Vicki

Disability from A to Z

Vicki — Sun, 05 Oct 2008 03:45:00 GMT

I decided to make a Disability Alphabet, and I made a goal of emphasizing only positive words. I was inspired by Missy's ABC's of Caring Game, where she started a challenge asking readers to submit a word about care giving for each letter. My disability alphabet took me through a kaleidoscope of words. Here are my words. Suggestions?

Attitude
"The only disability in life is a bad attitude." ~ Scott Hamilton

The letter A could stand for so many things that are important to the person with a disability. However, I chose Attitude. A positive attitude allows each of us to accept ourselves and enhances each day. Besides, we can control our attitude and keep it positive.

Other good words: Acceptance, Accessibility, Accomplishment, Action, Answers and Assurance

Butterflies
I must choose Butterflies for the letter B after seeing the movie The Diving Bell and The Butterfly. Butterflies are the imagination that allows us to go anywhere, any time, even flying over a magnificent garden and lighting on a single perfect rose.

Another good word: Balance

Care
C represents care and all that it brings to mind. It includes our indispensable caregiver and other people who care and contribute. But it also represents the care we have and show, whether or not we can participate.

Other good words: Capability, Celebration, Challenge, Compassion, Continuation

Doing
"It's what you Do that counts - not what you can't." ~ Garry Jenkin

A particular disability may not mean we cannot do something. It just means doing it in a different way.

Other good words: Difference, as in making a difference; Determination and Dignity

Enthusiasm
"Every great and commanding movement in the annals of the world is the triumph of enthusiasm." ~ Ralph Waldo Emerson (1803-1888)

Enthusiasm gives us the energy to learn new things It is often a driving force.

Other good words: Education, Empathy, Energy, Entrepreneur and Experiment

Funny
There is nothing funny about disability. Well, actually, sometimes there is.

Once again a positive attitude allows us to laugh and have some fun. This subject is a bit sensitive, especially when a joke comes too close to some situations. However, that is true for everyone, whether a disability is involved or not. We all need to laugh, so funny is a good word for F.

Other good words: Faith, Foresight, Forgiveness and Fortitude

Games
Games help keep minds active while providing fun - whether we're with friends and family or alone. They exercise our minds and sometimes our bodies. They can be exhilarating, maybe help with socializing, but always deliver fun. Yes, "Games" is a good word.

Other good words: Gallantry, God and Gratitude

Humor
"Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it." ~ Bill Cosby

Laughter is the best medicine. Embrace humor because it's healthy in addition to being fun.

Other good words: Happiness, Health, Helpfulness, Hero and Hope

Innovation
Innovation works for this letter I. Innovation in medical research produces treatments and sometimes cures. Innovations have produced all kinds of assistive devices to make daily life just a little easier. Individuals are often innovative when trying to accomplish daily tasks. Innovation is a good thing for the disability community.

Other good words: Imagination, Initiative, Inspiration, Integrity

Justice
With the recent revamping of the ADA, rules and guidelines have been tightened to ensure equal justice for us all.

Other good words: Judgment, Juice and Just, as in Just keep going and Just try it

Kaleidoscope
K is for Kaleidoscope. The colors in a kaleidoscope are delightful as they change. Disability, too, may change from day to day. I know my MS does.

Kaleidoscope Magazine explores the experience of disability through literature and Fine Arts. Do you have a good story or picture? They take submissions.

Another good word: Kind for kindness and for the different kinds of disability

Love
"One word frees us of all the weight and pain of life: That word is love." ~ Sophocles (496BC - 406 BC)

My L word, Love, covers platonic and romantic bonds, love lost and found, remembered and forgotten, perhaps best epitomized in The Bible.

Other good words: Language, Learning and Locality

Mobility
Mobility provides the means for the non-ambulatory to participate fully in society.

Another good word: Memories

Nutrition
Nutrition is especially important to people with disabilities. Just like everyone else, we fare better when healthy. Good nutrition is a path to good health.

Other good words: Nature, New, Nursing and Nurture

Optimism
Optimism is often self- fulfilling. Believing today will be a good day is a good start for a good day.

Another good word: Originality

Patience
"Patience and perseverance have a magical effect before which difficulties disappear and obstacles vanish." ~ John Quincy Adams

Many things are accomplished with Patience. Patience often leads to good decisions.

Other good words: Paralympics honoring the world-class athletes who happen to have a disability; Persistence and Progress

Quest
Embark on a Quest to discover, and then create life as you want it to be.

Other good words: Quality and Quiet

Respect
"Men are respectable only as they respect." ~ Ralph Waldo Emerson (1803-1888)

Respect yourself, and respect others.

