I do remember him -- a cheerful guy, optimistic, always presenting himself in a business suit and dark-framed serious glasses. What made him stand out was that he moved about with the quixotic gait of someone with cerebral palsy.

When he stopped by our office, we sometimes discussed disability, or rather living with a disability in a society before the Rehabilitation Act of 1973 or the Americans with Disabilities Act of 1991 or the US Supreme Court's Olmstead decision.

When it came down to the person we were when framed by disability, he would tell me "I think you may have it worse than me." And he said that not because I used a wheelchair while he could walk, but rather because he had been born with CP, and I had been paralyzed at seventeen.

"It's gotta be much harder to have walked and run and played sports and then had it all taken away from you."

Shamefully enough, I agreed. I think the foundation for those feelings were a sense of loss -- a loss of hopes, of dreams, of the person I had been and had expected to be.

I wasn't wise enough then to grasp the hard, cold truth of "break an egg, make an omelet."

And I wasn't wise enough to comprehend that every soul on this earth operates within the confines of their abilities and ambition, and to some extent circumstance.

Is that amorphous entity of luck involved? Of course -- and at each point in our lives when abilities, ambition, and circumstance comes into play. And that then cooks up a great chaotic, quarkian stew which we call life.

To talk about the issue in relation to disability in society, in relation to rights and to integration of people with disabilities into the mainstream, is useless.

Whether I am frustrated (read this as angry or bitter also) because I live with a measure of dependency upon others, or whether my long-ago acquaintance moved merrily through life without frustration (read this as jealousy or angst over what was not) is irrelevant.

The concept of anger and frustration in relation to disability -- as an outside subjective opinion or as an internal condition -- reminds me very much of the apparent color prejudice among African-Americans. And no doubt it is as irrelevant as my capacity to make a comparison.

People -- with or without disabilities, and of whatever ethnicity, gender, or other differentiating factor -- have but one truth to live, to cope with, to share.

That some of us are angry or frustrated or even bitter is inevitable.

That a few of us are trapped by these negative emotions is regretable.

That any of us would inflict them on people around us is contemptible.

Beyond Frustration: Thoughts from Writer Rebecca Coleman

2009-05-20T13:18:00.004-05:00

I've been internet-acquainted with novelist Rebecca Coleman through the Internet Writing Workshop and other venues for several years. She sent a long comment about yesterday's post, and I asked for her permission to publish it as a guest post here.

What I think is valuable about your memoir (which I am 2/3 through) is the way it doesn't couch the actual emotional experience of living with disability. How the typical person wants to view those with disabilities is not what you offer in your book. And so people are probably unnerved reading about frustration and anger and feelings of loss that don't get wrapped up in a bow at the end and have an epilogue in which you run a 5K race.

That's their problem, in my opinion.

A significant problem in any marginalized community is the struggle not to let the dominant group define them, and that includes the definitions of how they should feel about their experience in the world.

I'm biased by knowing you, but with that in mind, I think it's not helpful for able-bodied reviewers to project onto your book what they had hoped you would say. If the reviewer is living with a disability, then there is more value in it because it shows a diversity of opinion within that community.

But in this case I can't tell which it is, and of course there's a school of thought that says it shouldn't matter. I just don't subscribe to that school.

When s/he talks about "harsh language," is the reference to the word "crip"? I think it's a debatable point. Having been the president of the campus gay/lesbian/bi organization in college, I'm very familiar with the idea of reclaiming a word for the sake of identity-- I was perfectly comfortable using the word "queer," for example.

But it can be troubling because if you yourself use a word in reference to yourself, you can't very well complain if others use it toward you, whether or not they are members of your community. To use a word in a joking way in a private setting between members of the same community is one thing, but once people start using it in front of a general audience, I think you get into some murky waters.

The word can lose its sting and shame, but it doesn't change the intent of an angry or bigoted person saying it ... it just costs you the right to be righteously indignant about it. And that's a general "you," not a "Gary you."

Rebecca Coleman's novel Desperado City will be published August 2009 by Medallion Press.

To Be, or Not to Be Frustrated

2009-05-19T16:10:00.002-05:00

One of the reviewers of my memoir, Seven Wheelchairs, offered the opinion that my "personal drama seems filled with more than the usual testiness ... " and some of my terminology "unduly harsh." Perhaps it is. I think not. I tend to think it reflects my healthy respect for human weakness and frailty, and I don't mean "disabilities" in that sense.

