Book Review: Blood Brothers

Non-Fiction Look at Disability




A couple of months ago, I got an email from Michael Weisskopf's publicist, asking if I would review "Blood Brothers" if he sent me a free copy. A sucker for any free book, I said yes immediately.

I was interested in this take on disability: Michael Weisskopf, a reporter for Time, was imbedded with a unit in Iraq when his right hand was blown off when a grenade was thrown into the truck in which he was riding. He actually attempted to throw the grenade out of the truck before it went off, and consequently was credited with saving the lives of everyone there, including himself.


Personal, not Political

Weisskopf's book is steadfastly neutral on the issue of the whether or not the war in Iraq is justified or reasonable, or that the sacrifices made by the soldiers on which he focuses are "good" ones. This left me wondering what Weisskopf himself thinks about the war. It is clear from the book, however, that none of the soldiers, who lost arms and/or legs, question whether or not these losses flow from a "just" war, or an intelligently fought one.

I found this a little incredible, but then, I am not immersed in military culture. In one case, there was a soldier who appeared in Michael Moore's Fahrenheit 911 was furious with Moore when he realized that his footage was used to convey an antiwar message. I believe that in order to ensure his subjects' cooperation, as well as to honor their unflagging belief in the righteousness of their cause and country, Weisskopf tiptoes around the issue of the reasons and execution of the war itself.


Extremely Readable

The book moves right along and I read it compulsively, even though I rarely read non-fiction. I wanted to know whether or not Weisskopf and his military "blood brothers" successfully adjusted to their respective disabilities.

I was relieved when Weisskopf stopped wanting to hide his amputation in favor of a much more functional and comfortable hook, in lieu of a high-tech electronic prosthetic with a hand-painted latex hand.

I was dismayed that the soldier who was a double leg amputee felt shamed by using a wheelchair, even though his prostheses caused him so much pain that he had to take heavy-duty painkillers to walk anywhere.


Rehab in Walter Reed

Weisskopf's description of his experience with rehab in Walter Reed, the military hospital in Washington D.C., was very interesting. His description of some of the people who work at Walter Reed, from nurses to volunteers were good "slice of life" characterizations -- but left me wanting more.

The Body-Armored Elephant in the Room

When Weisskopf started writing this book, I don't think the war in Iraq had become so unpopular, nor the general populace so uneasy with the whole package of the war: the justifications, the American losses, the increasing violence, the decreasing clarity about how we get out and when. Reading the book now, it is hard not to keep coming back to those questions, and as I said above, Weisskopf's respect for the soldier's pro-war, pro-military positions kept him from exploring those questions.

It would be interesting to read a follow-up -- either another book or a long magazine article -- about the continuing evolution of how all of the men, including the author, adjusted to their disabilities. As compelling, though, would be a "gloves-off" discussion of was it all worth it in the first place.

Where the Cabs Are -- The End

This is an unexpected ending to this story, most especially unexpected by me.

The Mountain View Voice did publish my editorial -- with minimal editing, in September. After that, I never heard from the Voice or from Caltrain. I got busy at work, and was more or less resigned to the new parking lot configuration.

In October, I had two unfortunate weeks of being without my primary wheelchair, and drove to work, being reluctant to take my backup chair on the train and the backroads of my commute.

On November 3rd, I arrived at the Mountain View Caltrain station at 9:45 am to find workman from Caltrain repainting the parking area and returning it to its original configuration!

Aki, my friend the coffee-stand operator, said, "Look! You did it!" She was almost as excited as I was.

They even put 3 taxi parking spaces in the area of the parking lot that I had suggested -- all without a word to me -- not that Caltrain is obligated to check in with me.

I was gratified to note that 7-8 of the restored 10 disabled parking spaces were being used at subsequent visits to the train station.

Where the Cabs Are -- part IV

Yes, I'm getting bored with this, too, but in the interest of fairness, I feel compelled to continue the story...

Mr. Frances has a Change of Heart

After my last email, I got this response from Don Frances of the MountainView Voice:

"Ms. Adams,

I appreciate your position here. I didn't mean to say that your knowledge of the parking situation is inadequate, only that the specific submission you sent is inadequate. Especially in this case -- and especially from you, who are an expert on this issue -- something a little more profound than "it pisses me off" is in order.

I've seen plenty of blogs and can say without question that the language, style and tone used in them is not what's called for in news print. That's the beauty of blogs -- no rules -- but it's the rare blog entry that can be cut and pasted onto an op-ed page.

Meanwhile, your concern definitely has merit. In fact, the publisher has asked us to look into why and how those spaces were turned over to taxis so suddenly. We'll be looking into that in a future edition.

That said, maybe we could try a "do over," if you're up for it, with the intention of running a response from you on the taxi story. I think that, given your expertise, you are better qualified than anybody at putting the need for handicap spaces, including their location and number, in context -- and at providing interesting details that others may not know, such as the fact that taxis aren't required to be handicap-accessible.

Deadline for each week's paper is the previous Monday -- so for example today is the deadline for this Friday's paper. Our maximum-space guidelines for the op-ed page are: about 250 words for a letter to the editor, or no more than 600 words for a "guest editorial," meaning a full-length column.

Please let me know your thoughts on this.

Yours,
Don Frances"

Six hundred + words:

The View from Where I Sit


The July 28th Voice story, "Never a cab when you need one" by Daniel Debolt, described the lack of taxi access to the Mountain View Caltrain parking lot as viewed by neighborhood resident, Scott Neuman.

In addition to this story, the Voice also contacted the Joint Powers Board, which oversees Caltrain, about the problem. Apparently, after viewing the scene one time, a Joint Powers Board staffer, Joan Jenkins, expedited changing several parking places previously designated as disabled persons’ parking to taxi parking.

As a person with a disability who uses a power wheelchair for mobility, and who has sometimes parked in the disabled persons’ parking at the Mountain View Caltrain station, I was dismayed at how quickly and thoughtlessly the disabled (“handicap”) parking spaces were reallocated for taxis waiting for passengers – by mid-August!

The taxi parking could have been placed elsewhere and still be convenient to travelers arriving at the station by Caltrain or Light Rail – at a right angle to where they are located now for example, without eliminating any of the disabled persons’ parking. How was it determined that five taxi spaces were needed? The taxis seem to be congregating and waiting for radio calls, too. Is it necessary that all the cabs be in the same place? I thought that cabs needed to be spread about, by the very nature of their service.

The original design and placement of the disabled persons’ parking at this station was great. All of the spaces were adjacent to the platform and the asphalt is flush with the platform surface so no ramps or curb cuts are needed. This is easier and safer for both wheelchair users and for persons with other types of mobility impairments to navigate. The location is also closest to the waiting area designated for Caltrain passengers using wheelchairs – we are supposed to wait in a very specific designated area so that the conductors can spot us waiting. Unfortunately, unlike both the Light Rail and BART, wheelchair-using Caltrain passengers cannot board independently and conductors must assist us with either a lift built into one car on each train, a ramp for the Baby Bullet trains, or the older, manually cranked lifts, failing other methods.

Five disabled parking spaces were converted to taxi spaces at the north end of the platform and two disabled spaces were added at the southern end of the platform – for a net loss of three disabled spaces. The new spaces are significantly farther from the Light Rail, and from the designated wheelchair waiting areas for Caltrain, regardless of which direction you are traveling. Because there is a curb at that end of the platform, an asphalt “ramp” was poured to provide a transition to the parking lot – a transition that could be somewhat dangerous in the dark.

Taxicabs are not wheelchair accessible

Taxis are not required to be wheelchair accessible. Taxicabs are defined as on-call transit under the law, and as such, do not have the same mandates for accessibility as other types of public transit. (They are required not to discriminate against disabled passengers who have equipment that can be stowed in the trunk, such as folding manual wheelchairs, walkers, and canes.) Occasionally, a cab company will have one wheelchair accessible cab, but have to arrange the ride far in advance – which is antithetical to how taxicabs are intended to be used, i.e., as needed.

There is no doubt in my mind that this change occurred without serious or educated thought to how it would affect disabled users of the Mountain View Caltrain station. I hope that this decision will be revisited and amended. It would be an easy to restore the disabled parking to its original configuration and move the taxi spaces – however many are actually needed – to an adjacent location."

I'll let you know if 1) it gets published; and 2) if anything actually changes at the station...

Links and Creating Community

New Links

I just wanted to note that I've been adding new links to fellow crip bloggers. When I started blogging, close to a year ago now, I was reluctant to add links -- I saw so many sites where the lists of links to other blogs went on and on. I wanted to be a little more discerning. I'm somewhat of a snob about the quality of the writing, apart from the opinions expressed.

