Wednesday, December 28, 2005

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.

Sunday, December 25, 2005

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,
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 ( 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, 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: 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.

Sunday, December 11, 2005

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"

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,, 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.

Sunday, December 04, 2005

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:
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.