GARY PRESLEY

The "Vegetative State" That Isn't

garypresley@gmail.com (Gary) — Thu, 04 Feb 2010 21:24:00 +0000

Image linked from The New York Times story

Perhaps the ugliest public fight over a comatose person was that surrounding Terri Schiavo. No one wanted to see politicians from Bush on down, and across the spectrum, use her, but it still surprises me that very few people comprehended that she was to be starved to death if her husband's wishes were implemented. I do not know what I would do if a person I loved, or for whom I had responsibility, were to become comatose and (apparently) unresponsive. I do know that I would not without food or water.

The Schiavo debacle is in the news again because of a recent study, Willful Modulation of Brain Activity in Disorders of Consciousness, in The New England Journal of Medicine as translated for popular consumption by The New York Times and The Washington Post, among other venues.

I've participated in a list of media activists who speak out on disability in society for perhaps a dozen years. One of the members who have, to use a phrase from the 1960s, "raised my consciousness" about disability is William Loughborough. He spoke out this morning about this study.

The claim that Terri Schiavo´s case didn´t fit in with the new information might well also be as wrong as the "diagnosis" itself has been shown to be - 40% misdiagnosis rate.

Skip the "medical model" please. We are clients, not patients and our disabilities are better "dealt with" than "cured".

From the Post article: "In some cases, the damage to the brain is so severe that it is simply inconceivable they could produce any responses," Owen said.

Of course this self'-fulfilling prophecy is what allowed them to be only slightly better than chance when they made the "diagnosis" - the science shows them how things that were "inconceivable" become routine but meanwhile they ignore the fact that Terri Schiavo was responsive as evidenced in video clips. We are people of diversity, not "patients" and our human rights are being trampled by continuation of the totally discredited "medical model".

While the NEJM has a scientific tone, there is much of "The Other" in both of the news reports, which reveals itself in quotes like this one from the Post article.

"If a patient wanted to die, if they were asked, 'Do you want to die?,' could they explain themselves adequately?" said Joseph J. Fins, chief of the division of medical ethics at Weill Cornell Medical College. "If they say yes, what does that mean? If this person said yes but meant maybe, or it was 'sort of yes,' we may not be able to understand that sort of nuance. You have to be very careful."

Such an attitude reveals projection of the doctor's attitude toward disability, which does not bode well for his interaction with the patient or with those who are making decisions.

Year of the Dog, VI: Pack Dynamics

garypresley@gmail.com (Gary) — Tue, 02 Feb 2010 22:45:00 +0000

We have two adult Boston terriers who have seniority in this house. Daisy the Boxer is the junior member of the pack. My wife is big on "pack theory," and when anything upsets the dynamics of the household -- anything, that is, involving the dogs, she says "You've got to remember they're pack animals."

This applies whether the dogs are sorting out their place on the bed, who gets a treat first, or who goes first out the door. And the leader of the pack is Kitty, the older female Boston. Daisy will not go through a door until Kitty has led. Daisy will not lay upon the worn afghan thrown on the floor in my sitting room unless Kitty allows her to do so. Daisy will, however, drive Doc from his food dish and take his meal.

Kitty has never done that. In fact, Kitty often allows Doc to finish her meal. He will not take it from her. He simply finishes first, moves to her dish, and stands close by until her apparent mother-instinct kicks in, whereupon she moves away and allows him to clean her dish.

Daisy will finish her meal -- three cups or more -- and then, if allowed, rush to where Doc is eating and simply drive him away from his dish. I can feed Doc and Kitty together, but now I must feed Daisy in a separate area, and then block her access to Doc.

But Daisy makes no attempt to drive Kitty from her dish. I know there is something other than physical force involved. There's growling and snarling, obviously. But I cannot hear nothing distinctive in Kitty's growl that might dissuade Daisy from attempting to annex Kitty's food. Both Bostons weigh around 20 pounds and stand perhaps 12 to 14 inches at the shoulder. Daisy weighs close to 30 pounds now, and she's almost twice as tall.

