Good Intentions and Worst Words

Language is a hot button in the disability community. We have words that can be used among ourselves, but we prefer able-bodied people (ABs) to omit them from their vocabulary. Terms like "crip" and "gimp" and other pet names are bandied about, but we find them especially derogatory if someone outside our group dares to speak their names.

In fact, most people are squeamish about certain words, but there are no definitive guidelines for determining when it is okay and when not to use such language. Often words used in complete innocence are offensive. Do we need a glossary of unacceptable terms? I think the guideline should be to be respectful when talking and not too sensitive when listening.

Ouch! is an online UK magazine about disability sponsored by the BBC. If you are unfamiliar with it, take a look. Ouch! has been exploring language used in reference to disability. In 2003, they assembled a list of the top ten offensive words and asked their readers to vote which were perceived as most offensive. Ouch! revisited that exercise and published the results in August. Responders were asked to voluntarily identify themselves as disabled or not.

Here is a data visualization in Swivel.com of the results:

2053 votes cast: 73.9% non-disabled 18.3% disabled 7.6% "rather not say"
Click here to see relative values by percentage.

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technorati tags: DowntheMSath, disability, wheelchair, terminology, language, respect, innocence, censorship, communication, positiveattitude, attitude, wordpower, languageofdisability, offensivewords, wordchoice

Survey Request

Kathryn M. Martin, Public Affairs/Patient Advocacy Manager at MediciGlobal, sent a message and asked that I put this in my blog:

"We're doing some research to understand the journey people might take from their first symptom(s) of MS, to the time they visit a doctor, and eventually if/when they begin treatment options. If you have about 5 minutes to spare, we would really appreciate it if you could take this survey to tell us about your journey. It's anonymous so no identifying information will be collected."

I took the survey. The questions were simple, anonymous as promised, and took only a few minutes as promised. If you would like to participate, click here.

technorati tags: mediciglobal, msresearch, downthemspath, mssurvey

Share Your Art and Writing

Are you an artist with work to share? Here are two venues:

The MS Foundation is a service based non-profit organization the helps MSers especially focusing on improving quality of life. The website has developed a new forum, "Voices," designed for authors, poets, writers and photographers to share their work.

Tonight I read a short story, a poem, and saw pictures of a koala, lorikeets, baby platypuses, and a baby possum with burned "hands." Cute, cute, cute.

Anyone touched by MS can offer work, MSers, friends and family. Check topics in "To Our Visitors" the read "Forum Rules" to get started.

The second venue is Kaleidoscope Magazine that explores "the Experience of Disability through Literature and the Fine Arts." They publish fiction, non-fiction, book reviews, and visual arts of all kinds.

See publishing and payment information, or subscribe to the twice-a-year magazine.

Enjoy!

technorati tags: art, photography, writing, magazine, msartists, downthemspath

Disability from A to Z

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

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technorati tags: downthemspath, positiveattitude, disability,

Driving To Independence

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.

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technorati tags: driving, independence, downthemspath, positiveattitude

Dancing Wheelers

Dancing was once a favorite pastime of mine, but I had to give it up when my balance left me. My scooter ensures my only dancing is with my arms and shoulders. However, some people just won't quit.

I wrote an earlier post about bunnymay wand her story about a woman dancing from a chair. She was not actually a wheeler, but she learned while actually living in a wheelchair in Mexico for weeks before the performance. She danced solo on stage.

Here is another one - Deaf Mom wrote about a wheeler who performed ballroom dancing with an upright partner. She has the video and it is certainly worth the visit. Thank you bunnymay and Deaf Mom for these stories that tell us not to give up dancing.

technorati tags: wheelchairdancing, downthemspath

A Memory from the Past

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."

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technorati tags: downthemspath, wheeler, wheelchair, positiveattitude

Wheeling Through Time

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.

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technorati tags: DowntheMSPath, disability, disaboom, wheeler, wheelchair, wheelchair, history,

Finding Joy in a Pain-filled Life

"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.

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technorati tags: DownthMSPath, disability, ms, , positiveattitude, mssymptoms, joyoflife, pain, pain, management, facepain, trigeminalneuralgia

Is the Bone Broken?

Apparently it's not always easy to know if a bone is actually broken. Some are more obvious than others.

In April 2006 I was transferring into the car when I heard a loud POP and my leg hurt really bad. It hurt again each time I moved it. My doctor sent me for an X-ray and MRI. I thought the X-ray would have been enough and the MRI was overkill.

The nurse told me everything was fine and I should go home, so I did. I was home less than half an hour when she called and said I had to go back. There was a fracture after all.

I always thought that was strange. Then I found an article on WebMD that says it may not be so strange after all. Sometimes an X-ray does not even show a fracture. Other tests such as an MRI or CT scan. I know the MRI simplified diagnosing MS and injured athletes often have MRIs, so I should not be surprised. The role of the MRI in diagnosing and identifying problems is expanding.

I was lucky they kept looking at my results after I left. Otherwise I would not have known my leg was actually broken and not merely bruised.

technorati tags: MRI, bonefracture, downthemspath