Living with low vision

Sight is almost infinitely delightful, and immensely useful,” noted 13th-century scientist/philosopher/Franciscan Roger Bacon. “Without it, one cannot learn anything marvellous. Sight shows us the variety of all things, and opens the way to a knowledge of everything, as experience teaches.”

Indeed, we are visual animals. It’s been estimated that vision accounts for three-quarters of everything we perceive, sifting 10 million gradations of light and seven million shades of colour from the billion kernels of fresh information our eyes harvest for the brain’s delectation each and every wide-eyed, waking second. It’s a lot of traffic on a very busy highway. Some six-and-a-half million neurons leave the brain through the cranial nerves and spinal cord, snaking through fibre and bone to every outpost of the body’s sensory apparatus. But more than two-thirds of those tingling nerve ends are dedicated to the function of our eyes alone. Shut down our sight, and the universe of our perceptions dims and contracts.

“Vision impairment is the most important quality of life issue that we face in the healthcare field,” says Dr. Donald Farrell, a past chairman of the New Brunswick dision of the Canadian National Institute for the Blind (CNIB), and chairman of the E.A. Baker Secretariat and the E.A. Baker Foundation for the Prevention of Blindness. “It is the most feared disability amongst our aging population.”

^Despite that, despite the rapid growth of our elderly population, despite a steady increase in the number of Canadians with serious visual impairment, neither governments nor the general public have placed vision loss on their healthcare agendas. “Is it realistic to call the current situation of vision loss and prevention of blindness in Canada a crisis, or just hype?” Farrell asks.

Judge for yourself: More than one in nine Canadians over age 65, and more than one in four over age 80, experience severe vision loss that cannot be corrected with standard eye glasses. According to a 1991 Statistics Canada survey, 635,000 Canadians identified themselves as “having a significant level of vision loss after correction that affects their daily living.”

The CNIB is seeing a flood of people – 10,000 new clients each year – requesting its services for conditions like age-related macular degeneration, cataracts, glaucoma and diabetic retinopathy. The CNIB now has 93,000 clients, up from 39,000 only 15 years ago; based on current trends, Farrell expects that number to double again before another 15 years has passed.

Dr. Barbara Robinson, an assistant professor in the School of Optometry at the University of Waterloo, believes the problem may be even more severe than Farrell suggests, because the only data available significantly under-represent the true prevalence of low vision in Canada – an interpretation corroborated by international studies: British researchers, for example, found that only one out of four people eligible to be registered had registered for blind services.

It starts with the fact many people who should be aren’t registered as blind or low-vision because they resist being labelled as blind. In some places, under-registration’s due to religious, cultural or language barriers. In certain cultures, for instance, a woman with low vision might not be able to take orientation and mobility training because the only available instructor is male, and she’s forbidden from being alone in the company of a man who isn’t her husband or close relative.

In Canada, says Dr. Paul Courtright, director of the Centre for Epidemiologic and International Ophthalmology at the University of British Columbia, “we often assume that, because our medical system is based on a premise of equal access to all, that means that everybody must have equal access to these services. We also seem to assume that all Canadians who need services, utilize services.”

As part of a routine cataract outcome-assessment program in Vancouver, Courtright and his colleagues compared a group of Caucasian-Canadian patients with a similar number of Chinese-Canadians. “Pre-operatively,” he says, “about five per cent of the Caucasian patients were blind. But if you look at the Chinese population who’ve come in for cataract surgery, 15 per cent of them are blind pre-operatively. This suggests that for some reason the Chinese-Canadians have either not used the services soon enough, or these services are not available to them in a fashion that they can use.” Courtright found the same discrepancy between male and female cataract patients – more women are blind before surgery – no matter what their ethnic origin. While Courtright doesn’t have a definitive explanation for the discrepancy, he has been able to ferret out some general patterns that suggest what some of the common barriers to access to services are.

Some are obvious, such as distance from available services for rural populations – though distance can be a problem in urban areas, too, especially among people who are elderly, have mobility problems or no access to a car.

Distribution of ophthalmologists is always a problem. Inevitably – and it’s a problem everywhere, not just in Canada – specialists congregate in disproportionate numbers in cities, while outlying areas remain underserved. Yet, even within urban areas, there are issues about how many specialists are accessible to specific sub-groups. For instance, in Vancouver, where one quarter of the population is either Cantonese- or Mandarin-speaking, “there are only one or two Cantonese-speaking ophthalmologists,” Courtright notes. “We need to find ways to address the need within these populations based upon the culture and their physical need to get into services.” There are also a number of less obvious barriers to service, Courtright says. There’s a psychological barrier that’s especially prevalent among the elderly, he suggests, many of whom “view vision loss as a natural part of aging, and in many ways it is. But, unfortunately, many don’t view correction as an activity to approach. This, I think, is primarily true among our immigrant populations… and among women in particular.”

