Crip Chronicles

Sez it All

2009-10-14T20:19:00.000-07:00

New Undersecretary of Education

2009-07-08T16:22:00.000-07:00

I received this press release from AHEAD today, about the confirmation of Martha Kanter as new Undersecretary of Education. As you will see, this is a very positive appointment for the disability community....

"Martha Kanter will be sworn in today as the Undersecretary of Education. Most recently Kanter has served as Chancellor of the Foothill - De Anza Community College District in California. Earlier in her career she directed the disability services office at San Jose City College where she created the school’s first program for students with learning disabilities as the Director of Disability Support Services."

"Kanter holds a bachelor's degree from Brandeis University, a master's in education from Harvard University and a doctorate in organization and leadership from the University of San Francisco. Her doctoral research explored the "Relationship of Demographic, Institutional, and Assessment Factors Affecting Access to Higher Education for Underrepresented Students in the California Community Colleges." "

"A past-president of AHEAD’s Affiliate CAPED, the California Association of Postsecondary Education and Disability, and former member of AHEAD, Kanter is a strong supporter of the use of technology and digital texts. She is well informed about assistive technology and e-text access through her own work and that of her late husband, Carl Brown who directed the High Tech Center Training Unit for the California Community Colleges where he researched and tested new technologies to assist disabled students, and trained faculty and staff in the state's 110 community colleges on using them."

"Kanter will be the first Undersecretary appointed from the ranks of Community College leadership and the first former DSS Director to serve in the top tier at the Department of Education. As Under Secretary of Education she will coordinate policy, programs, and activities related to vocational and adult education, postsecondary education, college aid, and the President’s financial reforms for the Pell Grant program."

"Congratulations Martha Kanter!"

Sign the Petition!

2009-04-06T12:14:00.000-07:00

I got a new email from AHEAD today -- I signed the petition, you should too:

Good morning,

As you may recall from the summary e-mail message we sent you last week, AHEAD is one of the founding organizations who have joined together in the Reading Rights Coalition.

The Reading Rights Coalition is engaged in a campaign to obtain access for the blind and others with print disabilities to e-books available for Amazon’s new Kindle 2 e-book reader. The new reader, which Amazon is working to make fully accessible, has the ability to use text-to-speech to read these e-books aloud; but under pressure from the Authors Guild, Amazon has announced that authors and publishers will be allowed to disable the text-to-speech function. Over 25 organizations have joined to form the Reading Rights Coalition, which has set up an on-line petition to urge the Authors Guild and Amazon to reverse course.

Please visit www.readingrights.org to learn more about the work of the coalition, to read the Open Letter to Authors, and to sign the petition. Additionally, an informational picket will be held in front of the Authors’ Guild, 31 East 32nd Street in Manhattan, tomorrow, April 7th from 12:00 to 2:00 pm.

Signing the petition prior to the end of the day today [4/6/09] will be particularly helpful.

Please note: If you are using screen access technology, the first three fields on the form to sign the petition may not be announced. They are, in order: (1) a drop-down menu from which to select your prefix (Mr., Mrs., etc.); (2) an edit field for your first name, and (3) an edit field for your last name. The rest of the fields should announce themselves as you tab to them.

Thank you for your participation in this important effort!If you have questions about this topic, or the efforts surrounding it, please feel welcome to contact either of us directly.

Mike Shuttic, AHEAD President
m.shuttic@okstate.edu

Jim Marks, AHEAD President-Elect
Jim.marks@umontana.edu

Author's Guild -- Get a Clue

2009-03-30T12:27:00.000-07:00

[If you want to write the Author's Guild and encourage them to rethink their position, their email address is: staff@authorsguild.org]

Below I'm going to post a letter/newsrelease that I got from AHEAD today -- AHEAD is an organization for people who provide services to students at the post-secondary (i.e., college) level.

Through a link on a friend's website, I became aware of the controversy about the e-text to "voice" function of the Kindle 2.0. Just a few points:

This is not a separate recording, folks. This is software "reading" the e-text audibly. For people who are "print impaired" -- whether because of vision impairment, learning disabilities or physical issues holding a book -- this is a huge boon. In fact, I wrote to Amazon when Kindle 1.0 came out, and suggested they add this function for people with disabilities.
Were you aware that currently, print impaired students must buy copies of textbooks, which are then converted into "alternative formats" -- either e-text or braille or mp3s -- with the knowledge of the publishers?
To think of this audio as an audio book is ludicrous. It is all software, it is not nuanced, as an audio book (at least a good one) would be.
Anyone accessing the book this way HAS TO BUY THE BOOK! Hello? Whether you're using the function because your hands are full and you're doing 2 things at once, or because you're blind, the fact that you're listening on the Kindle means YOU BOUGHT THE BOOK.
I understand that authors are concerned that they are not getting the royalties to which they are entitled, but if the guild succeeds in this, it will be a stupid step backwards in access for people with disabilities to print material, and they should be individually and collectively ashamed of themselves.
Did I mention that YOU HAVE TO BUY THE BOOK to use the audio feature?

AHEAD's newsrelease:

You may be familiar with the current topic regarding Amazon, Kindle 2, and the Authors Guild. Amazon produces the Kindle 2, a small portable device that is used to read literary works. It is capable of producing an audio version as well. The Authors Guild, which represents authors, is concerned about use of the audio version as an infringement on copyright. AHEAD has joined a broad group of agencies and organizations in addressing this issue as it is at the core of access to publications/texts. There are (or are planned) a variety of efforts including open letters to authors, opinion letters in newspapers, postings on websites/YouTube, and picketing. As a professional organization, AHEAD’s role is a voice of support of the efforts that help address the issue of universal access. Our focus is on helping to ensure that all individuals have the right and ability to access public works of literature by whatever means available at no additional cost or obstacle.

Following is the first press release from this coalition of organizations of which AHEAD is pleased to be a part.

CONTACT:

Chris Danielsen
Director of Public Relations
National Federation of the Blind
(410) 659-9314, ext. 2330 (410) 262-1281 (Cell)
cdanielsen@nfb.org

Reading Rights Coalition Urges Authors to Allow Everyone Access to E-books
Informational Protest to be Held at Authors Guild Headquarters

New York City (March 30, 2009): The Reading Rights Coalition, which represents people who cannot read print, will protest the threatened removal of the text-to-speech function from e-books for the Amazon Kindle 2 outside the Authors Guild headquarters in New York City at 31 East 32nd Street on April 7, 2009, from noon to 2:00 p.m.

The coalition includes the blind, people with dyslexia, people with learning or processing issues, seniors losing vision, people with spinal cord injuries, people recovering from strokes, and many others for whom the addition of text-to-speech on the Kindle 2 promised for the first time easy, mainstream access to over 245,000 books.

When Amazon released the Kindle 2 electronic book reader on February 9, 2009, the company announced that the device would be able to read e-books aloud using text-to-speech technology. Under pressure from the Authors Guild, Amazon has announced that it will give authors and publishers the ability to disable the text-to-speech function on any or all of their e-books available for the Kindle 2.

Dr. Marc Maurer, President of the National Federation of the Blind, said: “The blind and print-disabled have for years utilized text-to-speech technology to read and access information. As technology advances and more books move from hard-copy print to electronic formats, people with print disabilities have for the first time in history the opportunity to enjoy access to books on an equal basis with those who can read print. Authors and publishers who elect to disable text-to-speech for their e-books on the Kindle 2 prevent people who are blind or have other print disabilities from reading these e-books. This is blatant discrimination and we will not tolerate it.”

Mike Shuttic, president of the Association on Higher Education and Disability (AHEAD), said: “AHEAD envisions educational and societal environments that value disability and embody equality of opportunity. This vision of AHEAD is directly aligned with the efforts of this coalition. Although much rhetoric is made about potential obstacles and problems that exist, the basic goal is clear and simple––access for everyone. And why create something that prevents it?”

Mitch Pomerantz, president of the American Council of the Blind, said: “Removing the text-to-speech features closes the door on an innovative technological solution that would make regular print books available to tens of thousands of individuals who are blind or visually impaired.”

Andrew Imparato, President and Chief Executive Officer for the American Association of People with Disabilities (AAPD), said: “It is outrageous when a technology device shuts out people with all kinds of disabilities. AAPD works to remove barriers to accessibility and usability in technology, and we don’t expect to see people with disabilities singled out by having to pay more for access. New technologies, such as electronic books, should be available to everyone regardless of disability.”

Paul Schroeder, vice president of programs and policy for the American Foundation for the Blind, said: "Those of us with print disabilities have long dreamed of a world in which books and media are available to us at the same time as everyone else. The Kindle 2 offers that possibility for the first time. We hope publishers and authors come to see that text-to-speech is simply an alternative means of access to print."

Dr. Peter Blanck, chairman and university professor at Burton Blatt Institute at Syracuse University, said: “As electronic books become the norm, denying universal access will result in more and more people with disabilities being left out of education, employment, and the societal conversation. We will all suffer from the absence of their participation and contribution to the debates that occupy us as a society.”

George Kerscher of the Digital Accessible Information System (DAISY) Consortium, said: "The DAISY Consortium envisions a world where people with print disabilities have equal access to information and knowledge, without delay or additional expense. Authors and publishers surely must share this vision. Now that the issue of human rights has been explained, and the opportunity for larger sales are known, I urge the Authors Guild to reverse their position on text-to-speech and join us in actively encouraging all publishers and reading technology developers to open the world of reading to everybody. Authors, join us on the picket line."

Steve Jacobs, president of IDEAL Group Inc., said, “Not only is text-to-speech important to people who are blind, it is critical in providing quality educations to millions of young people who rely on text-to-speech to learn effectively. This includes students with autism, learning disabilities, mobility disabilities, and cognitive disabilities that impact their ability to acquire information with their eyes only. I remain hopeful that the talented members of the Authors Guild come to understand the potential negative impact of disabling the text-to-speech function on their e-books and reconsider their position.”

Cynthia D. Waddell, executive director of the International Center for Disability Resources on the Internet (ICDRI), said: “The mission of ICDRI supports the removal of barriers in electronic and information technology and the promotion of equal access. ICDRI welcomes the text-to-speech functionality being offered by the Kindle 2 since it increases mainstream access to books for the first time in history. We question why the Authors Guild demands that it be turned it off since many more books would be sold if text-to-speech was turned back on. Not only does this feature benefit persons with disabilities, but it also helps persons for whom English is not their native language. In an increasingly mobile society, flexibility in access to content improves the quality of life for everyone.”

James Love, director of Knowledge Ecology International, said: “Knowing full well that not everyone can see, the Authors Guild wants the right to be seen, but not heard. By bullying Amazon to change the technology of Kindle 2, the Authors Guild will either deny access to people who are disabled, or make them pay more. By attacking disabled persons in this way, the Authors Guild is attacking everyone who would otherwise benefit from the contributions this community has the potential to offer.”

James H. Wendorf, executive director for the National Center for Learning Disabilities, said: "Access to the written word is the cornerstone of education and democracy. New technologies must serve individuals with disabilities, not impede them. Our homes, schools and ultimately our economy rely on support for the future, not discriminating practices and beliefs from the past.”

While the Kindle 2 is not currently accessible to blind users, Amazon recently announced on its Kindle 2 blog that it is currently at work on making the device’s navigational features accessible to the blind.

The coalition includes: American Association of People with Disabilities, American Council of the Blind, American Foundation for the Blind, Association on Higher Education and Disability, Bazelon Center for Mental Health Law, Burton Blatt Institute, Digital Accessible Information System (DAISY) Consortium, Disability Rights Education and Defense Fund (DREDF), IDEAL Group, Inc., International Center for Disability Resources on the Internet, International Dyslexia Association, International Dyslexia Association––New York Branch, Knowledge Ecology International, Learning Disabilities Association of America, National Center for Learning Disabilities, National Disability Rights Network, National Federation of the Blind, NISH, and the National Spinal Cord Injury Association.

In addition to the April 7 New York City protest, the coalition will participate in the Los Angeles Times Festival of Books on April 25-26.

[If you want to write the Author's Guild and encourage them to rethink their position, their email address is: staff@authorsguild.org]

Scholarship Opportunity

2009-02-26T12:17:00.000-08:00

I just heard about a scholarship opportunity for students still in high school, or those who are college undergraduates, from 1800Wheelchair.com. The 1800Wheelchair scholarship isn't limited to students with mobility impairments, but they say "preference will be given to students with mobility disabilities".

Contrary to popular belief, there aren't a lot of scholarship opportunities for students with disabilities -- you should check it out.

Disability and the Inauguration

2009-01-19T21:50:00.000-08:00

I checked in on a friend's blog today (Becs Again), and found this entry about remembering the fulfill the civil rights of other groups at the inauguration, amidst discussions of "post-racial America": A Soapbox Moment.

Then, I did a Google search, and at a cool blog called Media dis&dat came up with this great post: Wheelchair Users Pre-Test Access for Presidential Inauguration.

I'm taking the day off to watch the inauguration of Barack Obama -- a day that I could only fervently hope for a year ago.

Give One, Get One Program

2008-11-18T12:13:00.000-08:00

I first heard about the One Laptop Per Child "give one, get one" program a few years ago. In a nutshell, founder Nicholas Negroponte's vision is to provide laptop computers to children in the most impoverished countries in the world. The Mission Statement reads: "To create educational opportunities for the world's poorest children by providing each child with a rugged, low-cost, low-power, connected laptop with content and software designed for collaborative, joyful, self-empowered learning. When children have access to this type of tool they get engaged in their own education. They learn, share, create, and collaborate. They become connected to each other, to the world and to a brighter future."

Last night on Charlie Rose, Negroponte said that he thought that the non-profit's ability to produce laptops for under $200 is one of the things that has driven down the price of consumer-oriented smaller laptops, which you can now find for under $500.

Negroponte has recently formed a collaborative relationship with Amazon.com as well. As I understand it, there are 2 options: 1) give one for $199 -- meaning you pay to give one of the specially designed laptops; or 2) "give one, get one" for $399, in which you give one of the laptops and get one to use for yourself. And no, you can't just get one for yourself.

This isn't cheap, but, if you are like me, and thinking about a different approach to Christmas for this year, you might want to check it out...

I Guess I've Been Holding My Breath...

2008-11-05T14:41:00.000-08:00

This morning, Nora Ephron's post at Huffington Post really resonated with me: Exhale.

I had a busy summer, which included a total hip replacement of my left hip (one down, one to go), but have been well enough to write for months. I had become obsessed with the presidential election, watching unhealthy amounts of MSNBC (I think it is overboard when you watch the same episode of Countdown or Rachel Maddow more than once...)

This election season could exemplify, I think, a large portion of my life, in that I became afraid to be too optimistic, too hopeful, that Obama would be elected. I have been (as have we all, I'm sure) disappointed by the behavior/decisions of others so many times. It feels like a personal risk to put aside my native cynicism and actually hope for and want something.

ADA Watch emailed me this excerpt from Obama's acceptance speech:

If there is anyone out there who still doubts that America is a place where all things are possible, who still wonders if the dream of our founders is alive in our time, who still questions the power of our democracy, tonight is your answer.