It's interesting to observe, this sorting out of who is the leader, who controls the food. It's interesting to see that the dynamic continues outdoors. Kitty leads. The other two follow. Oddly though, we have been able, at least so far, to keep Daisy from following Kitty's lead when strangers approach. Kitty hates intruders, friendly or otherwise. Daisy, conversely, greets everyone happily, eager to be petted and praised.

And that's easier on us human members of the pack.

Year of the Dog, V: Can Boxers Be House Trained?

garypresley@gmail.com (Gary) — Mon, 01 Feb 2010 20:45:00 +0000

We are beginning to doubt it, and we are saved from flights of cursing only by our long-term (and pre-Boxer) plans to remove carpet from the lower floors of our house. Carpet mixes poorly with wheelchairs, and so we knew it would be perhaps only a year before the carpet here began to show ugly wear.

But Daisy, the Boxer, is inordinately difficult to housebreak. We have finally arrived at the stage where she seems ashamed of her misdeeds. When the offending mark is pointed out with a "Bad Daisy, bad girl!" she attempts to hide (ostrich-like, since she's too big to crawl completely beneath it) under the bed.

Boxer afficiandos say "You cannot housebreak them until they're five or six months old." Daisy turns six months today.

Another Boxer owner said, "Put a bell on the door. Boxers are fascinated with bells." We have a bell on the door, but we still have wet spots on the carpet.

The oddity is that Daisy will whine at night, knowing that she'll be let out to do her business (and receive her treat). I've taken to letting her out each time she makes a noise during the day, and of course, praising her extensively and treating her royally post-bladder-void.

We had her spayed last week. Perhaps that will change her metabolism for the better.

An Essay on J. D. Salinger

garypresley@gmail.com (Gary) — Fri, 29 Jan 2010 19:30:00 +0000

Like so many others of my generation, I read Catcher in the Rye as a teenager. I don't remember being deeply affected by the novel, but then again I was a somewhat self-absorbed and relatively unschooled youngster. I liked Studs Lonigan better, for some reason.

However, I know now J. D. Salinger's work altered the literary scene more than I then appreciated. My Internet Review of Books compatriot, George O'Har, has written an intriguing essay discussing Salinger, which readers can find here.

image from Amazon

Boiled Eggs and Other Inconsequential Matters

garypresley@gmail.com (Gary) — Mon, 25 Jan 2010 19:40:00 +0000

I don't eat meat, even to the point of avoiding meat byproducts like broth and gelatin and, well, it pays to read labels. "The Original & Genuine Lea & Perrins Worcestershire Sauce" contains anchovies, as an example.

But I'm not a fanatic. In the words of my wife, I often eat "pre-chicken." I love "the incredible edible egg," and I especially like them boiled, halved, and sprinkled with "Tabasco" sauce (no anchovies included). And that brings me to the observation that long ago I learned a good measure of salt in the boiling water transforms the egg shells to the easily peel'able stage. There are other methods, but the salt-in-the-water method works for me, and it has the advantage of being simple. I suspect the salt causes the albumen (the egg's thin outer membrane) to bind to the shell.

But sometimes it simply doesn't work. Or better said, it works on all but one or two or three of the eggs in the pot. I suspect it has something to do with the genetic engineering so prevalent in the chicken industry. I suspect that layer chickens have been engineered to produce shells that are of a thickness that is both sturdy enough to ship and easy enough to crack.

Which is probably one more reason why the vegan lifestyle appeals.

Except that plants are being engineered too.

Amazon link for Just Food.

"Attacking the Truth"

garypresley@gmail.com (Gary) — Sat, 23 Jan 2010 19:45:00 +0000

I often think aloud ... actually, at the keyboard about the concept of "truth," which I suppose relates in a measure to the concept of reality.

Which in turn is probably both infinite and quarkian.

Like truth.

In any event, there's a short piece entitled "Attacking the Truth" on the Selling Books website which was inspired by re-reading a review of Where Did I Leave My Glasses that I did for The Internet Review of Books.

Leaving Home

garypresley@gmail.com (Gary) — Fri, 22 Jan 2010 20:46:00 +0000

Click here to donate.

"Run away from home? Who, me?"