Again, while most older Canadians are aware interventions are available for certain conditions, “if there’s any group that’s going to be unaware,” Courtright says, “it’s going to be our immigrant populations most of all.”

Perhaps the most important barrier to service, Courtright says, “is adequate family and social support. We tend to assume that there’s adequate social support in families to encourage the elderly to seek services. But many studies have shown that is not always the case.”

This leaves service providers like the CNIB in a quandary. They’d like to help every Canadian who needs the benefit of their counsel and expertise; but, if every existing barrier to access were suddenly removed, the CNIB would be overwhelmed. That may happen in any case: The chorus of new clients is going to continue to grow, simply because the Canadian population is going grey. Already 70 per cent of CNIB’s new clients each year are over the age of 70, and both the percentage and the absolute number of people in this age group will grow dramatically over the next decade, likely overpowering the already stretched support system.

The first Canadian baby boomers, born in 1947, are now in their 50s and reaching an age where they’re “beginning to have a slight vision loss,” notes demographer Dr. David Foot, professor of economics at the University of Toronto and co-author (with Daniel Stoffman) of the 1996 best seller Boom, Bust & Echo. “Perhaps one of the reasons [vision loss] has not been a major issue on our national agenda is because most of our population has been too young to realize just how important an issue it is. But, as the boomers get into their 50s and 60s and start to buy their eyeglasses, it will become increasingly apparent [and] a major issue on our national agenda.” In fact, he says, “not now, but in the near future, a crisis will emerge as [boomers move into their low-vision years].”

Like Farrell, Dr. Graham Strong doesn’t think we have to look that far ahead. Strong is a professor in the School of Optometry at the University of Waterloo and director of the Centre for Sight Enhancement, which develops new technology to assist people with low vision. “Having served in the low-vision trenches for almost 30 years,” he says, “I resist the popular notion that the pending demographic shift portends a looming crisis for service providers. In my opinion, the crisis is already upon us, and it has been for many years.”

What most people overlook in their estimates, Strong argues, is that there’s already a crucial gap between the need for low-vision services – which is “a rational estimate of the number of people who might conceivably benefit from such services, assuming that quality services are available” – and service providers’ ability to actually provide them.

What keeps the situation from collapsing, Strong says, is that the demand for low-vision services – which is “the number of people who have appreciated their potential need for [low-vision] services and who are actively seeking them” – is actually quite small: “Research repeatedly has shown that only about five per cent of the people who really need low-vision services – by my definition, individuals who in all likelihood would benefit from these rehab services – ever darken the doorsteps of the people who could provide them.”

Even so, the burden on low-vision services is about to become unmanageable, simply by virtue of the age wave. As boomers approach old age, the relative proportion of the population that’s older will rise dramatically, and the reality is that vision impairment primarily affects older people.

But there are other factors that will boost the number of Canadians requiring low-vision services. As Dr. Foot points out, life expectancy for Canadians continues to increase – from 35 years two centuries ago to 59 years in 1921, 69 in 1951, and 78 in 1991. “Although this is definitely good news for living and unborn Canadians,” Strong says, “the associated reality is that everyone who lives long enough eventually becomes visually impaired.”

Canada’s changing demographics could also be a factor. Ethnic diversity has an impact on the prevalence of low vision, Strong says, “because some populations have much higher risks of developing visual impairments caused by conditions such as diabetes or through glaucoma.”

There also are non-demographic factors that could have an impact on low-vision services, such as an increase in visually demanding technologies in the workplace – though that could work both ways, Strong suggests: “Whenever improvements occur that heighten our ability to provide better intervention – new devices, new techniques, new strategies, new training – there’s a corresponding increase in the number of people who stand to benefit from our services.”

Nevertheless, there’s going to be a tremendous increase in the prevalence of vision impairment over the next decades, leading to an unprecedented increase in the need for low-vision services”although a service crisis will no doubt be averted, Strong reiterates, “simply because the demand for these low-vision services does not yet rival the legitimate need for them.”

“A more meaningful crisis for low-vision service providers must await a mass enlightenment of all stakeholders concerning the positive impact that low-vision rehabilitation could have on affected Canadians. Unless something changes soon, the grim reality is that more low-vision problems will be resolved by death than by all organized intervention services combined.”