I haven't abandoned my snobbery, but I have also come to feel that some people are expressing opinions and/or experiences of such universal value that their content is more important than their spelling or grammar. I still think, however, that we need to strive for quality writing -- for the simple reason that good writing is taken more seriously than bad.

Along these lines, I feel that I must note that some of our crip friends in the U.K. are writing beautiful, literate stuff, most notably The Meanderings of a Politically Incorrect Crip.

On this side of the pond, Wheelchair Dancer writes about her world of dance and the larger world of disability with a perspective that is both broad and personal.

Heartening

Rarely does a week go by when I don't encounter some disability-related idiocy. Sometimes I write about it and sometimes I don't. Reading the writings of my fellow travelers reassures me that I'm not the wrong-headed one -- despite efforts to convince me of the contrary.

Thanks.

Going Beyond Disease to Address Disability

IB Rollin' posted this on his blog, Crip Revolution (see link in sidebar), and thought it deserved another link...

Going beyond Disease to Address Disability by Dr. Lisa I. Iezzoni

Where the cabs are -- part III

Eliciting Wrath

I had sent a full-text copy of "Where the Cabs Are" to the MountainView Voice -- to the reporter and the editor -- by email when I first posted it on August 28th. I invited them to publish it as a letter to the editor or a stand-alone piece. I monitored the next two issues of the Voice (which is a weekly), and saw nothing, nor did either of the gentleman contact me.

So, on Friday afternoon, I resent the email, with this new message at the top:

"The email below was sent on 8/29/06 in response to the articles I read in the MountainView Voice about the taxi cab "situation" at the CalTrain Station in Mountain View. To date, I have not heard anything at all from the Voice -- nor have I been able to find anything in the Voice offering a dissenting or differing opinion to that expressed by Mr. DeBolt, which surprised me. Perhaps this did not make it to the proper desk? Thank you for your attention."

Later Friday afternoon, I was surprised to receive this email from Don Frances, who is the editor of the MountainView Voice:

"While I welcome any opinion -- even a dissatisfied one -- on the taxi parking situation at Caltrain station, it's very hard to know what to do with your particular submission. First of all, the tone is strange -- for example, you call handicapped people "crips," which I guess is supposed to be OK because you are handicapped, but which isn't appropriate for our paper.

Second of all, the content is mostly the story of your personal realization as to how and why a half-dozen handicapped spots went to taxis. In the end, this realization "pisses me off," as you put it. Well, so what? You don't have any numbers or facts available which would shine light on the fairness (or unfairness) of the new parking policy. I wouldn't be surprised if such a study required much greater resources than you or I have at our disposal, especially given the way anecdotal observation can be misleading. (For example, it's reasonable to assume that handicapped people use taxis too.)

The Voice is interested in reporting local news. So, if taxis, neighbors and riders are demonstrably unhappy with the parking situation, we'll report that. And if handicapped Caltrain riders, who plan on parking at the Mountain View station, are demonstrably unhappy with a new parking situation at the station, we'll run that too. Since you don't drive to the station, and don't seem to know much about it, it's unclear to me why we should run this.

Sincerely,
Don Frances"

My Response to Mr. Frances

"Dear Mr. Frances:

Thank you for responding to my email. Even a negative response is preferable to no response at all.

I am sorry that some of my language was offensive to you. I intentionally use a colloquial style of writing when I am writing for my blog, "Crip Chronicles". While I understand that "crip" is thought to be an offensive term by some, within the disabled community it is a term in regular use to identify people with disabilities.

Likewise, the term "pisses me off" was used with intention. I believe that people who read my blog, fellow "crips" and those with sympathies for our community, are frequently "pissed off" by situations just like this one.

Parenthetically, you might be interested to glance at the internet and the "blogosphrere" to see how many people are writing about "crips" and "gimps" with seriousness, thoughtfulness and respect for issues related to people with disabilities.

More formally, I was angered by a seemingly thoughtless action and the subsequent reporting of it as supposedly benefiting "handicapped" people -- to get easier access to taxis -- without looking at the impact of losing or moving handicap parking places at the train station.

The tendency of action "for" people with disabilities without consulting them is addressed by the phrase, "Nothing about us without us." James I. Charlton wrote a book about this entitled, "Nothing About Us Without Us: Disability Oppression and Empowerment".

You mention that, in theory, "it's reasonable to assume that handicapped people use taxis too." Did you know that the law does not require on-call transportation, such as taxi cabs, to be wheelchair accessible? This is why, if I am using my power wheelchair, I cannot use a cab. A manual wheelchair user could only use a cab if they were able to transfer onto the cab seat, and if the driver were willing to assist in loading the chair -- if it were possible -- into the trunk.

Need it be also be mentioned that people with disabilities are less likely to be able to afford a cab?

I am sorry that you feel my knowledge of the parking situation is so inadequate as to be worthy of forming an opinion in regard to the disabled parking places. While I don't use the lot customarily, I have used it a few times. This led to my original remarks:

"One of the things I always admired about this station was how they had laid out the disabled parking. It is right next to the CalTrain south-bound platform, near to the cross-over to to get to the light rail line and to the north-bound CalTrain platform. All of the crip spaces are flush with the platform/sidewalk, so one does not have to negotiate any ramps or curbs; all of the spaces adjoin the sidewalk so the path of travel is completely safe."

Also, I am aware that the ADA (federal law) and Title 24 (California state law) mandate how many handicap spaces are required in public parking lots. There is a formula that can be found in the "CalDAAG" regulations. The only thing I don't know about this particular parking lot is how many spaces there are in total; the required number of handicap ("handicap" is the term used in the regulations) parking spaces is based on a percentage of the total number of spaces.

What I tried to suggest was that 1) this change was made without regard to how it might affect commuters with disabilities; and 2) this change was made without regard to actual demand for cabs at the train station. I was also expressing my anger at this -- because it is typical of my lifelong experience as a person with a disability.

I work full-time in a professional position in which I provide services for persons with disabilities; I have a law degree from UC Hastings College of the Law. I mention these things because I felt your response was somewhat disrespectful -- as though you were addressing an ignorant crank who is whistling in the dark about issues of which she has no real knowledge.

I can only hope that the next time such an issue arises which is covered in your newspaper, you might ask your reporter(s) to do a little research into the possible impact on persons with disabilities -- and not simply assume that it will be positive or neutral.

Sincerely,

Teri Adams, J.D."

Interesting Pattern

This exchange about the taxis is the second time in the last three months in which I have received a response that seemed over-the-top in comparison to what I had said to someone about a disability-related physical barrier issue. I always endeavor, however angry or disappointed I might be, to be thoughtful, articulate and considered in what I say. By the same token, I try to call 'em like I see 'em.

It is interesting to me how often this results in people responding by telling me that I either don't know what I'm talking about, am a wild-eyed hot-head, or a shamefully ungrateful crip. Excuse me -- ungrateful person with a disability.

Where the Cabs Are, II

Civil Disobedience -- Or Simple Force of Habit?

Since writing "Where the Cabs Are", the number of cabs waiting, when I have been at the train station, has gone from a solid six down to two or three. Today, at 9:20 am, there were two, and in the first cab space, there was a car with a placard instead of a cab.

I went around to make sure that they hadn't changed the signs again, and they hadn't; the car with the crip placard was parked in a "Taxi" stand designated space. It made me smile broadly and wonder if a fellow crip was sticking it to the "man", or if, by force of habit, they had parked there because that is where they always park at the train station.

There was no ticket on the windshield, and a sheriff's car cruised through the parking lot real slowwww, but didn't give anyone a ticket while I was there.

To Be Continued?

I sent WTCA to the editor and the reporter from the MountainView Voice, and to a honcho at CalTrain, but have yet to hear from any of them. I'll let you know what happens, if anything...

Where the Cabs Are...

...At the Mountain View Train Station

Every weekday, I take the VTA light rail from my home in Sunnyvale to the Mountain View CalTrain station. In addition to being at the end of the Winchester-Mountain View line of the light rail, CalTrain stops here, and there is considerable bus service.

One of the things I always admired about this station was how they had laid out the disabled parking. It is right next to the CalTrain south-bound platform, near to the cross-over to to get to the light rail line and to the north-bound CalTrain platform. All of the crip spaces are flush with the platform/sidewalk, so one does not have to negotiate any ramps or curbs; all of the spaces adjoin the sidewalk so the path of travel is completely safe.

Last week, when I got to the station, I was shocked to see several cabs in parked in the designated crip spaces. I watched them -- the drivers were milling about the six cabs that were waiting -- in the half hour while I waited for the train, one person came up and took a cab. Another empty cab immediately took it's place.

I called the 800 number on the cabs and reported -- what I thought -- were illegally parked cabs.