Other good words: Refreshment and Regeneration

Smile
"Every time you smile at someone, it is an action of love, a gift to that person, a beautiful thing." ~Mother Teresa

Smile when you can, enjoy your good humor, and share it. Any day you just don't feel like it, visit Smile of the Day for a little help. Remember a smile is worth even more when it is given away. You won't lose anything because you are likely to get it back.

Other good words: Skillfulness, Spirit, Strength and Success

Therapy
T is for Therapy, another way to strengthen our health. It helps keep movement in our bodies, balance in our thinking, and peace in our souls.

Other good words: Thankfulness, Tenacity, Time, Toughness and Treatment

Understanding
Understanding a disability often determines the path to living with that disability.

Other good words: Usefulness and Union, as in uniting for a stronger voice

Values
"Your attitude is an expression of your values, beliefs and expectations." ~ Brian Tracey

Our values help make our lives worth living.

Other good words: Vigor, Virtue and Vitality

Wisdom
"We are made wise not by the recollection of the past, but by the responsibility of our future." ~ George Bernard Shaw

Wisdom allows us to accept what we cannot change and continue on to build the life we want to live.

Other good words: Wellness, Wishes and Words, as in choosing our words wisely

X-ray
X-ray represents advances in technology such as the x-ray, MRI, MRIf, cat scan and more.

Other good words: X chromosome because of the gender differences as they are affected by conditions and treatments.

Yes
Yes is a positive attitude said aloud.

Other good words: Yearning and Youth

Zest
Zest adds charm and spirit to your life.

Other good words: Zounds, because we need to express anger sometimes and Zero - okay, I'm stretching here, but I've used up my energy and I have zero left.

In a word, what does disability mean to you?

Driving to Independence

Vicki — Sun, 28 Sep 2008 02:59:00 GMT

Independence is happiness. ~ Susan B. Anthony

I worked most of my adult life to become independent. It has always been important for me to take care of myself. My parents taught me well. Then MS joined me on my Life Journey and put a chink in my armor. Life changed and so did my independence. I was going to need help.

Now, I know everyone needs help at one time or another, and not everyone is able to ask for it. Some people have difficulty even accepting help that is offered, let alone asking for it.

I remember when I got my drivers' license at 14, thanks to Louisiana. It didn't occur to me at the time, but that was my first step toward independence. I no longer had to rely on my parents or school buses or friends to go anywhere. In fact, I became the friend who could transport others.

Now fast forward 35 years or so when MS made its debut in my life. Driving habits had to change. I traded my 5-speed sports car for an automatic sedan so I no longer had to manipulate a clutch. This was the first time I had power steering, so that was easier, too. As control of my legs continued to wither, I added hand controls. I could still drive -- a requirement for getting around in Dallas, and that was a big step in continuing my independence. I could still get myself to work, to the grocery store, to the doctor's office, and to see friends and family. Driving, for me, had changed, but I managed to remain independent. It was a good feeling.

While I gave up driving, I did not give up my car. It is equipped to carry my cart and me so I am still able to travel. I still enjoy face-to-face relationships, but I also rely on social networking online, as Karaswims points out. Most of my activities are done on my terms. Yes, I did give up driving, but I am keeping my independence intact. My independence is no longer dependent on driving.

A Memory from the Past

Vicki — Sun, 21 Sep 2008 02:58:00 GMT

When I was a child, I saw a young girl in a wheelchair being pushed by a woman I assumed to be her mother. We shared a smile as we passed. I was just a little girl myself, and I related to the girl in the chair because we were about the same age.

An adult nearby -- not someone I knew -- said: "Isn't that a shame? She is so pretty."

Actually, I thought the little girl was lucky because she had a chair with wheels. She was lucky, too, because she was pretty. She was also lucky because her mother seemed proud to be with her and they were having such a good time. They were enjoying each other and the outing on such a nice day. She was lucky.

What did that woman really mean when she said: "Isn't that a shame? She is so pretty." Is it okay for plain children to be in wheelchairs?

That happened many years ago, but I still remember the moment and I can still relte with that little girl. I am now sitting in a wheelchair and I feel lucky. My chair has wheels, I enjoy family and friends, and I can have outings on nice days. I hope that little girl is still smiling, too.

People in wheelchairs, as well as those not in wheelchairs, can be pretty and smart, sexy and funny, determined and productive. It is not a shame because the little girl was so pretty. It is a shame that woman had to say it like that.