It's the answer told by lines that stretched around schools and churches in numbers this nation has never seen, by people who waited three hours and four hours, many for the first time in their lives, because they believed that this time must be different, that their voices could be that difference.

It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Hispanic, Asian, Native American, gay, straight, disabled and not disabled [my emphasis]. Americans who sent a message to the world that we have never been just a collection of individuals or a collection of red states and blue states.

We are, and always will be, the United States of America.
President-Elect Barack Obama, November 4, 2008

I teared-up when he mentioned the disabled (and no, I don't care that he didn't say "people with disabilities -- in this framework, "disabled" is just fine). Not because I'm naive enough to think that someone else may easily have told him to put it in the speech, but just because it was there, as a symbol that we are to be included at his table.

So -- I am still cautiously hopeful for what Obama can accomplish. He is inheriting a boat-load of problems that will have to be addressed before he can do much about health care. I am heartened by the fact that he considers health care a "right", however.

His pre-election white paper on disability issues (BARACK OBAMA AND JOE BIDEN’S PLAN TO EMPOWER AMERICANS WITH DISABILITIES) addressed the fact that insurance (both private and governmental) has evolved to a point where it will only provide the minimum durable medical equipment (to enable you to get around "inside the home") to cut costs. (See page 7 on the Medicare "homebound" rule.)

I'm heartened by the idea that he is a thoughtful, reportedly "cautious" man. Unlike Bush, I don't think Obama will be unable to admit mistakes or missteps and accordingly change course as appropriate.

Time will tell. Join me in daring to be hopeful.

ADA Watch -- Call for Action and Assistance

2008-07-31T12:28:00.000-07:00

If you aren't already aware, new rules are under review for the enforcement of the ADA by the Department of Justice (DOJ). Unsurprisingly, some of the rules cut into access.

ADA Watch sent me the email below today. If you have a lot of time on your hands, you can review the information they provide, and make detailed comments to the DOJ. If you don't, I think just a semi-generic email (if you go to the ADA Watch Action Center they provide instructions as to how to do all of this) certainly couldn't hurt -- particularly if they get a lot of them.

Check it out -- these rules have a real impact on the future of access in the United States, for things as basic as curb cuts at intersections:

ADAWatch.org
National Coalition for Disability Rights
601 Pennsylvania Avenue, NW, Suite 900S
Washington, DC 20004

ACTION ALERT:
Help Stop the Department of Justice from Implementing Rule Changes to the ADA that Will Profoundly Limit Access!

ADA Watch/NCDR previously notified you of proposed amendments to Titles II and III of the Americans with Disabilities Act (ADA)'s federal regulations and called on you to make public comment.

We also forwarded Steve Gold's assessment of the proposed changes which will profoundly affect access to public facilities and to public accommodations and commercial facilities.

We still need you to take action!

The deadline for public comments is August 18, 2008.

Our coalition partners at the Disability Rights Education and Defense Fund (DREDF) and other disability rights attorneys and advocates have put together a comprehensive Action Center so that we can work together to stop these harmful changes.

DREDF tells us: "Some of DOJ’s changes are excellent, and urgently needed. It is important that the disability community laud these, to support DOJ against industry attack. Good proposals include adoption of the new 2004 ADAAG, stronger hotel reservation and ticketing provisions, recognition of psychiatric service animals, additional companion seating in theaters and stadiums, and stronger provisions for effective communication for people with hearing, visual, and speech disabilities."

"However, there are also many draconian changes that would radically reduce the rights of people with disabilities to accessible facilities."

For example, DOJ proposes:

A significant weakening of the readily achievable barrier removal requirement for public accommodations;
A significant reduction of elements required to be accessible in state and local government facilities;
An exemption for all existing facilities from the new recreation and playground rules.
DOJ must receive a flood of comments from the disability community in favor of a strong, comprehensive ADA.

Comments must defend the principle of individual, case-by-case assessment, which DOJ is largely abandoning in favor of many blanket reductions.

We must remind DOJ that the ADA is already carefully crafted to take the needs of covered entities into account, and that reductions to our civil rights would be a devastating blow to our daily lives.

Go to the Action Center now and stop the Department of Justice from rolling back our civil rights!

Click here to got to the Action Center:
http://www.dredf.org/DOJ_NPRM/index.shtml

My Bad -- Angry Gimp's BAD Entry

2008-07-01T15:01:00.000-07:00

I missed Blogging Against Disablism Day (May 1st) this year -- my real job is interfering with my "real" life these days...

I just came upon The Angry Gimp's entry for BAD and it so resonates with my experience that I encourage you to go read it here http://theangrygimp.blogspot.com/2008/05/after-taking-peek-at-some-of-other.html

The Gimp Parade: RIP Harriet McBryde Johnson, 1957-2008

2008-06-17T15:01:00.000-07:00

I missed this information, well covered by Kay Olson at The Gimp Parade.

Harriet McBryde Johnson was/is one of my heroes for writing so well, so accurately about the disability experience -- particularly of her youth. If you are of an age (I, too, am 50) and experienced a segregated childhood, I urge you to read Accidents of Nature. My review of that book is here: http://teriadams.blogspot.com/2006/06/novel-that-tells-it-like-it-was-and-is.html

The Gimp Parade: RIP Harriet McBryde Johnson, 1957-2008

Disability Rights Fund

2008-06-17T14:33:00.000-07:00

I just read about this new grant-making organization at Rolling Rains. You can read all about it at their website: http://www.culturedisabilitytalent.org/index.html.

This, from the website:

"All 2008 grantmaking will be directed to DPO activities in the following seven countries: in Africa—Ghana, Namibia and Uganda; in Latin America—Ecuador, Nicaragua and Peru; and in Asia—Bangladesh. Grants will be given to:

Raise awareness about the CRPD [United Nations (UN) Convention on the Rights of Persons with Disabilities] and its implications for persons with disabilities (PWDs)
Build coalitions and networks which increase the visibility and voice of all persons with disabilities (PWDs)
Strengthen advocacy efforts in relation to ratification, implementation or monitoring of the CRPD

DRF will make grants to organizations and projects that demonstrate a clear ability and commitment to contribute to the advancement of the human rights of persons with disabilities. Grants will provide one-year, project-specific support. Cross-disability and other partnerships in-country are strongly encouraged, as are projects which address particularly marginalized sectors of the disability community."

2008 Superfest Internaitonal Disability Film Festival

2008-06-17T13:42:00.000-07:00

I've been so busy with my "real" job and life in general that I almost missed this, a Crip Film Festival in Berkeley, California, June 20-22, 2008. I'm going to try and go on Friday -- if I make it, reviews to follow...

The link to their website, including the screening schedule, is above and here: http://www.culturedisabilitytalent.org/index.html.

Cool Video About Disabled Pets

2008-05-20T12:33:00.000-07:00

If only people so easily adapted to changed circumstances as these pets seem to:

http://video.msn.com/?mkt=en-us&vid=43eb70da-b2fd-40e5-b0d4-39e843027956&playlist=videoByTag:tag:source_today%20show:ns:MSNVideo_Top_Cat:mk:us:sf:ActiveStartDate:vs:0&from=MSNHP&tab=m17&GT1=42003

Ebates (Again)

2008-05-19T13:27:00.001-07:00

I got my "big fat check" of $17.00 on Saturday -- my rebates of shopping through Ebates for the quarter ending April 30, 2008. They're having a special through the end of June:

http://www.ebates.com/referral/0508bonusosu.htm?referrerid=2AqL%2FMhqECk%3D

My total of rebates since joining is up to $418!

Good NY Times Piece on a Wheelchair Athlete

2008-05-15T16:42:00.001-07:00

One of the few articles of its kind that I've seen that almost completely avoids being patronizing:

http://www.nytimes.com/2008/05/15/sports/othersports/15george.html?scp=1&sq=josh+george&st=nyt

Cool Video

2008-04-15T17:04:00.000-07:00

Check out this cool cross-disability video from several countries in the Middle East:

http://uk.youtube.com/watch?v=ylFwcdNfVhE&feature=email

Watch the Whole Speech

2008-03-18T17:41:00.000-07:00

Obama made a speech this morning on the wider issues raised by his association with Rev. Wright. If you have the time, I urge you to watch, listen and/or read the entire speech. I am sure various news outlets of every political stripe will feature soundbytes of portions of the speech, but to really appreciate what he is saying, you need to experience the whole.

You can find it here: http://my.barackobama.com/hisownwords.

Someone told me that the pundits are already saying that the speech was "too nuanced" for the average voter to appreciate. I am glad he didn't dumb it down, personally. I think one of his attractions is that he is giving voters the benefit of the doubt about being able to grasp the subtleties of the issues.

I Can Relate

One thing that struck me, while I was listening to his speech is that as a "disability rights advocate" I have experienced hearing a so-called ally say things I vehemently disagreed with, or that merely made me uncomfortable. I call it the "don't be on my side" phenomenon. But, unless someone says something that I simply cannot allow to stand, I may remain silent. We need solidarity, or at least the appearance of solidarity in the face of all of the various forces that would weaken our perpetual struggle to equality.

The very title of this blog, "Crip Chronicles" offends some people -- for using the word "crip". But, as a young disabled person, particularly when I first started being integrated in high school, the words "crip" and "angry crip" was used by my older, disabled classmates to refer to US, who were struggling for equality.

I try to be politic about where and when I use the term. But, I know when I have found a brother or sister in the "disability rights movement" when they are comfortable with the use of "crip". And I also know that you can hear some pretty angry and hostile talk when a bunch of angry crips get together and talk about the wrongs done to them by TABs [temporarily able-bodied], the system and the man.

Fly Me to The Moon...

2008-03-10T14:16:00.001-07:00

In the course of web surfing, I found this link today: http://www.iflymat.org/index.html for Mobility Air Transport.

If they get this off the ground (pun intended) it will be the greatest thing since sliced bread for wheelchair users. Check it out.

I Got a Check from Ebates

2008-02-20T19:42:00.000-08:00

I got my quarterly check from Ebates today ($22 and change), and saw that they're having a special deal until March 31st, so I thought I'd mention them again. Through March 31st, they are increasing their sign-up bonus to $10 from $5 (to get the "free" money, you have to place an order at one of their stores; if you don't order anything until after March 31st, you will just get the usual $5.)

Here's the link:

www.ebates.com/refer-a-friend/bonusoffer/index.htm?id=1935512

I promote this for a couple of reasons -- one is that, yes, I also get a bonus when someone signs up through my link. But also, I post it on "Crip Chronicles" because I think that if you have any kind of mobility impairment and you're not doing the bulk of your shopping online, you're really missing a great boon to your quality of life.

Secondly, who needs a little extra money more than we do? They've got so many store listed now, that it is easy to get a little cash back on a lot of things -- just this month, I got rebates on my groceries at Safeway.com (yes, it is only 1%, but that's 1.15 I didn't have before), on filing my taxes at TurboTax, and on slippers from FootSmart.com.

'Nuf said.

Elected Representatives Respond re: ADA Restoration Act

2008-02-13T12:12:00.000-08:00

The day that I posted the call (from AHEAD) to write to our elected representatives to ask for support for the ADA Restoration Act, I did just that -- sending 3 very similar emails to my senators and congresswoman.

While I have signed petitions in the past, I believe this is the first time I'd actually written to my elected officials, and was surprised to get a response from each, via email, over the course of the following 10 days.

If you're keeping score, both Senator Barbara Boxer and Representative Anna Eshoo both said unequivically that they were in strong support of the ADA Restoration Act. Eshoo is a co-sponsor of the legislation.

Senator Diane Feinstein said, after saying that she understood my concerns, "Please know I will keep your thoughts in mind should this legislation come before the full Senate." Sounds like a variation of "science is looking into it", and a strong reluctance to make any promises.

Tell your Representatives to Support the ADA Restoration Act

2008-01-31T12:56:00.000-08:00

In the interest of time, I quote an email I received today (I am a member) from AHEAD (Association on Higher Education and Disability):

"On January 29th, 2008, the Education & Labor Committee of the US House of Representatives held a hearing on The Americans with Disabilities Restoration Act (H.R. 3195). This bipartisan legislation is widely supported by members of Congress and organizations nationwide and holds the promise of restoring the original intent of the ADA.

As an organization committed to the ideals of the Americans with Disabilities Act, AHEAD endorses H.R. 3195 and encourages its members to become informed about this vital, pending legislation and to take action to support its passage (see below). This is particularly important as organizations that oppose the passage of the Restoration Act are coming out with outrageous distortions of its consequences.

The Americans with Disabilities Restoration Act (H.R. 3195), introduced by House Majority Leader Steny Hoyer (D-MD) and U.S. Rep. James Sensenbrenner (R-WI), would restore the original intent of the historic Americans with Disabilities Act.

Excerpts from testimony given at the hearing include:
"The bill does not seek to expand the rights guaranteed under the landmark Americans with Disabilities Act. Instead, it seeks to clarify the law, restoring the scope of protection available under the ADA," said Hoyer. "It responds to court decisions that have sharply restricted the class of people who can invoke protection under the law. And it reinstates the original Congressional intent when we passed the ADA."

"Despite our progress, the courts—including the U.S. Supreme Court—have narrowly interpreted the ADA, limiting its scope and undermining its intent," Hoyer continued. "We could not have fathomed that people with diabetes, epilepsy, heart conditions, cancer, and mental illnesses would have their ADA claims kicked out of court because, with medication, they would be considered too functional to meet the definition of 'disabled.'"
Andrew Imparato, president and CEO of the American Association of People with Disabilities, said that the initial promise of protecting disabled workers under the ADA has largely faded as a result of Supreme Court rulings.

"In 1990, the ADA was heralded as an 'emancipation proclamation' for people with disabilities," said Imparato.

"Seventeen years later, on account of judicial activism, we are far from having a law that can be counted on to safeguard the fair treatment of people with disabilities in the workplace."

The AHEAD Board of Directors encourages members to learn more about The Americans with Disabilities Restoration Act, http://thomas.loc.gov/home/gpoxmlc110/h3195_ih.xml and to contact their representatives in both houses of Congress to support this legislation. To contact your members of congress go to: http://www.visi.com/juan/congress/ "

I used the site above to get the links to my representatives, and it only took me about 10 minutes (using cut and paste) to send an email to each of them. I kept it short and sweet: people with disabilities are losing ground in many arenas -- support the ADA Restoration Act in an effort to keep us from losing more and more...

I Approve this Political Message...

2008-01-27T23:09:00.000-08:00

February 5th is just around the corner, and last week, I found a reason to pick a specific candidate.

I have known for a long time that I would be voting for one of the Democratic candidates, but was having a difficult time deciding between Barack Obama and Hillary Clinton, for a variety of reasons.

The reason I found was that Obama was the only one of the two candidates that addresses and acknowledges disability issues on his campaign website. To be precise, he has a 9 page PDF position paper which you can read for yourself, found at http://www.barackobama.com/issues/disabilities/. There is also a beautifully captioned video on this page which is worth watching, particularly if you don't feel like reading the position paper.

Vote!