It's a joke around our house that I would get no more than 28 miles distant -- that's not far enough to reach a land with tropical weather, a place I would seek -- which is the advertised distance available from my fully charged wheelchair batteries.

That's why I'm intrigued with an idea of the "Journey of a Million Smiles," as announced on the coincidentally named Traveling Wheelchair website.

It won't be Kenny of the Traveling Wheelchair making the million-smile journey but rather Matt Eddy.

From June 29, 2008 to October 25,2008, Matt took his wheelchair Roll’n Across America Summer 2008 to raise awareness for disability issues and represent Matt’s Place, a charity that Matt and his Respiratory Therapist Ron Steenbruggen started to build accessible houses for people with severe disabilities so they can live independently in their communities.

Matt will leave Red Rock Park at Lynn Beach in Lynn, Massachusetts on June 5, 2010 at 10am and drive his wheelchair on back roads across the USA with a final destination of The Aquarium of the Pacific in Long Beach, California. Matt’s goal is to cross the USA in the shortest time by wheelchair while collecting one dollar from one million people. The journey is estimated to take 120 days. The funds raised from the “Million Smiles Tour” will support the programs provided by Matt’s Place Inc.

Based upon my own experience, I'm guess'timating Matt will average, say, 3-miles-per-hour. If he can roll along about eight hours a day -- let's add an extra mile to make it even -- he can cover 3000 miles in the 120 days.

Seven Wheelchairs Made Accessible, Finally

garypresley@gmail.com (Gary) — Wed, 20 Jan 2010 16:20:00 +0000

I heard from a reader last week -- let's make that, a listener -- who said, "Recently, I listened to your book which I downloaded from the National Library Service for the Blind."

While I couldn't find it during a quick search of the NLSB site, I suppose those readers with visual impairments will be more familiar with the process.

I am pleased, of course. Seven Wheelchairs was published through The University of Iowa Press which did not have the resources to make it immediately available as an audio book. I do hear some word that the Press may issue a Kindle version soon.

The Opposite Field: A Review

garypresley@gmail.com (Gary) — Sat, 16 Jan 2010 20:31:00 +0000

THE OPPOSITE FIELD: A Memoir
By Jesse Katz
352 pp. Crown Publishers $25.00
Reviewed by Gary Presley

Anyone can write a memoir. No, let’s say, Anyone has the stuff of memoir in a life lived, but it takes artistry, a facility with language, introspection, a measure of courage, and intellectual integrity to write a true memoir.

Read the complete review here.

"Eat food. Not too much. Mostly plants.”

garypresley@gmail.com (Gary) — Wed, 13 Jan 2010 20:31:00 +0000

There is an excellent piece in the New York Times, Tara Parker-Pope's interview with Michael Pollan, that's worth reading.

Strangely enough, the Times almost simultaneously ran a story "The New Age Caveman and the City," about people who attempt to emulate the dietary habits of our "Paleolithic ancestors." Raw meat, gorging and fasting, anyone?

The best piece I've read recently about food and modern dietary habits is a book I reviewed for The Internet Review of Books:

JUST FOOD:
Where Locavores Get It Wrong and How We Can Truly Eat Responsibly
By James E. McWilliams

What's for dinner?

A sweet potato, garnished with pepper/onion salsa, two slices of five-whole-grain bread, a boiled egg, and two small pieces of dark chocolate.

image from Food Network

A Trip into Imagination

garypresley@gmail.com (Gary) — Sat, 02 Jan 2010 20:28:00 +0000

I find it odd that memories spark imagination, don't you? A recent story published on Camroc Press Review's site -- "What Keeps Us Together" -- is a figment of whimsy, but I still remember my boss griping about an unpleasant family business trip he made from Maryland to Missouri, stopping only for gasoline for his 1964 Pontiac Catalina.

We searched for the one thing that would hold us together that Friday night, and we burned through the early morning hours rumbling through the inventory of all the things that were wrong, were painful, were intent on pulling us apart.

Read the piece in full here.

