Living with a disability and making it work for you and others

Linda Crabtree, C.M., O.Ont., O.M.C., B.A., LL.D.(hon.)
Founder of Accessible Niagara and CMT International (1984 - 2002)

contact: linda@lindacrabtree.com

I think this is a bit much but a lot of people like to know who they are writing or talking to, so here goes.

I was born in Ontario, Canada in the early 1940s. By the time I was eight months old there was "something wrong with Linda." At birth I had my mother's very high arched feet but as I began to carry my weight and learn to walk they soon fell until I had very flat feet. I learned very early that to stand still I had to bend my knees, and I remember being so tired from standing like that in line at the local movie theatre I'd pay my girlfriend's way into the theatre so she would be close at hand and I could just touch her to keep my balance and not have to bend my knees.

By the time I was six or seven, I had complete footdrop meaning I couldn't lift my foot to hit the ground with my heel as I took a step. By the time I was 12, I couldn't move anything, not toes, ankles, or even stretch out my leg from the knee... everything had atrophied in spite of almost nightly physiotherapy sessions with my mother under the direction of a doctor. Because of the footdrop I tripped often and had chronically bruised and cut knees; so I was put into heavy, metal braces from age seven until 14 when I protested so much my mother threw them in the closet. After that I wore soft, light moccasins and other very light shoes until I was 17 when I quit high school and joined the local newspaper, working in the library or morgue. One of the photographers at the paper got to know me and told me he had a friend studying to be an orthopedic surgeon at McGill University in Montreal and that he'd ask him about me. By that time I had been vaguely diagnosed but nobody was really sure what it was. Most doctors thought I'd had polio. Remember, this was in the 50s so not much was know about the disease I do have which is called Charcot-Marie-Tooth disease. CMT is named after two French neurologists and an English physician, Howard H. Tooth and is also known as hereditary motor and sensory neuropathy.

That young McGill student sent me to a new doctor in town who had just moved up from California. He knew how to do a foot and ankle fusion and I had both feet and ankles fused using a procedure known as a Triple Lambrinudi Arthrodesis. Each ankle and foot had to be fused separately but, in my case, there were five operations altogether because the doctor fused one heel over too far to the outside and I couldn't wear a shoe on that foot. The operations and healing time took two and a half years. I was in cast five times for six months each time and alternated between casts to the knee and then full leg casts depending on what he was fusing at the time, foot or ankle. After that, I had just about all of my toes fused because they were curling under and I was walking on my toenails.

Finding shoes had always been a real problem but after the operations I found my heels were still set so far to the outside that I could break down a pair of normal shoes in a week. I finally found a really good custom shoemaker, Johnson Brothers in Scarborough, Ontario, and they have make me lovely high boots with reinforced heels.

I think I was a week out of my final cast when, at 21, I boarded a train heading for Montreal and art school where I used crutches for the first two months and then gradually learned to walk again. My knees were so weak and I had lost so much strength in my legs that I had to have someone walk to school with me or I'd "knee" it up the curbs. Walking down a road until you find a curb or a driveway isn't safe in any big city. My friends were all trained and all learned to be a walking railing for "Crabtree" for the three years I studied art in Montreal.

My first job out of art school was in a photo studio where I "bummed" it up a huge flight of steps each morning to the second floor and didn't "bum" it back down until closing time ... it too much work to go out for lunch. I bought running shoes to wear so I wouldn't slide in the water coming off the print dryers that I worked, pulling thousands of photos of half-naked women standing beside stacked cans of oil. Needless to say, I got out of there quickly and got a job with another art studio specializing in work for the World's Fair, Expo '67.

In 1968, I returned to Toronto and married. And, I eventually returned to work for the local newspaper, this time taking obituaries every morning over the telephone from local undertakers and deciphering and preparing thousands of letters-to-the-editor for print. Eventually I was given the job of editing a weekly page on art and I did that for nine years (still doing obits and letters-to-the-editor, as well) and then was promoted to the Family Section where I wrote about everything. During the last two years, I noticed that I was having trouble typing on the computer at work and that I was exhausted most of the time, couldn't climb stairs even with a railing and would often fall down stairs. I have always driven with hand controls and one morning I drove into the employees' parking lot, opened the door and fell out and under my car. I thought, as I looked up at the exhaust system, there has to be something else for me, I just can't do this any longer. I retired from the paper six months later after 12 years. I was so down I was suicidal.

My biggest problem was I had never really accepted my CMT and suddenly, it seemed, I was so disabled I couldn't function. I'd written about disability for years but I had always avoided other people who were disabled not wanting to be thought of as "one of them." But I was one of them, whether I liked it or not, and if I wanted to get on with my life I had better start getting used to the fact that I had a pretty severe disability.