This came to mind following a discussion among a disability rights advocates after a AP news story began to circulate this past weekend.

Unique Dance Troup Triumphs
Springfield News-Leader

In the story, there is a reference to the " ... frustrating distraction ... " of a disability, and the description resonated differently within the group.

Frankly, I passed over it without a second glance. It takes me five minutes to put on a down jacket during winter so that I can walk my dogs. That's frustrating. And if the wrong thing catches in the right place, and thus the procedure must begin again, it is infuriating enough that I curse. And there are things other than down jackets I find frustrating about being a wheelchair user. I will not bother to list them.

But that frustration is my weakness; it is my lack of self-control; it is a failure of my attitude. I was disabled at age seventeen, and there are still little rivlets of frustration and anger feeding the Muddy Waters that are my psyche.

If someone said my disability can be a "frustrating distraction, I would reply, "Yes, and sometimes I curse it. But so what? I hurt no one with my anger. I keep it locked away and pull it out occasionally to learn how I can use it to make myself a better person. Everyone has demons. These happen to be mine."

Which is an entirely different mindset that might be held by someone who has never had a doppelganger ... a persona different from what is.

And I understand that point of view. "Pity be damned." And certainly to have one's physical self labeled a "frustrating distraction" paints a picture that can be perceived as pity-worthy.

Whether we are who we are from birth, or whether we become this new person who we are, the sanest, the happiest of us learn to to "Be" fully in life, in the present, in the circumstance of What Is.

That we do not think alike, that we do not approach the world with identical mindsets that then can be labeled with patronizing or dismissive words and phrases establishes the uncommon humanities of those of us who happen to be people with disabilities.

Strange Telescopes: A Book about the Edge of Russia

2009-05-18T14:47:00.001-05:00

Truth be told, when this book popped up on a list of availabilities for prospective reviewers and I read the synopsis, I began thinking William Least Heat Moon or John Steinbeck and Travels with Charley.

A literary travelogue, Strange Telescopes is not. In fact, while it is no doubt creative nonfiction, the author seems less than fully present in the story. He is an observer, true, but he isn't a catalyst, a characterization that might fit Least Heat Moon or Steinbeck and a state that arises in many power creative nonfiction works. Kalder comes across as a reporter, although the book jacket classifies him as an "anti-tourist."

Read the review here.

STRANGE TELESCOPES:
Following the Apocalypse from Moscow to Siberia
By Daniel Kalder
401 pp. Overlook Press $26.95

Strange Telescopes actually began with the idea for a magazine article, according to its author, but then serendipitously he began to stumble across off-beat icons illustrating aspects of his beloved Russia and learned enough to fill a book. The book, in the hands of someone who knows only a little about the land, reads as a social study in the form of four odd characters, an examination of a society fractured and repaired by the incoherent teamwork of democrats, demagogues, and the decadently rich.

Find other great reviews from The Internet Review of Books here.

WHEN PIGS FLY: An Appreciation

2009-05-16T11:59:00.001-05:00

It seems I live my life in search of a "roundtuit," a condition exacerbated by my habit of brewing up a foul mixture of laziness, deliberation, and being easily distracted.

I'm only sorry it took me far too long to get 'round to reading my friend Bob Sanchez's novel When Pigs Fly.

The book is a a delight. Bob pops his readers into a Corvette of a comic novel and takes them through the twists and turns of a plot that traces between Massachusetts and Arizona.

Think Carl Hiaasen crossed with Donald Westlake, and you have the plot, character, and narrative conjured up by Sanchez in When Pigs Fly.

My favorite characters were the two stooges tripping through the novel as Ace and Frosty.

"Olé," Frosty said. "This is no time to talk about potato chips," Ace said, even though Lay's was his favorite brand. "We'll have supper later."

This bit of dialog occurs as a former-pet javelina makes a charge from a motel bathroom, the proprietor of which believes Frosty is deaf because Ace told him that Frosty can "lip-synch."

Guffaw-inspiring dialog and scenes are scattered throughout When Pigs Fly.

Buy it.
Read it.
Laugh out loud.
Then look for Bob's next effort Getting Lucky.

ADAPT, Obama, Martina Robinson, and the Demonstration for CCA

2009-05-14T10:42:00.002-05:00

A disability activist I met on Facebook responded to one of my blog posts about the Community Choice Act of 2009 by telling me she had participated in the ADAPT demonstrations last month in Washington, D.C. Her name is Martina Robinson, and she agreed to answer a few questions about her experience.