Picture Credit: commissioned by GR.Jenkin

Wheeling Through Time

Vicki — Sun, 14 Sep 2008 01:24:00 GMT

We were watching a DVD of the old TV series Connections the other night. Connections was a documentary series in which James Burke made connections from an early discovery through civilizations and time until it shows up as a magnificent part of modern civilization. It is almost a version of "Six Degrees of Kevin Bacon." As I was watching, I wondered when and where did the wheelchair begin?

I knew a little, but I also knew there had to be more. The earliest reference I found was a wheeled bed in Greece in 530 B.C. I cannot imagine that was very mobile or convenient, especially for visiting friends or shopping. Just five years later, the Chinese put wheels on chairs. The Chinese honor their elders and they appear to honor disability as well, because by the third century they had a "rolling apparatus for the infirmed."* The earliest image of a wheelchair was found incised in stone on a Chinese sarcophagus, but the histories that I found did not credit the Chinese with inventing the wheelchair.

In the 16th Century came the device generally conceded to be the first wheelchair. A 1595 drawing shows King Phillip II of Spain in his tall wheeled chair with movable arm and foot rests. King Phillip II (1527-1598) was also King of Portugal, Naples, Sicily, Chile, England (as King-consort of Queen Mary I), Sovereign of the Netherlands, and was appointed by the Pope as King of Ireland. As busy as the king was, what with all of his ruling and power-grabbing, he still found time to inspire the invention of the first recognizable wheelchair. He started a trend: In the next century a German built a chair with a hand wheel; then in the century after that an Englishman built a chair propelled by pushing the wheels. Ah, progress.

Wooden wheeled chairs came into use. Then, early in the 20th Century the first folding, tubular steel wheelchair was built by Harry Jennings and Herbert Everest. They developed the first power chair in the 1950's. That same decade, wheelchair sports began in England. Lighter weights, heavier power, and generally more versatile chairs began popping up as more people began working on different designs to handle different needs.

In 1968, Al Thieme built the first power operated vehicle (POV), also known as a scooter, starting an entire new wing of the wheelchair industry and offering a new type of mobility to the disability community. And then of course, there is the iBot that climbs stairs and curbs and equalizes wheelers' eye-level contact. What is next?

As I sit in my electric scooter, I'm wondering what wheelers will be using in another hundred years. Even with the iBot, mobility has room to grow.

Wheelchairs also have functions other than providing a modicum of mobility to a portion of the disability community. They are also comic fodder, as the case of the runaway wheelchair (down a hill with no one to stop it), or this video of a baby in a wheelchair (be sure to read the comments).

Notes and Links:
* from Wheelchair Junkie's history of the wheelchair, timeline
Wheelchair Junkie's history of the wheelchair Here is a cute and interesting narrative followed by a time line
Wheelchairnet History of the Wheelchair Bulleted, dated mileposts in wheelchair history
About.com History of the Wheelchair Short narrative of wheelchairs in the 20th Century
Custom Wheelchairs The Trend from Functionality to Individuality

Finding Joy in a Pain-filled Life

Vicki — Sun, 07 Sep 2008 02:02:00 GMT

"But pain…seems to me an insufficient reason not to embrace life. Being dead is quite painless. Pain, like time, is going to come on regardless. Question is, what glorious moments can you win from life in addition to the pain?"
Lois McMaster Bujold, Barrayar, 1991

I always had a very low threshold of pain. Since my MS diagnosis, I am learning, much to my surprise, that I can live with pain and still find joy in life. I am learning to coexist with the scary pain monster.

One day last year, I was happily going through my morning routine, washing my face and brushing my teeth with an electric toothbrush. Suddenly I had a blinding pain. It felt as if I was being electrocuted. There were shocks of lightening bolts jumping through my mouth. I dropped the toothbrush and after what seemed like an eternity, the pain resided. I was shaken, I had trouble understanding and tears were streaming down my face. I did not know what to do next.

I thought I was nuts. How could I explain this? So I went to the doctor, took a deep breath to hide my embarrassment, and told him the fantastical tale of the electrical storm in my mouth. I braced myself for his response. I was sure he would realize it wasn't possible to have that much pain. It was all in my head (which it was). Then he would send me away to an asylum.

Without batting an eye, the doctor seemed to know what was wrong. He turned to me with sympathy in his eyes and said it is Tic Douloureux.

It's what? Tic Douloureux? It almost sounded cute the way he said it, or maybe even sexy with the French pronounciation, but my new pain monster is named Tic Douloureux. It is also known as Prosopalgia and Trigeminal Neuralgia (TN), and it has an ominous nickname, "the suicide disease."

He told me a little about the condition. Then I read an article saying TN is "universally considered to be the most painful affliction known to medical practice."* Surely there are cures or treatments that make it tolerable, but no such luck. There are treatments that work some of the time for some of the people, but no panacea. So what do I do now?