A few appointments with a very good psychiatrist who let me talk set me back on an even keel and I enrolled myself in university to find out why I was so down, so depressed, what had happened to me. I studied psychology for three years, only taking courses in other fields because I had to, and I learned a lot. I was allowed to tailor-make some of my studies and I dove into grief and rehabilitation counselling like a duck to water. Just to show you how much my life turned around while at university, I began wanting to specialize in greif counseling and graduated doing work on sex and disability. Quite a turnaround, I'd say!

When I began university, I realized I had to get an electric scooter because I couldn't walk the halls, I'd get knocked over. When I graduated with honors on that same scooter at age 45, I received a standing ovation from the crowd. Little did I know that seven years later I'd again be on that same stage receiving an honorary doctorate.

After graduation, I was accepted into the State University of New York at Buffalo for my MS degree in rehabilitaion counseling but after four months I was a basket case. It broke my heart but I had to leave. My mind was eager to learn more, my body simply wasn't up to it.

The second year of my studies at Brock, 1984, I didn't take a summer evening course and decided that I needed to find others who also had CMT. I had only met one other person who had it and I needed to know more about the disease that was changing my life so I could truly be well mentally. Unfortunately (or fortunately depending on how you look at it), the Muscular Dystrophy Association of Canada didn't return my calls, so I sat down and wrote letters to editors of major newspapers all across Canada. Before I knew it, I had received letters from more than 300 people, all with CMT, all searching for the same answers. I also wrote to American papers and more people came forward. I almost panicked. There was no way I could answer all of those people so the only thing to do was to put my artistic, photographic and writing experience to work and start a newsletter. The CMT Newsletter was born in August 1984. After that came CMT International, the not-for-profit organization, to keep the newsletter going, and after that several conventions that almost wore me to the ground and some guest speaking that I also found exhausting. I could dictate letters though and could help by talking to people with CMT on the telephone and through mail and e-mail. Thank heaven for good secretaries. The 32 page, CMT Newsletter went out to several thousand people in 22 countries for 18 years until my husband turned 65 and I go so terribly weak even talking became exhausting. I had always relied on the expertise of good people who were able to do what my mind dreamed up. But by now, I could no longer walk at all, had lost the use of my vocal cords and had been operated on to help that, was having trouble with exhaustion and breathing, had experienced double cataract surgery and my hands were so weak I could barely shuffle paper much less hold a pen for any length of time. We had helped thousand, promoted research, given away thousands of dollars of scholarshpi money to students with CMT all over the world, and published 103 newsletters that went out to some 32 countries We shut the charity down in February 2002, leaving a huge website behind that featured the best of those 103 newsleters. It is still up at www.lindacrabtree.com.

During that time, I became a member of the Order of Ontario and the Order of Canada, became a Paul Harris Fellow through Rotary International and an honorary lifetime member of Beta Sigma Phi as well as having received the Canada Volunteer Award. I have a whole wall of medals and honors from the government and awards from organizations. Someone asked me once what they meant to me. I have thought about it because I've had most of them for many years. Because they come from my peers and my country they help me see that even though I am severely disabled physically, I've accomplished something worthwhile during my lifetime. I've been able to help others better cope with their disability. I found something worthwhile that I could do, even though my CMT was progressing, and I did it. I'll try to help others until I die or I can no longer talk, see or type at all ...I think it's just part of my nature. I really don't feel there is anything better you can do with your time on earth or spend your physical being on. Someone once told me that I could have done absolutely nothing for the rest of my life when I left the paper and no one would have thought less of me. I know I would have ended up in a mental institution. I have a need to give, to keep busy no matter how little I have to give, and a need to write. A blank computer screen is an exciting challenge to me. How best can I use it to help people out there searching, as I was and still am, for answers.

Believe it or not, I still run into people who think I'm develomentally delayed because my hands look like claws and I use a wheelchair or scooter for mobility. They are far and few between but hearing them enunciate D-I-S-T-I-N-C-T-L-Y as they speak loudly to me and sometimes being on the receiving end of their impatience, makes me take one look at that wall of medals, honors and degrees and I know I'm none of the things they think I am. I don't even need te medals anymore. I know who I am and what I have done throughout my life and believe there is nothing lacking there. I guess that through the years, I sometimes needed to be told that my effort and work was worthwhile and I certainly have been told, many times over. It has been wonderful! My mother laughed when she said that I'm the only person she knows who has more letters after their name then they have name. It's true.

In 1977, I divorced my first husband and in 1980 married Ron Book, who ran the CMT International office for 18 years and now, in his retirement, looks after the house and me and the dog so that I can do the things I want to do without worrying about what we have clean to wear or who's making supper... things like learning how to put up a Web sites (I'm not the bridge playing type or a TV watcher) and attend a few meetings a month regarding accessibility issues in my community. Ron is one terrific guy. It isn't every man who would dig into housework and cook.

