Blogging Against Disablism II

There's to be a second annual Blogging Against Disablism Day on May 1st. To participate or just get details, click on the pic:

Too Many Thoughts For Just One Blog

Mapping a Path Through the Nuances of Disability "Culture"

A close friend brought Lisa Ferris's Twinkle Little Star blog to my attention; in particular, this post, Lost in Disabilitakinstan.

It is literate, insightful and a dense commentary on multiple issues around the idea of the difference between the "non-disabled" world's cultural norms versus those of the disability community. It is so well thought out that I am thinking of taking bits and pieces (with atribution, of course) and then adding my two cents.

Be warned, Lisa doesn't break up her paragraphs often, and there is enough there for a long magazine piece; it is worth reading in its entirety.

Brava!

Push for Equal Access to Technology

Interesting coalition of organizations (Coalition of Organizations for Accessible Technology Launched For Full Disability Access in the 21st Century) pushing an agenda of increased attention to access for persons with disabilities in the technological realm:

See the original press release at: http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/03-13-2007/0004545409&EDATE=

"WASHINGTON, March 13 /PRNewswire-USNewswire/ -- Get your COAT! Today, a new coalition of disability organizations was launched to advocate for legislative and regulatory safeguards that will ensure full access by people with disabilities to evolving high speed broadband, wireless and other Internet protocol (IP) technologies. The Coalition of Organizations for Accessible Technology, or "COAT," consists of over 45 national, regional, and community-based organizations dedicated to making sure that as our nation migrates from legacy public switched-based telecommunications to more versatile and innovative IP-based and other communication technologies, people with disabilities will not be left behind.
Emerging digital and Internet-based technologies can provide peoplewith disabilities with new opportunities for greater independence, integration, and privacy, but only if these are designed to be accessible. The guiding principle of this Coalition will be to ensure the full inclusion of people with disabilities in all aspects of daily living through accessible, affordable and usable communication technologies as these continue to evolve. To this end, and in order to achieve equal access in the 21st century, COAT has identified the following initial broad objectives:

* Extend current disability protections under Sections 255 and 710 of the Communications Act to IP technologies with improved accountability and enforcement measures, to ensure more accessibility, usability and interoperability for all persons with disabilities, including persons who are aging.

* Expand the scope of devices that must transmit and display closed captions under the Decoder Circuitry Act from the present requirement of television sets with screens that are 13 inches or larger to video devices of all sizes, including recording and playback devices, that are designed to receive or display digital and Internet programming.

* Apply existing captioning obligations under Section 713 of the Communications Act to IPTV and other types of multi-channel video programming services that are commercially distributed over the Internet.

* Restore the video description rules originally promulgated by the FCC in 2000 (overturned by the U.S. Court of Appeals for the D.C. Circuit) and ensure that this access continues in the transition to digital television programming.

* Extend existing relay service obligations under Section 225 of the Communications Act to VoIP providers (i.e., extend the obligation to contribute to the interstate relay fund that supports these services), including obligations for greater outreach to consumers.

* Require accessible interfaces on video programming and playback devices, such as televisions, VCRs, and DVD players.

* Ensure that people with disabilities have equivalent access to emergency information through identification of barriers and implementation of solutions in current and new technologies, including solutions for achieving access by people with disabilities to 911 emergency PSAPs through the receipt of text and video.

* Ensure universal service fund availability for persons with disabilities (e.g., Lifeline/Link-up programs), to increase the number of people with disabilities as broadband users.

The above objectives were recommended in a report released by theNational Council on Disability: The Need for Federal Legislation andRegulation Prohibiting Telecommunications and Information ServicesDiscrimination, available at http://www.ncd.gov/newsroom/publications/2006/discrimination.htm (releasedDecember 16, 2007).

COAT MEMBERS* National organizations:

1. Alexander Graham Bell Association for the Deaf and Hard of Hearing
2. Alliance for Technology Access
3. American Association of People with Disabilities
4. American Association of the Deaf-Blind
5. American Council of the Blind
6. American Deafness and Rehabilitation Association
7. American Foundation for the Blind
8. American Society for Deaf Children
9. Assistive Technology Industry Association
10. Association of Assistive Technology Act Programs
11. Association of Late-Deafened Adults
12. Communication Service for the Deaf
13. Conference of Educational Administrators of Schools and Programs for the Deaf
14. Deafness Research Foundation
15. Deaf Seniors of America
16. Gallaudet University
17. Gallaudet University Alumni Association
18. Hearing Loss Association of America
19. Helen Keller National Center
20. Inclusive Technologies
21. International Center for Disability Resources on the Internet
22. National Association for Parents of Children with Visual Impairments
23. National Association of the Deaf
24. National Black Deaf Advocates
25. National Catholic Office of the Deaf
26. National Court Reporters Association
27. National Cued Speech Association
28. Registry of Interpreters for the Deaf
29. Speech Communication Assistance by Telephone, Inc.
30. Telecommunications for the Deaf and Hard of Hearing, Inc.
31. USA Deaf Sports Federation
32. WGBH Media Access Group
33. World Institute on Disability