All is Not as it Appears

When I got back to Mountain View that evening, the cabs were still there. I went up to a driver and said, "How come you guys are parking here now?" He looked at me blankly -- whether flummoxed by my question or my English, another driver interceded.

"In response to a complaint," he said, gesturing to the sign posted in front of the parking space.

"Doh", I thought. This was the first time I had observed the scene from the parking lot side of the signage. Low and behold, Taxi Parking had replaced several crip spaces, and they had the signage to prove it.

"Oh," I said. "Thank you." Glad not to have screeched at him for parking in the space that he was authorized to park in...

From One Extreme to Another?

After that, I started watching the cab situation every time I was at the station, generally between 10:30 - 11 am and between 5:30 - 7 pm. Six cabs always parked -- at most I've seen one cab taken in the time I'm watching.

In the meantime, I'm guesstimating that 4 crip parking spaces have been sacrificed. And yes, most days, all of the remaining crip spaces are being used, legitimately, by people with placards. Since gas prices have gone up, I've noticed that the parking lot is pretty full, until after 6:30 pm or so in the evenings, when people start coming home from work.

A sign next to the new Taxi Parking area says that there is additional "handicap" parking at the end of the platform, but when I went to look for it last week, I couldn't find it. I did see a new asphalt ramp -- there is a curb at that end, instead of being flush -- where they may be adding a couple of crip parking spaces, but they are the equivalent of a block or more away from where they were removed. This would be okay if you were taking CalTrain, but if you are coming to the station to catch the light rail or a bus, then you have considerably increased the distance to your public transit.

Where the original spaces were designated is as close as you can get with a car to both the light rail and the designated wheelchair/disabled waiting areas for either direction of travel on CalTrain. The location of the spaces to be added, as I understand it requires a lot more travel to get to either the CalTrain crip boarding areas or the light rail.

The additional distance wouldn't be a huge hardship for me, as I use a power chair, but it would matter if I was walking with a mobility impairment, or pushed a manual chair with difficulty. It is also further away from the bulk of activity, and would be creepier the later and the darker it gets.

Playing the Crip Card

In the article in the MountainView Voice by Daniel DeBolt (http://www.mv-voice.com/story.php?story_id=1871), mentions the difficulty of catching a cab "--even those with a disability or carrying heavy bags--" had to cross the parking lot to go to Evelyn Street where the cabs were lined up. He also quotes a Mountain View resident as saying, "The easy answer is for CalTrain to carve out a half-dozen spots for taxis."

Which is exactly what they did -- six taxi spots in lieu of four crip spaces.

My Questions:

• Did anyone do any sort of a survey to see what the actual need was for cab service -- as in how many cabs need to be parked in the station at any given time?
• Collaterally, did anyone monitor the usage of the disabled spaces, and whether they were being used?
• Did anyone consider the impact of the relocation of the disabled spaces that are supposedly being added at "the southern end of the platform"?

I'm not a fan of "task forces", but a judicious week long observation of the parking lot at key times, plus a few random times, should establish actual traffic patterns and not arbitrary numbers.

Of Note

At right angles to where the taxis are now parked, and where the flush crip spaces have been removed, there is a row of paid spaces. Did anyone consider converting those spaces to taxi parking instead of changing the number and designation of the disabled parking spaces? If the taxis were there, they are almost exactly as close to the train and light rail station.

First Impressions, and Second Ones

Before I heard about the article in the MountainView Voice that may have prompted this change, I thought, "somebody at the cab company" must have "greased" somebody at CalTrain or in Mountain View's government to get this put through.

Now that I know that this article appeared in the July 28th, 2006 issue of the Voice, I am amazed at how fast the change was made, having had some experience in how slowly the wheels of various governmental and quasi-governmental entities can turn. Which made me reflect on my first, erroneous impression.

I also wondered if any attempt was made to talk to any actual disabled commuters as to how this change might effect them.

Finally...

When I arrive at the Mountain View station in the morning, and note that all of the crip spaces are taken, as well as the cluster of chatting taxi drivers around their stationary cabs -- it pisses me off.

The More Money You Have, The Better Off You Are -- Who Knew?

A friend forwarded this article to me, which is actually pretty interesting because it points up the fact that even moderate increases in resources can translate into measurable differences in amount of functional limitation. This also dovetails with my belief that the more you can accommodate someone's disability (which usually takes money), the more you can mitigate the functional limitations and increase quality of life. This is, for me, stating the obvious, but apparently the concepts are supported by controlled studies as well.

http://www.berkeley.edu/news/media/releases/2006/08/16 disability.shtml

New study links higher income with lower disability rates
By Sarah Yang, Media Relations 16 August 2006

BERKELEY – Numerous studies have already established the link between extreme poverty and poor health, but a new study led by a public health researcher at the University of California, Berkeley, has found that health disparities exist even between those with higher incomes.

"What was unusual was that we found that people in the middle class were still at a disadvantage compared with those at just a slightly higher income," said Meredith Minkler, professor of health and social behavior at UC Berkeley's School of Public Health and lead author of the study, published in the Aug. 17 issue of the New England Journal of Medicine.

"The fact that there's a significant difference between people at 600 and 700 percent above the poverty level was a striking finding of this study."

Household income was categorized into nine levels, from less than 100 percent of the poverty line to 700 percent and higher. In 2000, the poverty threshold for a person living alone who was 65 or older was $8,259 per year, and it was $17,761 for a four-person household. A single 65-year-old living at 600 percent of poverty would therefore earn $49,544 per year in income while someone at 700 percent of poverty would earn $57,813. A four-person household at 600 percent of poverty would take in $106,566 per year, while the comparable annual income at 700 percent is $124,327.

"We have lots of evidence that wealthier people in society are healthier and live longer than the poorest, but less settled is whether you see this gradient with respect to disability, and whether it plays out among older people," said Minkler.

The researchers found significant differences in the rates of limitations even among those in the upper income brackets. Among those who were 55-74 years old, even those at 600-699 percent of the poverty line had elevated odds of having a disability compared to those at 700 percent and higher. For example, women aged 55-64 in the 600-699 percent category had 16 percent higher odds of disability than women in the 700 percent bracket, and men aged 65-74 in the 600-699 percent group had 44 percent higher odds than men in the 700 percent group.

Co-authors of the study are Esme Fuller-Thomson, associate professor of social work at the University of Toronto, and Jack Guralnik, M.D., chief of the Laboratory of Epidemiology, Demography and Biometry Section at the National Institute on Aging.

The researchers looked at data from 335,000 respondents aged 55 and older to the Census 2000 American Community Survey. They compared poverty level status with the rate of functional limitation, defined as a long-lasting condition that substantially limited one or more basic physical activities, such as walking, reaching or lifting. They chose functional limitation as a variable over death or illness, since many chronic diseases affect functional status.

Of the respondents surveyed, 80,791 had functional limitations. Not surprisingly, the prevalence of functional limitation increased with age. Among men aged 55-64 years, 16.2 percent reported some level of functional limitation compared with 47.5 percent for those aged 85 years and over. Among women who were 55-64 years old, 17.2 percent had functional limitation compared with 57.9 percent for those 85 and over.

The researchers found the biggest differences among the younger age group, those aged 55-64. In that group, people who were living in poverty were six times more likely to report functional limitation than people in the same age group who were living at or above 700 percent of the poverty level, with very little difference between men and women.

"These findings underscore that poverty is one of the major risk factors for disability," said Fuller-Thomson.

The study authors point to a number of possible explanations for the social gradient in health. The upper class has lower rates of smoking, and may have less stress, better access to health coverage, and healthier environments, including safer neighborhoods that encourage walking and have less pollution, even when compared with those living comfortable middle class lives, according to the researchers.

"We know that Americans 55 and above today are relatively health conscious compared to prior generations, but it may be that the wealthiest Americans have the greatest edge in acting upon their motivations to stay healthy," said Minkler. "For instance, wealthier adults with problems walking can afford to renovate their homes to make them more accessible to wheelchairs. This could include widening doorways and installing ramps in the home's front entrance."

The researchers point out that while the rate of disability has been declining slowly but steadily over the past two decades, the aging of the baby boomer generation means that the sheer number of people with disabilities is going to increase.

"There are now almost 8,000 people turning 60 every day in the U.S.," said Minkler. "It's therefore important for us to understand all of the factors that affect disability rates. Social class is a badly neglected determinant of health and illness. This study highlights that socioeconomic status operates independently of such factors as race, ethnicity and health behaviors. Although researchers often control for social class, it warrants much more focused attention."

The study was funded by a grant from the Retirement Research Foundation with additional support from the National Institute on Aging, part of the National Institutes of Health.