A friend who suffers from migraines once told me she could think her way out of the pain by focusing on the headache. She said it did not work all of the time, but it did work. Is that something that might reduce the pain of a TN attack? My caregiver found a NYTimes article: My Pain, My Brain that says it just might. Actually, this technique is actually watching brain activity during a pain episode and consciously reprogramming it to reduce the pain.

Melanie Thernstrom tells of a functional MRI (fMRI) being used in a Stanford study hoping to develop a technique that teaches people to control their brain's response to pain. Pain causes the nervous system to re-wire itself, and this study aims for the patient to redirect that wiring. It sounds a bit sci-fi, but in the most positive way. If we can learn to control our reactions to pain, then we can all better appreciate the good things in life and find our own version of joy!

Notes and links:
Thernstrom's article was published in May, 2006, so they may have completed the study. Wouldn't it be great if the neuroimaging study found ways to help us reduce severe pain? She was writing a book on pain. I found this reference, but did not find the book.

Untitled on Pain by Melanie Thernstrom

Published by Farrar, Straus & Giroux

ISBN 0865476810, 9780865476813

Here are some links for pain management:
International Association for the Study of Pain (IASP)
Living with Chronic Pain from Medicinenet.com and WebMD
New Coping Strategies 8-week class at Stanford, Living with Pain
Lifestyle Techniques ABC video clips
Controlling acute pain
Managing TN facial pain

TYPES OF PAIN
Cancer pain - 3 types, but it talks about more than 3
Two major types and why it is important to know the difference
Links to pain sites from NY Online Access To Health

Sharing the Caring

Vicki — Sun, 31 Aug 2008 02:27:00 GMT

We don't understand each other. There are so many things caregivers don't really understand about the very people they are caring for. To be fair, the cared for do not understand many things about their carers either.

When I used a manual wheelchair my mother would push me out of the way, facing toward the wall. I talked to an actor who played a woman in a wheelchair. She told me people on the set often placed her facing the wall, too. What was intended to be helpful was actually seen as thoughtless. Why would we want to sit facing the wall? It felt as if we were just being put aside. Even the actor who was fully capable of walking was pushed aside because she was in a chair.

In 2001, Gretchen Berland gave cameras to three wheelers who filmed over 200 hours of footage documenting their daily lives and interactions. If I had a camera, I could have shown my mother the wall, and she would have understood. I could show the city how my chair goes bUMPty-bUMp on the sidewalk cracks as I roll through my neighborhood. Actually seeing it leaves more of an impression than just being told. Berland’s documentary called Rolling, "a raw perspective of life in a wheelchair," illustrated the symbolic powerlessness of the chair.

It all begins with the simple fact that wheelers must look up at uprights. One scenario in the film shows a wheeler's tiring and difficult trip, followed by a long wait, and then a very brief, cursory visit with the doctor who towered over him the whole time. Another vignette shows dusk falling as a woman sits stranded between a paratransit transport and her front door when her electric wheelchair stalls. The transport driver complied with his rules which do not allow him to take passengers into their homes.

Uprights do not understand how it feels to be patted on the head or to be pushed out of the way. At the same time, wheelers do not always understand the upright’s motives and often awkward attempts to help. My mother was pushing me out of the crowd so I would not be overwhelmed by bellies, butts, and swinging purses in my face. My actor friend was pushed out of the way as they were hurriedly clearing the set. It is not the act of thoughtlessness as much as just not understanding. How can we show wheelers the carer's perspective?

Wheelers must try to communicate, and uprights must try to be compassionate. At the same time, we must try to understand the other's perspective and maintain a sense of respect and humor. Hmmm...well at least this wall has pretty wallpaper.

Here are some articles that tell more about the film:
Rolling: actual clips

Berland's interview
Caring.com article
Yale Daily News
Disaboom article

Here are some links about caring for our carers:
Psychology of caring
Family Physician Guide to helping carers cope
Strength for caring
AARP care for caregivers

Caring Game

Vicki — Wed, 27 Aug 2008 08:35:00 GMT

Caregivers. You know one, or you are one, or you have one. What do they mean to us?

Caring.com provides guidance and gives advice especially for people caring for their elderly or ailing parents. Missy has started a game she calls "The ABC's of care giving." It's easy. Here are her rules:

"I will start out with the letter "A" and choose a word that describes something that I associate with care giving. The next person who posts will choose a word starting with "B", the next "C", and so on. There are very few rules in this game. Just do your very best to stay away from anything obscene or offensive. Other than that, go nuts! It can be happy, sad, funny, honest, thoughtful, kind, snarky...whatever. This is our game!"