Why did you go?

I went because I don't think it's fair that people with disabilities who are poor and need services to help them with their daily living activities have to go into a nursing home because that's what Medicaid is required to pay for. Even if you exclude the whole freedom angle, which you shouldn't, home care is cheaper and people are better off.

Do you know anyone who needs to be freed by the CCA?

My friend, Margarita, would be able to live at home with her husband if the CCA passed. She can currently get some home support in Massachusetts but it's not enough for her as her disability is really severe. My new friend Bobbi from Rochester went to the demonstration with ADAPT and got arrested twice, like I did, and she had to go back to her nursing home where she still lives currently. She says she going to organize the nursing home residents to advocate for the CCA so they can all go home. I say, "You go girl!" but I wish she didn't have to go back there for even one more hour.

How did you participate in Washington?

I participated in all three days of this Action but throughout my life I have been to at least 100 demonstrations for a variety of issues.

What was the reaction from crowds and passers-by?

Mostly it was positive but some people, like always, were annoyed because they couldn't get where they wanted to go. Of course, there are also always the tourists who take pictures of us like we're some attraction. This is especially true with people who are not from the U.S. and aren't used to seeing disabled people out on the street.

What was the reaction from police and other security?

This time, I think they handled themselves very well. There was no brutality, such as throwing people out of their chairs as there sometimes has been. Once they arrested us, however, they were concerned about our medical status and needs. The first time we got arrested this Action it took about an hour to get everyone processed. The second time, for my group at least, it took eleven hours. I think because they were afraid if they let us out we would just get up to trouble again. Which was very smart on their part because we would have.

Do you think Obama himself has failed on his promise to support the CCA into law?

Yes, I think he has and I want, although I know it's impossible, my money and my time that I donated to his campaign back. I was so happy in November that there was going to be a community organizer in the White House but all we got is a liar instead. This kind of behavior is likely to turn me into a bitter person.

Or do you think it is simply far down the list of priorities (after the economy, Iraq, Afghanistan, etc.)

I think it may be far down on the list of priorities for America as a whole but for the people who need the services is at the forefront. You can't get a job if you live in a nursing home. If you're injured in Iraq or Afghanistan, you shouldn't have to go to a nursing home. If they want to help the economy, we're all going to need to hire people to help us. That creates jobs, so this is all related. The CCA really relates to most issues in America right now.

Is the fact that Axelrod's daughter is in a (very nice) institution work against our cause?

Before I researched this question, I didn't even know who Axelrod was. I think the fact that his daughter, or for that matter anyone else, is in an institution hurts our cause because their family members cannot see how much better off they would be in the community, which in 99% of cases, I believe they would. The fact that this person has power alarms me. He is not considering that most of us cannot afford to live in the rich, nicer institutions. Although, I don't care how nice the place is, it's not substitute for being free. Most institutions are not as nice as the one his daughter stays in and those are the ones that Medicaid will pay for.

Do you think Obama heard about the demonstration?

I think President Obama is a very smart man and that unless he was living under a rock he knew we were there. We were chained to the White House gates on one occasion. How could he avoid us and knowing what we wanted?

Do you think Obama understands how poorly his staff reacted to the demonstration?

I don't think Obama truly understands how insulting his staff people were. While he himself might be progressive I think, like everyone else, he thought he would just say no and we would go away. Unfortunately, he hasn't been in office long enough to learn that we just don't do that. Hopefully he'll get smarter over the next year. I think it is a problem with all beaurocrats and they staffers that they think disabled people are helpless, kind of like Jerry's Kids. You just say no and they leave. In ADAPT's case, we chain ourselves to your office.

Do you believe (I do, I think) that this isn't about money so much as it is a class issue? That is, the rich can afford (see Axelrod) the best care (away/at home) while the rest of us are too poor to provoke interest.

I think it is largely an issue of the have's and have not's. If you have money, as with everything, you can simply pay to get what you want or need. If you don't, you have to work for it or go on assistance to get it in some form, which is often not adequate for me.

Do you believe that integration of people with disabilities should not be tied to health reform? I do, mainly because I identify myself as "a crip" rather than a person who is ill.

Here, I am going to disagree with you. I think that integration of everyone, not just pwds, will be greatly increased if the CCA is part of healthcare reform. It doesn't say we're sick, it just says we need this and including the healthcare reform is the quickest way to get it because then it can be part of the omnibus motion that is the healthcare reform. We won't have to work as hard to get it passed as we would if it were an individual law. I don't care how we get from A, with no CCA to B, with it. I just care that we do it as fast as possible before more people end up in nursing homes due to lack of services available.