"Shine on Me:" a Book Review

garypresley@gmail.com (Gary) — Sat, 02 Jan 2010 18:21:00 +0000

Helen Keller, an icon of American history, was a woman of intelligence, discipline, and ambition who made a significant impact on society in spite of being born blind and deaf. It is good to remember that others have faced similar circumstances and succeeded as well. Margaret Vizinau was one. An African-American born in segregated rural Arkansas, Vizinau became a celebrated singer and choir director in San Francisco. Her blindness from birth adds an extra dimension to her accomplishments.

The woman chronicled in this story accomplished much, and I wish I had been able to give the book a rave review.

Shine on Me: The Story of Margaret Vizinau, A Determined African-American Woman and Her Faith in God
by D. Dexter Vizinau

Read my review here.

Looking for a Late-Minute Christmas Gift?

garypresley@gmail.com (Gary) — Mon, 21 Dec 2009 20:27:00 +0000

Click here to buy it on Amazon.

LETTERS TO A YOUNG DOCTOR
By Richard Selzer

Despite its title, a thoughtful person shouldn’t consider this book only as a gift for someone in the medical field. No, this is a book an introspective person might offer to a kindred spirit. To read this collection of essays is to acknowledge the essence of St. Paul’s supposition that there are “angels among us.” And they need not be celebrated like Mother Teresa or the Dalai Lama.

The essay “Toenails” illustrates that, as the essay “Imelda”—” she pressed to her mouth a filthy, pink, balled-up rag as though to stanch a flow or buttress against pain”—reminds us that angels sometimes have rough edges and tattered wings.

If your “thinker”—the kindred spirit who receives the book—gives you a hug and a whispered “thank you” after reading Letters to a Young Doctor, you can turn to more of Selzer’s profound work for the next occasion. There are eleven other volumes waiting to be gift-wrapped. Nearly every word illustrates what it means for us to be spirits immersed in these strange fragile bodies.

Already have it? I'll send a signed copy of my memoir, Seven Wheelchairs: A Life beyond Polio, to those who want to purchase it directly. Contact me here on the blog with your email address.

Looking for a Christmas Gift for a Christian?

garypresley@gmail.com (Gary) — Fri, 18 Dec 2009 22:04:00 +0000

I reviewed this book for The Internet Review of Books, and I found it deeply stimulating ...

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

Terry Eagleton opens his defense of humankind’s God-search with “Religion has wrought untold misery in human affairs.”

Be you evangelical, fundamentalist, mainline Protestant, Orthodox Jew or Reformed Jew, Roman Catholic or Eastern Orthodox, or even a theo-centric Muslim, you might sigh and wonder what sort of ally has enlisted in the defense of the divine.

No need to worry. By page two, Eagleton says “ ... I may know just about enough theology to be able to spot when someone like Richard Dawkins or Christoper Hitchens, a couple I shall henceforth for convenience reduce to the single signifier ‘Ditchkins,’ is talking out of the back of his neck.”

That’s the impetus for this short book: a response to two popular tomes authored by the evangelical atheists Dawkins and Hitchens. Only a few pages in, a reader begins to see the author’s least favorite of the pair is Dawkins, a man whose opinions he apparently cannot tolerate, and finds gleefully easy to denigrate.

“ ... let me draw a contrast between the stylish, entertaining, and splendidly impassioned, and compulsively readable quality of the former’s God Is Not Great and Dawkins’s The God Delusion, which merits absolutely none of these epithets.”

In a few short pages, though, Eagleton reveals he also is willing to pillory the righteous, which he finds most prevalent in American Christianity, in most of its forms.

Jesus was a social, cultural, and political revolutionary, the author writes, and an apocalyptic one at that. Eagleton’s theology posits a true follower of the Nazarene carpenter must live out the Truth of God: love and mercy; justice and compassion. Eagleton believes understanding and accepting that the holy truth message left Jesus a flayed and bloody scapegoat of Calvary is central to living in faith.