So far there are five entries -

A - Aging
B - Brushing Teeth
C - Crisis Avoidance
D - Disability
E - Energizing

Read the explanations and stories that go with these alphabetic care giving words. Vote if you find a story helpful. Then pick a word or phrase for the next letter and add a thought of your own. Check it out.

The Population Tsunami is Coming!

Vicki — Sun, 24 Aug 2008 02:40:00 GMT

With the aging of America also comes a redistribution of population segments. Of particular interest is the current disability minority that is moving toward a new majority.

Here is a data visualization of the U.S. population over 50 years of age from 2010 to 2050. Click on the chart to read notes explaining the boxes that mark interesting age group trends.

Looking at U.S. Census population forecasts from 2004, we see an increase of 100% to 300% to all ages over 70 in the years between 2010 and 2035. The Baby Boomers will be introducing the very beginning of this glacial increase in age distribution. It shows the over-80 year old group almost doubling, the 90s quadrupling, and population reaching 100 exceeding a 900% increase by 2050. Public data estimates show that in some U.S. states, there will be more than 20% of the population with disabilities.

The U.S. Department of Health and Human Services Centers for Disease Control and Prevention National Center for Health Statistics published a report this year on Disability and Health in the United States between 2001 and 2005. It examines differences between adults with and without disabilities using statistics from the National Health Interview Survey (NHIS). The differences focus on difficulties in "movement or sensory, emotional, or cognitive functioning," categorized by limitations in self-care tasks, work or ability to participate in social functions. Inclusion in one or more of these groups depends on the respondents' own reports.

The report concentrates on people who are not in any type of institution. At the time of this report, more than half of the respondents who reported activity limitations of any level were under 65 years of age. About half of those reporting basic or complex limitations reported income below 200% of the federal poverty threshold.

This chart of current figures showing disability distribution within age groups and gender illustrates more than half of those over 65 are already disabled.

That tells how it was and how it is, but what about the future?

According to the population distribution forecast, Baby Boomers are transitioning from dynamic workforce leaders to the new majority. Predictions are that as the population age increases, age-related and obesity-related disabling conditions will also increase more than expected due to the age distribution alone. The American elderly population is growing in leaps, and with it, the disability segment is expanding to become more of the mainstream.

Are We Ready? Is Society prepared for the probable tsunami of a population segment made up of retirees and disabled people, many under the poverty level? The country must be prepared with health care, accessibility, disease management techniques, and housing. What else?

It is our experience that people often fail to adequately prepare for the future, especially when it may be unpleasant to think about. Retirees are often not quite prepared for the drop in income and the need to continue paying for life's pleasures for many years. Social Security will pay for the continued lifestyle. Many people don't even have plans for their final remains. They don't want to think about dying, and they certainly do not want to think about the possibility that they will become disabled. This head-in-the-sand attitude may have devastating results. For whom does the bell toll? It tolls for our aging population.

Thanks to the ADA and disability advocates, there is more help now than ever before, but we are approaching a time when disability will be the norm. Will we be ready?

Credits:
Population over 50: Created by Garry Jenkin, using Swivel software and U.S. Census Bureau data
Disabled Population by Age and Gender: Created by Garry Jenkin, using Swivel software using Disability and Health in the United States data
Document Credit: Altman B, Bernstein A. Disability and Health in the United States, 2001–2005. Hyattsville, MD: National Center for Health Statistics. 2008. All material appearing in this report is in the public domain and may be reproduced or copied without permission.
Note: We find various statistics reported in various reports. Numbers and years used are from cited reports.

The Pollyanna Attitude

Vicki — Sat, 16 Aug 2008 23:21:00 GMT

When you look for the bad in mankind expecting to find it,
you surely will. ~ Abraham Lincoln

Remember Pollyanna? Pollyanna's father gave her a brooch inscribed with Lincoln's quote. It became her life philosophy, but she framed it in a positive light, looking for something to be glad about in every situation. It started when they were very poor and relied on charity. One Christmas, Pollyanna got crutches, and she was disappointed and upset. Her father said she could be glad because it was a reminder that she did not need them! "The Glad Game" became part of her life. It sounds like a wonderful attitude to me.

My experience with Pollyanna began in the movie starring Haley Mills. I related to her, possibly because we were both 11 at the time. She was able to spread her positive outlook throughout the town and never lost hope. She had an accident and heard a doctor say she would never walk again. That's another thing we have in common. She plunged into depression, but the townspeople visited her and she realized how she had brightened their lives. The movie ended with Pollyanna being carried on her way to the hospital with her regenerated positive outlook.