Disability Rights and Education Defense Fund and CCA 09

2009-05-12T10:02:00.005-05:00

The Disability Rights and Education Defense Fund recently made a Facebook post which said in part ...

In coming weeks, the Senate will finalize legislation to reform America’s health care system. Long-term services and supports are essential to individuals with disabilities and seniors and must be included.
·While over 48 million Americans do not have medical insurance, over 250 million Americans lack any insurance protection for the costs of long-term services.
·Nearly half of all funding for long-term services is provided through Medicaid that requires individuals to impoverish themselves to receive supports.
·There is an institutional bias within Medicaid that denies Americans with disabilities an equal choice for home and community services.
·Hundreds of thousands of individuals with disabilities

The DREDF advocates a National Call-In day tomorrow ...

When: Wednesday, May 13 (Between 8AM and 6PM EDT)
Call-In Number: 1-866-459-9232 (Toll Free)
You will be asked which state you are calling from and will be connected to your Senators’ offices.

While I believe in "free our people" is one of the most critical issues facing us -- that is, the social and economic advantages of moving people with disabilities from nursing homes and similar institutions -- I am not sure the cause is a "health issue."

I am disabled. I am not ill. That's why I believe The Community Choice Act of 2009 should take priority in the attempt to integrate people with disabilities into mainstream society.

Barack Obama, the Community Choice Act of 2009, and Promises to be Kept

2009-05-09T19:35:00.001-05:00

Illinois Pro-Institution Bias Moves to the White House
By Diane Coleman, Assistant Director of Advocacy
Center for Disability Rights, Inc.

So all I can say is “thank you” to the ninety-one people with disabilities and allies arrested at the White House on April 27, 2009. Just as the Civil Rights Movement had to continue marches and civil disobedience after Brown v. Board of Education, the struggle of people with disabilities, old and young, for freedom has been advanced but not resolved by the U.S. Supreme Court. The Court’s affirmation of our civil rights has taken us to the streets as well. My new hope is that the disability rights movement will grow as the Civil Rights Movement grew, until the inherent justice of our cause cannot be denied, not even by the White House Senior Advisor, not even by the President.

Read Coleman's complete essay here.

The Iron Lung, Martha Mason, and Me

2009-05-07T11:54:00.002-05:00

I once spent about three months in an iron lung, that fearsome device that saved so many lives. I take a perverse pride in that feat, although it really required no effort on my part. No one bolted down the hatch on a Mercury space capsule and launched me into orbit. No one captured me and starved me behind barbed wire because I was a prisoner of war. I simply ... resided in an iron lung until others said "Enough!" and acted to get me out of it.

All this comes to mind because of a woman named Martha Mason. She died a few days ago, after spending sixty years in an iron lung.

LATTIMORE - Cleveland County lost a most unusual world record setter Monday. Martha Mason had bested polio, a once-pandemic disease, over 85 percent of her lifetime after being told she wouldn't live to her teen years. One month shy of 72, Mason died early Monday at home in tiny Lattimore, where she had "lived above" her disease flat on her back for more than 61 years.

Two things interest me about this story, the first probably relates to the second. The first is that she tried other methods of ventilation, but she preferred the iron lung. The second is that Mason flourished because she was part of a community.

Mason lives on a quiet side street in Lattimore. She can't go to town so town comes to her.

Friends stop by for gossip or advice. Book clubs meet there to discuss everything from "Moby Dick" to mysteries by Patricia Cornwell, whom Mason has known since Cornwell reported for The Observer.

In a large room dominated by the iron lung, friends gather at dinner parties by candlelight and consume bottles of wine. Mason eats lying down.

Friends bring baskets of wildflowers and videos of weddings, birthday parties, funerals, outings at the mall and vacations. A visitor once brought a bottle of ants to help Mason feel close to nature.

The visitor flow is steady. Mason is an engaging conversationalist. People come, drawn not by pity but by the joy of the visit.

I too am have ridden through life on that same lucky horse. I have lived outside of an institution (euphemistically called a "long-term care facility") all my life. And that's why I understand the bitterness boiling up from the recent demonstration by ADAPT at the White House and the Capitol to move the Obama Administration and Congress toward passage of the Community Choice Act.