I can no longer walk and use an electric scooter all the time, indoors and out. To that end, we have had our Chrysler van made into an Entervan by the Braun people. There's a side-loading, electrically run ramp that unfolds smoothly from the door behind the passenger seat. I can bomb up the ramp on my scooter, leave it behind the seats, transfer to the driver's seat and away I go using my hand-controls. I love that van and it gets me all over Niagara. My hands are very weak and I have no grip but use a special quad grip that my entire hand fits into to hold the steering wheel. I type on the computer by using two bowling pencils woven in and out of my fingers to stiffen them so I can hit the keys. My vocal cords are affected but a voice activated computer is not for me. Speaking wears me out. I have breathing problems with my CMT and do not sleep well. I also have a lot of pain from sitting but when you don't walk you haven't much of an alternative. I cannot cook because I drop everything. I can still feed myself but I can't cut the food most of the time. My hands just won't grip the utensils. However, I have found that if I take my own advice and make pacing and moderation my watchwords, I not only have a voice most days, but breathe pretty well most of the time. Exhaustion is with me a great deal though so I have to limit everything I do.

After trying six months of not doing much at all in 2002, I found that I had to keep my mind busy or go a bit nuts so I regenerated a project I had started in 1997 called Accessible Niagara. It has three parts to it: a Web site which is now up and running at www.accessibleniagara.com and a printed guide echoing the information on the Web site but in less detail because space is limited in its 28 pages. The third step is a multi-million dollar resort for people with disabilities called Trillium Forest that I'd love to see built in Niagara but, being realistic, don't think I'll ever see happen in my lifetime. However, another person had the same idea as I did at the same time and he has been able to move forward with it. I've learned that if it is a good idea, it doesn't matter who does it, as long as it gets done. It is called Heartland Forest and it will be an absolute gem for Niagara. It will be totally accessible, universal design is being used as the plans eveolve and I am thankful that I m being included in the planning.

In May of 2002, I joined the Mayor's Advisory Committee on Accessibility for the City of St. Catharines and am now co-chair and am vice-chair of the Region of Niagara Accessibility Advisory Committee. In 2005, I became one of four people who founded the Coalition of Ontario Accessibility Advisory Committees to work with the provinical government on our Accessibility for Ontarians with Disabiltities Act (Bill118). I write the website (www.contaac.ca) and handle the e-mail discussion forum. I also write a regular column called Access Niagara focusing on disability and accessibility for The St. Catharines Standard (some of them are on this website) and have for many years. I am able to volunteer my time, as usual, as long as I can work at my own speed, rest when I have to, and can keep the chronic nerve pain I experience under control.

Also in 2002, I decided to revisit another project I had had to let go when I ran the charity. Accessible Niagara, information to open Niagara for people with disabilities. I began with a website, raised the money to put it up, learned Dreamweaver to do it and audited with my part-time assistant, Eileen Zarafonitis, everything on it. The natural spin-off from that was a printed guide. In 2003, I raised $30,000 to print 30,000 guides and in 2005 printed 50,000, 40 page Accessible Niagara guides with the financial help of the Trillium Foundation and the Ontario March of Dimes who allowed me to apply for the grant through them. The most difficult part of this project is raising the money to keep it alive although it has helped thousands come to Niagara, raises awareness wherever it is and has put Niagara on the map as an accessible destination. The 70,000 people with disabilities living in Niagara also benefit as venues are made accessible to attract the tourist trade. The free Accessible Niagara guide is available by calling 1-800-263-2988 or e-mail: gateway@tourismniagara.com. The website is at www.accessibleniagara.com.

My involvement in the community has been recognized during the last three years with the Canadian Peter F. Drucker Niagara Regional Voluntary Sector Innovation Award for Community Leadership, the Joe Dinely Commemorative Award for Exceptional Leadership and Commitment to Furthering Integration and Accessibility of Persons with Disabilities in the Niagara Community, from the Ontario March of Dimes, and the T. Roy Adams Humanitarian of the Year Award from the Region of Niagara along with the Ontario March of Dimes Rick Hansen Award of Excellence.

Living with a progressively debilitating, neuromuscular disease all of my life, and now with chronic pain as well, has taught me a lot. I still don't really know my limitations but maybe that's a good thing. I think that if you stop stretching your mind, you might as well be dead. Unfortunately, pushing myself into challenges that excite me also wears out my body but I'll never have to say I let my mind stagnate. I tire quickly because I've perhaps half of the muscle function of a normal person and my nervous system is severely compromised. Some days I'm just no good for anything but rest. But, I'm always learning something new or on the edge of tackling something I've never done before. There's an element of danger and risk in that and, as usual, the deadlines loom. I love it. Every morning, when I wake up, I look at the underside of a shelf over my bed and read a sentence I stuck there many years ago, "Thank you, God, for one more day to do the best I can with what I have left." A little hokey maybe, but what else is there? Huh? A gal's gotta do what a gal's gotta do.

There, now you know a little about me!