Whatever you do, vote. Whomever you decide to vote for, do it. Particularly in the General Election, come November. More and more states are making it easier to vote by mail, so whether or not it is a hassle for you to get out to the polls physically, you can still vote.

If you're not already registered, it is too late for a lot of the primaries, but register NOW so you can vote in the General Election.

It matters. People with disabilities have issues that are especially meaningful to us that are being discussed widely in this election, particularly the availability of health care. If the millions of people with disabilities ever made a concerted effort to be heard, we would be.

2007 Year End Wrap-up, Part I

2007-12-30T17:39:00.000-08:00

My extended silence blogside of the last few months is due to a variety of inter-related things: battles with 2 different types of insurance companies, learning more about the ins and outs of DME (durable medical equipment -- aka wheelchairs, crutches, and the like), becoming more disabled, tuning in to the political fray of the Presidential primaries, and turning 50. I've been trying to process these experiences and come out on the other side with some take-away lessons/messages, and am only moderately successful.

First Tale of Insurance -- The Long Term Care Variety

My employer, West Coast Ivy, offers group Long Term Care (LTC) Insurance for its employees at quite reasonable rates, as these things go. Years ago, I read Suzy Orman's advice that the best age at which to sign up for LTC insurance was 55.

In summer of 2006, I went to a local Book Fair, where a woman with a LTC booth told me I should apply for it immediately, and seemed in doubt that I could get it, even though my employer had the group plan.

RE--JECTED!

In an uncharacteristic burst of naivete, I had thought that because of the nature of a group plan, I would not have difficulty being accepted for the LTC policy, and I applied for it in the Open Enrollment period of 2006, which was in November of 2006.

The initial application form asks questions about cancer, high blood pressure, heart disease -- in other words, the big, bad diseases, and whether you've been diagnosed with them. All "no". The only question with a "yes" answer was something like "have you needed mobility assistance in the last 3 years, such as a wheelchair or a walker?"

That "yes" prompted my first rejection -- to make a long story short, I went back and forth with them from 11/2006 to 9/2007, when they finally rejected me with no further opportunities for appeal. They said that they based the final denial of coverage based upon information they received from my primary care doctor and my dermatologist.

Ironic Twist

After the final denial, I was debating about whether or not to request copies of what my doctor's had said -- since the insurance company had already lied to me about what the report of a phone interview had contained, it seemed like it might be worth seeing what was said -- but I was pretty sick of the whole thing by then.

Before I could suck it up and write them yet another letter, my employer announced that for "this year only", all employees would be able to apply for the LTC insurance with no medical review -- i.e., guaranteed acceptance. This "guaranteed acceptance" also occurs within the first 30 days of hire for new employees -- but I was 37 at the time, and totally broke, and hadn't thought that would be my last chance to apply...

So, I applied again, in 2007's Open Enrollment period (for insurance year beginning 2008), and received a letter signed by Jody Ross congratulating me on my acceptance. Ms. Ross was also the signatory of the numerous letters of the past year's struggle, but she did not acknowledge this (it may well be a pseudonym -- I'd certainly use one if I had that job.)

Lessons Available, More Questions to Come

My boss, whom I had kept apprised of my struggle all year actually called me at home when she got the letter announcing this year's special acceptance policy. I spent the next month trying (with much success) to get everyone in our office to sign up.

For me at 50, the cost will be $100 a month, for the highest coverage available currently: $300/day, in an assisted-living facility, and $225 a day in my own home. There is a one-time 90 day waiting period; you must have lost the ability to perform 2 or more ADLs (activities of daily living) without "supervision" (to cover cognitive deficits) or assistance in order to trigger coverage. There is a built-in inflation provision, so that over time, both the premiums and the coverage will increase proportionately.

Why I fought the rejection/denial of coverage: Since it is a group policy, I thought (mistakenly, apparently) that there was a higher degree of insurability available to me as a member of a group. It turns out that most of the people in my office were rejected on the first level of application, for very different reasons: one person answered "yes" to having seen a psycho-therapist in the last 3 years, one person had high blood pressure.

In other words, LTC insurance is just like most other types of insurance -- they don't want to insure you if you have any degree of likelihood of ever collecting benefits. Therefore, if you are currently very healthy and have not been diagnosed with anything, but you think you have a reasonable chance of needing assistance down the road (even if the road seems very long now because you're still pretty young), you should at least consider signing up for LTC insurance now.

Did you know that the cost of the premiums of LTC insurance are NOT TAX DEDUCTABLE, nor can you use your Health Care Flex Plan to pay them? I was floored by this, as it seems to me there is a huge public policy interest in getting people to insure themselves for this kind of care. WTF?

The RN that conducted my phone interview (which was during the first third of my struggle) told me that they denied everyone who said "yes" to ANY of the questions on the initial application. This reminded me of the legendary rate of denial of first applications for SSI -- regardless of the documented level of disability. I asked her if she knew what percentage of people appealed this initial denial but she said she didn't know.

I think a tremendous number of people take "no" for an answer. I never really thought I could win this appeals process, but I also really bristled at the idea that they were denying me solely because I use a power wheelchair for mobility. That seems to me to be clear discrimination -- except for my mobility impairment, I am quite healthy, and do not and have not ever received in home support services. In other words, they denied me coverage without any additional information in to my diagnosis or prognosis. Early on, even thinking I would ultimately lose, I decided to make them work for it.

And, who knows? Maybe the number of rejections and complaints by my fellow employees might have led to this year's "free pass". I feel certain they didn't do it out of the goodness of their hearts.

More 2007 fun to come...

New Post at Crip Critic

2007-09-23T19:13:00.000-07:00

Finally, a new post at my other blog, http://cripculturecritic.blogspot.com/...

DisabilityTV.com

2007-08-16T19:02:00.000-07:00

Through Scott Rains' "Rolling Rains" I just found this cool link to a New Zealand website for crips and their families and friends. http://disabilitytv.com/

I've only watched a couple of their videos, but THEY ARE COOL!

Ebates: A Painless Way to Save a Little Money

2007-08-16T13:13:00.001-07:00

I am a dedicated online shopper -- I do as much shopping online as I possibly can.

I signed up with Ebates.com several years ago, and as of today, I've gotten $373 in rebates. They have over 800 stores signed up with them -- my only regret is that Amazon.com only offers coupons through them (Barnes & Noble does have a small rebate deal, though).

Click here http://www.ebates.com/rf.do?id=1935512 to check it out. Yes -- full disclosure -- I will get $5.00 for people who sign up and use the service if you go through this link. But you too will get a "free" $5.00 if you sign up.

If you have a disability that impacts the whole shopping process -- which can be a whole range of disabilities -- or you just like avoiding crowded stores and witless store clerks, try the online process.

Some people are really afraid of giving out financial info online, but I have so far not had any problems using any of the stores through ebates. One of the things to keep in mind is that you have to start with the ebates.com "portal" to do the shopping, or it won't track any of your purchases for the rebates. A couple of times, I have forgotten until the very last minutes, and have logged out and started over, just to get my rebate.

I think the average rebate is only 3-6%, but over time it adds up -- and seems like free money, when you get your rebate check in the mail.

DICK CHENEY IS A PROPHET!

2007-08-15T15:38:00.000-07:00

http://www.youtube.com/watch?v=YENbElb5-xY

2/13/08

In the Newsweek issue dated 2/18/08, there is a quote from Pat Buchanan, a "conservative pundit" from the "Today" show, in which Buchanan said of John McCain, "He will make Cheney look like Gandhi."

Now that's scary.

Worthwhile Petition

2007-06-21T16:49:00.000-07:00

This petition urges the Creation of a Disability Advisory Committee for the American Medical Association:

http://www.gopetition.com/petitions/creation-of-an-ama-disability-advisory-committee.html

(Thanks to Wheelchair Dancer's blog for the heads up.)

Turning the Tables

2007-06-21T16:34:00.000-07:00

Great video on YouTube! Check it out; it shouldn't require an explanation...

http://www.youtube.com/watch?v=k3AeIFup1qY

Petition in Support of the ADA Restoration Act

2007-05-18T13:29:00.000-07:00

I wanted to draw your attention to an important petition that I recently signed: "Keep the Promise: Restore the ADA":
http://www.ipetitions.com/petition/ADARestoration?e

I think that the more attention we can muster to get Congress to keep the provisions of the ADA from going the way of other civil rights, the better. I'd like to encourage you to add your signature, too. It's free and takes less than a minute of your time. Thanks!

And, Another

2007-05-08T14:52:00.000-07:00

Another British Crip Blogger to revel in at Sally's Life.

Another Great Voice in the Struggle

2007-05-07T17:21:00.000-07:00

...Because make no mistake, we crips are still in the middle of the beginning, I think, of our struggle.

I wanted to point out this entry of Midlife and Treachery, which was posted (on time!) for Blogging Against Disablism Day on May 1st. Check it out.

Disability Identity

2007-05-06T22:10:00.000-07:00

(Many apologies to my fellow crip bloggers for the lateness of this entry -- last week really was a weak from one of the lesser circles of hell. This is my entry for Blogging Against Disablism Day -- May 1st.)

The Question

Sometimes, people will discuss the question: When defining yourself, which do you list first? I.E., a woman, a professional, a Baby Boomer, a law school graduate, a person with a disability, heterosexual, a "single", a pet owner, etc. While sometimes I think this is a frivolous question, I think it can also be extremely illustrative of not only how one thinks about oneself, but also how one's experience shapes that self-image.

The Answer

Years ago, either in my late 20s or early 30s, I figured out that if you answered this question based upon what factor/attribute has had the most impact on the totality of your life, then "person with a disability" was an easy, hands down winner as the first thing I would mention in defining myself.

No Hiding Possible

With my disability there isn't, and never was, any option to hide it or "pass". I've never not had it, since it is congenital, and the gene mutated long before I popped out and shocked the world and my parents with the odd appearance of my skin. Both adults and kids were scared of me -- so much so that I got shunted off into special ed, even though I could have managed the physical demands of a "normal" elementary school, with the one exception of p.e. I could read before most kids, and was extremely self-possessed. In the era before the IDEA, I wouldn't have needed any classroom assistance even if it had been available.

No, it was at the age of five that the discrimination began, and my parents colluded -- partly out of fear for me I suppose, and partly because they taught elementary school in my very district and didn't want to rock any boats. My parents -- with the best of intentions (although I personally despise the excuse for any bad behavior that the perpetrator is "well intended") made me feel that I must cover myself up (put your socks on, Pete is coming over) because I looked scary to other people).

The meta message was also that it was my job to make other people feel comfortable with me [since I was the different one]. There was never any indication that others -- children or adults -- had any responsibility to treat me with respect, even before they found out what was "wrong" with me.

My Question

I have a vivid memory of being nine years old, already in special ed, and asking one of the teachers, "Why is it okay to send me to a separate school because of my skin [my disability] when it wasn't okay to send kids who were black to separate schools?" This was the height of desegregation and the Civil Rights Movement -- the 1960s. And I remember that she just looked at me, with a mixture of exasperation and mystification.

I didn't enter the realm of non-segregated education -- meaning being counted on the same rolls as every other student in an educational venue until 1975 when I entered Community College, under my own steam.

Simultaneously...

Doctors never suggested a wheelchair -- or more appropriately, a power chair -- for me, even though the main problem with my disability was blistering on my feet, which was caused by...wait for it...WALKING! So, I walked with difficulty, until one day in special ed at the age of 11 or 12, I casually commandeered an extra manual wheelchair which I would use all day at school. I pushed it with my feet [some have likened this to Fred Flintstone in the old cartoons, and I think it is appropriately descriptive], but because my body weight was mostly in the chair and not on my feet, I was much more comfortable.

When I went on to high school (we were still on the rolls of the county's special ed program, but were more or less integrated for most of the day), I insisted that this spare wheelchair be kept in the "resource room" for me. I picked it up every morning, and an aide would take it back to the classroom for me when we boarded "the short buses" at the end of the day. Because the classrooms in which I took classes weren't set up with wheelchair accessible desks, I parked in the hall and walked in and sat in a "normal" desk. I didn't do this to feign being more normal, but because it was the only option that made sense to me.

The non-disabled friends I eventually made -- after a few years of being in classes with them and being a good student with a sense of humor -- were able to grasp the fact that I could both need a wheelchair and be able to walk.

Fast Forward

College, jobs, more college, law school, more jobs, independent contracting, losses, successes. Through it all, the crip card was always on the top of the deck, and not because I insisted on putting it there. That is another discriminatory concept that gets imposed on people with visible disabilities -- that if we acknowledge that people treat us differently, for good or ill, we have a chip on our shoulder. Maybe I do, now, but I didn't put it there in the first place. And it falls away very quickly when I sense that anyone I am dealing with isn't treating me in a "less than" way because I look different, and certainly am a far cry from the idealized standards of appearance that women are brainwashed into thinking as the only acceptable way to be in this society.

Romantic relationships -- pretty much off the table. Perhaps there is a guy out there for me, but I may not ever meet him. And I [mostly] made peace with that, at around 40.

Where it still makes me deeply, bone shatteringly angry is when I still encounter it in the workplace -- particularly with people I've known for a long time. It just happened again the other day -- a person above me in the food chain treated me disgracefully. And, I am certain, because she knows that I can't just simply quit -- I don't know how long it will take me to find another job, even though I'm very experienced and very, very good at what I do.

And why is that? Because of my disability, in part at least, always. I am a person with a disability -- first, last, always.

Blogging Against Disablism II

2007-04-20T22:57:00.000-07:00

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

2007-04-19T15:52:00.000-07:00

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

2007-03-14T15:51:00.000-07:00

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

2007-03-12T17:54:00.000-07:00

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...

2007-03-12T17:50:00.000-07:00

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

2007-03-01T17:55:00.000-08:00

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

2007-02-16T14:02:00.000-08:00

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:

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

So there.

Post Christmas Dickens

2007-01-02T15:59:00.000-08:00

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

2006-11-28T16:20:00.000-08:00

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

2006-11-19T18:00:00.000-08:00

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

2006-09-18T01:56:00.000-07:00

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

2006-09-10T18:34:00.000-07:00

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

2006-09-10T18:27:00.000-07:00

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

2006-09-10T15:39:00.000-07:00

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

2006-08-31T10:32:00.000-07:00

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...

2006-08-29T13:50:00.000-07:00

...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?

2006-08-17T14:26:00.000-07:00

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...

2006-08-15T16:43:00.000-07:00

(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

2006-07-28T12:19:00.000-07:00

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

2006-06-20T16:17:00.000-07:00

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!

2006-05-17T15:54:00.000-07:00

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"

2006-05-10T16:20:00.000-07:00

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

2006-05-09T15:02:00.000-07:00

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?

2006-05-01T00:43:00.000-07:00

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!

2006-04-29T15:20:00.000-07:00

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

2006-04-13T13:09:00.000-07:00

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?

2006-04-10T17:11:00.000-07:00

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

2006-04-06T17:02:00.000-07:00

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

2006-03-06T14:54:00.000-08:00

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

2006-03-06T14:02:00.000-08:00

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

2006-02-17T11:37:00.000-08:00

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

2006-02-09T20:15:00.000-08:00

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?