Obama, ADAPT, the CCA, and Disability Policy

2009-04-29T11:07:00.001-05:00

Read information here about the ADAPT protest.

Read this excellent, thoughtful column by Josie Byzek which explains why many disability activists think President Obama doesn't quite "get" the place of disability in American society.

Excerpts ...

Here's my theory: Obama has no unified disability policy. There is no team pulling together the threads of who we are, what we want, and how federal policy ought to reflect us ... Sure, two wars an economic crisis and now swine flu are keeping Obama busy. But he's a master-planner. He won the presidency in part because of how well-organized he or someone on his team handled us. Is it too much to ask that he create a unified, integrated disability policy?

Disability, Coping, and the Limit of Possibilities

2009-04-27T12:20:00.000-05:00

Seven Wheelchairs in Seventy Secondsv

2009-04-25T12:16:00.000-05:00

The Brevity Magazine Blog, a Guest Appearance

2009-04-23T12:09:00.003-05:00

Read the post here or below ...

In the midst of reviewing Where Did I Leave My Glasses? for The Internet Review of Books, I stumbled upon a neurological star chart which might be useful for writers exploring the edge of the universe between truth and reality. Here is a sample:

” … computer remembers all or nothing. No in-between. Whereas the brain is filled with in-between. Think of it this way: What you put into the computer is an abstraction of your experience. Retrieve it, and it’s unchanged. What you remember is an abstraction of that experience, then a reconstruction of the abstraction, then a reconstruction of the reconstruction of the abstraction, and so on and on and on—every time you retrieve it. And of course, the more time that passes, the truer this becomes.”

I think regularly about the muddy mixture of objective fact and subjective truth as it applies to the art of creative nonfiction, particularly memoir. While I know a writer has the obligation to quote correctly and describe accurately, I also know that when we set out to explore the swamp of self, we often get tangled up in the jungle of emotions.

Ignore the book’s light-hearted title. Lear tackled the subject of memory by consulting psychologists and neuro-scientists of every stripe. It was especially fascinating to follow her as she explored the idea that our writing comes from the place where memory lives, which in Lear’s description is “palimpsest,” a tablet of layered text, each preceding layer imperfectly erased.

I love the art of memoir, in book form and in personal essay, but even pre-Frey, I approached the such works believing that the writer was telling only a truth rather than the truth. Lear’s work reinforces both my skepticism and my faith.

As a reader, I am forgiving, although not quite so cynical as Ambrose Bierce, who said truth is “an ingenious compound of desirability and appearance.”

But after reading Where Did I Leave My Glasses? I think I have moved away from the idea of “truths” to the point where I believe that “truths” are merely opinions about truths, but that doesn’t mean I will easily forgive you if you choose to lie to me.

Susan Boyle, Physical Appearances, and Disability Prejudice

2009-04-21T14:20:00.001-05:00

The world is much agog over the success of Susan Boyle on Britain's Got Talent, the old country version of American Idol.

Much of the extended discussion has been about Boyle's appearance. Robin Givhans writes in today's Washington Post.

Should Boyle have a makeover?

The politically correct answer: Only if she wants one.

The honest answer: Yes.

Givhans goes on to say "The point of a proper makeover, however, is not to look like someone else but the best version of yourself ...Transformation is always part of a good story. Cinderella didn't go to the ball in hand-me-downs. She went looking her best in a glorious gown and won the heart of the prince. The ugly duckling becomes a swan."

I hear local commentary to the opposite effect. "She should stay as she is. It is what makes her unique."

I suppose Boyle should have a make-over if Boyle wants a make-over. I suspect that the root of the decision will be how she has internalized reactions to her appearance over her lifetime. And of course, I think she realizes a "make-over" in this context means to re-style one's appearance in order to conform to society's idea of comeliness, or normalcy.

In the context of disability, that's something that people with visibilities disabilities cannot do. I know as a wheelchair user I turn heads when I enter a room because I am different. I know too that my otherness is one reason I might be judged as lesser than, as less capable, as less competent, as less desirable.

Obviously, every human being moves through life being "judged by appearances." Boyle, no doubt, could have the experience of being passed over for employment if a more attractive woman were applying simultaneously, the unfairness being amplified if Boyle had been better qualified.

People with visible disabilities move about in the world realizing we are likely to be greeted with internalized versions of the judgmental ambivalence that arose from both audience and judges when Boyle appeared on stage.