Being disabled affects more than your well-being; it affects your attitude as well. You may not be able to choose whether or not to be disabled, but you can choose whether to be negative or positive. And remember, negative thinking and actions beget more negative responses and feelings. Positive thinking begets more of the same: friendliness, happiness, smiles and good feelings.

Now don't get me wrong. You are still human and subject to experiences of sadness, irritation, fear, and all those human feelings just like everyone else. Even Pollyanna fell from her Pollyanna Attitude heights when she learned she would not walk again. With the help of the townspeople, she was able to redirect her hopes and regain her positive thinking. Life is more fun that way. Regardless of circumstance, try to find the best part of it and help others do the same.

Pollyanna is often understood to be a naive optimist who just doesn't understand reality. It may be naive, but I prefer to think of it as facing reality with a smile.

A happy person is not a person in a certain set of circumstances,
but rather a person with a certain set of attitudes. ~ Hugh Downs

It's Not About the Door

Vicki — Sat, 09 Aug 2008 19:51:00 GMT

Apparently doors are a hot button in the disability world. This story was mentioned in a previous post:
A young man explains that he tried to help a disabled woman by opening the door and was greeted with a dirty look, like maybe he was going to rob her, and certainly with no thanks. He said that had happened before, so he was not going to help any more disabled people.

There were so many comments that the subject turned into a forum. There must be a reason for that. My interest was piqued by the question and the answers, too. Apparently, it was interesting to a bunch of us, with different perspectives and attitudes. Many people shared their own stories, things that happened, what they thought, what they would have done, reactions to other comments. They were enlightening. All of the comments together reflected the make up of our diverse community touched by disability. Comments reflected anger, rudeness, appreciation, rage, disappointment, acceptance, frustration, understanding, a sense of humor and sometimes just explanations. Julianne said, "Within this single conversation, lots of us have commented about how we personally believe we should behave, or what is comfortable for us. Our ideas are very different, and all valid."

Many comments focused on help opening a door.

"Why not make someone's life easier? "

"Usurping my independence!"

"Do you know how heavy some doors are?"

"I don't get the door thing. I open doors for people when I can, they open them for me; what's the big deal?"

Dianne told a story of her own:
An older man and a young woman were both approaching the building door. The man holds the door open for the woman. She immediately starts reading him the riot act about acting patronizing to a woman. The man stood quietly while she ranted on. When she finally ran down, the man said simply, "Ma'am, I didn't open the door for you because you are a woman. I opened the door because I am a gentleman."

Behind the story is the issue of intent. It was irrelevant to him if she could open the door herself. What mattered to him was the social convention of courtesy. He was making no judgment or comment about the young woman. He was just polite. Opening the door was not about her, it was about him.

Wouldn't it be nice if all our interactions were based on mutual respect. Now, to be fair, when a disability is involved, there may be other issues. We're often told to try harder if we cannot quite do it the first time. The more doors we can open, the longer we will still be able to open doors. There is also the issue of balance and awkwardness. To be helped in the middle of trying is often more dangerous than it is helpful.

There is no one answer that works all the time. Julianne said: "Let's all give ourselves some room to be people...nobody is either perfectly patient or unrelentingly 'mean.'"

It's not really about the door you know. Doors are a valid controversy, but they are symbolic of a bigger issue.

A door represents independence for those of us who can open it, and a feeling of helplessness for those of us who cannot. Opening a door can be a small triumph in a day filled with obstacles. Help with a door can be a measure of kindness or courtesy, or it can simply be patronizing. Helping to open a door epitomizes the perception of able-bodied people toward a stranger with a crutch or in a wheelchair. A door opened for us reminds us of the abilities we once had but lost, or maybe never had at all.

A door may be an obstacle to the world, a roadblock between us and all those wondrous things behind the door not easily accessible. The next door you see may be the door to opportunity. Even if someone helps you open it, what really matters is what you do on the other side.

Picture Credit (I think most of us would appreciate help with this one): détail de l'entrée de notre dame de beauvoir by Paul Munthoven; GNU Free Documentation license

My New Plan Won't Let It Have Me

Vicki — Sat, 02 Aug 2008 23:32:00 GMT

I have MS, it doesn't have me.

What a great mantra.

I have ____, it doesn't have me. Now you fill in the blank with whatever disease or condition interferes with you.

With progressive MS and the havoc of daily life, there is not a moment when I am not aware of my MS.MS has a definite hold on me. I cannot deny it, and it is not going away. However, I refuse to give in and let MS have me.

It is time for a new life plan. I will make it simple.

1. Decide what I want to do
2.Get Real
3.Determine what I can do
4. Do it

Decide what I want to do
I seem to be a list person, so I write a list of things I want or feel I need to do. Easy enough. Write a list of everything I want or ever wanted to do, everything I know I cannot do. The list is open ended, I can add to it or change it at any time. When a first draft is ready, I go to the next step of the plan .