2006-02-08T15:02:00.000-08:00

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

2006-02-01T17:47:00.000-08:00

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

2006-01-26T16:12:00.000-08:00

(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.

Aunt Aggie Ruins Christmas, or Nearly Dies in the Attempt

2005-12-28T22:28:00.001-08:00

Not My Aunt

For several years now, I spend Christmas Day with friends, rather than family. Christmas Eve has always been the night of the big celebration in my family anyway, and the parents are just as glad not to have company two days running (although you might have to put my mother on the rack to get her to admit it).

So, for the last few years, I go to the Cleaver's house on Christmas Day, invited by Mrs. Cleaver, Joan. Joan is one of a group of women I have dinner with throughout the year -- I am the youngest in the group at 48; most have grandchildren. Come to think of it, I am the only one who is unattached and has no children.

Christmas at the Cleavers consists of grown children, their significant others, grandchildren (until recently, only one), and my other good friend, Susan, and her boyfriend. Susan has recently been forced to bring her aged aunt, Aggie, as Aggie's husband died, and Aggie's relatives are in Texas.

I say "forced" not because Susan isn't absolutely gracious -- as is Joan -- about inviting Aggie. Graciousness abounds to such an extent that you can hardly hear anyone grinding their teeth.

Aggie in Decline

Aggie is a Southern Belle in decline. Her age is a state secret, but I'm guessing late-eighties, early-nineties. Until the last three or four years, Aggie could literally "walk the legs" off Susan, 25-30 years younger. Now, however, Aggie has age-related disabilities, and she's not handling them well.

She deigns to use a fancy-looking gold-handled cane, when what she needs is a wheelchair.

Someone bought her a walker with a fold-down seat, which she says she "can't" use; now, having seen her in action, I am inclined to believe she can't use it. When she walks with the cane, she also needs to lean on someone on the other side. Progress is slow and painful, both to experience and to watch.

No Pain Control

The doctor has told Aggie that she can't take ibuprofen because her kidneys won't take it, so she is only taking Tylenol, which seems to be helping little if at all. Considering she seems to have degenerative arthritis in her hip(s) and spine, this hardly seems surprising.

She is terribly, terribly afraid of falling, and who can blame her? So am I, when it comes to that. And I don't expect multiple fractures from a fall.

Like I said, A Wheelchair...

I believe that Susan said that Aggie gets around her house by using the cane, and holding on to walls & furniture. Can you say hip fracture?

The lack of a wheelchair is not Susan's fault. It may not even be the doctor's fault, although since he holds sway over Aggie to some extent, I do hold him partially responsible.

No, my friends, it is the stupid stigma of using a wheelchair, combined with the inappropriate application of the "use it or lose it" homily.

Did you know that the Rehab Experts are now touting "conserve it to preserve it", instead of "use it or lose it"? This after they found out, among other things, that the paraplegics that had all been told to push themselves in manual chairs for the last 25 years are now coming up with blown out or frozen shoulders -- in addition to whatever disabilities they started out with.

For years, I didn't get prescribed a wheelchair -- actually, I ended up demanding one, in my mid-30s -- because the doctors and PTs, in their infinite wisdom thought that if I had a wheelchair I would stop walking entirely. Funny, it's been 10 years now and that hasn't happened. What has happened is that because I use a wheelchair when I'm out and about, I can stand to walk around my house and often be pain free. Pre-wheelchair, my feet often would be painful by mid-morning, and every step was one too many. I personally don't think that is any way to live, if there are any ways to avoid it.

Time Lapse Stupidity

I want to be clear, just in case Susan reads this, I don't think any of this is her fault. I can tell that Aggie wouldn't cotton to getting a wheelchair -- would fight it, even -- whether Susan attempted to suggest it or not.

What drives me insane is that Joan, my hostess with the mostess, doesn't get it either.

After it took nearly ten minutes for Aggie to walk -- with human and cane assistance -- from the living room to the driveway of a fairly small house, I said to Joan, "for $150 she could get a good transport wheelchair that would get her from the car into the house."

Joan -- Mrs. Cleaver and mother-knows-best -- says, "she doesn't need it." "Use it or lose it," Joan says to me. "When she can't go out anymore, then she'll get one."

I wanted to slap her. Really.

Big Picture, Folks

By not getting the proper pain management, Aggie's doctor and Aggie are ensuring that her last stage of life will be dominated by chronic medium to severe pain.
By refusing to get adequate mobility assistance, Aggie is not only putting herself through the tortures of hell in both pain, and the constant anxiety of falling, she is also;
Making every social interaction with her friends and relatives an ordeal -- not only can they not assist her properly, but they can't even discuss it rationally with her.

If you have older friends or relatives with whom you can rationally discuss these things, start now. Try to get them to see that rather than a harbinger of death, a wheelchair can be a very liberating tool for aged-related mobility issues.

As cheesy as they are, the late-night scooter commercials do say it right when they show a senior saying, "it gave me back my freedom". Aggie never even drove a car, as far as I know, so I wouldn't advocate for a power chair of any kind for her. But, if she would consent to a travel chair -- she loves to go out -- she could make her own life and that of her remaining, steadfast (I won't say saintly) friends and relatives immeasurably and simply easier.

So much so that they wouldn't be overwhelmed by guilty relief when she does take that Big Fall of which she is so afraid.

Failure of Imagination/Abundance of Imagination

2005-12-25T15:59:00.000-08:00

A friend sent me this over a week ago, and I just got around to reading it. What I find amazing and gratifying is that Kathie Snow -- whom I haven't met, but I've read some of her work before -- uses the same phrase that I often do, "failure of imagination", and in the same way.

We casually toss around the phrase of "thinking outside the box", but so few of us do it unless we're up against the wall -- and some, not even then. When you have a severe disability, you've got to think outside the box most days, sometimes several times a day, just to get business done. This ability to creatively problem solve is one of the gifts of disability...

Featured Article: The Power of Imagination
Copyright 2005, Kathie Snow, http://www.disabilityisnatural.com/
According to the 9/11 Commission, a "failure of imagination" on the part of the intelligence community and our nation's leadership was a contributing factor in the horrific September 11th tragedy. If officials had let their imaginations roam, it's possible they could have anticipated what terrorists were capable of doing; then measures could have been taken which might have thwarted a terrorist attack.

This same conclusion is being applied to the attack on Pearl Harbor during World War II. The author of a new book on the subject details that American political and military leaders exercised little or no imagination related to what the Japanese government might be planning. And the Failure of Imagination criticism is now being heard in the wake of the tragedies of Hurricane Katrina.

The opposite of a Failure of Imagination is an Abundance of Imagination. Albert Einstein once said, "Imagination is more important than knowledge." We can see one example of this Abundance in the success of businesses where the imagination of employees results in new products and services that make life better.
What if we applied the Failure of Imagination and Abundance of Imagination concepts to disability issues? Let's get the bad news over with first.

During the past 35 years, our nation and our 50 states have dedicated more laws, programs, services, and funds (billions and billions) for people with disabilities than at any other time in history, and we probably have more "disability stuff" than any other nation in the world. Early intervention services are intended to "maximize the potential for individuals with disabilities to live independently in society;" special education is supposed to educate children with disabilities so they can enter the workforce; vocational-rehabilitation and other employment services are ---duh!---supposed to help people with disabilities achieve gainful employment. But after decades of "progress," too many children with disabilities are in segregated special ed classrooms; the estimated (and shameful) 70-75 percent unemployment rate of people with disabilities has changed only a few percentage points; and children and adults with disabilities continue to be excluded from the mainstream of American society despite all the laws and programs designed to encourage inclusion.

We have the money (billions) and we have thousands of people to do the work (teachers, service providers, therapists, and professionals of all kinds). So what's the problem? A Failure of Imagination to see the possibilities for people with disabilities.

We're hypnotized by labels and what we think they mean ("deficits" and "problems"), while ignoring the strengths and abilities of those we have labeled. We're seduced by the (false) promises of treatments, interventions, and cures, and pay little attention to what people with disabilities really need. We react to IQ scores, standard deviations, and any "abnormalities" with more tests and evaluations, which so cloud our vision that we can no longer see that people with disabilities are more like people without disabilities than different. Our senses are dulled by rules, regulations, and red tape, so we robotically go through the motions.

"You cannot dependon your eyes
when your imagination is
out of focus."

Mark Twain

These issues and many others sabotage our ability to imagine what's possible. And just as a Failure of Imagination contributed to the tragedies of 9/11, Pearl Harbor, and Katrina, our Failure of Imagination can lead to tragedies---the loss of hope, diminished opportunities, an uncertain future, and more---for people with disabilities.

Now for the good news. Great things are happening for some people with disabilities. Some boys and girls are successfully included in general ed classrooms and typical community activities. Some men and women are working in real jobs for real wages---some are self-employed---and living in their own homes! These "exceptions to the rule" are the result of an Abundance of Imagination within people with disabilities, parents, teachers, service providers, and others who are making things happen regardless of the type or "severity" of disability.

Let's turn the "exceptions" into the "rule." We can begin by imagining the "worst-case" and the "best-case" scenarios, and letting those images drive our actions: doing what it takes to prevent the worst and ensure the best. And throughout this process, we need to continually ask, "What if..." for both the best-and worse-case scenarios.

When my son, Benjamin, was three, I met several adults with developmental disabilities in the Partners in Policymaking leadership development program (http://www.partnersinpolicymaking.com/). A few were employed and living Real Lives; most were not---they were in congregate living settings and day programs. My husband and I wanted Benjamin to live a Real Life, just like his sister. We imagined that outcome, then did what was needed to make it happen, while also doing everything possible to prevent our son from living a life of segregation, helplessness, and dependency. Along the way, experts told us we were "unrealistic." We turned away from those who had a Failure of Imagination and embraced those who imagined with us. Today, at age 18, Benjamin is enjoying his first year of college.

Maintaining an Abundance of Imagination can change people's lives---and it's fun! Once the Imagination Machine is turned on, actions that cause change are automatic. So begin: create pictures in your mind, write your ideas, draw pictures in a "Beautiful Future" scrapbook, talk with others, or use any mechanism to imagine with abundance! As you brainstorm, keep in mind the "Tools" needed to ensure successful lives: assistive technology (AT) devices, supports, and accommodations. And remember, these are not the unique needs of individuals with disabilities---people without disabilities need AT of one kind or another, supports, and accommodations every day!

Parents: imagine your child's future, in the short- and long-term. Imagine your 3-year-old who's not talking; now listen to him say, "I love you, Mommy," with his communication device. What a sweet, precious sound! Imagine your 3-year-old who's not walking; now see her rushing to hug you while driving her power chair. Imagine your 7-year-old child on a T-ball team, taking karate lessons, and playing with friends. Keep going up the age ladder and imagine. What will it take to make these things happen?

Think long-term now: imagine your child as a successful adult, employed, living in the home of his choice with whatever supports he needs. What experiences, opportunities and Tools does he need today to grow into a successful young adult tomorrow?

Teachers and Parents: Imagine a child with a disability in a general ed classroom. What great potential is in that child! What Tools do we need to provide so her potential will be realized? How can we support her learning? Imagine the pride everyone---including the student---will feel when she demonstrates her success! Imagine what a great friend she'll be to others. Imagine how much others will learn from her! Now imagine her in college or entering the workforce. She can do it, if we imagine for her and do whatever it takes to make it happen. We're not only imagining, we're investing in her future!

Parents, Therapists, and Early Childhood Providers: Imagine a child with a disability participating in typical age-appropriate activities with children who don't have disabilities. Are your attitudes and actions making that possible? Does the child have the Tools to make it happen? Imagine the child helping around the house, spending an allowance, and engaging in other ordinary (and precious) childhood activities. All children need these typical opportunities and experiences!

Adult Service Providers: Imagine a person with a disability in his dream job. You have asked what that is, haven't you? What will it take to make it happen? Who else can you call on for help---like someone outside the system who has expertise in that field? Better yet, imagine helping a person with a disability learn how to get his own job, instead of you doing it for him! Imagine the power you're transferring, imagine the pride and excitement you'll both feel when he makes it on his own! Next, imagine a person with a disability in her own home or apartment. You moved to your own place before you were ready, and you made it! Imagine the same can be true for people with disabilities, with assistance from the natural supports in the community. Now imagine a person with a disability as a contributing citizen. Everyone needs to be needed! Imagine him joining a service club or participating in other inclusive activities.

Think "what if..." not "what is." Don't think, "Yes, but---." That's not allowed when imagining! Be unrealistic, daring, and wild---and expect great outcomes! But don't expect perfection. In the river of life, the water is not always smooth, and it's wise to change course when the current is too rough!

This brief article has just scratched the surface of what can happen when we have an Abundance of Imagination. So much more is possible and so many lives can be changed. In my own family's life, imagining and then achieving success---large or small---was energizing and affirming, which then led to more imagining and more great outcomes. And it's contagious---an Abundance of Imagination in one person can quickly spread to others! If, however, you choose to not exercise your imagination, the least you can do is get out of the way of those who are creating positive change with their Abundant Imaginations!

Begin today. Imagine, and it will be.
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Copyright 2005 Kathie Snow, http://www.disabilityisnatural.com/ Clip art from Adobe In-Design. If you would like a handout (PDF) of this article, please send your request, along with the title of the article ("The Power of Imagination") to: kathie@disabilityisnatural.com. You may share and/or distribute this E-newsletter or the PDF version of the article (in entirety and unedited) to other individuals and list serves (non-commercial use only). As a courtesy, please let me know how/when you use it. Do not violate copyright laws---request permission before reproducing in any format: in printed publications, in chat rooms, on web sites, etc. Please do not hit your "Reply" button to respond---your message will be delayed. Instead, click on the Email address link above.

Resisting the Impulse to Devalue Life as Lived With A Disability

2005-12-11T19:24:00.000-08:00

A friend sent me this link, to a recent broadcast on NPR. It is excellent, and speaks for itself.

"NPR : Valuing Life, Whether Disabled or Not"
http://www.npr.org/templates/story/story.php?storyId=5042181

Just Because You're Paranoid, Doesn't Mean They Aren't Out to Get You

2005-12-11T16:05:00.000-08:00

In the crip community, you have your occasional apologist, who will defend the non-disabled entity (individual or bureaucracy) who has failed mightily in their legal and moral obligation to make something accessible. This "can't-we-all-just-get-along" crip will say, "they don't know what they don't know". They will say, "it isn't a conspiracy, it is an oversight".

Sometimes, I am this apologist I describe above. Most frequently, I don this persona in the process of encouraging another crip to move forward with a task, after having been slapped down rather brutally in some way. I have found that "they didn't mean to [whatever]" is much more encouraging than, "well, yes, they hate you because you're disabled -- just like some people hate black people or gay people, simply because they exist -- but don't be discouraged."

The flip side of this benign role is The Angry Crip, embodied by an ex-coworker of mine nicknamed Angry Man. Angry Man became disabled in his teens, and was in his late 20s when we worked together. He is a quad and used a manual chair at the time. He would glower and practically spit on people who held the door open for him. He literally punched a hole in the wall one time (good upper body strength).