It's best not to let it bother us, taking a page from Susan Boyle's book and simply be who we are.

Or, better, to use it as a tactical device to get what we want.

"Do I Look Funny in this Wheelchair?"

2009-04-20T17:40:00.001-05:00

There's a story and a video circulating among disability activists about a skit performed by New York governor David Paterson, who happens to be blind.

The story begins ...

Governor Paterson may not have laughed when SNL made fun of his blindness, but he apparently has no qualms skewering other people's disabilities. At the LCA dinner on Saturday, an annual event held by the Albany press corp featuring humorous appearances by politicians, Paterson portrayed an extremely whiny version of the wheelchair-bound man from those TV ads criticizing health care budget cuts a couple of months ago — while also taking shots at Malcolm Smith, Sheldon Silver, and the Post's Fred Dicker.

The question is, "Should people with disabilities laugh, or should we be offended?"

Based on the video is tough to judge. The audio is so poor as to be nearly undecipherable, and the jokes are based on information perhaps only relevant to New Yorkers.

The idea of disability can be an object of fun. John Callahan does it. There have been stand-up comedians using their own disabilities as a foil. I do it myself, making reference to my wheelchair in a surrealistic manner in order to put people at ease. It's a tool. And a weapon.

I suppose what makes me ambivalent about the Paterson romp is that what I see is so poorly presented that it is difficult to comprehend if it is funny.

I suppose what makes me queasy about the attempt is that it was focused outward. Paterson used a disability different from his own as his prop.

"Hey, Back-off! I'm Moving as Quickly as I Can!"

2009-04-18T19:16:00.003-05:00

A reporter who uses a wheelchair attends a news conference held by New York City mayor Michael Bloomberg. The reporter's coat falls, and the fall kicks the reporter's tape recording into playing, but the reporter can reach the recorder to turn it off -- and Bloomberg pitches a hissy-fit.

Some in the disability media and some in the mainstream media think Bloomberg should have been more patient. I'm not sure. Asking a politician to pause while he's busy preening is akin to asking Madonna or Paris Hilton not to notify the paparazzi when they venture into public.

What most dismays me is not the boorish behavior of Bloomberg, but rather the idea that the reporter didn't simply say, "Hey, I'm movin' as fast as I can."

The reporter asked for an apology. The mayor rationalized.

The ugly thing is that incident would have never made the news if the reporter hadn't been a wheelchair user. It's one more practical demonstration that people with disabilities still move in an environment where disability colors how we are perceived.

"I Have Decided to Eat Nothing That Had a Face"

2009-04-15T14:24:00.001-05:00

That was my admittedly sarcastic response about fifteen years ago when I was confronted by a fellow employee at a Christmas dinner when I received an appetizer because it had meat in it. Oddly, the appetizer had shrimp in it, and so as you may suspect, the discussion soon veered from my conversion to the Church of Vegetarianism to the possibility of a shrimp possessing a face.

I remembered that conversation today when I read "A Man with Opinions on Food with a Face" in today's electronic New York Times.

The article discussed the author Jeffrey Moussaieff Masson.

Wayne Pacelle, president of the Humane Society of the United States, said: “He’s had great success in breaking down this notion that animals are commodities or automatons. By showing the richness of their emotional experiences, it makes us ponder our responsibilities to them in a more serious way.”

I think the idea of "commodities" encapsulates my vegetarianism, another facet of which is the ugliness of steroid-and-antibiotic plagued animals grown as crops. The disconnect affected me deeply, and perhaps that disconnect is why I have little trouble with hunters and fishermen who kill, and eat what they kill.

I do not believe those who share in that blood covenant seeking to satisfy some hunger are violating an ethical precept that should stand between humans and other animals. I might catch a catfish, kill, gut, and eat it, but I feel

While Peter Singer, PETA, and others who advocate for recognition that animals suffer in ways that cry out for them to be regarded as creatures equal to humans, we alone seem to be able to pick up the concept of "suffering" and examine it, and form ideas about when it should and should not be tolerated.

Which I do by choosing not to eat meat, while recognizing in spite of that moral choice that I continue to move through this world at the expense of other creatures.

A Writer Enters the Light

2009-04-14T14:52:00.003-05:00

My friend Karna Converse reviewed a book written by the student of a friend, a somewhat complicated connection moved toward serendipity by a discussion carried out on Facebook yesterday about the bioethics espoused by Peter Singer. The book -- Wherever I Am, I'm Fine -- is about dying, and about choosing to die. Some might call it "assisted suicide," a subject so much in the news lately and so rife with controversy among disability rights advocates.

