Helping People Cope
The War to End All Wars didn’t, of course. In fact, for many of the soldiers who came home from the First World War, there would be a lifetime of new battles to be fought and won, as they struggled to adapt mangled limbs and other horrifying disablements to the demands of civilian life. Some learned to adapt; some didn’t. A special few – among them a young soldier named Edwin A. Baker – turned personal tragedy into resounding public victories.
Captain (later Lieutenant-Colonel) Baker was blinded in active service and sent for rehabilitation training to Saint Dunstan’s School, a facility operated by the Royal National Institute for the Blind in England. The experience left its mark on the young soldier; upon his return to Canada, he and six blind and sighted colleagues sought and obtained a charter from the federal government to establish the Canadian National Institute for the Blind (CNIB) to benefit visually impaired servicemen returning from overseas.
Later that same year, in 1918, the new institute amalgamated with the Canadian Free Library for the Blind, which became the CNIB’s library and publishing department. Colonel Baker became General Secretary in 1920 andater Managing Director, holding both positions until he retired in 1962; he was elected and remained Honorary President until his death in 1968.
The majority of those people served by the CNIB, the close to 100,000 blind, visually-impaired and deaf-blind Canadians, are seniors. In 1997, of just under 9,000 new clients, less than 13 per cent were under the age of 50, with slightly more than 14 per cent in the 50-to-69 group; the remainder – almost three-quarters of the total – were over 70, with half their number coming from the 80-to-89 age group. Overall in 1997, the CNIB (with some 1,200 staff, coast to coast, and 22,000 volunteers) served more than double the number of blind and visually impaired clients that were served as recently as 1985.
Some 55 per cent of those who turned to the CNIB for help in each of the last couple of years have age-related macular degeneration, ‘a condition that’s not currently treatable or preventable,” says Fran Cutler, a CNIB board member and chair of the National Communications Committee. “It doesn’t mean nothing can be done. That’s the line new clients so often say they’ve been told when they first come to us.” The CNIB can help people to find ways to keep their independence, to thrive in a sighted world. But, according to a 1998 Environics survey, only one in three Canadians named CNIB when asked to think of companies or organizations involved in eye health and vision-care services. More than 40 per cent couldn’t name a single organization working in vision care.
The survey echoed a study the CNIB conducted in 1995, which found that only about a third of respondents were “extremely or fairly familiar” with CNIB, while two-thirds were “not very or not at all familiar” with CNIB services. One reason, certainly, is th e way low vision is viewed. While heart disease and cancer were matters “of high concern” to 50 and 60 per cent of respondents respectively, only about one quarter saw vision loss as a matter of high concern. Yet, a majority of survey respondents agreed they’d have “considerable difficulty living with vision loss.”
The trouble is, Cutler says, “people are unlikely to take an interest in services unless they’re certain it could very possibly happen to them. When people lose vision, it’s a terrible shock, believe me. They lose not just eyesight, they lose self-esteem. They lose the ability to do everyday tasks. They feel isolated and embarrassed, because they can’t see their friends’ faces, can’t recognize anybody. They can’t read for information or for pleasure. If no one around them has any experience with vision loss, expectations all around are likely to be very low. That leads to increasing dependence on family, friends and social support systems.”
“This need not happen. With guidance in improving lighting, using magnifiers and developing coping techniques, most vision-impaired people can preserve self-esteem and independent living skills. That’s the bottom line for everybody concerned with healthcare, particularly eye care, for an aging population. CNIB has committed resources, financial and human, to raising awareness about vision loss and what to do about it. We’ve provided training to senior staff and communications volunteers in each of our 60 offices across Canada.”
Most CNIB programs are available across the country, says Linda Studholme, national director of rehabilitation technology, though there are regional differences that reflect varying needs and resources. Core services are designed to serve clients of every age, from infants to the most elderly seniors. Counselling is usually the first step, to help clients and their families adjust to vision loss and get a sense of what help’s available to them through government programs or community resources. A client may be referred to a social worker, who can help him or her determine what sorts of financial aid they’re entitled to, from income support and drug plans to programs that help with assistive devices or redesigning a home to eliminate barriers. Upon request, a social worker can act as a kind of “point person” for the client, using an assessment of their situation to suggest how their needs might be met through referrals to other resources, such as homecare or nursing.
One of the most common first referrals with seniors, Stud-holme says, “is vision rehabilitation, and that’s going to a low-vision clinic or one of our own low-vision nurses to find those techniques and tools to help them maximize [their vision].”
Among the simplest and most useful are magnifiers, which may allow someone with low vision to read their financial statements and mail – not to mention books and newspapers. For many seniors, those are key considerations, Studholme points out: “If they can continue to look after their own finances, do their own shopping and maintain a pretty good lifestyle, they’ll want to continue living independently.”
“There’s often a sense of fear that they can’t do that, so, the low-vision service finds magnifiers that work for them. Sometimes it’s one, sometimes three or four. Sometimes it takes a number of visits to train seniors how to use them, but most of the time we’re quite successful. People do find tools that create a real sense of independence.”
Younger clients may be more concerned with finding ways to keep working, and there, too, the CNIB can help – again, beginning with counselling to find out exactly what it is the client wants to do, what their fears are, what kinds of supports, services and training they may require to accomplish their goals.
Someone who suddenly discovers they can no longer drive, for example, may need orientation and mobility training before tackling public transportation. “We’ll send a specialist out,” Studholme says, “and they’ll spend some time with the client, teaching him or her how to find routes and travel independently.”
There’s also home-based teaching available to instruct people in ways of adapting to kitchen difficulties or problems elsewhere in the home. “It always goes back to your lifestyle,” Studholme says. “What are the things you think you can’t do or that are creating a sense of fear or lack of safety?”
Losing some or all of one’s sight is terrifying, and most people who arrive at the CNIB are understandably fearful. “You can’t measure the fear from one age group to another or one person to another,” Studholme says. “The fear and loss of independence in someone who’s 80, who’s always maintained their own home or apartment – moving into a nursing home can be just as acute as it is for a 50-year-old who’s looking at a significant career or lifestyle change.”
With every change of season, but particularly in the fall, the CNIB gets calls from people, especially seniors, who think they’re experiencing more vision loss. They may be, but oftentimes – particularly with people who have light-sensitive macular degeneration – they may simply be responding to the seasonal change in available light. Nevertheless, “they’re having more problems shopping, going out, going down stairs, and feeling like they’ve lost their motivation, and they want to see us again,” Studholme explains. “We invite them to come back in. Let’s make sure about what’s really happening with them.”
In fact, it usually takes people at least a year – all four seasons – to fully adapt to low vision, because each season has tasks associated with it that have suddenly become a new experience. “If you lose your vision in the fall,” Studholme says, “inevitably you’re going to have to start thinking about, ‘Can I read the thermostats in my house?’ and ‘What are the various other things I need to do?’” Studholme encourages people to call if they’re getting discouraged: “If we don’t have the answer, we’ll try and connect you with somebody who does.” In the long run, though, people are very innovative, she says. “They find ways to adapt.”
Dr. Ken Walker practises medicine in Toronto and also writes under the pen name of Gifford-Jones.—>