Eagleton writes plainly, but his arguments are a tightly knit garment woven from threads of mysticism and strands of liberation theology. The book is an adaptation of lectures he gave at the invitation of Yale University as part of the Dwight Harrington Terry Foundation Lectures on Religion in the Light of Science and Philosophy. It is presented in four parts: The Scum of the Earth; The Revolution Betrayed; Faith and Reason; Culture and Barbarism. The author joined good company, for the Terry lectures have featured Paul Tillich, Erich Fromm, and Carl G. Jung among others.

Eagleton is a literary critic, but his style here incorporates the unsheathed blade that entertains us when CSPAN televises the activities of the British House of Commons. That can occasionally come across as too witty by half, as if the author might be extending a point merely to inflict one more cut. Deep into Eagleton’s argument, the appellation of “Ditchkins” even begins to wear on a reader, becoming almost a schoolyard taunt.

Despite its slim size, the book is inordinately thick with intellectual concepts. Eagleton sees Jesus as the divine presence of God on earth, and he preaches Christ’s message in a tightly reasoned liberation theology-cum-socialism. Much of the author’s argument requires the reader to stop, re-read, and even close the book in contemplation. The power, complexity, and originality of Eagleton’s apologia will find an eager audience only among the intelligent, the open-minded, and the curious.

This is especially so when a reader is confronted with matters such as Eagleton’s view of the truth of the Christ’s life and message.

The New Testament is a brutal destroyer of human illusions. If you follow Jesus and don’t end up dead, it appears you have some explaining to do. The stark signifier of the human condition is one who spoke up for love and justice and was done to death for his pains.

With that, the reader finds the heart of Eagleton’s argument, albeit one few fundamentalists or evangelicals or Protestants or Mass-attending Catholics or Eastern Orthodox will share. Why? Because Eagleton seems to show little concern for a Jesus who walked on water or turned water to wine. Eagleton sees Jesus and his revolutionary message of love and justice as miracle enough, especially when compared to Hitchens’s and Dawkins’s faith in mankind’s progress through the mechanics of secular humanism, the great machine that produces antibiotics and stem-cell research, the integrated circuit and the internet, free speech and assembly and racial integration.

And Auschwitz.

He refers to Hitchens and Dawkins as “ ... astonishingly tight-lipped about the cock-ups and catastrophes of science ... “

One of the more straightforward and closely reasoned arguments against the liberal establishment’s position that Islam (as a religion) is at war with the Enlightenment.

“It is rather that, without the vast concentration camp known as the Gaza Strip, it is not all out of the question that the Twin Towers would still be standing.”

Eagleton then traces anti-western sentiments to the CIA’s part in bringing the shah to power in Iran and to our support for Wahhabbi feudalism in the Arabic pennisula. Why? Perhaps we can point to a colonial-like search for raw material and markets.

“Advanced capitalism is inherently agnostic ... Modern market societies tend to be secular, relativist, pragmatic, and materialistic.”

This side of the Atlantic we add religion to the mix whenever we want to spice up an argument. Evolution? Intelligent design? Is it a baby or simply a fetus? Eagleton thinks little of that sort thing.

“This brand of piety is horrified at the sight of a female breast but considerably less appalled by the obscene inequalities between rich and poor.”

For me, the most difficult segment was “Faith and Reason.” I quickly grasped his argument that atheists and agnostics have too much faith in reason; or to state it conversely, reason requires faith. But then Eagleton presents a thesis that God is “not a possible object of cognition,” and “that faith is for most part performative rather than propositional.”

Does that mean that we prove God exists by acting in love and compassion, justice and mercy? The issue is further dissected when the author discusses “knowledge” and “belief,” and suggests the “reduction of belief to positive knowledge” destroys the truths to be found in faith.

Readers interested in He Who Was Before the Big Bang and She Who Lives Beyond the Universe’s Edge will find the author’s work is erudite and powerful and will profit from reading and thinking about his thesis.

Joe Girardi, Teddy Ballgame, and Quantum Physics

garypresley@gmail.com (Gary) — Wed, 16 Dec 2009 18:33:00 +0000

Read the review here on The Internet Review of Books.