The writer chose to enter the light on March 30th, surrendering herself to fate. I'm not how I feel about it, but an NPR reporter covered the event with empathy and honesty, I think..

What I do know is that I am grateful that no outside agency, no government, no decider intervened in the most personal of decisions.

Read Converse's review of ...

WHEREVER I AM, I’M FINE:
Letters About Living While Dying
By Catherine Royce
273 pp. Xlibris $19.99

From NPR ...

Catherine's Choice: To Plan A Death With Dignity
by Richard Knox

On the appointed morning, her loved ones gathered. Catherine was aware and engaged during the two-hour process. Eventually she dozed off. And here let me quote again from her last essay:

What can I tell you about the bright light? It really is there. I saw it. I can in no way guarantee that you will see one, too, or that I will see one again. But I hope we are all so blessed.

Catherine Royce was 60 when she died on March 30.

Animal Rights as Compared to Human Rights

2009-04-10T15:43:00.000-05:00

The New York Times closed the comments on Nicholas Kristof's opinion piece about animal welfare and the philosopher Peter Singer's work in behalf of the cause rather suddenly yesterday, but Kristof kept them open on his blog. One of the more interesting comments came from a poster identified as Gypsy Boots.

The ultimate issue is not really animal “rights,” but power over human life. Embroiling people in debates about animal rights (no matter how they end up, knowing that most of us are unlikely to stop eating meat or fish) is good for this agenda, because it weakens the idea that human rights pre-exist social consensus or have any “sacred” character, and promotes the idea that human rights are the endowment of small groups of “expert” philosopher kings.

Read the entire response here.

For those interested in a comprehensive and intelligent discussion of how Singer's philosophy is seen by a person with a disability, the late Harriet McBryde Johnson's long essay in the New York Times from 2003 is the perfect place to begin.

Unspeakable Conversations
By Harriet McBryde Johnson
Published: Sunday, February 16, 2003

Do You Love Your Dog More than Your Baby?

2009-04-09T10:23:00.004-05:00

Nicholas Kristof writes in today's New York Times about the recently passed animal welfare law in California, giving much credit to the utilitarian ethicist Peter Singer.

Deep in the essay, Kristof quotes Singer ...

I asked Mr. Singer how he would weigh human lives against animal lives, and he said that he wouldn’t favor executing a human to save any number of animals. But he added that he would be troubled by the idea of keeping one human alive by torturing 10,000 hogs to death.

... but if you've read any of Singer's utilitarian ideas, you'll find his regard for animal welfare does not extend to all aspects of the human animal's welfare.

I posted a comment to that effect ...

April 09, 2009 9:58 am
That Singer meditates on the welfare of animals is good, but the man also has advocate the euthanization of babies born disabled " ..."killing a newborn baby is never equivalent to killing a person, that is, a being who wants to go on living." The late Harriet McBryde Johnson wrote elegantly in the New York Times about Singer's ugly anti-disability position. And yes, I am a person with a disability, and I despair of utilitarian philosophers like Singer. Can I support his animal welfare positions, see "shades of gray" as friend suggests. I am not sure, although I choose to be a vegetarian.

... but it was apparently "moderated out" of the discussion.

Differentiate and Denigrate

2009-04-07T15:13:00.000-05:00

Word is circulating among disability activists about a doughnut shop in Campbell, California. The owners chose to name it Psycho Donuts. The mayor of the city, Jane Kennedy, attended the ribbon cutting for the business.

Supposedly, "The store capitalizes on the theme of a "fun mental institution," a "lighthearted insane asylum" complete with a padded cell where kids can take photos while wearing a straightjacket, a "group therapy" area, employees dressed in medical garb, and donuts named after psychiatric disabilities, such as Massive Brain Trauma and Bipolar. Psycho Donuts' website states that it has taken the neighborhood donut and put it on medication, and given it shock treatment.

Reports are that the store owners have refused to meet with representatives from NAMI and from the Silicon Valley Independent Living Center.

Six comments on one local website reviewing the shop included only one that objected to the name.

Disability activists have organized a petition effort, and signatures may be attached online. The shop itself is also blogging, but the "comments" widget is not available, and the blogger's profile is impersonal.

Will rights advocates' efforts result in the name being changed? No doubt the investors have significant amounts of money sunk into the store motif. They may prefer to simply continue to follow the logic expressed on the blog ...