(In my experience, it is men in manual chairs who are most likely to be insulted by the door being held open for them. No crip female that I know is angered by this. It is irritating when the door holder then stands in such a way that you can't go in/come out, but that's coping with incompetence, not hostility. To me, whether I'm holding the door for someone else, or having it held for me, it is an instance of courtesy -- dare I say it, consideration -- not an implication of inferiority or lack of inherent worthiness on my part. I think this whole door-holding issue is a mutated and unhelpful remnant of the woman's movement of the '60s and '70s.)

Which Leads Me To...

The workshop and book I got at the Abilities Expo a couple of weeks ago, Persistence is Power!, by Jeanne Lazo and Carol J. Amato. The premise of the book, based in part on the real-life experiences of Jeanne Lazo, is that it is extremely difficult to navigate the system of Social Security, Workers' Comp and private disability insurance and that they (those entities) are out to keep you from collecting your benefits, regardless of how deserving you might be. Among other things, "persistence" refers to the fact that most applications for benefits are denied, as a matter of course, often for the first 2 or 3 rounds. This is a tactic which counts on the fact that a certain percentage of people will be daunted and demoralized and give up, regardless of the validity of their particular situation.

I believe this premise is absolutely correct, and if I have any issues about either the book or it's title, it would be that they are not strong enough in getting across just how great the desire is, societally, to prevent people from getting that which they have been led to believe they are entitled, by virtue of becoming too disabled to work.

Jeanne tells her own story -- which was the impetus for writing the book -- of how she struggled, literally for years, to get her own benefits when she very unexpectedly became disabled in the middle of a successful career. In person, Jeanne is articulate, perceptive and kind. She has been through hell and has managed to remain a nice person who isn't crazy.

Big and Easy to Read

The book is laid out in a large, workbook-sized paperback format. The beginning chapters cover some of the realities of becoming disabled -- sort of the threshold issues one faces before tackling the insurance and benefit aspects of disability.

The book then goes on to describe the courses of action one must take in an effort to receive the benefits designated for their category of disability (meaning, permanently disabled -- never worked, newly and permanently disabled -- after having worked, etc.). It has checklists, tips and resources.

Painstakingly Researched

Jeanne Lazo said she researched this book for four years, and always points out, in appropriate places, that a particular rule/regulation was in place at the time of publication, but that the reader should make sure that this hasn't changed in the meantime.

The book has useful lists, checklists and action items for the reader to take, if they are currently in the process of trying to secure their benefits.

Action Item for Everyone

One thing that Jeanne mentioned, both at the workshop and in the book is that it took her over a year to obtain a copy of the disability insurance policy that she had through her employer. When I heard this, I was immediately reminded of how hard it is to find the clauses pertaining to "durable medical equipment" (DME) in the health insurance policies I've had through my employer.

Considering the reams of information that is available, especially during "Open Enrollment", if you work for a large employer that offers more than one type of health plan, it cannot be an accident that the comparison charts mention nothing about DME, co-pays, etc. My morally ambivalent Wheelchairs and Wing Nuts guy knows more about expenditure limits, frequency of purchases of new equipment, etc., than I do for my health plan, and that isn't because I haven't tried to find out.

You may be feeling perfectly fine (for you, that is), but make it a quest to get a copy of your disability insurance policy. One of the big pitfalls of some policies that actually plays into many people's guilt at needing to stop working is this: under many policies, your benefit is based on your most recent salary. If you try working 1/2 time or less, and your salary is reduced accordingly, then your benefit may be based on a salary far lower than it was before you became disabled.

By trying to be a "good citizen" and attempting to work part-time, you may be screwing yourself out of hard-earned benefits.

My Message

I tell the crips with whom I work that "you don't get extra points for suffering". While this might sound like a glib little homily, it is actually something I realized a few years ago. American society is still deep in the thrall of the idea that suffering and making-do and "sucking it up" is morally superior to a reasoned inventory of one's abilities and disabilities, pain, stamina, etc.

Not only do we prefer to see people performing at the absolute outer limits of their tolerance, but when they finally say, "I give", we then make it incredibly hard for them to ease up. So much so that the natural inclination of the newly disabled/more disabled person is to be apologetic and tentative about asking for accommodations that are entirely appropriate to their situation. DON'T DO THIS!

Approach any request for service or benefits in as businesslike a manner as you can muster. Present your documentation, your situation and your request in a straight-forward way. Be polite, but matter-of-fact. Study up (if needed) on what they can and can't ask you about your disability, your functionality, etc.

How to Get This Book

Persistence is Power! is available from Stargazer Publishing Company, www.stargazerpub.com, ISBN: 0-9713756-0-7. It is a great resource book for professionals, as well as individuals trying to get through the benefits maze.

In the back, there is a blurb for a new book, supposed to come out in 2006, called Jumpstart Your New Life! A Real-World Guide to Help You Return to Work After a Disability. Based on persistence is Power, I imagine that the new book will also be carefully researched and full of useful tips. Having outlined books on disability myself, it is no surprise to me that the authors discovered that there were at least one other book's worth of material that needed presenting.

A Word on Dieting -- Or Not

2005-12-04T17:34:00.000-08:00

(This is not the promised "next post", but just a quickie comment on an article I saw today.)

"Intuitive Eating"

I read this article today: http://news.yahoo.com/s/ap/20051204/ap_on_he_me/fit_intuitive_eating.
I point it out because it is the first clear description of what I've been doing for about 5 or 6 years now.

Losing 5 pounds a year, instead of gaining same

I've always been overweight. In addition to liking to eat, my weight issues are complicated by the fact that my disability prevents me from doing most forms of exercise that burns calories. Since I don't sweat properly, "sweatin' to the oldies" is a road to heat stroke for me.

But about 7 years ago, I saw a picture of myself with my new kitten at the time and was horrified. I had no chin, but rather a blob of head on top of a bigger blob of my body.

I am proud to say that today, I have a definite jawline and chin, sagging with age though they may be. I am still a chubbette, to be sure, but I have turned the direction of the trend to loss and maintenance, rather than creeping gain.

Counted Calories and Fat Grams; Drew the Line at Carbs

At first, I counted fat grams, 'cause that was what was in vogue at the time. Eventually, I went back to counting calories, supported by the periodic interviews with nutritionists that I read, who said, "it's calories in, calories out", period. And over time, I did decide I could have anything I wanted, but did try, as mentioned in the above article, to not eat when I wasn't hungry (this can be a problem if one is depressed and never feels like eating, but that's another blog).

I do sometimes have Dulce de Leche ice cream for dinner. But sometimes it is green beans and rice (with butter and salt). There is a bag of Double Stuff Oreos in the drawer in the kitchen, but it has been there for 4 months or more (the same bag, that is).

Weight is a Crip Issue, Too

Body weight and body image are HUGE (no pun intended) issues for people with disabilities, and more so for women than men. Women with visible disabilities are often dealt a set of circumstances that are the antithesis of the current popular hype on what sexy, successful women are supposed to look like. I'm talking completely unattainable, at the far end of the not bloody likely scale that non-disabled women are faced with.

To add deprivation and food-guilt to that burden strikes me as asking too much [more] of us women crips. As if we don't have enough crap thrust upon us on a daily basis.

So...Think about this "intuitive eating" concept. I try to balance calories, and nutrition -- you can be overweight and still be relatively healthy. Above all else, take care of yourself, think long-term, and don't jump on every fad that comes along. The thing about the "intuitive eating" idea is that it is focused on each individual's needs and wants, not on some idealized model that seldom occurs in nature.

Chronic Pain Kicks Crip Ass

2005-11-30T17:36:00.000-08:00

Not to put too fine a point on it, I've had chronic pain my entire life. I was born with this rare genetic skin disorder (EHK - epidermolytic hyperkeratosis) that makes the body produce too much skin, and then the skin cells don't break down properly.

This results in flaking and callousing, and blistering on the feet if I walk very much. Actually, blistering anywhere that gets too much friction or too much repetitive motion (like riding a stationary bike, which gave me blisters behind my knees), because those of us with EHK also don't sweat properly. We overheat.

Time will Tell

Back in the day, I got a lot more blisters -- partly, I think, because everything the dermatologists told me to do made my skin worse: take daily baths, cut off all the excess skin, and grease yourself up. These instructions made for a nice breeding ground for bacteria -- I also got a lot more skin infections back then.

Not to gross anyone out, but the "extra" skin on my body doesn't dry out properly either, if I take daily baths, so more bacteria and more odor.

I also got more blisters because no one thought to get me a wheelchair, so I was forced to walk, and walking = blisters.

I now pretty much do everything contrary to the docs advice. I get wet as little as possible. I use a wheelchair except in my home (because I need to save up for a ramp). I don't grease myself up every night.

Post 40 Syndrome

You may have heard about post-polio syndrome. It is the evidence that polio is the gift that keeps on giving. People who survived polio in their childhoods find new symptoms and difficulties arising in their 40s and 50s -- fatigue, pain, respiratory issues...

A couple of years ago, when I mentioned to my dermatologist how my skin was changing, and how I thought these changes must be related both to aging and also to hormonal changes associated with aging, he said sagely, "Huh?" Like, "that's interesting." Yes, I said, my skin seems to be getting thinner, and it hurts, like I have tiny fissures, all over. "Huh," he said.

The only suggestions he had harkened back to the advice of yester-year, and how they told my parents to take care of me when I was little.

Thanks, Doc.

Studies Show: Chronic Pain Shrinks Women's Brains

A few months ago, I saw an article at Third Age or Web MD that a study showed that women who had chronic pain also showed evidence of their brains shrinking. Swell. Can I say I'm cranky because I'm in pain, under treated for that pain, and keep getting headaches from my brain rattling around in my skull?

Take Away Message

In addition to a whine fest, I wanted to point out that many, many different types of disability feature that perk, chronic pain. My impression is that chronic pain in general is very unevenly addressed by our doctors, and that many of us just live with it.
Being in pain and just "sucking it up" also takes a lot of energy. Keep this in mind if you are one such and can't figure out why you're always so tired. Or maybe you have a significant other who is a crip who's always tired.

I think it is one of the biggest challenges that we face, us crips, to find a balance between expressing how we honestly feel, and not taking out our bad day on other people. I am trying to tell the people I trust that "I feel like crap", when I do, without being shitty to the people around me when I do.

Because, I work with other people who are in chronic pain, who don't necessarily say when they feel crappy, but act extra nasty, just to throw out a clue. The trick is, though, that if you're going to just act bitchy it helps if your disability is hidden.

The real anchor around your neck, if you're a crip with chronic pain with a visible disability is that if you either act bitchy or tired, or weak -- you're reinforcing the stereotype that you can't do the job, because of your disability. (Nevermind all of the people we work with that call in sick for a hang nail -- you've worked with them, haven't you?)

Except that, if you say, "okay, I give, I'm too disabled to work", the cards are stacked mighty high against you if you want to stop working and get SSDI and/or private disability insurance payments. More on that one next post...

Abilities Expo -- Northern California; Trickle Down Your Back Economics (as in, "Don't Piss Down My Back and Tell Me It's Raining")

2005-11-22T13:26:00.000-08:00

I always think that "Abilities Expo" isn't quite the right name for the event. Strictly speaking, "abilities expo" sounds to me like it should be a bunch of people saying, "and I can do this! Ta da!" Showing off their abilities, as it were.

An "Abilities Expo" is more like a Boat Show or a Car Show -- booth after booth of people selling stuff for the enthusiast. Only in this case, the enthusiasts are crips looking for the latest and greatest equipment, and crip friendly products.

Who Will Buy My, uh, Snake Oil?

I went to the Abilities Expo in Anaheim in June 2005, so going to the one in Santa Clara this past weekend was a little soon for me. But, I had a particular mission this time -- more about that in a minute.

I think the show in Anaheim was bigger, from both the perspective of the number of vendors and from how many workshops there were. (I'll be doing a separate column about the workshop I attended.)

What I noticed more in Santa Clara was the "snake oil" sales booths seemed more numerous. The "snake oil" came in four categories: wonder drinks, wonder vitamins, wonder lotions, and wonder appliances that free you from pain by accupressure. I wonder who buys that stuff.

I actually think I know who buys it: people who are desperate. They are often in pain and aren't receiving adequate conventional treatment for that pain, whether physical or psychic. I like to think that they can afford to drop a couple of hundred bucks on this stuff, but I'm sure some of them can't.

Now How Much Would you Pay?

Me with my genetically caused skin condition was probably not the ideal recipient of the hard sell pitch I got at the "wonder lotion/cream" booth. They had a "special show price" on an 8 ounce jar of the stuff for $40; the next smaller size, around 6 ounces, was $30. With the purchase of either of these, you got a "travel size" (.5 ounces) for free. But you couldn't buy the travel size.

I tried to talk the hard-sell girl into giving or selling me the small size to try. Her hard-sales objection was that the small size wouldn't be enough product to "cure me". I told her I was only wanting to see if it was a good moisturizer -- that was the most I was hoping for.

She stood her ground -- much to her discredit in my opinion. I was hardly the average customer for skin cream.

"You're just too shrewd for me!"

So, my mission was to scope out lightweight power chairs, for travel purposes only. The scooter I bought last year -- I just don't like it.

I'm looking at the At'm by Invacare. I had spotted it online, and wanted to get a gander at it in person, and see if there was anything better -- and affordable -- out there.

At the Wheelchairs and Wingnuts booth (see http://teriadams.blogspot.com/2005_08_01_teriadams_archive.html), I saw my pal Cedric, the owner. He gave me a free t-shirt, which seemed only right considering I've probably (including insured purchases) spent nearly $20,000 at his shop over the years.

He had an At'm sitting right there. After assuring him that a) I only wanted it for travel, as it really isn't built to take steady, daily use; and b) that I would be buying it with my own money, after Jan. 1st, he said he thought it was a good chair for travel purposes.

I asked him how much, knowing that I had seen it online for $1,395, including shipping, no sales tax. He thought about it and said, $2,500. At least he didn't say, "Because you're such a good customer, I'll only rip you for $1,100."

So I said, "2,500? Really. I've seen it online for $1,400."

"Are you sure it wasn't a Chinese knockoff?"

"No, it was an Invacare."

He looked somewhat dismayed. Finally he said, "Well, call me and we'll talk."

I said, "If you want to talk about $1,400, out the door. Otherwise..."

"You're too shrewd for me."

Take Home Message

Don't buy anything pricy at an Abilities Expo-type event unless you've already priced the item and know real numbers about what the equipment costs. Dispel any lingering naivete about, "they wouldn't rip off disabled people" thoughts. Just forget that. In fact, because people are desperate in many cases, and not up to speed with things, the vendors are more likely to rip you off because you might never figure out that they ripped you.

Snippets from the Kitchen

2005-11-20T10:30:00.000-08:00

To Grind or Not to Grind

So I bought these little disposal grinders/spices because they were on sale. McCormick makes 'em. One was "garlic pepper" and one was sea salt. Like I said, they were a buck a piece from Safeway.com.

