Armbands and Parking Spaces

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?

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?

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.

1. Is it a sign the publisher thought more highly of the memoir than the public?
2. Or is it a sign that the book is popular enough that it has pervaded even the outer reaches of marketing?
3. 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

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

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

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

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

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

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

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

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

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

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.