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.

A Word on Dieting -- Or Not

(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

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")

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

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

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:

1. What does Grandmother use the dresser for, and can the dresser be replaced by a different type of storage system/furniture?
2. 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

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

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

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!

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

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

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...

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.

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?

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:

1. "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?"
2. 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?"
3. 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"

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?

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

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.