I can't use 'em because they kill my hands. I think I might be able to use them if I put on rubber gloves (like the ones you wear to wash the dishes, if you're not fortunate enough to have a dish washer). But, donning the rubber gloves to season my chicken wings doesn't appeal somehow.

By the by, those rubber gloves increase your grip strength a lot, if you're doing something where the trusty jar opener doesn't help.

So, I'm going to give the little grinders to my sister, who cooks more than I do anyway.

Yes, I know there are other ways, tools to grind spices -- I'm not that interested, this was strictly a whim. Although it would have been cool, if I had been able to use a little grinder, off the shelf, for a buck.

When did Sara Lee Take Over the World?

All of a sudden, I'm aware of Sara Lee having way more products out there than I expect to see, including all manner of bread.

Most of my efforts at self-improvement are contingent on the effort being relatively painless. Hence, I have checked out both the Wonder Bread and the Sara Lee varieties of white bread that is "whole grain". If I understand the "experts" correctly, "whole grain" is what's good for you, "whole wheat" can be misleading, in that it can be no better for you than regular old white bread.

The Sara Lee "soft" white "whole grain" bread is good stuff. Makes good toast anyway. I'm on a kick of putting honey on my toast -- not because it might be slightly more healthy than jam, it is just a phase I'm going through.

The Wonder Bread equivalent (and I am a life-long eater of Wonder Bread, particularly for peanut butter and jam (not jelly) sandwiches) is nasty. Cardboard like. Don't buy it unless you're into small, bread-shaped frisbees.

I Won't Convert

My mom is a good cook. I never really realized how good until I was about 12 and ate dinner at a neighbor's house. The neighbor was a perfectly nice woman, but a lousy cook. It made me feel sorry for my friend, the daughter of the bad cook.

I grew up on Uncle Ben's Converted white rice. In the intervening years, I have learned that other types of rice, including brown rice, are better for my health. I don't care, I don't like brown rice.

The latest incarnation of Uncle Ben's, called "Ready Rice", is great, particularly for crips. It's about 2 servings (as a side dish), one serving for me, as I usually use it as a base for a bunch of broccoli or string beans. You nuke the package in the microwave for 90 seconds, and you've got perfect rice.

Yes, at $1.99 a package, it isn't the most cost effective way to eat rice. I understand this. But, given my typical alternatives of 1) a Stouffer's entree, which can be between $2.50 - $4.50; or 2) fast food, average $5.00, I'm still coming out ahead. Plus, I'm eating it with real vegetables (with real butter and salt).

Elegan by Rubbermaid Gets me Steaming

This is a great steamer for the microwave. It is sturdy and doesn't feel like you're getting a nice extra coating of plastic on your food. I've used it mostly for steaming broccoli and cauliflower, my favs. It is also comes through the dish washer like a dream.

This is the perfect example of a crip friendly piece of kitchen equipment. "Crip friendly" because as long as your microwave is set up at a good height for you, you can do most of your cooking in it sitting down. What really makes microwave sit-down cooking work for me is having a lot of counter space free to set hot things down, stirring, switching dishes and the like.

Dresser Drawers and People With Disabilities

2005-11-06T17:45:00.000-08:00

The Question

I received this question in an email from someone who was referred to me at work:

"I am trying to accommodate a grandparent who no longer has the ability to open a dresser drawer by hand and would like some sort of solution that would allow her to do that. Is there some sort of generally available technology to motorize the drawers or attach a foot pedal or something like that?"

The first notable aspect of this question is that I've never heard it before.

How to Think About It

The immediate answer is that I've never heard of nor seen a dresser with powered drawers.

I do know of stove tops and counter tops, and even kitchen cupboards that are motorized so that their height is adjustable. I know of large motorized file cabinets that have Ferris wheel-like arrangements inside that bring an entire shelf of files to a convenient height to avoid reaching and stooping when doing filing.

I spent about half an hour on the web looking for "automatic drawer openers", and the only things I found were garbage compactors that had a foot opener option.

So -- the initial answer would be, "No, I don't know of any available technology like you describe."

But, my question is, "What is it about opening the dresser drawers that causes difficulty?"

Dressers I Have Known

I had a dresser (still have, actually) when I was a kid that has six drawers and stands about 5 feet high. The drawers slide in and out pretty easily, unless they are overfull. There is a handle on each side of the drawer (that is, 2 handles per drawer). They are horizontal handles that lift up, that you can wrap your fingers around. They provide pretty good leverage, and only hurt my fingers if my hands are already sore for some reason.

I have also used dressers where the drawers do not slide easily, regardless of how much stuff is in the drawer. Sometimes, the handles that are on the drawer are difficult to grasp, because of their shape or size.

I don't use dressers all that much because I don't like standing in front of a dresser stowing things, or searching for things.

First Idea

Find out why Grandmother is having difficulty with the dresser.

Are the drawers sticking? Is the handle hardware too small, too awkward? Could the drawers be oiled or adjusted to slide better? Would different handles be helpful? What about tying tassels on the drawers? Would pulling on a rope/tassel be functional for Grandmother?

I have a newish dresser from Ikea, and the drawers slide very, very easily. There is one handle, right in the center of each drawer, and you hook your fingers underneath the handle to grasp it. The edge that hits your fingers is a little sharp, and if my fingers were a little more sensitive, it might be a problem. If that was the case, I would look into replacing the handles, because the drawer slide aspect is really great.

Second Idea

Think about the function of a dresser. To store clothing and other personal items, right? Would shelving serve the same purpose?

Just this year, I have started storing a lot of my everyday clothing on the shelves of what used to be a bookcase. I've also used this shelving, in the past, in a kitchen that had too little cupboard space. (The shelves are Swedish -- look at www.holdeverything.com. I have no affiliation with their site.)

There is a wide variety of shelving out there, in every price range. You can also get shelving shaped like cubes, and you can get baskets to use with the shelves, so that you can put things in the baskets, and then slide the basket out part-way -- a little drawer-like in usage.

I like the shelves in lieu of hanging things up, because I don't like standing at the closet. I can sit and use the shelving, particularly if I don't use the highest or the lowest shelves, except for items I don't use that often. This is also working for me because I pay someone to help me with my laundry, and she arranges my stuff on the shelves for me.

The Answer and The Lesson

So -- no, I don't know about motorized dresser drawers.

I suggest that the problem be approached from 2 directions:

What does Grandmother use the dresser for, and can the dresser be replaced by a different type of storage system/furniture?
What about the dresser has become problematic? Can this be solved by getting drawers that slide more easily or different drawer handles?

I hope this is helpful. Let me know how it works out.

Shopping Online: A Crip's Dream Come True

2005-11-06T16:43:00.000-08:00

Ho Ho Ho

We are approaching the worst time of year to cruise through a store if you use a wheelchair, or even a cane or a walker.

Even stores that are usually very accessible (Crate and Barrel comes to mind) put as much stock as possible out at the end of aisles and you can end up getting stuck or having to back up. Sometimes you just have to avoid whole areas of a store.

Depending on the day and the store, it might be full of shoppers milling around. Many times, these shoppers will, without warning, come to a complete standstill -- in an aisle, in a main store pathway. If you use a wheelchair, you often can't get around them. If you're like me, your cloak of invisibility clicks on about then, and amazingly, they don't see you.

Nor do the people who almost impale themselves on your footrests or push handles.

It's a hassle and I hate it. The only kind of shopping I can really get into, even during the holidays, is in a bookstore, and those also become pretty impassable.

Cyber Shopping

For the last 4 or 5 years, I have done almost all of my holiday shopping online. If you're judicious, you can usually avoid sales tax, and shipping. Sometimes, even gift wrapping is free -- other times, it is a couple of bucks a present, which may be worth it, if you hate wrapping stuff as much as I do. (Gift bags are another great way to avoid the wrapping hassle.)

My Christmas Eve tradition is going to my parents' house with friends and family. We have a nice dinner and exchange presents. The last couple of years, I have had most of my gifts wrapped and shipped to their house so I don't have to haul them there. This has worked out GREAT! No shlepping, no shopping (except at home in the comfort of my recliner), no wrapping.

Ebates

When I really started spending a lot of time on the internet about five years ago, there were a lot of companies that were trying to cash in on the geometric growth of internet shopping by opening "cyber malls", starting shopping clubs, you name it. I signed up with Ebates in December of 2000, but didn't really start using them until Spring of 2004. Since then, I've received $133 in rebate checks, and will be getting about $55 this quarter.

You can join at http://www.ebates.com/rf.do?id=1935512. (Yes, I will get a one-time $5 referral bonus if you use me, Teri Adams, as your referrer, if and when you spend money through their site. You will also get a $5 signing bonus, once you've used them.)

You just have to remember to go to their website (aka as the portal) to start with, and then click through to the merchant you want. They are up to over 800 merchants. You can even get rebates from Expedia, rental cars, hotels, eyeglasses, and wheelchairs through the Ebates merchants.

Some merchants don't do rebates but have coupons through the Expedia site for discounted shipping or special sales.

Groceries, Too

I have kitties, and carrying litter or bags of dry food is really hard for me. This applies to cases of soda, bottled water and a lot of stuff most people buy at the grocery store.

I still get a little choked up at the memory of Webvan, still the best grocery delivery service I ever used. When Webvan died, I switched to Safeway.com. They have various prices for delivery, depending on the time window you choose, and how much your total comes to. You can use your discount card, just like you would in the store, and their site has a feature where you can search for sale items.

I end up spending ten bucks a shop at Safeway, and do it about twice a month. When my brand of soda goes on sale, I can stock up; ditto cat food and litter. They even carry in the case of Duraflame logs I buy with glee.

The downside of doing your grocery shopping this way is that you don't get to pick your veggies yourself. The upside is that it dramatically reduces the impulse buy of candy, chips and cookies. You can even go back and revise your order up to about 24 hours before delivery.

I think that home delivery of my groceries has been one of the most important elements of living alone with a disability. Even if your home cooking is largely Stouffers and microwave popcorn (I often resemble that remark), it is still cheaper than eating all of your meals out. And it is way cheaper than getting someone to come and cook for you, if you can do the basics yourself; microwaving and loading the dishwasher.

Balancing Your Choices

Older people especially (I am guessing here, but feel it to be true) balk at paying ten dollars "extra" to get their groceries delivered. But you gotta look at the big picture. What you're buying with that ten dollars is independence, freedom from having to get someone to go with you and help you do your shopping, or depending on the kindness of strangers.

I order twice a month partly because I can keep myself in 1% milk by shopping that often, without running out, wasting it, or having it go sour.

If you stock up when your favorites go on sale, you can save enough to make up for the delivery fees. On the order that I had delivered on Friday, I saved 14%, and got up to 20% savings on the order before that.

Another Form of Assistive Technology

I don't think it is hyperbole to say that using computers and internet shopping intelligently is another form of assistive technology for people with disabilities that hamper tasks like shopping and shlepping. At least try it a few times, before drawing conclusions.

Cool Crip Culture -- Product Review #2.75

2005-11-06T00:50:00.000-08:00

I love coffee, and am hooked on the good stuff. I like it pretty strong. I have a coffee maker that makes about 4 cups (mugs) of coffee at a time by drip, into a thermal carafe. It makes good coffee, but I always end up wasting some because I don't generally drink 4 cups all at once, and it just isn't as good reheated. I know you're supposed to be able to make just a couple of cups at a time -- but it's difficult to get the coffee/water balance just right unless you make a full pot.

So, I was pretty psyched when I heard about the single cup machines when I started seeing them advertised about eighteen months ago. I don't know that they've caught on, but I love mine. It is very crip friendly.

Crip Usage

I'm lucky that my current abode has a lot of counter space. I would, however, keep this on the counter even in a limited counter space situation because I use it almost every day, and often twice a day or more. You can also make a cup of tea with it.

So, you fill up the water tank and place it on the back of the machine. I've heard that you'll get leaks if you overfill the tank, so I haven't tried overfilling. Hence, no leaks. After I determined that I loved the machine, I bought the larger water tank that's available, so I don't have to fill it as often.

The machine comes with a one pod and a two pod holder. All of the single cup makers define one cup of coffee as 4-6 oz. I define a cup of coffee as at least a 12 oz. mug. So I pretty much always use 2 pods, and get a nice strong mug of coffee.

You can, however, get a mug of medium-strong tea out of one tea pod.

All of the removable parts of the machine go into the dishwasher (top rack), so no excuses to let it get groady.

I have a rolling office chair in my kitchen, from which I do most of my cooking, though I can stand if I absolutely need to.

So, I plunk myself down in the chair and push the power button. The power button flashes until the water is hot. Solid light means it is ready to go. While the light is flashing, I open the top, pull out the pod holder and load it up. You do have to be careful about making sure the pods are stacked right in the 2 pod holder so that you get a good seal when you clamp the lid down. (I read reviews of people complaining about leaks here, too, but I've found that if you use the parts correctly, no surprise leaks.)

You put a mug under the spout and push the two cup button to get your mug of coffee. Steam is forced through the pods and you get a layer of foam on top, which I happen to like.

OCD Shopper

I researched the hell out of these machines when they came out. I had bought a regular thermal carafe maker a couple of years ago, despite finding lukewarm reviews about the machine, and HATED it. So, I thought I would try to avoid another shopping mistake.

Melitta also makes a pod single serving machine, and I think a couple of other makers do as well. I can't say that the other machines are bad, only that this Senseo one by Phillips is really great, and I've been using it for about a year with no problems.

My Favorite Pods

I like really strong coffee, and the only pods I've found that are strong enough for me are these:

Obviously, you don't want to buy a ton of them until you try them out. I've found the Douwe Egberts brand everywhere, from Longs to Safeway. I believe Home Cafe pods are also compatible, but be sure to double check. There is also a website called www.podhead.com if you feel adventurous.

Through Amazon, I also found a brand of tea that makes pods that fit perfectly in the single pod holder:

My guess is that most round tea bags would fit, but I haven't experimented much.

Take Away Message

As long as the water tank is filled (I have short arms and my counters are a little high, so I really need to stand up to fill and load the water tank), I can sit and make myself a great cup of tea or coffee with this machine. I keep my mugs in a lower cupboard with a pull out shelf, so I don't have to stand and reach for cups, either.

Everybody has to find the best way to do things for themselves -- and there is often a lot of trial and error involved. The point is that you need to be creative and willing to try new things. Sometimes, you might make a mistake and buy a tool or try a method that doesn't work at all for you.

If that happens, ditch it and start over, but incorporate what you've learned. And remember that the most expensive way isn't necessarily always the best.

If you're doing the math, I figure that each cup of coffee costs me about 50 cents. I have spent 3 times that at Starbucks for just coffee. And when I was making coffee by the pot, the per cup cost was probably less, but I wasted a lot of coffee...

Drink long and prosper.

Cool Crip Culture -- Product Review #1

2005-11-02T20:49:00.000-08:00

Intro to the Idea

When I started thinking about what I could put on the web related to disabilities, one of the things I was interested in was talking about "crip friendly" products. I will only be endorsing (or criticizing) products of which I have personal knowledge.