Smooth as a Baby's Butt...

(Not that I have any personal experience with babies or their butts. One hopes, however, that their butts live up to the smoothness fabled in story and song...)

...Pavement, That Is

Last weekend, my sister and I went to have lunch with the Units (parental units). As we turned onto the freeway, sis exclaimed, "Oooo, new pavement. They haven't even painted the lines yet."

Which reminded me of this blog I've been meaning to write.

The Ground Beneath my Wheels (not to be confused with the wind beneath my wings)

Since I spend approximately 10 hours a day in my wheelchair -- from leaving my house in the morning to get on the light rail to begin my commute, to the return trip in the evening -- in any given day I experience driving over a wide variety of surfaces:

• asphalt (blacktop)
• concrete
• bricks (decorative and regular)
• decomposed granite
• dirt
• low pile carpet
• wood flooring
• vinyl or linoleum
• polished stone (as you will find in some shopping malls)
• sand or gravel (rarely)
• decorative concrete (you know, the kind that has little rocks mixed in -- medium bumpy)

I have solid inserts in my tires because I don't want to have to deal with getting a flat, so my ride is a little bumpier than it would be if I had air in the tires. The tradeoff of no flats is more than worth it. (Some people who have disabilities which make them more sensitive to the jarring of the ride can't really take advantage of this no-flat option.)

Sidewalks -- Repaired and Not -- The Bad Patch

At the beginning of the summer, some bureaucratic body (I don't know who has jurisdiction over this stretch of sidewalk) finally repaired a stretch of sidewalk that has been problematic for as long as I have used it, which is about 10 years.

It is on the route to downtown from Ivy West University, as well as from either downtown or IWU to the train station. The sidewalk was rendered dangerously uneven by tree roots, displacing slabs of concrete a good six inches up and then down again. It had been patched -- badly -- with some laying on of asphalt some time back. It was far worse than crossing the train tracks, which I have to do several times a day.

Go, Speed Racer

When I am coming from work to catch the train, I am going full-out in my chair (around 5 mph), allowing for traffic, bicycles, pedestrians and pavement quality. When I came to TBP, I would come to a full stop, and then ease over the displaced sidewalk. Now that it is repaired, I don't even slow down until I reach the pedestrian tunnel -- where there is a 2 inch bump where the sidewalk transitions into the tunnel. It is as smooth as a baby's butt. And, since I'm unaccustomed to it as yet, it gives me a little thrill of pleasure every time I go that route.

It's the little -- and, one hopes, smooth -- things in life.

Can't Say I'm Surprised

I received the article below from ADA Watch as an email. I thought I would share it with you...

President, Congress Fail to Lead on ADA Restoration Act -- 16th ADA Anniversary and the Unfulfilled Promise of Historic Disability Rights Law


WASHINGTON, July 26, 2006 – Today we acknowledge the 16th anniversary of the Americans with Disabilities Act (ADA) – and yet another year of inaction on ADA restoration proposals put forth by the President’s own advisors.

In 2004, responding to years of court decisions that have significantly weakened the ADA, the National Council on Disability (NCD) – whose 15 members were nominated by President Bush and confirmed by the Senate – released comprehensive legislative recommendations for restoring civil rights protections for children and adults with physical, mental, cognitive and developmental disabilities.

Upon release of the NCD report, Cox News Service reporter, Andrew Mollison, predicted:

“Since the council members are Bush appointees, their recommendation is expected to receive serious consideration by the Republican-controlled Congress. The president is also expected to sympathize, because he pushed hard in his first term for cheaper but better ways to get jobs for adults with disabilities, and the proposed revision of the ADA wouldn't require higher federal spending.”

Despite former and current Republican members of Congress crying “foul” in response to the weakening of the ADA – Ohio Republican Senator Mike DeWine, for example, has said that he is "deeply troubled by the Court’s lack of deference to Congress." – no support has come from the White House or the Congressional leadership to advance NCD’s blueprints for restoring the ADA.

Jim Ward, Founder and President of ADA Watch and the National Coalition for Disability Rights, explains that 16 years after passage of the ADA, “more than 96% of employment case under the ADA are dismissed on “summary judgment” – meaning that the facts of the alleged discrimination are never given a fair hearing. Furthermore, people with disabilities such as epilepsy, diabetes, mental illness and more are routinely denied justice and labeled “not disabled enough” by judges who narrowly interpret the intent of Congress in passing the ADA.

“Despite widespread agreement that the courts are misinterpreting the Americans with Disabilities Act, neither the White House or Congress has responded to the urgent need to reverse the damage done. Neither the White House nor Congress has heeded NCD’s recommendations for legislatively restoring the Americans with Disabilities Act.”

“This shameful inaction and delay by the White House and Congressional leaders, leaves unfulfilled America’s promise of equal justice and opportunity for citizens with disabilities.”

ADA Watch/NCDR is an alliance of hundreds of disability, civil rights and social justice organizations united to defend and advance the Americans with Disabilities Act (ADA) and the human rights of children and adults with physical, mental, cognitive and developmental disabilities. More information can be found at www.adawatch.org

A Novel That Tells it Like it Was, and Is

Writing About What You Know

Harriet McBryde Johnson is the author of a new novel, Accidents of Nature. It is categorized as a Young Adult Novel, but like many YA books, it is a fine adult read. In fact, if I could afford it, I would buy copies for every uninitiated, clueless do-gooder for the disabled that I meet and/or work with.



Like me, Harriet McBryde Johnson grew up with a disability. Like me, she was in “special ed” until the age of 13, and went to “crip camp”. I only went to crip camp once; if one can extrapolate from the novel, it sounds like Harriet had a better time than I did, because she went to crip camp more than once.

Accidents of Nature is about crip camp circa 1970, the first year that the narrator of the novel, Jean, goes to camp. Jean is a “spaz” with CP who uses a wheelchair. The pivotal character of the novel – based upon, one guesses, the author – is Sara, who is a camp veteran and also uses a wheelchair.

The plot is a simple one of coming of age, coming to grips and coming to terms, if you will. It is a quick read, and for me, was like reading a personal parallel history. (Isn’t there an old line about, “We went to different schools together”?)

This novel confirms the answers I’ve come to about some of the more difficult questions about disability and disability politics and the crip experience:

* It really is us (“crips”) against them (“norms”); very, very few of the non-crip do-gooders really get it, even now

* Children with visible disabilities, perhaps severe disabilities, whose parents convince them that they are “just like everyone else” are doing those children a grave disservice in the sense that those children are in a for a rude awakening the minute they are out of the protected zone of family and the familiar

* Telling disabled children that they are all winners in competitions or athletic events – even rigging the game to give truth to the lie – is a patronizing ploy done for the benefit of the adults

* Many (not all) of the people in the “helping professions” are using us (“the crips”) to work out their issues

HMJ uses politically incorrect jargon for different disability types that resonates loud and clear and true to me.

One thing I thought she skirted around a little was cross-disability tensions, particularly in groups of children/young adults with vastly different cognitive abilities. Her depiction of a baseball game and other activities in which each individual with a disability uses the abilities they do have to benefit the group overall was dead on.

Harriet McBryde Johnson is also the author of a memoir, Too Late to Die Young, which I also highly recommend.

The first time I heard the expression, “chick lit”, I thought they said, “crip lit”. There’s definitely room for both.

Coffee for Crips!

I Like My Caffeine

Ok, I need my caffeine. A triple latte seems like an ideal way to start the day, to me. Especially while in transit to a job I might not be thrilled about.

For the past year and a half, I have been commuting by public transit, which involves light rail and transfer to a commuter rail system. At the station where I make that transfer, there used to be a coffee stand, which I loved. Sadly, it is gone, as of a couple of months ago. Now, I must forage for coffee.

I am in downtown Mountain View, CA, and the Starbucks outlet is really too far from the train station for a quick run, even using my 5 mph power Quickie.


The Locals

There are 2 independent coffee places within 4 blocks of the station, and a third is under renovation, so one would think that I should hardly need to pine for Starbucks...

Both of the independents have moderate to severe access problems:

• no code compliant entrance
• no lowered counters
• no accessible stand for lids, sugar, etc.

I'm not sure about whether the restrooms are code compliant, but it would be a significant surprise to me if they are.

It should be mentioned that the employees in both of these stores are very nice, and helpful. Yes, I get my coffee. Yes, they will hand me a lid or even put it on. That is not the point.

Hail, Starbucks!

Back in the '90s, when I lived in San Francisco, Starbucks opened a store in the 24th Street shopping district, much to the dismay of the locals. They decried the advent of another chain store moving into the neighborhood, killing the local businesses.