It's a shame that there are a handful of folks out there (most of whom have never stepped foot inside Psycho Donuts, no less California) who do not have a sense of humor. Follow me here - if our donuts are crazy, does that make us insensitive to the mental health community? Is El Pollo Loco insensitive to Crazy Chickens? Was Patsy Cline being hurtful when she wrote the song Crazy? Is it insensitive to call a donut bipolar?

To me, it's simply more evidence of the human tendency to differentiate and denigrate for reasons that reside in some dark corner of our psyche. We whisper ugly descriptions, and then we look in the mirror and do not see we have described ourselves.

The Power and Peril of Touch

2009-04-03T14:24:00.001-05:00

President Obama is attending the G-20 conference, but there has been a burst of talk about his wife, Michelle, meeting Elizabeth II, the Queen of England.

And it's been all about touching.

From Yahoo News ...

LONDON – Michelle Obama's meeting with Queen Elizabeth II began with a handshake and ended in a hug.

A Buckingham Palace spokesman who asked not to be identified because of palace policy said he could not remember the last time the queen had displayed such public affection with a first lady or dignitary.

Apparently when hob-nobbing with royalty such an action touches on the boundaries of de rigueur.

From the Washington Post ...

"Protocol seems to be dispensed with when the Obamas come to town," said the Times of London, which noted that the queen seemed particularly comfortable with the first lady and "put her hand on the back of Mrs. Obama, who did the same for a few moments."

Funnily enough, the no-real-tempest in a British royal teacup made me think about the tendency of people to touch or not touch people with disabilities. Living down here boob-high to the world, I often get patted gently, mostly on the shoulder or arm, and most often in church.

I suppose a person could be sensitive about it, not so much because we do not deign to be touched but rather because it can seem to be patronizing, to infantilize our presence in the world, something that could only be made worse by exploring the netherworld of superstition where it appears those of us with spinal damage are the prime targets.

Touching the hump of a hunchback brings a gambler good luck.
To dream of a hunchback means that you will face an unexpected reverses in your fortunes.

To touch, of course, crosses the last boundary between "Me" and "You," and so in that respect, it may be a good thing.

Perhaps that's why I do not mind much any longer when someone touches me, quickly, briefly.

"Devils can be driven out of the heart by the touch of a hand on a
hand or a mouth on a mouth." -Tennessee Williams.
"Love consists in this, that two solitudes protect and touch and greet each other." -Rainer Maria Rilke

About Being Disabled

2009-04-01T17:07:00.003-05:00

One of the more interesting things about living disabled for a long period -- let's simply say, until we shuffle off Shakespeare's mortal coil -- is the evolution of attitude.

In Seven Wheelchairs, I stumble toward the idea that I survive through a bastard mating of stoicism and existentialism, dressed in Lincoln's observation "Most folks are about as happy as they make up their minds to be," and reconciled with Viktor Frankl's ideal:

Everything can be taken from a man or a woman but one thing: the last of human freedoms to choose one's attitude in any given set of circumstances, to choose one's own way.

That's why I thought Simon Critchley's essay in the New York Times, Cynicism We Can Believe In, spoke to those of us who live a life disabled.

Critchley discusses Diogenes and sums up the Greek's philosophy as "Cynicism is basically a moral protest against hypocrisy and cant in politics and excess and thoughtless self-indulgence in the conduct of life."

Diogenes' cynicism -- denial and debasement of self -- invites us to pull back into the person we are, to live without external influence. In that regard, a person with a severe mobility disability, a total hearing impairment, or a blind person may find a door open to the peace to be found along "the path to individual freedom."

Or perhaps not.

All I know is there's little value in complaining about what cannot be changed. And that may be cynical in the modern sense of the word.

James Magill, Poet, on Webby Talents

2009-03-31T15:05:00.002-05:00

STANDING TALL

Not many bother anymore
Seldom hear that knocking at the door
Sure do miss a friendly "hello;"
Open friends sometimes close their minds.

But there's no bending of the knee
Even though these legs do so easily tire,
Because these arms are made of iron
And this chair has wheels of fire.~

~Jim Magill Poems (c) James Magill. All Rights Reserved.

Eliminate the R-Word

2009-03-28T15:10:00.001-05:00

"On March 31, join youth and actor John C. McGinley in a day of awareness for America to stop and think about their use of the R-word. Hold your own local event."

Spread the word to end the word.