CMT Awareness--Call to Action!

by Linda Crabtree : 10/26/2011 8:04:40 PM : Category: adults


Hello, you! Yes, you reading this at you computer; you, sitting in the kitchen in your pajamas or taking a break during lunch at your desk. You, with Charcot-Marie-Tooth.  Do you know you can make a difference and it doesn’t cost a cent?

By putting yourself out there, even just a little, you can change things. Shy? You don’t have to go beyond your comfort level. Not a public speaker? There are many things you can do that don’t involve public speaking.  Don’t want to be pitied? If you do it right, no one will pity you. It’s all about attitude and how you present yourself.

Observing people around me through the years, I’ve experienced both empathy, which is the ability to put oneself in my place, and sympathy, defined as feeling pity or sorry for someone. When they first see me on a scooter and learn that I can’t walk and then see my hands, which I tend to talk with far too much, and which are obviously very weak and abnormal looking, they can’t imagine how they’d manage if they were me. “Poor thing. Just look at her.” That’s pity.

Then they see me tooling around with little effort on my scooter, going about my business of promoting accessible tourism in Niagara, Ontario, Canada through  I’m obviously at ease. I have a smile on my face. I’m networking, handing out brochures and business cards and finally, thanks to hand controls, I drive away in my Braun Rampvan. People start to change their minds. I’m a useful part of society, not to be pitied, and they begin to empathize. They begin to put themselves in my place. And then, wait for this, I’m a source of curiosity. What is your disability? How did you learn to maneuver your scooter like that? Where did you get that van? How do you drive it? And all of those questions give me an opportunity to talk about my disability and promote awareness regarding CMT.  

We all know people who have put themselves out there, big time:  Take for example, Christopher Reeve. Yes, he was an actor – putting himself out there was something he did regularly -- and everyone loved Superman. But put yourself in his place just for a minute.  After the fall from a horse that injured him so badly, he became a paraplegic. Imagine what he and his wife had to go through to be ready to meet the press for an interview. Imagine the work he had to do just to be able to speak, and the incredible fatigue he must have experienced after each public appearance. But, he did it because he knew that what he did raised awareness immeasurably and many research advances have come from the money he raised.

Canadian Rick Hansen, a paraplegic, rolled his wheelchair through 34 countries back in 1954-57. The foundation he started from the funds raised has been making huge strides in spinal cord injury ever since. He wasn’t famous when he started out, and he’s never looked for fame, but everyone in Canada knows who he is and what he promotes.

Another young Canadian, Terry Fox, almost made across the entire width of Canada before cancer claimed him.  He ran on one good leg and one artificial one. The Terry Fox Run is still raising millions of dollars for cancer research every year and Terry is a Canadian icon.

Allison Moore started the Hereditary Neuropathy Foundation in 2001. She wasn’t the first to move forward to promote CMT, but what she has begun is going to have a lasting effect on others who will come after her just as what those before gave her. We build on the past to go forward.  Every step and every effort helps no matter whether it be as big as starting a foundation or a small effort barely noticed by anyone. It all fosters awareness.

We’ve just passed CMT Awareness Month. It was September. If each of us had written a letter to the editor, or made a call to a radio talk show or put something about CMT on our You Tube page or blog or twittered about it, think of the noise we could have made.

And, it doesn’t have to be just about CMT, either. It can be about awareness and disability.

An example I can think of is one of a woman who uses a wheelchair for mobility and works for a local organization that teaches people life-saving techniques. She works in an office removed from head office and had never gone to the head office Christmas party because she didn’t feel she fit in. But, her cohorts convinced her that everything would be well, so she went, and it was, until she got in the front door and her chair met a step.

Her friends took the step without thinking, but she and her chair had to be lifted up the step by two men. No one had ever thought about that step and it was that step that made the building impossible for anyone using a mobility device to work there, to take CPR life saving or baby-sitting courses or anything else they offered.

I just wrote a letter of recommendation for the organization.  They are applying for government funding to make their parking area, the entire office, teaching room and washroom accessible. Because one woman put herself out and experienced momentary discomfort, she has changed the future for hundreds of others who will save lives and, consequently, change the world to come.

You never know how a simple act of putting yourself out there will affect others. A young girl in a wheelchair could take a babysitting course that will save a child’s life. That child could grow up to be a Nobel Peace Prize winner. All because someone decided to put herself out there and go to a Christmas party. Far reaching consequences, indeed!

I recently heard something that gave me pause to think. If you take every difficult situation as a problem, it will be difficult. But, if you perceive it as a challenge, you’ll be constantly raising yourself to new heights. Think of the self-esteem you’ll foster. Instead of facing a lifetime of problems, you’ve met and dealt with many challenges and you’re a lot stronger for the experiences. And, you’ll be breaking down barriers for yourself and others all the time.

Is there snow in front of your bus stop? Call the city or write a letter to the editor so everyone can get on the bus. Can’t get into your polling station? The government needs to know so everyone can vote next time. Can't reach items at your favorite store? You can educate them that retailers needs to make things accessible for all consumers. Is your local hospital one that teaches? Offer to do a workshop for students on CMT.

We can’t all be heroes, but just by putting ourselves out there in many small ways, we can change the world for people with disabilities and put CMT, said to be the most common disease no one has ever heard of, on the map.

Linda Crabtree founded and ran CMT International from 1984 until 2002. She worked with thousands of CMT families and draws her knowledge from past and present experiences. She has CMT2A2. Currently, Linda moderates a CMT yahoo forum CMTCAN.  

As well as her newspaper column, and her column for us, here are few other ways Linda raises awareness about her area and CMT and you can do these, too, in your area :

AccessibleNiagara on Facebook

CMTCAN yahoo

The information contained in this article is the opinion of the author and does not necessarily reflect the official views of the Hereditary Neuropathy Foundation or the Centers for Disease Control and Prevention.  Nothing in this article should be construed as, nor is intended to be used for, medical diagnosis or treatment.  This information should not be used in place of the advice of your physician or other qualified health care provider.  Should you have any health care related questions, please call or see your physician or other qualified health care provider promptly.

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