Mary Ann Wickham: Foundation of Services

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Mary Ann Wickham was one of the first volunteers for the Muscular Dystrophy Association of Canada, and her unique contributions to the organization have shaped the Services departments. Her unique approach gave the newly formed MDAC a stronger purpose, and presence. Research was the base of the organization, but providing information, equipment, and care for those affected by neuromuscular disorders rounded out the MDAC. We honour an exceptional volunteer every year in her name with the Mary Ann Wickham Award for Volunteer of the Year.

Below is an excerpt from Connections (MDAC newsletter,) issue from September 1989:

The Lady With The Lift

Thirty-five years ago Mary Ann Wickham got off a bus on the corner of Bay and Wellington Streets in Toronto, looked across the street, and happened to see a sign in a store window – “The Muscular Dystrophy Association of Canada.”

“I knew nothing about muscular dystrophy, but I went in an asked the people there if I could do some volunteer work,” said Wickham, who had just moved to Toronto in 1954 and was working full time as a nurse. “The next week I went to my first Toronto Chapter meeting. Dr. David Green was there, and so was Arthur Minden. When they heard of my nursing background, they asked if I would mind visiting some of the people in Toronto who had muscular dystrophy.”

So began, in these chance circumstances, a new chapter in Mary Ann Wickham’s life that would ultimately determine her future career. But these same lucky circumstances would also help to shape the future of the Muscular Dystrophy Association of Canada as we know it today, turning it into an organization that not only supports medical research, but offers services and information to its clients as well.

For   eleven years – from 1954 to 1965 – Mary Ann Wickham was the Client Services staff for the Muscular Dystrophy Association of Canada, always on a volunteer basis. But she also became deeply involved in other Association activities, too: helping to organize social events, starting new MDAC Chapters in other Ontario cities, travelling throughout the province to talk to clubs and groups, and ultimately becoming a member of the MDAC Board.

But Wickham’s primary commitment to MDAC was always visiting clients, at least two nights a week and all day Saturday.

“I kept the equipment in my basement,” she recalled. “If anybody needed a wheelchair or a Hoyer lift, I would deliver it. There were about 30 clients in Toronto then – and it quickly became very frustrating, because I was really not able to visit them all on a routine basis. I ended up with a map on the wall of my house with little pins showing where everyone was, so if I had to make a call in a certain district, I would always make two or three other stops in the vicinity to see how everyone was doing.

“Thirty-five years doesn’t really seem that long ago,” Wickham said, “but compared to those days, the information we have today about neuromuscular diseases and the change in attitudes towards disabled people seem absolutely incredible.”

In 1954 there was no public funding of wheelchairs, for example – “MDAC had to buy all of them,” said Wickham. “And we recycled them, too, again and again. No one had training in fitting wheelchairs either. The only choice was between wheelchairs for adults and those for children, with perhaps a pillow on their back or on the seat to try and make things a little more comfortable.

“Almost no one knew anything about genetics back then or had any notion that muscular dystrophy might be inherited,” she recalled. “One family I spent a lot of time with had three sons with Duchenne muscular dystrophy and two daughters with peroneal muscular atrophy. The poor mother just thought it was bad luck that all these sad things had happened to her family.

“There was no knowledge in the general public that there was more than one kind of muscular dystrophy – everyone just called them all ‘creeping paralysis.’ Many people even thought muscular dystrophy was contagious. Sometimes at the information booths we set up at the Canadian National Exhibition or at local fairs, people would step back, saying they didn’t want to take any brochures, because they might get muscular dystrophy. Families sometimes told me, too, that their child was being kept out of school because other parents were afraid their own children might catch muscular dystrophy.”

Attitudes toward disabled people, even on the part of families who loved them and governments who wanted to help them, have gone through a complete metamorphosis in the past 35 years, too, according to Wickham.

“There was no thought of preparing a child with muscular dystrophy to go to work or to live independently,” she remembered. “Parents just wanted to keep their children at home, to make them as comfortable and happy as possible. Most schools and universities didn’t accept disabled students anyway – there was no transportation available, and all the public buildings were inaccessible.”

It was in this general climate that Mary Ann Wickham began her years of volunteer work on behalf of those people with neuromuscular diseases. She brought her ideas and her experiences with her to MDAC Board meetings in Toronto, always arguing one constant point: to support medical research is extremely important, but the services MDAC could offer its clients were equally important.

“I talked about the human side of my work, about the joy of being able to give a wheelchair to a boy who had never been able to go out shopping with his family… and I think that was what finally convinces many of the Board members.”

In 1965, for the first time in its history, MDAC hired a full time Patient Services staff person, a nurse, who worked out of the Toronto office. Today there are 16 Client Service staff in all regions of Canada, providing the equipment, advice, and information Mary Ann Wickham so ably dispensed all those years as a volunteer.

“I feel gratefully today for my past with the Muscular Dystrophy Association of Canada, that it has been part of my life to feel I was able to contribute something to muscular dystrophy,” said Wickham. “I think the greatest joy I have today is meeting a person who tells me – ‘Years ago you were the first person who contacted me after we had our diagnosis of muscular dystrophy, and I feel very close to you.’”

What was it that Mary Ann Wickham told families 35 years ago when she visited them at night soon after their child was diagnosed?

“Usually I would just sit down and chat with them,” she remembered. “On that first visit, I would tell them as much about the disorder as they were prepared to ask, and no further. Most of all I would say, ‘Please remember, we are here… call if you have any questions. Remember… you are not alone.’”

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Today, Muscular Dystrophy Canada is still committed to providing excellent services to those affect by neuromuscular disorders, their families and communities. Pleaseregister to stay connected and to receive services.

 

 

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