MATHLETICS:
How Gamblers, Managers, and Sports Enthusiasts Use
Mathematics in Baseball, Basketball, and Football
By Wayne L. Winston
375 pp. Princeton University Press $29.95

Does Joe Girardi, manager of the 2009 World Series winning New York Yankees, buy into Mathletics? Girardi didn’t write a blurb for Winston’s book, but television viewers did catch a glimpse of the Yankees’ manager consulting a large loose-leaf binder before making a pitching change during a Series game.

Year of the Dog, IV

garypresley@gmail.com (Gary) — Thu, 10 Dec 2009 23:18:00 +0000

Daisy Dog, the once super slender Boxer puppy, has passed her fourth month birthday fast gaining weight and size. She is thriving on a brew of homemade dog food, with sweet potatoes being the most recent addition to the vegetable-and-fish stew.

Last night I woke up with her sprawled across my chest. Presently she weighs less than 20 pounds, somewhat (but not much) smaller than our two Boston terriers. The Bostons sleep on our bed, the male between us, the female between my feet. Daisy has joined the crowded, which provoked this observation from my wife:

"She's going to be a full-grown Boxer who thinks she weighs 20 pounds."

I hope not, especially since this particular Boxer has proven herself somewhat difficult to housebreak. Daisy does nicely at night, whining when she wants to be let outdoors, but during the day, her attitude grows more ... casual.

In fact, I could be provoked in saying that this particular Boxer doesn't seem as intelligent as the terriers, or as intelligent as some other dogs I have known. A local Boxer fancier says the housebreaking issue is related to the dog's metabolism and relatively inefficient waste system -- in his words, a "small bladder."

"Don't even bother to try to housebreak a Boxer until they're passed four months old."

We shall see. It may be the price of a Boxer should include the price of new carpeting.

A Brief Review

garypresley@gmail.com (Gary) — Sat, 05 Dec 2009 22:14:00 +0000

Read other reviews here at The Internet Review of Books

HARVARD BEATS YALE 29-29

The Story of the Most Famous Football Game Ever Played in the Ivy League...as Told by the Players
By Kevin Rafferty
175 pp. The Overlook Press $35

The Iron Duke’s apocryphal words—”The battle of Waterloo was won on the playing-fields of Eton”—apparently could be turned upside down and stretched to cover what happened at Harvard Stadium, November 23rd, 1968.

The story is this: Yale is an undefeated football powerhouse. Harvard is having a decent year, but odds are they fall. And so it seems, score 29-13 in favor of Yale with 42 seconds left, whereupon Harvard back-up quarterback Frank Champi engineers a two-touchdown recovery to tie the unbeaten Yalies.

Many post-Viet Nam movers-and-shakers were connected to those elite Ivy League schools that day, including a future president and a vice-president (George W. Bush and Albert Gore), a chunk of the legal and financial establishment-to-be, the cartoonist who would go on to create Doonesbury, and even an Oscar-winner (Tommie Lee Jones was an All-League lineman for Harvard) and an Oscar-winner-by-proxy (Meryl Streep was dating Yale fullback Bob Levin).

All that’s not really relevant to Rafferty’s story, except for the inclusion of Trudeau’s cartoons satirizing the god-like status of Yale star Brian Dowling. Truth told, this isn’t a book so much as a nicely bound story-board for Rafferty’s documentary film that preceded the literary effort. Rafferty was a Harvard student in 1968, much to the dismay of his Yale alum father, and “ ... in 2006, I was casting about for the idea of a new film ... suddenly, there it was ... an idea.”

The book is interesting in the way that personalities shine through, but I suspect it would best serve as a companion to the film.

For example, Tommie Lee Jones comes across as blasé and taciturn, qualities that might be less enigmatic on film. And a Yale linebacker—”My intent was to inflict so much damage on him that he wouldn’t be able to play the game anymore.”—might not seem so thuggish if we were to hear his voice and watch his mannerisms. But again, he’s now “involved in the investment world,” and, well ...

Modern Love: Another Reaction

garypresley@gmail.com (Gary) — Fri, 04 Dec 2009 18:47:00 +0000

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 ... ?"

garypresley@gmail.com (Gary) — Thu, 03 Dec 2009 20:41:00 +0000

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."