Get Real
I assess my new limits -- ability, time, energy, financial -- and make categories:

Important To Me
Fun or Interesting and Ability Friendly
Still Fun or Interesting, but Ability Questionable
Fantasy land

When this is done, I go to the next plan step.

Determine what I can do
I place each list item in a category.It really doesn't matter so much that the items are done in any particular order. If I cannot do something exactly as it is written, maybe I can enjoy it in a different way.For an item I know I cannot possibly do, I mark it as Fantasyland. Fantasyland is, of course, my memory and imagination.

When the list has been annotated, I go to the last step of the plan.

Do It
Pick an item and do it or at least schedule it. Have a good time.

Well, this was fun. MS may have a firm foothold in my life, but for a little while at least, it was not the dominant issue. Even if I never do anything on my list, this was fun. I believe I will be able to check off some items when they have been accomplished, so that will be fun, too. I have MS, but I will not let it have me.

Here are some links I read when creating my plan:

100 Things
This is written as a checklist and there were some good ideas.
2Do Before I Die
This is a collection of goals that have been submitted from around the world, and sometimes little stories to go with them.

100 is too daunting. I'll try a shorter list.

50 Things
These are 50 goals written by a traveler.
50 Nerdy Things
These were written from a park bench, a gathering place for women.

Still too many.

10 Most Incredible Things
This list has some really incredible things as the name suggests. Some items may take an adaptive device or at least a partner.
10 Things To Do
This is a list by an extremely accomplished man who has already done some impressive things.

Why Are Disabled People So Mean?

Vicki — Sun, 27 Jul 2008 02:19:00 GMT

Certain people have a way of saying things that shake us at the core. Even when the words do not seem harsh or offensive, the impact is shattering. What we could be experiencing is the intent behind the words. When we intend to do good, we do. When we intend to do harm, it happens. What each of us must come to realize is that our intent always comes through. . . .. What we owe to ourselves and everyone around is to examine the reasons of our true intent. ~ Thurgood Marshall quotes (American Jurist and Lawyer. 1908-1993)

I was browsing through questions on Yahoo! Answers as I sometimes do. There are many fun things there. I was particularly drawn to one question: "Why are some disabled people so mean?" It piqued my attention because I am disabled, and I don't think I am mean. The asker explains that he tried to help a disabled woman by opening the door and was greeted with a dirty look, like maybe he was going to rob her, and certainly with no thanks. He said that had happened before, so he was not going to help any more disabled people.

Many responders to this particular question said they had experienced the same thing. Several people suggested asking before you help; if you don't, it "usually earns you a dirty look." One answer suggested maybe the response was not because the woman was disabled, but because she was old. So maybe we should ask, "Why are some old people mean?" One respondent said, "Some disabled people hate the world. Cuz they think everybody owes them. (They suck)." That was almost as disturbing as the question.

It is true that some disabled people are mean, as are some able bodied, and that was acknowledged in the answers. Many suggested the woman might have been having a bad day or that he might have frightened her, but their answers were generally respectful to the questioner.

Then there was a post on Disaboom concerning a telephone menu at a mental hospital. There were mixed comments. Some were greatly offended, some thought it was funny, and then some neither flinched nor laughed. Concensus is that people should not make fun of people with a disability, but most did not believe that was the intent of the post.

There are other posts, other questions, some seem thoughtless, some even offensive. There are plenty of people who want to help but don't know how. Our responses to all of them can be positive. Our intent in responding can be to enlighten rather than criticize. We all need a laugh sometimes, or at least a smile, and we all need to relax a little and assume their intent is not malicious.

I know there will still be people who don't want help, who value their independence and don't want to give it up. There will be people who scowl when they hear a joke that highlights a frailty. I will assume their intentions are honorable, because mine is. I just don't want to be one of those mean disabled people.

It Counts To Have a Disability

Vicki — Sat, 19 Jul 2008 06:16:00 GMT

The 2010 Census will be taken in less than two years, and I think it should be interesting to see the increase in the number of people with disabilities. Between aging baby boomers and troops returning from Iraq with disabilities, that segment of the population will be significantly larger than in the 2000 Census and will certainly affect projections, programs and fund allocations. Yes, I think it will be interesting.

How are people with disabilities counted, who is counted as having a disability, and what difference does it make?