In reality, that Starbucks moved into a space that had been empty for quite a long time. Both of the other coffee places, within 6 blocks continued to thrive. The reason I would usually go to the Starbucks is that they were completely accessible.

Their entrance was accessible. Their bathroom was accessible. They had a lowered counter where you ordered -- although, unfortunately, most Starbucks have the high pickup counters. The condiment/lids station is accessible and you can reach everything.

The feature that most impressed me was that it was clear that you could get a wheelchair behind the counter, if you wanted to. If you had a store where someone just ran the cash register, or took the drive-thru orders, you could have a person in a wheelchair perform that job.

About four years ago, I stayed a couple of nights in a Best Western in Agate Beach, Oregon. Their in-hotel sundries store, which contained an espresso counter, was run by a man in a wheelchair. He had arranged everything in sort of a U shape around him so that everything was the perfect height and well within reach. He split the shifts with his wife, who rolled in an office chair on her shifts.

The Larger Issue

These inaccessible (to one degree or another) independent coffee shops point up some relevant points for retailers everywhere. To wit:

• more and more of your customers are going to have mobility impairments (because of the aging of the baby boomers)
• in contrast to the past, more and more of these disabled customers are going to have money to spend in your stores
• persons with acquired disabilities are probably going to be even less inclined than I am to frequent stores that are inaccessible, if there are accessible options available
• having clean, accessible restrooms is going to be a big draw -- trust me on this one
• Legal, compliance issues aside, it is good business to make your store as accessible as possible

Like many Americans, I spend too much money on coffee drinks and snacks -- think of it as self-medication. I will spend those dollars in the stores I find most pleasant to use. Being able to enter, exit and use the restroom independently are all hallmarks of venues in which I am likely to vote with a dollar.

Political Crip Art -- "Helping the Handicapped"

Check out http://www.sinnlos.st/help/eng/help1.htm.

A friend sent me this link today. It is a photo-essay on the different models of disability. At the end, there is a link to a 2003 speech by the creator of the piece, Dr. Ju Gosling. Together and separately, both the speech and the photo-essay are eloquent on the subject of living with disabilities in the 21st Century.

Crip Bloggers Unite, post script

Blogging Against Disablism Day

was a huge success. I've had more traffic to my site, per day, than ever before. Which is not to say that this is the mark of success -- but rather if more people are reading Crip Chronicles, they are also reading other blogs about disabilities.

If you haven't checked it out yet, or like me, want to browse the crip blogs a few at a time, the link is http://blobolobolob.blogspot.com/2006/05/blogging-against-disablism-day.html. I haven't read them all yet; it is a question of time, and also, I think, o.d.ing on reading about all the shit the crips of the world still have to juggle, shovel and stow.

How Disabled Are You? Is That Your Final Answer?

After a conversation the other evening with a friend who is exploring his options in terms of asking for accommodations at work, working until age 65, SSDI and other permutations of life, I was reminded of the often experienced mixed societal messages you get if you have a severe disability: sometimes you have to prove that you're sooooooooooooo disabled, and other times, it's, "Oh, the power wheelchair? I was just feeling a little tired today..."

The Essentials

If you are disabled and are working or want to work, as a threshold matter you've got to show that you're "otherwise qualified". This means that you meet whatever the pre-determined set of criteria is for the job, and that you are able to do the "essential functions" of the job. It is up to the employer to determine what the essential functions of the job are. This is why more and more official job postings of essential tasks will include minutiae such as "must occasionally be able to lift up to 50 lb", "this job is sedentary; must be able to sit for 6-8 hours a day", etc.

In an utopian world where we could be sure that such "occasional" lifting of 50 lbs. wasn't put in the job description to exclude anyone with a severe physical disability, we could interpret this careful sifting of job tasks as a thoughtful employer informing potential applicants of all of the tasks that might arise...

In the real world, if you're hired for an office job, unless you're in charge of moving around and installing computer equipment, nobody is going to make you lift 50 lbs. Elmer Employee says, "sorry guys, I've got a bad back," and somebody else gets the move the supplies around assignment.

But, if you show up to the interview on crutches or in a wheelchair, and they've got the lifting requirement down already in the "essential functions", then they have an easy way to exclude you from the job without getting busted for discrimination. And, if you don't think this is happening every day... Well, let me know what meds you're taking.

Hidden Disability? Don't Ask, Don't Tell!

The question I get asked most often by people with hidden disabilities is whether or not they should tell any prospective employers about their disability. First of all, I say, you have no legal obligation to disclose a disability, unless and until you need to ask for an accommodation at work. Secondly, if you know you will need an accommodation/s if you get the job, don't disclose and don't ask for them until you have a firm job offer, preferably in writing. The reason for this second rule of thumb is simple -- they can't discriminate against you because you have a disability if they don't know you have one.

Some young people, who may not have ever been looking seriously for a job before, raise a question of whether or not this is dishonest. My question to them is, "do you honestly believe you can do the job?" If the answer is yes, then I don't think one is any more obligated to disclose a disability than you are your marital status or religion -- another 2 things a prospective employer can't ask you.

I Use a Wheelchair, But I Can Juggle...

So you're trying to get or keep a job and you are mitigating your visible disability like mad. Unless and until an issue arises that calls into question your ability to do the job, even if you use a wheelchair they shouldn't be asking you about your disability. If you are blind, for example, and the job involves using a computer, an interviewer may ask you how you will perform the essential functions of the job. This is your opportunity to describe your use of various assistive technology, including software such as screen readers and voice recognition software. Even though it is legally your employer's responsibility to accommodate your disability, if you can't tell them the accommodations you will need at this stage of the interview, you will most likely be dead in the water.

If you do need to request an accommodation, you will need to submit your medical documentation of your disability. The letter should give your diagnosis and then describe any functional limitations you might have, and how they might be accommodated. Be prepared to submit this letter even if you're dealing with a supervisor or an employer who seems to be nice and doesn't seem to have any kind of official process.

Quite often, the employee is put in an untenable position when dealing with the "nice" boss, because they may get offended if you try to be really businesslike about the process. However, if nothing is in writing anywhere, that nice boss can turn on a dime and say you are performing your job inadequately later. Yes, this has happened to me, and it was the worst year of my entire working life.

In addition, you might have the idea that employers who work in disability services, human services or medical services would be better about disability accommodations and about discrimination in general. You would be dead wrong. If you doubt me, ask yourself how many medical offices, doctor's offices you've been to that were less than optimally accessible. [FYI, doctors' and dentists' offices are considered "public accommodations" under the Americans With Disabilities Act, and thus are required to be accessible.]

You Become More Disabled

So you've managed to negotiate the shark infested waters, and you've gotten a job, and kept it for a while -- maybe a long while. Except that now, you, like many of us with severe disabilities, are becoming more disabled with age, or with progression of your condition.

As discussed in a prior posting, it is disadvantageous to you, in terms of how your benefits are calculated, to gradually phase yourself out of working. This is because most types of benefits are calculated on the most recent quarters worked; if you decrease your income in order to work longer, part-time, your most recent quarters may well be significantly lower than your pre-phase out income.

If you're applying for a disability retirement, SSDI and the like, you now have to prove the opposite case to the one that got you the job. You have to show that you're sooooooooooooooo disabled you can't possibly hold down any job at all. Also, the more education you have, the harder this may be to do. Because Social Security especially wants to know if you can do any job, not just the one you've been doing.

If you have a disability that is on Social Security's lists, such as multiple sclerosis or rheumatoid arthritis, it might be easier to make your case. Think of these lists as disabilities that they have vetted and found to be scientifically proven.

Prepare yourself for a drawn out process and multiple appeals. This may or may not happen to you, but chances are it won't be easy. You should also be as sure as is humanly possible on what you want -- i.e., to not work, to work full-time, to work part-time. Consider all of the issues, particularly quality of life, how much income you need, and whether you will have health care coverage of some kind, regardless of what choice you make.

In Sum...

Arguably, the civil rights laws of the last 30 years that have attempted to open up access to people with disabilities to all aspects of society -- education and employment most importantly -- have worked to a limited extent. However, the stigma and discriminatory behaviors of employers and bureauacracies are alive and well.

The civil rights movement for people with disabilities is, I believe, where the racial civil rights movement was in the 1950s and '60s. We have a very long way to go.

Crip Bloggers Unite!

On Monday, May 1st, an international group of bloggers with disabilities are going to all post blogs against what the organizer, "Goldfish", calls "disablism". Goldfish is in the UK; I think we, in the US, lean toward "ablism" as a term to describe discrimination against people with disabilities. Terminology isn't is as important as the idea.