Regional and Community-Based Organizations:

1. Association of Late Deafened Adults, East Bay - Northern California
2. Center on Deafness - Inland Empire
3. Deaf and Hard of Hearing Service Center, Inc. Fresno
4. Deaf and Hard of Hearing Service Center, Inc. Roanoke, Virginia
5. Deaf Community Services of San Diego, Inc.
6. Deaf Counseling, Advocacy and Referral Agency, San Leandro, CA
7. Greater Los Angeles Agency on Deafness
8. Hearing Loss of Northwest Indiana Support Group for Hoosiers
9. Northern California Center on Deafness
10. North Carolina Governor's Advocacy Council for Persons with Disabilities
11. Northern Virginia Resource Center for Deaf and Hard of Hearing Persons
12. Orange County Deaf Equal Access Foundation
13. Roanoke Valley Club of the Deaf
14. San Diego - Hearing Loss Network
15. Tri-County GLAD

* Members as of March 12, 2007

SOURCE Coalition of Organizations for Accessible Technology

The "Poor Thing" Syndrome

It is no exaggeration to say that I rarely have the thought, "poor thing", in reference to a fellow human being. It is, I think, a descriptor that is (probably) oft and inappropriately applied to moi, by people who don't know me. If anyone who did know me did think of me as a "poor thing", I know that they would never tell me to my face -- not without risking injury.

So, it was with some surprise that I found myself applying this "poor thing" appellation to someone I saw a couple of weeks ago.

Setting the Scene

I was leaving work, still on Ivy West's campus, barrelling out of my building in my power wheelchair, on my way across campus to the train station. Where our building's path intersects with a more general path, I slowed to go around a pedestrian -- and thought, "poor thing".

I have since seen this woman again, which confirmed my thought that she is a fellow Ivy West employee, walking to her car at the end of the day. She and I are of an age -- somewhere between 50 and 60, at a wild ass guess.

She clearly was in discomfort, walking -- my guess is an arthritic hip or knee. Like I said, we're of an age.

But, I thought "poor thing" because she was moving slowly, clearly (to me) in pain. And I, more disabled by pretty much anyone's standards, was happily zipping along, not particularly in pain (I'm never completely discomfort free -- but who is?).

And then I thought,

I wonder if she is thinking the same thing -- i.e., "poor thing", about me.

And Now for Something Completely Different...

Not really.

Just wanted to point my faithful readers to a new blog I'm initiating, The View From Where I Sit -- NEW . I'm just combining a couple of other failed blog attempts to branch out -- a place to write about non-disability issues.

My first entry is a brief book review -- I hope to add more, more consistently.

If only my day job didn't take up so many hours in the day...

I Know The Type

In checking on Charles Dawson's blog (The Meanderings of a Politically Incorrect Crip) today, I followed a provided link to this, Anne by Colin Cameron. Go and read it -- I'll wait.

Like many crips, I suspect, particularly those of us in the biz -- the service provision biz, that is -- I found myself feeling both angry and sick when I read Cameron's piece. We have been on the receiving end of services provided by "Anne" and her ilk; or we have interviewed for jobs with her, or she has been a co-worker.

In fact, it brings to mind a co-worker of a few years ago (a saint in the minds of many), I'll call her Lucy. Lucy had been a Voc. Rehab. Counselor, and a provider of services in the higher ed setting -- where I met her.

One day we were talking with our boss about interviewing candidates for an open position in our office -- a disability services office for students at Ivy West. One of the candidates had disclosed a disability, and Lucy said glibly, "Oh, we don't want anyone with a disability or with kids -- they'll be out sick all the time."

Seriously. Sitting there in my power chair, I just looked at her and looked at my boss, who looked suitably taken aback.

So many people -- I venture to guess far more women than men, but I don't have the numbers to prove it -- just fell into a variety of "helping professions" as the laws started mandating inclusion in education and later, in employment. Sometimes they were an unqualified crip in the right place at the right time. Sometimes they were social workers who wanted to "help the handicapped".

I can't say that they are all terrible, but I can say that 90% do more harm than good, when you add up all of the gains and losses for the "cause" at the end of the day.

Another "saint" I dealt with out of law school, was the Voc. Rehab. counselor -- the only one, apparently -- who handled law school graduates in San Francisco in the '90s. Even though I had graduated from law school, had worked successfully in business for over 10 years, had filled out reams of complex forms in my time, ad nauseam, she wouldn't let me fill out my own federal application forms, nor would she give me access to the names and phone numbers of the supposed leads she had for me.

As it turned out, every single one of the interviews she sent me on were "practice/informative" in nature -- meaning there was no job to be filled. But she didn't tell me that ahead of time.

Ultimately, I found my own job. But, my hatred of that woman is a vivid ugly memory to this day.

I insist on treating the students that I deal with as adults. I "help" by providing information, and advise based upon my own experiences. There are the laws and then there is the real world, and they only bear a tangental relationship to each other.

The don't call me Reality Check Woman for nothing.