Editors, Words, and Being Present in the World

garypresley@gmail.com (Gary) — Wed, 02 Dec 2009 20:46:00 +0000

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" Would I Let My Heart Outrun Its Pursuer

garypresley@gmail.com (Gary) — Mon, 30 Nov 2009 17:39:00 +0000

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"

garypresley@gmail.com (Gary) — Wed, 25 Nov 2009 20:02:00 +0000

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 and Buckley respectively. Having heard arguments on both sides of the debate – for and against consolidation and 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.

The Year of the Dog, III

garypresley@gmail.com (Gary) — Tue, 24 Nov 2009 14:27:00 +0000

Daisy, the dog, the Boxer girl, flourishes now, away from the mother who whelped thirteen, too many by far to suckle. I grew angry with the filler seemed packed into the commercial puppy mix, food that seemed never to satisfy and always to produce more waste than necessary, and so I've began to feed the youngster the same home mixture of meats (mainly fish), oil, vegetables, and grain that I give the adult dogs.

And there lies the problem. The adult dogs, both weighing around 20-pounds, are fit and shiny-coated and vigorous being fed between one and two cups of my potent mixture a day. Daisy, presently close to identical in frame size but perhaps only 12-to-15-pounds seems to need at least three cups of the mixture, dispensed over three feedings. And even with that, she remains hungry, at least from her mannerisms.

Researching "home made dog food" on the I'net revealed I apparently struck accidentally on the right mixture for good canine health. Dogs do not need as much protein as cats, a metabolic factor that may be the reason that commercial companies use so much filler. Add the bio-chemical necessities to sawdust, add flavoring from boiled-down slaughterhouse waste, and you have , the cheapest brand on the market.

It's an interesting exercise to feed one dog while two others are present. The two Boston terriers will obey the command "Stay" or "Wait" if I give it, but the male will edge closer and closer to Daisy as she gets her extra feedings. I usually keep a slice of whole grain bread in my hand to distract them, dividing it between the two as she finishes.

Doc, the male Boston, is extraordinarily protective of his food. Kitty, female, is alpha, but he will growl when she approaches his dish. That's generally no problem, for she eats slower than Doc. Doc will finish and then stand close to her. She usually stops eating while there's a bit left in her bowl, allowing him to take it. My wife says that's because she has the female "mothering" instinct, present even though she's never had puppies.

As for Daisy, it is too early to tell if she will display food aggression. She is presently so "puppy hungry" that she finishes her food in a few short gulps.

Don't Eat the Elephant in the Room!

garypresley@gmail.com (Gary) — Wed, 18 Nov 2009 20:15:00 +0000

A comment about the recent post regarding James E. McWilliams' book, Just Food, noted that, "he ignores the elephant in the room--overpopulation. Even if everyone in the world turned vegetarian overnight, every year the world's population would continue to grow at an ever-faster rate."

Actually, McWilliams does speak to that issue, mostly in relation to the energy and land (which would need to be cleared/converted) required to produce meat for the earth's current population as well as the population growth expected. For example, "grains produce between 1.5 to 2.5 food calories for every calorie of fossil fuel burned."

Conversely, even "the production of range-fed beef requires 3 calories of fossil fuel for every 1 calorie of meat produced." Worse, feedlot cattle require 33 calories of fossil fuel.

The situation is complicated by the fact when a nation's income increases -- think China -- the demand for meat skyrockets. That means converting more land to grow cattle, with all the inefficiency of energy use expanded further.

McWilliams does advocate a concerted effort to increase "aquaculture" -- that is, fish farming, a technique for which he offers figures illustrating its superior efficiency.

Thus, it is evident that McWilliams is not advocating the cessation of meat consumption world-wide. He simply says there is a better way than clearing the Amazon basin for pasture or confining hundreds of thousands of cattle to feedlots and applying growth hormones and antibiotics.

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 the Washington Post.
Read his opinion piece at this link.
Read the IRB's review of Just Food at this link.

A Book Review: Just Food

garypresley@gmail.com (Gary) — Mon, 16 Nov 2009 20:24:00 +0000

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.