Other entries about "Cool Crip Culture" will include books and movies, as well as services.

Full Disclosure

I've signed up with Amazon to get these links, and I'll get a 5% commission if you buy it through my link. Which will come out to 35 cents in this case. You can also easily avoid my minor entrepreneurial impulse by buying it somewhere else, or through another vendor.

The price of my soul is considerably higher than 35 cents, so I hope you believe me when I say I wouldn't recommend anything I didn't absolutely believe in, through personal experience and/or use.

Through the comments feature, feel free to let me know if you hate a product I've recommended. Or, if you like it.

Open Up!

I like this jar opener by OXO so much that I have one at home and one in my desk at work. I'd really like to get another one, for my nightstand.

I'm not a huge consumer of food that comes in jars, you understand, but these little babies also are great for opening drinks -- bottled water, flavored waters and sodas, and "new age" soda/juices like Sobe. If you don't have much grip strength, for whatever reason, this is a great help.

They are also very well made, and have the OXO "good grip" surface on the handle. Hard plastic would kill my hands.

Downside

The only caveat about this opener is that you also need to have a fairly good grip on whatever it is you're trying to open. I approach this is a variety of ways. If it is a bottle, I often grasp it between my legs and with the hand that isn't using the opener.

If it is a big, fat jar, I use a rubber glove on the hand that isn't using the opener, to increase my ability to grip the slick surface of the jar without killing my hand.

Other Openers

I tried several different openers before I found this one about 4 years ago.

One kind is bolted to the underside of your cabinets -- you jam the jar lid against the teeth of the opener and turn the jar. I don't know if it's because I'm weak, or short or awkward, but this method almost never worked for me, and often resulted in my dropping the jar. And hurt my hands.

Another type is sort of funnel shaped, with a soft exterior, or with a soft interior surrounded by hard plastic. You hold this in your hand and place the whole thing on top of the lid. It is supposed to increase your grip strength. I almost never got anything open, and the hard plastic especially killed my hand.

Why This Works, For Me

Leverage!

The combination of the length of the handle, and the size of the "pie wedge" part of the opener where the teeth are, really lets you transfer the strength needed to your arms instead of your hands and ability to grip.

A Small Thing, But...

Oh yeah, I also want one to put in my suitcase. Have you ever been in a hotel room, eating room service food, and you can't open one of those little condiment jars of ketchup or mayo or jam or honey? I've been so frustrated by that one that I've wanted to throw the little mother through the window!

It All Adds Up

What I know, at the advanced age of 48, given a lifetime of notable disability, is that every little thing you can do and find that makes life just slightly less hassle takes away a tiny bit of the sting of the big things you can't change. Yet.

The Best Ad Ever!

2005-10-26T16:26:00.000-07:00

One of my best friends sent me this link today. Her email subject was "the best ad ever", and I share it because I agree.

I'm posting this link pretty much on its own because I want people to see it before the link stops working. If anyone can translate the French for me, please let me know what the titles are.

I've always thought that when you see crips in ads, on TV, in movies and in cartoons (ala John Callahan), it will be evidence that we are beginning to make in-roads into the mainstream culture.

Check it out!

http://www.ad-awards.com/inc/video.swf?id=104

10/27/05

per comment from Rebecca, translation of French in above commercial:

Woman at counter: Hello, I would like to open an account.

Writing: The world is harder when it's not designed for you

Voice-over/writing: From now on, the EDF areas are accessible for everyone

Voice-over: When your life lights up: EDF

EDF=Energie de France - National electric/power provider

Thanks, Rebecca!

Down in Front, Part Deux

2005-10-24T14:51:00.000-07:00

Last weekend, I went to a concert at the legendary Fillmore in San Francisco. I had been there once before, in the '80s.

There's an elevator, which you reach through a wire fence and a creepy alley. The elevator is tiny, and paneled in some weird fake blond wood. It was so slow that the movement between floors is almost imperceptible.

They have a few small cocktail tables set up along the wall opposite the bar. There's a padded bench for people accompanying crips or people who can't either sit on the floor or stand for 2-3 hours. We sat at one of these tiny tables.

The concert was at 8pm -- we got there at 7pm so that we could get something to eat. They have "pub food" -- it was good, but here's a tip: don't order the nachos if you think you might have to eat them in the dark.

As the venue slowly filled up, people were sitting down on the dance floor in front of the stage -- there were no seats of any kind. Upstairs (not accessible by the elevator) there were balcony seats where you could look down on the stage. This is where you would want to be, if you had the ability to get there.

When the concert started, everyone stood up. Fortunately, I had only paid $25.00 for my ticket.

This was a Dar Williams concert. Prior to this concert, my Dar Williams exposure consisted of listening to some of Dar's acoustic music on a CD that my friend had burned for me. Most of the music at this concert I would characterize as "rock", and the room didn't seem big enough to accommodate the volume of the electronic instruments.

The audience was almost entirely white, and I would guess the average age to be somewhere between 35-40. I found it ironic that most people were forced to stand throughout the whole concert. This was not a group that was rocking out and dancing -- they simply had no where to sit.

This audience was a group of people who are rocketing toward senior citizen status. That doesn't mean that they want to stop going to concerts, but they don't necessarily want to stand for 3 hours, nor do they want their ribs to be vibrating from the volume of the music.

If he was alive, the legendary Bill Graham would be a senior citizen. Don't concert promoters need to start thinking about providing different facilities/amenities, depending on the audience that's likely to attend each concert?

And no, I couldn't see a thing.

Down in Front

2005-10-12T15:38:00.000-07:00

From the NY Times, another classic tale of life in Cripland:

A Ticket to Bias

By SUSAN M. LoTEMPIO

Buffalo

I WAS 15 when I first saw the Beatles in concert. That was 1965, long before the Americans with Disabilities Act, so wheelchair seating was rather unpredictable. Lucky for me, the ushers at Toronto's Maple Leaf Gardens pointed me to the front of the arena and told me to stay there.

"There" was right under Paul McCartney's amplifier. A perfect place to be.

"There" last Friday night at Madison Square Garden, 40 years later, was third row on the floor, a few feet away not just from his amplifier, but from Sir Paul himself. An opening night dream seat, you might assume.

Actually, it was a seat from hell.

The ticket was a Mother's Day gift from my 20-year-old daughter. She and my niece scraped together $278, contacted the Garden's disabled services office, and gave me the best gift I've ever received.

Like the thousands of others there that night, I expected a great show, and a great memory.

At the Garden, though, as I was being shown to my seat (a spot at the end of the aisle where a chair had been removed), I wondered if I would be able to see the stage if the fans in front stood up during the show.

Don't worry, the security guards assured me, they know how to handle the situation. I also asked a representative from the Garden's disabled services office. He said the same thing.

When Sir Paul came out and launched into his first number, everyone stood up, and all I could see was a wall of gyrating backsides.

Too close to the stage to even see the huge monitors overhead, I moved into the aisle to try to get a view. The security guard told me to move back. I asked him where I could go to see around the masses of bodies, and he ordered me to stay where I was.

I tried to remain polite, but that painful sensation I get when I'm being dismissed or patronized swept through me and I yelled back, "These tickets cost $300, and I can't see anything."

"Stay there," the security guard shouted, his face just inches from mine. "If you don't like it, you can leave."

He abruptly took off, returning with the guy from the disabled services office, who looked around and said there wasn't much he could do.

It was then that I snapped. More than forty years of having to enter restaurants through kitchen doors; years and years of being carried up the steps of public schools; and countless times being hauled onto airplanes like a baby in a buggy culminated in this one degrading moment. Who gave them the right to take my money and then take away the concert? Who gave them the right to make me look as if I had done something wrong?

And so I left the concert before the former Beatle had even begun his third song. Yes, someone did ask if I wanted to move to a seat up in the stands. I declined. Was there any other person at that concert - disabled or not - who would sit in the $100 section if her ticket had cost nearly $300? And yes, they did ultimately refund the ticket - but I wanted to see the show more than I wanted the money.

When I asked the Garden staff how they could, in good conscience, sell a ticket that afforded no possible view of the stage for a person who cannot stand up, their response was, "It's an old building."

What about the Americans with Disabilities Act and sight-line regulations, I asked them. Aren't you breaking the law? Again the reply, "It's an old building."

The final blow was when someone from the disabled services office accused me of swapping my ticket to, I suppose, get closer to the stage.

Later, I wondered what Sir Paul would say if he knew what had happened. His wife, after all, is disabled, and maybe she knows what I now know: No matter who you are, no matter how much money you have, no matter how many laws are passed, true equality remains a dream out of reach.

Susan M. LoTempio is an assistant managing editor at The Buffalo News.

http://www.nytimes.com/2005/10/07/opinion/07lotempio.html?oref=login

Survey Sez...

2005-10-11T09:58:00.000-07:00

Ok, I need some help here, folks. Any insights would be useful.

Does anybody out there have a "coach"? As distinguished from a "therapist" or a shrink? If so, does anybody discuss disability issues with their coach?

Does anybody know a coach that understands disability issues?

My perception is that coaching is a rising phenomenon, and that it does serve a legitmate niche. My further perception is that most "life coaches" need to have some expertise in disability issues because they've gotta be serving the Boomers, and Boomers are about to be (if they aren't already) hip deep in disability/crip issues.

Anybody?

Crip Tip #1 -- Don't be poor.

2005-09-27T13:20:00.000-07:00

If you have a physical disability, it really sucks to be poor. And, if you're well-off, by whatever standards you care to impose, good services and appropriate equipment can make quantum differences in a crip's quality of life.

You may be saying, "duh". But I mean that it really does suck more to be poor if you have a significant physical disability, and it can even become, literally, a matter of life and death.

By disability-standards, I'm wealthy, and I still can't afford a ramp van and have to postpone and somehow finance putting a lift or a ramp on my mobile home. [The city in which I reside has a program through which they will put a lift or a ramp onto your home for free, but my income exceeds the cutoff for this benefit. This is a not-uncommon Catch 22 of us "overachieving" crips.

I do have group health insurance which pays for a quality power wheelchair and its maintenance. I have this because I have a job in a large organization which can afford to offer quality (increasingly a misnomer) health care options to its employees. I have this job chiefly because a) I'm at the top of the persons with disabilities food chain in terms of experience and education; b) I got recruited for this job by someone (who decided I was Satan's Spawn later, but that's another story; and c) I'm really, really good at what I do.

And yes, I'm lucky.

So I lead into this article by Marta Russell, who published this on Znet:

http://www.zmag.org/Sustainers/Content/2005-09/25russell.cfm

Where's the Common Sense in this Entree?

2005-09-25T18:16:00.000-07:00

Rebecca (I Have No Blog, and I Must...Blog) sent me this today:

Food: Eat, Memory: Line of Sight By GABRIELLE HAMILTON from the NY Times Sunday Magazine of 9/25/05.

Ms. Hamilton's article is apparently an excerpt from a forthcoming book called "Don't Try This at Home." This article is an "essay" about her experience with an apparently blind applicant for a job opening in the restaurant she owns and in which she is the executive chef. I encourage you to click on the title and read the article before you read this blog entry.

I don't know whether Ms. Hamilton's actions were prompted by a) painfully sincere political correctness; b) painfully sincere pity for people with disabilities; c) painfully sincere ignorance of the laws governing the employment of persons with disabilities, which would explain her failure to ask the most obvious of questions. Or d) All of the above.

In summary, Ms. Hamilton gave the job applicant a "trail" -- essentially a try-out in the kitchen during a dinner shift. He was applying to be a line cook, and his resume indicated adequate and appropriate experience, according to Ms. Hamilton. She was also impressed with his education -- particularly in the area of philosophy -- and his manner on the phone.

When he showed up, the first thing she noticed was "...that he was blind. His eyes wandered around in their sockets like tropical fish in the aquarium of a cheap hotel lobby." Okay... Colorful description. Is this lurid description of the alledgedly blind job applicant supposed to convince us that Hamilton is not psychotically politically correct?

Gamely, Ms. Hamilton began the interview and found his answers to be appropriate; he knew the jargon of the restaurant biz. Then, when he was shown the menu, "[h]e held it up to his face as if to breathe in its written contents, to discover by inhaling what it said in plain print. I felt more certain than ever when I observed this that he was blind, but naturally doubted myself because obviously the guy had worked in restaurants, something that - though we may joke - really can't and shouldn't be done."

I copied the material in quotes verbatim from Hamilton's essay, and I'm not sure of her meaning. Is Ms. Hamilton saying that it was unreasonable of her to think he had a vision impairment at this juncture? Is she saying that she doubted her observations because it was her professional judgment that he had worked in restaurants before, and therefore, could clearly not be visually impaired? To what is she referring when she says, "something that - though we may joke - really can't and shouldn't be done"? I'm honestly unclear.

Let's break this down.

If someone has a visible disability, it is permissible for the prospective employer to ask the ostensibly disabled applicant specific, job-related questions as to how they will perform the functions of the job. For example:

"You appear to have a pretty severe vision impairment. Is the kitchen where you've worked in the past set up in a special way to accommodate your disability?"
Or, "The kitchen is, as you know, a very busy, crowded and dangerous place. Do you have special procedures or use special tools to do your job, in light of your apparent visual impairment?"
Or, "To be candid, you appear to be having difficulty reading the menu. If you have a vision impairment, then I need to ask you some questions about how you perform some of the essential functions of this job."

While it is true that it is illegal, under the Americans With Disabilities Act of 1990, to discriminate against employees or job applicants on the basis of disability, it is also true that an applicant with a disability must be able to perform the essential functions of the job at hand. The legalese term for this is that the applicant must be "otherwise qualified". Giving this applicant the benefit of the doubt regarding his ability to perform the duties of a line cook was absolutely the correct thing for Ms. Hamilton to do, both morally and legally. Speaking from my own experience, I would not assume that someone who was severely vision impaired - blind - couldn't job, but would have had grave doubts. That said, the disabled applicant must be "otherwise qualified" -- that is, able to do the essential functions of the job, "with or without accommodations", hence the questions I mention above.
Regardless of the guy's visual status -- the fact that he didn't disclose his situation, particularly and most especially during the "trail", was nuts and completely self-destructive on his part. The law doesn't require a job applicant to disclose their disability until such time as they want/need to request an accommodation, including during the application process [I always ask if the building is wheelchair accessible, before I get there, for example].
Example of "the right way" to approach a disability issue at work: A visually impaired computer programmer is hired by a company. When she shows up at work, she mentions that she has a visual impairment [meaning something more serious than the kinds of impairments the rest of us wear glasses for], and that she needs a screen enlarging utility on her computer. If she is smart, she will also have medical documentation of her vision disability (which the employer can require), the name of the screen enlarging utility she wants to use, and info about how much it will cost, compatibility info and purchasing info. (This last is not necessarily her responsibility -- the employer has an affirmative responsibility to help a disabled employee figure out their accommodations -- but the reality is that if you don't have your shit together, your job viability is going to be severely limited by factors other than their initial disability.)

