A Novel That Tells it Like it Was, and Is

Writing About What You Know

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



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

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

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

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

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

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

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

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

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

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

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

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

Coffee for Crips!

I Like My Caffeine

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

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

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


The Locals

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

Both of the independents have moderate to severe access problems:

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

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

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

Hail, Starbucks!

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

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

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

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

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

The Larger Issue

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

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

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

Political Crip Art -- "Helping the Handicapped"

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

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

Crip Bloggers Unite, post script

Blogging Against Disablism Day

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

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

How Disabled Are You? Is That Your Final Answer?

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

The Essentials

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

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

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

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

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

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

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

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

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

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

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

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

You Become More Disabled

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

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

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

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

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

In Sum...

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

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

Crip Bloggers Unite!

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

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

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

Crip Film Festival

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

Moloka'i: Disability History in Microcosm?

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

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

The Moral Model of Disability

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

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

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

Followed by...The Medical Model

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

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




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

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

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

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

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

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

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

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

I'll Take The Civil Rights Model

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

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

Meanwhile, Back on Moloka'i

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

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

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

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

Railroaded, an epilogue

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

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

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

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

"Dear Teri:

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

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

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

Sincerely,

Michael Finney
7 On Your Side"


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

UN Convention on the Rights of Persons with Disabilities

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

Petition

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

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

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

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

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

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

Putting a Human Face on the Health Care Issue

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

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

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

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

Sage Words from One of My Heroes

Vindication -- It's Not Just for Breakfast Anymore

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

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

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

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

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

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

Judith Heumann used to be classified as a fire hazard.

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

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

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

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

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

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

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

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

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

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

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

Universal Design at the Pump

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

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

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

Aesthetically Pleasing Combo of Retro and High Tech

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

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

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

The Next Step in Equal Access

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

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

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

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

No Explanation

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

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

What is Universal Design?

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

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

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

Back to the Pump

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

The only disability-usability difficulties that remain are these:

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

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

The Consumer Votes with Their Wallet

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

Are you Ready for Your Close-up?

You Oughta Be in Pictures

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

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

Inadequate Training and Imagination

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

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

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

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

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

Extrapolation

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

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

Division of Labor

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

Railroaded, addendum

I received this comment on my "Railroaded" entry:

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

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

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

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

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

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

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

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

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

That's all I'm asking for.

Railroaded

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

January 26, 2006


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

Dear Mr. Welch:

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

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

Not Being Let off the Train at My Stop

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

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

Good Customer Service

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

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

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

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

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

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

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

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

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

Ironic Twist to the Story

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

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

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

In Sum

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

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

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

Sincerely,



Teri A. Adams, J.D.

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

Aunt Aggie Ruins Christmas, or Nearly Dies in the Attempt

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

1. 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.
2. 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;
3. 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

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.
----------------
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

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

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.