Five Things About Me

Charles Dawson (The Meanderings of a Politically Incorrect Crip) sent me a meme recently (actually a while ago), and this is my response. Not being an experienced "meme" user, I'm not passing it on, but I get so much enjoyment from Mr. Dawson's blog, that I answer to express my appreciation:

1. I play World of Warcraft. I am currently a 26th level human mage. I find killing pretend monsters very cathartic.
2. I watch too much television.
3. I have never been out of North America.
4. I love to play bridge, although I haven't played for a few years.
5. I built my first pc (a 286) with a little help from a friend.

So there.

Post Christmas Dickens

A friend sent me this and I just saw it today -- back to work, alas... Another great NYT op-ed article by Harriet McBryde Johnson:

December 25, 2006
Op-Ed Contributor

Alas for Tiny Tim, He Became a Christmas Cliché

By HARRIET McBRYDE JOHNSON
Charleston, S.C.

DECEMBER at the Crippled Children’s School got tedious. Our schedule was packed with holiday parties, some of which made the newspaper. Whether the holiday benefactors were medical students, faculty wives, organized Baptists or Navy men, the drill was the same. We drank their punch, ate their food, acted nice and said thank you, never forgetting that some of these people might be back with serious money. There were some real needs.

Capping off the month was the unvarying Nativity play. We once considered doing the story of Scrooge. But who would be Tiny Tim? In that department, we had an embarrassment of riches: any of us could do his shtick and better. “Alas for Tiny Tim,” Dickens wrote, “he bore a little crutch, and had his limbs supported by an iron frame!”

Alas! A little crutch! An iron frame! In our world, the crutch-and-brace kids were the athletic elite. They picked up the stuff we hard-core crips dropped.

If Tiny Tim got more fuss than he deserved, we didn’t blame Dickens. We figured Tiny Tim had Dickens snowed. He even had his parents snowed. Look at what his father says when his mother asks how Tiny Tim behaved in church:

“As good as gold, and better,” says Bob. “He told me, coming home, that he hoped the people saw him in the church, because he was a cripple, and it might be pleasant to them to remember upon Christmas Day, who made lame beggars walk, and blind men see.”

Tiny Tim knew how to give an audience what it wanted. He was ancestor to all telethon poster children and the perfect model for our holiday-party behavior. He joins in festive singing — plaintively. He cries hurrah — feebly. He says, “God bless us every one!”

Tiny Tim, like some of us, was ostensibly doomed. “A Christmas Carol” teaches that no one, not even a real scrooge like Scrooge, can resist the appeal of an ostensibly doomed child.

People ate it up and still do. As heart-melting poster children come and go, Tiny Tim lives on. When a theater company in my neighborhood recently announced yet another production of “A Christmas Carol,” I decided it was time to reread the story.

I approached the book in the spirit of know-thine-enemy. In fact, I found an awful lot to like. “A Christmas Carol” swings between warm and cold, soft and harsh, sensual and spooky. It panders to our prurient fascination with food. It also gives us dancing, singing, and the giddy exhilaration of sudden redemption.

Those crowd-pleasing trappings I remembered. What surprised me went a bit deeper: the story bristles with condemnation of wealth’s arrogance in the face of poverty. As the tale begins, Scrooge is not merely stingy and mean. He is a Social Darwinist. He believes in workhouses and prisons to meet the needs of the poor and in starvation to reduce the surplus population. While disability may make Tiny Tim’s life precarious, the story hints that privation is what would seal his doom.

As the ghosts show Scrooge the consequences of his actions, they also impeach him with his own philosophy. When Scrooge asks if Tiny Tim will live, the first part of the spirit’s response has become part of popular culture: “I see a ... crutch without an owner, carefully preserved ... if these shadows remain unaltered ....”

But the ghost goes on: “What then? If he be like to die, he had better do it, and decrease the surplus population. ... Will you decide what men shall live, what men shall die? It may be, that in the sight of Heaven, you are more worthless and less fit to live than millions like this poor man’s child. Oh God! to hear the insect on the leaf pronouncing on the too much life among his hungry brothers in the dust!”

The ghost’s point is still worth making in our time, when some of the people who consume most of the world’s resources hold disabled lives cheap and begrudge the “too much” of the poor. Through the ghost, Dickens cries for justice for millions.

But he lets that cry be overshadowed by the sweet melodrama of one ostensibly doomed child. In the end, the story’s overriding directive, cherished in today’s holiday hullabaloo, is to take time off work and celebrate with family, and from our abundance to toss some holiday merriment at the less fortunate.

The genius of most successful propaganda is to know what the audience wants and how far it will go. Perhaps, marked by his own family’s experience of the poorhouse, Dickens hoped Tiny Tim would inveigle holiday benefactors into making feel-good gestures and then returning to address the real needs. Perhaps Dickens hoped charity might prove a catalyst for something beyond charity.

But then and now, the season of giving is about the feel-good gesture. Holding a party at the Crippled Children’s School is so easy, so immediately satisfying. It is much harder, the prospect of reward often so remote, to seek justice for our sisters and brothers in the dust.

Harriet McBryde Johnson is the author of the memoir “Too Late to Die Young” and the novel “Accidents of Nature.”

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.