Ms. Hamilton handled this situation abominably, whatever her "well-intentioned" motivations. Her politically correct programming clearly overcame her innate intelligence and business acumen. (I'm assuming that she has the latter, if she's running a successful restaurant...) She seems to know that she handled it badly, but it is unclear to me if she understands the decision points at which she could have done things differently, and that this guy also screwed up, and not just because he had a disability and shouldn't have applied for a job to work in a busy kitchen.

The other bad actor was the blind guy. I'd love to know his story. Maybe his resume was legit, and he had had the experience he claimed to have. Maybe he had multiple sclerosis and was experiencing an exacerbation that was taking out his vision, suddenly and unexpectedly. It was still his responsibility to cop to it -- either before or at the very beginning of the "trail". Maybe he had lost his vision to diabetes, and hadn't come to terms with the extent to which he was now functionally limited. Who knows?

Maybe he lied about the experience on the resume and was trying to land a job and get his story straight later. If he'd been competent -- gee, sounds like it might have worked. Scary.

Speaking as one who has a) a visible disability; b) experienced employment discrimation over and over again; and who c) has routinely applied for jobs for which I was overqualified, in the hope of just getting any job at all, I will say that this guy is not playing for my team. Crips who behave in this way screw things up for the rest of us, who have to play the credibility game before we ever get to getting our references checked.

"Well, my grandmother couldn't walk. It was sad I guess"

2005-09-13T13:49:00.000-07:00

The question -- actually the first question -- was, "What are some of the stereotypes you think of relating to disabilities?" And, "What types of stereotypes do you think might arise for students with disabilities at college?"
It was the first question we were asking candidates to be our new office receptionist.

Before she said, "Well, I grew up around my grandmother who couldn't walk -- it was sad," our erstwhile candidate said, "Oh, stereotypes, I don't know -- I just really don't know any." (It occurred to us later that she might known what "stereotypes" meant, even though she claimed to be really interested in her recent neuropsychology classes...)

I generally hate interviewing people, and this time was no exception (although I do hate interviewing for jobs worse than I hate interviewing others). But, I have to say that, in my almost 48 years, this woman was the most breathtakingly dumb person I had ever encountered in this setting. I mean, wow. I was so taken aback that I got a temporary brainlock, looking down at the questions I was supposed to ask her. My mind was screaming "this is over" and "abort, abort", while my colleagues were looking expectantly at me to barf out the next question.

She was so bad that I would have suspected it was an elaborate "punking", except that I know we're all way to busy around here to set up something like that.

Another page in this same folio...

Years ago, I was working with this highly over qualified, intelligent woman, who was working more or less as a receptionist, and I was working as an independent contractor, doing word processing at her company. In the course of conversation one afternoon, I mentioned that because of the appearance of my skin -- which looks really dry and flaky -- combined with a slow and painful gait, I had often experienced discrimination. Socially, in the work place, in school -- you name it.

She was stunned. College-educated, liberal, aware of the Civil Rights Movement, and Women's Movement -- and was stunned that persons with visible disabilities would experience discrimination. I was stunned that she was stunned.

I wonder if she could have answered that "stereotypes" question.

Who's on First, and Is He Driving the Big Brown Truck?

2005-08-14T21:11:00.000-07:00

My wheelchair and my the lift on my van both needed repairs at the same time.

My wheelchair's regular maintenance needs are covered by my health insurance, for which I am thankful. I took it in for new tires, batteries, and a new seat cushion, and found out that my squeaky left rear wheel needed a new motor. They ordered it, and it was to arrive in about 5 business days.

The lift on my van, which I hate using for a variety of reasons, was barely getting my wheelchair into the van anymore. It also needed a new motor, but such things are not covered by insurance. You can, however -- and this is a big "tip from the crip" -- use the money from a health care spending account to pay for disability-related equipment and repairs on a car or van. (You can also use this money to pay for disability-related access work on your house/apartment, for things such as grab bars, lifts or ramps, widening doorways, etc.)

So, they ordered the motor, and, because I needed everything to be ready to go by 8/12 (a Friday), because I was going on vacation -- a driving vacation. I said that I would pay extra for them to send the lift motor by 2nd day air, because otherwise it might not arrive on time.

On Monday when I called, nothing had come -- but that wasn't surprising. Tuesday, I was too busy, and didn't call. On Wed. when I called, they had "just found out" that the motor for the wheel on the wheelchair was "backordered" and might not come in time, but it might come on Friday. Oh, and they "forgot" to ask for 2nd day air on the lift motor, but it "should" arrive on Friday also.

Friday morning, I get to the wheelchair vendor/mechanic at 10:30 am; UPS has come, but the truck was so full and disorganized that the guy was going to be coming back -- this from the "customer service" guy at the front desk. So, he doesn't know if either of the parts came.

I call my dad and he takes me to breakfast at the nearby public golf course. We get back to the vendor about 1:30. "Tell me something good." I say to Mr. Customer Service. "I don't know."

"Did the UPS guy come back?"

"No."

I sit and stare out the window for a while, and then I say, "I understand [from what he told me earlier] that the UPS delivery guy isn't the one who loads his truck, so he doesn't know where all the boxes are, but he must have a list of everything he has, right? [I believe this is sometimes called a "manifest", but I don't use this word.] "Did anyone ask him to check his list of boxes to see what had come?"

"I don't know."

Just then the phone rings, and Mr. Customer Service answers. He says, "Uh huh. So it won't be shipped until Monday. And who's that for?" Then he hangs up. I have a bad feeling about it, but hey -- I am not the only customer that they've got. There is no reason, other than the hairs sticking up on the back of my neck, for me to assume that this overheard scenario was about something for me.

About a minute later, Mr. Repair Guy comes out and sits down. "Well, dear," he says, which just makes me want to hit him in the head with a baseball bat, 'cause he's lied to me before, and I never know when he's telling me the truth, if ever. "The motor for your wheel on your chair won't be here until next week, but I've done blah blah blah to it and it should be okay for your vacation."

"And what about the motor for the lift?" I ask.

"It came this morning, and Mr. Van Repair Guy just finished installing it."

"It came before I got here this morning?"

"Yes, you're all set."

So -- back at 10:30 am, Mr. Customer Service either lied or didn't know what he was talking about when he told me that they didn't know if my stuff was on the truck. The UPS guy had dropped off the lift motor, and wasn't coming back that day because he didn't have any more deliveries there.

The insidious thing about wheelchair/durable medical equipment (DME) vendors is that there aren't that many of them -- at least not like car mechanics. I go to these people because they are the devil I know, and I have literally never been able to find a crip to give me a good recommendation for another outfit.

They overcharge like crazy on the stuff that gets paid for by insurance -- but their suppliers overcharge too, for the same reason.

I've been dealing with this place for years. The staff turns over pretty frequently. I always call a lot to check on the status of things because they will often find out something is "backordered" and not call me, or, conversely, finish the work on something and not call either.

In order to get the real story during this latest adventure, I would have had to question 2 0r 3 people before I got the whole story. I am in the business of service provision myself, and am sensitive to not being too pushy a customer -- it didn't really occur to me that the kid at the front desk (Mr. Customer Service) was either making shit up and/or talking out of his ass when I was trying to get the story on the status of things when I arrived. In fact, I thought the idea of me sitting in the small waiting room, which is where his desk is, would have been extra incentive for him to do everything possible to get me out of there as quickly as possible.

It sort of felt like a bad Seinfeld episode. Where's the Soup Nazi when you need him?

Slave to Beauty

2005-08-02T20:56:00.000-07:00

So...I hate washing my hair, because I hate getting my hands wet. It makes my skin more sensitive and makes it even harder to grip things. Wear gloves -- don't even go there.

My latest luxury is going to a beauty parlor, just to have my hair washed -- not dried, not styled, just washed. I've been charged as high as $20 -- I was in LA and was desperate -- and as low as $5. $5 makes me so happy that I usually tip another $5.

Except for today. Today, I left the house intending to head over to the strip mall beauty parlor ("spa pedicures"!) where I got a perfectly satisfactory $5 wash last week. En route, I remembered my sister asking me about the beauty parlor that is here in the park. Yeah, I thought, I should check that out -- it would be even more convenient than the strip mall which is the equivalent of 3 blocks away.

I find the park "beauty parlor", which is a 10 x 12 room in a cinder block building that also houses the laundry, restrooms, and a car wash. The owner/operator is a nice, middle aged white woman who won't let me get a word in edgewise.

I mean, I can sympathize with her -- here's freakgirl on wheels at her door. She says, "$5", and I think, "score!"

I sit down at the sink, and launch into my usual, somewhat dumbed-down description of my disability -- "body makes skin too fast, it doesn't break down properly, yada yada". I can tell she's not listening. I say, "there's stuff on my scalp, but I don't want you to try to do anything about that -- I'm just going for clean hair."

She asks me if I use a special shampoo -- I say, "no". I lean back and she starts running the water.

And then I feel a big raw spot open up on my scalp. I think, "how'd that happen?" She hadn't even started soaping my hair, much less scrubbing too hard. I think, "I must have done it myself when I combed my hair?"

Rinsing. Another rip on the other side. Ouch ouch. "Oh, I'm sorry." Her hose's spout has fucking teeth on it! (Probably feels good on so called normal scalps.) "I'm not wanting to get my scalp cleared -- those are raw spots now." All in a perfectly polite, reasonable tone, I swear to god. I knew she was nervous, and perhaps that's why she wouldn't listen to me when I tried to explain how not to hurt me.

Just another day in the neighborhood.

Just Another Day in Paradise (aka Cripville)

2005-08-01T01:01:00.000-07:00

10:45 am Casey calls to cancel the plan for this evening. He says he feels lousy. Ever since Wed. when he called me late in the evening to confirm plans that we'd made a couple of weeks ago, I'd had the feeling he wanted to cancel. He'd planned a bunch of errands for the afternoon, and was talking about making dinner, and then, going to play poker at someone's house. I was invited to go to play poker.

Sat. morning, he says he feels lousy. "My legs don't work." Casey has MS. After many years of not progressing, Casey is finding it harder and harder to walk. He has started using a cane. But, he should probably be using a power wheelchair or a scooter -- not probably, he should be, at least when he's not at home.

He's started an experimental chemo treatment for his MS symptoms. It made him really, really sick -- but he said he felt some improvement afterwards.

It is painfully ironic that I know Casey through our shared careers in disability rights advocacy. I have been disabled all my life, and have just decided to try and pursue my idea of creating a new profession: disability strategist. A disability strategist would help people with disabilities cope with both the emotional and practical aspects of having a disability.

But, I can't get Casey -- who knows better, on some level -- to see that using mobility aids may well be better than destroying his health (which is good, apart from the MS).

4:30 pm Casey calls to say that the poker game has been moved to his house, and is on for 8pm. I say I will come.

4:50 I leave the house to get on the light rail, which runs right by the mobile home park where I live. I am in my power wheelchair. I park my chair in the driveway because I don't have a lift on my house. I priced building a ramp about 6 months ago -- $5,500 minimum. Sunnyvale, the city in which I live, provides free lifts or ramps to residents who meet their income guidelines. I make too much money to get any assistance from the city -- it is an all or nothing proposition, unfortunately.

I hate using my van, which has a cheap (which is to say $2,500) lift for my wheelchair. The lift can barely lift my chair, and my chair barely fits in the available space. Since moving to my mobile home, I use the light rail and commuter train 85% of the time, mostly to avoid using my van.

I had to take my wheelchair in to have maintence done on it earlier in the week, and then I went to work, and left my van there. So, in order to get to Casey's, who lives in San Francisco, I need to get my van from work.

The light rail gets me to my train station connection in plenty of time for the 5:19 pm train. I wait in the appointed place for wheelchair passengers, which is a big white wheelchair "handicapped" symbol, painted in a big blue square on the pavement. There is a space like this at every CalTrain Station.

The train comes into the station. It is one of the newer "bullet" trains. On these new trains, instead of the hydrolic lifts on the older trains, they've built cement ramps that you use to get up on a raised platform. Then, the conductor gets a folding aluminum ramp to cross the gap between the platform and the train car. (The first time I saw this, I laughed out loud.) So, I go up on the raised platform and wait for the conductor to come. But, he doesn't come.

I know the engineer must have seen me, because I was waiting in the assigned place. I look down the platform and see a conductor hanging out of one of the open doors -- I think, if I can see him, then he can see me. I also think that they have seen me because the door is lined up in the needed position for me to board (once they get the ramp).

A couple of passengers look at me inquiringly and say, "is somebody coming to help you?" I say, "they better be", jokingly. I hear the recorded warning, "the doors are about to close" -- I wave my arms in the direction of the engineer, I wave my arms in the direction of the conductor I saw. The train starts moving -- and pulls out of the station, leaving me on the platform.

I am livid. I have been wrangling with CalTrain for over a year over their policy about only 2 wheelchairs per train allowed. That's 2 wheelchairs per the entire multi-car train. They tell their conductors that it is "federal law" that they can only take 2 wheelchairs. In fact, the law says that they must have room for a minimum of 2 wheelchairs. There are a variety of party lines I've heard from various CalTrain officials -- what it really comes down to is that they don't want to delay the trains by having the loading & unloading periods extended if they allowed more wheelchairs. (The only reason there is a downtime is that they have not upgraded the trains or the stations so that a wheelchair user can just get on or off the train by themselves, which is how it is on the light rail. On the light rail, I get on and off the train as quickly as any other passenger -- sometimes more quickly -- and each car has space for 2 wheelchairs.)

I called and insisted on speaking to a supervisor and insisted that they take a report.

I eventually get to Palo Alto, and then on campus. I go inside my building to use the rest room, and there I experience yet another frustration.

My building is only 3 years old, and I actually had the opportunity to participate in the design of our floor, which we made as wheelchair accessible as possible. This includes wide doorways and hallways, power doors, multi-level countertops in the kitchen, etc. I want to stop in the kitchen to get soda before I load my wheelchair into my van, and find that my boss has locked the door, again.

A few months ago, she arbitrarily started locking the door to the kitchen because people were leaving their dirty dishes in the sink. Even after I pointed out to her that locking this door seriously decreased my access to the kitchen -- if you are driving a power chair with one hand and carrying anything else in the other, getting a key out to unlock the door is a major pain in the ass. Even though my boss is supposed to be on vacation, she must have stopped by and locked the door on her way out.

I unlock the door, and leave it unlocked, and get my soda, grinding my teeth to powder.

At my van, I go through the process of getting my wheelchair in the van. This involves getting out of the chair (I can walk -- my disability, ichthyosis, causes severe blistering on my feet if I walk), taking the arms off, folding the back down, and hooking up the wheelchair to the lift. The lift lifts up the wheelchair crane-style. I have to jockey the wheelchair in because the space is only barely big enough, and the straps slowly slip down while in motion. It is a hideous, frustrating process and it makes me want to hurt somebody.

7:30 pm I get on the road to drive to Casey's house, where I lose $30 at poker. I had a good time, but seeing Casey, and seeing how he is not dealing with his disability, made me get a knot in my stomach.

Just in case anyone is wondering, if I had the money, I would:

1) buy a ramp van;
2) put a ramp on my house.