I think this is a cool idea. Similar efforts by columnists and cartoonists against various social ills have been quite successful. If you go to Blogging Against Disablism Day you'll see a list of over 100 bloggers who've signed up to participate, including yours truly.

I can't vouch for the writing of all the participants, but the few I've checked out are worth a gander.

Crip Film Festival

If you are geographically convenient to Berkeley, CA, you might want to check out Superfest, on June 3rd and 4th. Read more about it at http://www.culturedisabilitytalent.org/superfest/index.html

Moloka'i: Disability History in Microcosm?

I just wrote a review of a book called Moloka'i, which you can find at my Historical Fiction - Reviews blog, http://teribookchat.blogspot.com. If you read the review, you'll probably notice that I don't say that much about the book, but do spend a lot of time talking about my interest in leprosy -- now called Hansen's Disease.

While writing the review, I began to realize a lot of different thoughts were resonating about the novel, and its historically accurate (for the most part, I believe) depiction of the treatment of persons with Hansen's Disease from the 1890's into the 1960's. What struck me is that how the attitudes of the public and the public health officials evolved over time is in keeping with the overall evolution of society's attitudes toward people with disabilities in general.

The Moral Model of Disability

[I should say here, for those readers unfamiliar with the study of the history of persons with disabilities, these "models" of disability are not my idea or creation, but are the work of historians such as Paul Longmore, Ph.D. I summarize them here, however briefly.]

The "moral model" essentially captures and describes that period of time (which some might say we've never entirely left) in which disabilities were seen as a punishment from God for the evils or misdeeds of either the person who had the disability, or the family into which such a person was born.

Corollaries of this would be merely that the person in the family with a disability was an object of shame for the family and was to be hidden away and not mentioned. The degree of "badness" associated with the incidence of disability depends on the culture, the predominant religion, and the era.

Followed by...The Medical Model

Under the medical model, people with disabilities weren't necessarily embodiments of evil in the world, but more akin to broken toys -- mechanical problems with medical solutions. Here, a person with a disability isn't really treated as a person in a holistic sense -- rather they are a problem to be solved.

One cultural phenomenon that seems to go along with the medical model is eugenics, including involuntary sterilizations. Nazi Germany has a well researched history of this, followed quickly by "euthanasia" and extermination. In By Trust Betrayed, Hugh Gallagher discusses the fact that people with disabilities were among the first to be exterminated in a systematic way in Germany under Hitler.




Born in 1957, I believe I arrived during the "medical model" period. Doctors did not know what to do with me; they couldn't fix me, they couldn't really treat my skin condition except to try to make it look more "normal" -- which is impossible. They focused on pseudo-normality -- it is better to walk in pain and with difficulty than to use a wheelchair, for example. Many of the extremely time-intensive cosmetic treatments, which I rejected pretty early on, made my skin look different, but not normal. In addition to taking up 4-6 hours a day, the treatments if performed as prescribed made my skin so delicate and sensitive that most activities -- dressing, getting in a car, playing -- resulted in injury.

But the focus was on fixing the broken toy -- me -- not figuring out how to get the most function and the most life out of what was working.

This experience is not by any stretch, unique to me. I saw children with cerebral palsy struggle to walk with heavy braces and crutches, only to be given wheelchairs in their early 20's. I had a good friend in special ed who had lost her legs in a house fire. She completely rejected her prosthesis, and used a wheelchair instead, and scooted along the ground on her hands much faster than I could walk.

And Now...The "Cultural Model" or "Civil Rights Model"

Today, we have supposedly evolved past the moral and medical models of disability, and are into the era of the cultural or civil rights model of disability. I don't know that there is universal agreement about how to define the era we presently inhabit.

I reject the moniker of "cultural" model as being unworkable. The non-disabled public does not embrace disability culture as another culture to be recognized, like African or Hispanic culture.

The hallmarks of disability culture that are alive and flourishing, I think, are to be found on the Discovery Health Channel -- or the Freak Channel, as I call it. Shows like "Medical Incredible" and "Diagnosis Unknown" almost invariably feature people with disabilities that have an element to them that makes the person look freakish. [Dictionary.com defines freak as "a person or animal that is markedly unusual or deformed" -- I'm not just using the word "freak" to be inflammatory.]

Further, if a subject of one of these shows is a person with a marked and noticeable disability who is thriving, successful, etc., they are portrayed as a hero. I postulate that it should not be a mark of heroism to adapt to one's circumstances and get on with life. This thought can be modified, however, in light of the additional obstacles that society throws up in the way of that disabled person who is merely trying to keep on keepin' on. That, I think, takes an extra measure of guts sometimes.

I'll Take The Civil Rights Model

Born in the 1970's, with the Independent Living Movement, the Education for All Handicapped Children Act and Section 504 of the Rehabilitation Act of 1973, all the way to the coming of age in 1990 with the Americans With Disabilities Act, American society is saying that persons with disabilities are entitled to the same civil rights as citizens who are not [presently] disabled.

What flows from that are job opportunities, equal public education and accessible public transit. The reality is that we are still in our infancy, crawling toward these goals. The "Disability Rights Movement" is, in my opinion, where the "Civil Rights Movement" was in the early 1960's. And no one is saying those goals have been comfortably achieved.

Meanwhile, Back on Moloka'i

My point was -- starting in the mid 1800's, people who were diagnosed with leprosy were exiled to Moloka'i. Sometimes they just threw them in the water in sight of shore and the lucky ones swam in without getting attacked by sharks. When Father Damian went there in the 1870's, there was nothing but the barest shelter; families would bring rudimentary supplies and leave them at the beach.

By the time the novel opens, there is a hospital and a nascent public health system. The shame and terror of having a family member sent to Moloka'i were in full force.

Even after the development of drugs stopped the progression of the disease, as well as ceased it from being actively contagious, people with Hansen's Disease were shunned and isolated, and quarantined.

For many, by the time the quarantine was lifted, many residents chose to stay on Moloka'i. Today, as few as 50 remain.

Railroaded, an epilogue

Here's an amusing epilogue to "Railroaded" (http://teriadams.blogspot.com/2006/01/railroaded.html)

I had copied my letter to several local consumer reporters in the faint hope that one of them would take an interest in disability access on our commuter train system.

Today, I was chagrined to find a return letter in my p.o. box, which I clearly do not check as often as I should -- the letter was dated 2/16/06. "Swell," I thought, "I got some interest, and I didn't have the wit to check my mail box and follow up."

Alas, I needn't have worried. Here is the text of the response, in it's entirety, with no intentional edits on my part. It is from Michael Finney, from KGO TV, our local ABC affiliate.

"Dear Teri:

Thank you for contacting 7 On Your Side. Because of the nature of our segment, we rely heavily on input from our viewers and welcome your comments.

Comments and suggestions are always appreciated and forwarded to our research team. Contributions from our audience helps 7 On Your Side produce informative consumer reports for the entire Bay Area.

We appreciate your interest in 7 On Your Side and thank you for watching ABC-7 News.

Sincerely,

Michael Finney
7 On Your Side"


Makes me wish the Magnificent Seven was "on my side." 'Cause this ain't them.

UN Convention on the Rights of Persons with Disabilities

I found this petition on the website of "ConventionYes!":

Petition

I support the full and universal recognition of the human rights of people with disabilities under national and international law.

I am concerned about the current track record of abuses against people with disabilities in all parts of the world. I am alarmed by forced institutionalization and troubled by the lack of international standards for inclusion in voting, housing, education, transportation, emergency assistance and other sectors.

I support current efforts to create a UN treaty, called a Convention, to protect the human rights of people with disabilities.

I believe it is important that all nations support the UN convention process, sign and ratify the resulting treaty and fully comply with all international standards protecting the rights of people with disabilities.

I urge decision-makers at all national and international levels to support the UN Convention process.

You can support this effort by signing the petition at http://www.conventionyes.org/content.cfm?id=585C76

Putting a Human Face on the Health Care Issue

I ran across this website today http://www.joonpowell.info/tenncare.html.

I bring it to your attention NOT because I have any comment on the health care crisis in Tennessee -- I have not made a study of the issues involved.

Rather I think these photos and their captions are a stark reminder of the fact that real people are harmed every day by a lack of access to health care.

Additionally, it seems self evident that the group that is harmed the most often and the most severely by lack of access to health care are those citizens with disabilities.

Sage Words from One of My Heroes

Vindication -- It's Not Just for Breakfast Anymore

I am sure that it is a common emotion among people from marginalized groups, this feeling of elation and pride, when one of us says or does all the right things and actually has something of an audience for it. I always feel this when I hear about a speech given by Judy Heumann.

Judy Heumann is (I'm guessing) about ten years older than I am, and thus went through many of the same experiences -- special ed in a segregated system being chief among them. She is also one of the leaders and founders of the Independent Living Movement, along with the late Ed Roberts.