I searched for the term disability in the U.S. Census and the only search result was the March 1999 Current Population Survey. That was a long time ago.The U.S. Census Bureau maintains the Current Population Survey (CPS) as a monthly survey updating labor characteristics of the population. On that March report nine years ago, there was only one question (Q59a) concerning disability:

(Do you/Does anyone in this household) have a health problem or disability which prevents (you/them) from working or which limits the kind or amount of work (you/they) can do?

Yes
No

That's it! Only people who answer yes to this question are counted as having disabilities. In this context, people with disabilities who are able to work with or without accommodations are not counted. And it is interesting to note that for the Census, anyone can say yes or no without any type of verification. What is the significance of that question?

The Census information tells us: "CPS data are used by government policy makers and legislators as important indicators of our nation’s economic situation and for planning and evaluating many government programs."

That sounds important to me. It seems to me that we -- society at large and the government in particular -- would benefit from knowing the number of people with disabilities, working or not, mobility impaired or ambulatory, hidden or obvious. If the CPS is meant to prepare our nation to plan and evaluate programs, it should cover every segment of the population in detail, including the disability community.

Maybe the 2010 Census will take care of that. Or maybe not.

The Census is changing. The process of collecting the numbers is becoming simpler. Perhaps the information being collected is improving, too. The projected questions for the 2010 Census and the new American Community Survey include a few more questions concerning disability (look at page 26) and they focus on general functional ability to perform daily tasks rather than just workforce participation.

Disabilities are to be counted in a manner similar to the counting of other population segments such as age and race. Just like when people tell their age without a corroborating birth certificate, and tell their race with no pedigree papers, people who claim disabilities are subject to the honor system -- we can say yes without a doctor's note.

Questions ask about vision and hearing as well as daily living such as dressing, climbing stairs, and running errands. There is no general question that asks if the person has a disability, so I think there will be many who will not be counted. There may be segments not yet considered when programs are set up and funds allocated.

The current change is meant to simplify and shorten the questionnaire. I'm all for that.

Disabled - A Secret to Share?

Vicki — Sat, 12 Jul 2008 22:21:00 GMT

About 7 million people require some type of mobility help, a cane, walker, crutches or a wheelchair. Over 125 million Americans have a chronic condition, and some have more than one. Forty million are limited in their everyday lives, but some have no visible signs of a disability.

Many conditions, including MS, affect our lives without revealing characteristics to the public. Having an invisible disability has its advantages in a prejudiced society. An invisible disability means you can pass as "normal" in the working and social worlds. Others don't feel awkward around you, employers don't ask prying questions, people don't stare. All that sounds pretty good, and it's understandable to want to keep one's disabilities hidden.

Invisible disabilities bring with them a different set of potential difficulties. When you look good, your friends may not understand that you do not feel good. If your employer does not know about your disability, you cannot ask for accommodations.

"The imperfections of a man, his frailties, his faults, are just as important as his virtues.
You can't separate them. They're wedded." ~Henry Miller

If you have an invisible disability, one important issue is telling. When and who do you tell, and when you decide to do it, what do you say? How much do you tell your family and friends and your employer, and what are the risks or rewards?

You may want to tell your family and friends to help them understand why you might not want to participate in some activities sometimes or at all. One risk is they won't know how to deal with you any more. They may not include you in activities when they would have otherwise. Family and friends need to be reminded you are still you.

You might hesitate to tell your employer because it may affect your chance of promotion or assignments. It may affect your status as an employee in the eyes of your boss, human resources, or even co-workers. This is a tough decision and it may cause undue stress before the decision is made and even after.

In my own experience, my disability was never invisible. I was using a cane to stay upright before I ever knew why. By the time I was diagnosed with MS, it was a relief that my condition actually was a real thing and had a name. I have often wondered how I would have handled it if I knew before it was obvious.

I knew a boy in high school who had won an award. As he crossed the auditorium stage to accept the award, the girl next to me said, "Poor Ray." Why "Poor Ray?" He was cute, he was smart and well-liked, and he had just received an honor. Well, he was a double amputee and she thought it must be hard to walk so far to cross the stage. He was smiling - he almost always smiled - and I never heard her say "Poor Ray" as he was walking down the halls between classes. His accident happened years before I knew him, he wore long pants, so I didn't know. Other people knew, but his disability was invisible to me. I wondered how many kids pitied him and how he felt about that. Did he wish they didn't know? He wasn't putting up a brave front, and he wasn't trying to hide his prostheses. He was just living his life like so many other high school kids in the 60's.

The more I read about disability, I see there is more to learn. I am lucky with the path my MS has taken.

Here are some sites I visited while learning about hidden invisibility.
- A Hard Look at Invisible Disability
- Living with an Invisible Disability
- Fibromyalgia
- The Invisible Disability Advocate
- Rachel's Blog