I found the article below at ADA Watch, at http://www.adawatch.org/JudyHeumannPA.htm.

I don't have many people I would categorize as heroes, but Judy Heumann is definitely one.

I would also like to add that Ms. Strohm, who wrote this article for the Univ. of Pennsylvania News did a terrific job of conveying concepts that are difficult for many people, including well-intentioned liberals, to get their heads around.

Change Needed in Attitude Toward People with Disabilities
By J. Elizabeth Strohm
University of Pennsylvania News

Judith Heumann used to be classified as a fire hazard.

“I learned that discrimination was unfortunately a natural part of life in the United States and, as I would learn later, in the world,” Heumann said. Heumann, who has been disabled since she contracted polio in 1949, visited Pitt yesterday as the 2006 keynote speaker for the Thornburgh family lecture series on disability law and policy. Her speech attracted an audience of more than 150 people, a disproportionate number of them with disabilities, to the Barco Law Building’s Teplitz Courtroom.

Heumann, who serves as the World Bank’s first adviser on disability and development, discussed her own history battling barriers faced by disabled people, as well as the development of disability laws in the United States and the future of disability issues in the nation and the world.

There are 54 million people with disabilities in the United States and half a billion in the world, according to Chancellor Mark Nordenberg, who joined former Pennsylvania Governor and U.S. Attorney General Dick Thornburgh in introducing the topic and speaker. “Eliminating obstacles ought to be a national and international priority,” Nordenberg said.

Pity, fear and lack of knowledge create barriers for people with disabilities, Heumann said. “The physical barriers may be coming down, but attitudes change very slowly,” she said, explaining that attitudes and acts of discrimination are the biggest problems facing people with disabilities. Heumann said that no amount of money could remove the obstacles created by biases.

Early experiences provided Heumann with powerful lessons about many people’s attitudes toward disabilities. She was denied admission to school because she could not climb the building’s steps, even though her mother offered to assist her each day. Public facilities were not accessible for people with disabilities when Heumann was young, and although many organizations sponsored research toward cures for disabling diseases, few fought to remove barriers — and few thought to include people with disabilities in waging the fight, she said.

One group that did manage to find a voice early on was composed of disabled World War II veterans. Their efforts brought about the first state legislation to make new buildings and sidewalks accessible to people with disabilities. Heumann began taking major steps toward rights for people with disabilities in college; she organized rallies and protests with other students with disabilities.

When Heumann got out of school and was denied her New York teaching license because the board did not believe she could get herself or her students out of the building in case of a fire, she took the case to court. After the judge suggested that New York City’s Board of Education rethink its decision, Heumann became the first person in a wheelchair to teach in New York City.

On her first trip out of the United States, Heumann attended the Paralympic Games as a spectator in Heidelberg, Germany. Meeting people with disabilities from other countries for the first time, Heumann said she realized that people in every country had to deal with many of the same challenges. “It was very exciting to see how our visions were the same,” she said, adding that people from wealthier nations had better technology and opportunities but that “we all faced the same barriers.”

At her current position, Heumann works to introduce disability issues into the World Bank’s many international programs. “Disability has to be part of every development discussion,” Heumann said. For example, less than 10 percent of disabled children around the world attend school, Heumann said. “Too many people in the United States remain uninformed about the problems and challenges faced by the more than 400 million people with disabilities living in developing countries,” she added.

Heumann emphasized the importance of applying a “disability lens” to every situation, so that everyone might better understand the challenges faced by people with disabilities. “We’re integrating disabled people into the fabric of everything that’s happening,” Heumann said.

Heumann described disabilities as a factor to incorporate into decisions, and not as a problem to solve. “Many of the institutions really think about disabilities as something that will someday no longer exist,” Heumann said “We don’t see disability as a tragedy,” she said, describing it instead as simply “something that will always exist, at least in our lifetime.”

Universal Design at the Pump

I don’t drive my ’94 mini-van very much. Partly because it has 152,000 miles on it and I’m trying to keep it going for another year or two. Partly because the wheelchair lift on it is cumbersome and awkward to use, and so I just take my power wheelchair and public transit whenever possible.

A couple of weeks ago, I decided to drive in to work because it was raining, and using the lift wasn’t as onerous as getting rain blown in my face at the train station. My car was on empty, and I went to a nearby Shell station, because the prices were actually the lowest in my neighborhood. That was my first surprise.

The second surprise came when I got out of the car.

Aesthetically Pleasing Combo of Retro and High Tech

I noticed, when I pulled in the station, that it had been redone, like most of the Shell stations in the area, with the rounded corners and edges that I think of as “retro” – similar to the “dinerfication” of Denny’s.

When I got out of the car and went around to the pump and my tank, I noticed that the display, buttons, credit card processing slider, and keypad were all lowered. Because I’m only 5”2’, this meant that I didn’t have to stretch or fumble to reach everything I needed.

I then realized that if I had to, I could use this pump from my wheelchair. At this, I was thunderstruck.

The Next Step in Equal Access

In California, if you have a state issued “handicapped” placard, which gives you license to park in the recognized blue spaces in parking lots and on some city streets, the placard is also supposed to trigger minimal services at a primarily self-serve gas station. If there are an adequate number of people on duty, they are supposed to come and pump your gas for you if you have a placard, at self-serve prices.

Getting the attention of the gas station attendant, who doesn’t have to pump much gas, can be a challenge. Also, the training they receive in this area seems to vary widely, and you can never be certain that they will respond to one’s waving of the placard from the driver’s seat.

A newer development I’ve noticed is that some stations have a button (with the blue and white wheelchair man logo on it) that you can push to summon the attendant. (Of course, you have to get out of the car to push the button, and by then you are standing at the pump… So, I usually just do it myself, unless my feet are absolutely killing me.)

On the island of 2 pumps I was parked next to at this Shell station, there was one of those little blue buttons to push, as well as the redesigned pumps.

No Explanation

I looked at several Shell websites for any mention of the redesigned pumps – nothing.

But I can tell you that the Universal Design fairy had been there.

What is Universal Design?

Briefly, the idea of Universal Design is that if you design products so that people with disabilities can more easily use them, they will be more easily useable by everyone. A perfect example of a company whose products exemplify Universal Design is Oxo, which makes all of those “Good Grips” kitchen gadgets.

I recently saw a short TV story on Oxo, in which a designer said that he had designed a non-slipping mixing bowl (the bowl has a rubber bottom so that it won’t slip on the counter) so that his grandmother could continue to make cookies, even though she was 94 and becoming a little disabled.

Another easily recognizable Universal Design feature of the “built environment” are those curb cuts at corners. They not only serve people like me who use wheelchairs, but they also ease the way for women with strollers, people pulling/pushing wheeled luggage, and delivery people everywhere.

Back to the Pump

The lowered controls at the pump enable macho guys who use chairs to get out, get their wheelchair, and pump their own gas. They also enable older women with osteoporosis to better reach all of the buttons.

The only disability-usability difficulties that remain are these:

1) The credit card slider is one of those where you have to completely insert the card and then remove it “quickly”. If you have arthritis or another type of disability that affects your grip strength, that type of slider can be problematic. Sometimes the card slides out easily, and sometimes you really have to have a grip on it to pull it back out. I much prefer the type of card reader that you just slide the magnetic strip through on one side of the card.

2) In California, we have these accordioned nozzle covers at the tip of the nozzle to reduce emissions. I don’t know if they actually do any good, but they do make it harder to get the nozzle positioned in the tank to start refueling.

The Consumer Votes with Their Wallet

Even though I have not be a fan of Shell (or for any oil company, for that matter) for many a year, I have to say that I will think twice the next time I need to buy gas. When I have to buy gas, I’d rather pay for it (and pump it) at an accessible station.

Are you Ready for Your Close-up?

You Oughta Be in Pictures

Go to http://www.michaelmoore.com/words/message/index.php?id=193 to read about Michael Moore's (Fahrenheit 9/11, Bowling for Columbine) next project. He is planning a major expose of the healthcare industry, and he is looking for people to send him "horror" stories of their experiences that he might feature in the movie.

At the moment, I'm not planning on sending Moore any stories, because I think my complaints about the treatment I've received go way beyond the issue of HMOs vs. nationalized health care vs. private insurance, the good or evil that flows from each.

Inadequate Training and Imagination

My problems with the medical treatment I receive stem from the fact that doctor's are not trained in how to deal with and serve patients who have chronic disabilities that they cannot cure. I have a very visible genetic skin disorder for which there are only cosmetic treatments. Unfortunately, the cosmetic treatments make practical functioning worse -- my skin might look a little better (though hardly "normal"), but it becomes so sensitive that I can be injured by the slightest bump or abrasion.

Even today, my current dermatologist's kneejerk response to my discomfort is hydrotherapy -- even though I have learned and explained to him that 1) because my skin doesn't dry out easily from getting wet, water exacerbates odor, and makes me more prone to infections; 2) water makes me "mushy"; 3) removing callouses from my feet actually makes me more prone to blistering.

My disability's diagnosis is epidermolytic hyperkeratosis (EHK). A couple of years ago, a close friend of mine happened to meet a doctor in Ireland who was in charge of a clinic which provides services to people with EHK and similar "ichthyotic" skin conditions. This doctor coordinates a total healthcare services plan for these clients, which includes appropriate mobility assistance, pain control, infection control, and even dentistry with sensitivity to the fact that the skin around the mouth cracks easily when you "open wide".

My friend commented that she had a good friend (me) in the US with EHK, and that I was not particularly happy with the care I'd received. The Irish doctor said that his impression was that while US research in genetic skin disorders was good, the clinical services were not.

When my friend told me this story, I had two immediate reactions. One was -- how do I move to Ireland? Secondarily, I felt extremely vindicated that a doctor from another country, whom I'd never met, had come to the same conclusions I had.

Extrapolation

I think that the inadequacies of my medical treatment are experienced by many people with chronic, currently incurable disabilities. I also think that this occurs for the same reasons as I have experienced them -- doctors are trained to focus on making people as close to "normal" as possible, often to the detriment of comfort or function.

Doctors need to learn to partner with the patient who has a long-term disability, and to discuss each patient's priorities, such as appearance vs. functionality. This is a training and attitudinal issue, not a "healthcare system" issue.

Division of Labor

Michael Moore can take on the Healthcare System. I am going to keep tackling the Attitude Issue.

Railroaded, addendum

I received this comment on my "Railroaded" entry:

"...As a regular rider, I think Caltrain has been improving the ADA accessibility. I'm thinking it's just a one time deal. Heck, I've seen the conductor and engineer make sure everything is going to be 'just' right for PNA passengers..."

Not to be cranky, but this makes my neck hurt. It sounds like a pwd (person with a disability) who is grateful for whatever access they get.

I don't think I am a radical. I am all too aware that the fact that Caltrain still exists at all in its current form, and hasn't been replaced by the completely accessible BART and/or VTA (light rail systems that cover the Bay Area, but do not meet strategically, as one would hope) is political and financial.

Caltrain is sharing the rails with freight trains that need specifications that are sometimes in direct opposition to accessible platforms and cars for the passenger trains.

I have the delusion that it is my civil right to have equal access to public transit. That I should be able to enter and exit the train or light rail independently. That I shouldn't have to count on a special car, good hearted employees or special equipment to get to where I want to go.

As it is, people with disabilities are the only "protected class" who still have literal and figurative access issues with transit. Ethnic minorities, persons with alternate gender identities and/or sexual preferences, women, and all religious orientations are able to seamlessly board any damn public transit vehicle they want -- and it would be front page news if such were denied them, on the basis of their membership in that "protected class".

We're fifteen years out from the ADA, are we not? Transit authorities of various stripes (trains, planes, buses) have all been given generous extensions of time to get their equipment upgraded. Under the current political clime, I'm certain that disability access is looked upon as a distasteful waste of public funds.

It (the lack of equal access) is discriminatory and marginalizing. Period.

When he was involved in the Brown vs. Board of Education segregation case, Justice Frankfurter asked Thurgood Marshall his definition of "equal" he said, "Equal means getting the same thing, at the same time and in the same place."

That's all I'm asking for.

Railroaded

(the following is a letter which I am mailing today to my local commuter train official)

January 26, 2006


Bill Welch
Manager, Accessible Transit Services
Peninsula Corridor
Joint Powers Board
1250 San Carlos Avenue
P O Box 3006
San Carlos, CA 94070-1306

Dear Mr. Welch:

My last correspondence with you was December 3, 2004, in which you addressed issues I had brought to your attention regarding my experiences riding Caltrain, including the maximum 2 wheelchairs per train rule. At the conclusion of that letter, you offered to meet with me, at my request, should I have additional issues to discuss.

At this time, I am writing to document my most recent negative experience, and to request that meeting. Before I describe the events of January 24th, I would like to make a couple of general remarks.

Not Being Let off the Train at My Stop

For the record, since I started riding the train in April of 2004, I have been forgotten by the conductor and kept on the train past my stop for a total of 4 times. Three of these times were by the same conductor, once by another.

In each case, I had informed the conductor of my destination. I want to be clear that I do not attribute any malice to these occurrences. Rather I raise it as an issue because there was no way for me to alert the conductor/remind him at my station, when he was not present. This is something you should definitely consider when you review procedures, and also when you buy new car equipment.

Good Customer Service

Without exception, since I wrote last, all of the conductors have been courteous and appropriate.

No PNA Car [PNA="person needs assistance" which is how the conductors refer to passengers in wheelchairs]

This brings me to the incident of January 24, 2006.

I wanted to go Northbound from the Palo Alto Station to Hillsdale. I was at the station in plenty of time for the 6:24pm train, train 281.

When the train arrived, Manny, the conductor, came to me on the platform and told me that the train had been “sent out without a PNA car”. This meant, to me, that he didn’t have a car with a lift, nor with a place for me to park my wheelchair. I asked him if the crank lift would work, but he said he would only be able to put me in the bike car, and he was worried about my safety there. I consciously decided not to push the issue, primarily because I knew there would be another train in a ½ hour.

Mr. Welch, I want to be very, very clear with you. In your 4 page letter of December 3, 2004, you gave many, many reasons for all of the practical and legal reasons that it is excusable for Caltrain to give unequal treatment and service to persons who use wheelchairs on the train. While I understand your motivation in taking refuge in these arguments, at bottom I believe them to be specious and hollow.

The bottom line, when you cut away all of the rhetoric is that I do not receive equal services by a public transit agency because I am a member of a minority group, a person with a disability who uses a wheelchair. I pay taxes, I work full-time – I am not, figuratively or literally, looking for a free ride. I am, however, looking for an equal opportunity to utilize public transit.

Sending a train out without a car that can accommodate wheelchairs and not having a contingency plan, i.e., “if you get a wheelchair passenger, put them in the bike car, and put them in this location”, is discriminatory on its face and violates my civil rights.

I am copying several consumer reporters on this letter in the hope that they will draw public attention to this matter.

Ironic Twist to the Story

The incident on January 24th involving the lack of the PNA car followed by one day on the heels of another Caltrain day for me.

In winter of last year, I was a witness to an incident in which another Caltrain passenger threatened a conductor in my presence. This case came to trial on January 23rd, 2005 and I was subpoenaed to be a witness. The courthouse was the one located at 270 Grant Ave., in Palo Alto. The closest train station to the courthouse is the one at California Ave., but I couldn’t use it because that station is inaccessible.

So, I took an afternoon off work to get there, and was ready to testify; the defendant pled to a lesser charge at the last minute, so I didn’t ultimately testify. However, it was a good portion of a day spent in the service of Caltrain with no personal gain whatsoever, and a good deal of inconvenience to me. (The courthouse itself is not a model of accessibility, but that is another tale.)

In Sum

If you think it would accomplish anything for you and me to meet, I am willing to do so. However, if you have no tangible changes in Caltrain procedure to offer, then it would be a waste of time on both our parts to rehash old excuses for the times Caltrain has violated my civil rights in the last 18 months.

Again, let me be clear. I am not just talking about legal regulations pertaining very specifically to the rail industry, and the timelines that have been ever extended in that regard. I am talking about clear discrimination from equal access to public services on the basis of being a member of a class which is protected, that of persons with disabilities. I don’t think this would be a very difficult issue for a jury to understand.

Whether you think about it in this way or not, when I hear “we don’t have a PNA car” or “we already have 2 wheelchairs”, it has the same effect on me as I imagine it would on an Asian person told, “I’m sorry, we don’t have any Asian seats on this train. You’ll have to wait for the next one.” It is discrimination against an entire class of people because of a personal characteristic.

Sincerely,



Teri A. Adams, J.D.

P.S. In the interest of sensitivity to M.S., your assistant, and the fact that I am also going to publish this letter in my blog, I will not use his name here. However, I beseech you not to have him respond to this letter in anyway. I find him to be mealy-mouthed, insincere apologist and clueless when it comes to disability-related issues. His blanket response to all issues seems to be a free train pass. Considering the fact that I have an annual pass from my employer, this is coals to Newcastle – and if I can’t get on the train (or get off at my stop) then the price of admission is hardly the point.