Wednesday, December 13, 2006

What are the challenges of a visually impaired person?

Courtney Maddocks was 22 and working at Starbucks when she started losing her vision. Now 31, she's blind and the hardest adjustment at first was giving up driving.

"Because [it meant] I wasn't independent any more," Maddocks said.

"It's not the driving. It's the fact [when you can drive] you don't have to plan. You can just do things on the spur of the moment.

"Now I have to plan everything."

But Maddocks lives alone, loves her job at RBC Financial Group and has a new best friend -- her guide dog Piper.

"I do everything anyone else can do, I just do it differently," Maddocks said.

Maddocks lost her eyesight as a result of diabetes, one of the most common causes of vision loss in younger people.

But the majority of vision problems are age-related. In its most recent fiscal year, more than 80 per cent of new clients at the B.C. and Yukon branch of CNIB -- formerly called the Canadian National Institute for the Blind -- were over 65.

The incidence of blindness and vision loss is on the rise, but only because of the aging population, said B.C. optometrist Elaine Kerr. Diseases that cause blindness in younger people, such as the diabetic retinopathy that claimed Maddocks' sight, are fairly rare.

According to Statistics Canada, more than 600,000 Canadians live with a serious vision problem that cannot be corrected with glasses. This number is expected to increase dramatically over the next 10 years as Canada's population ages.

The most common cause of vision loss among seniors is age-related macular degeneration (AMD) in which the macula deteriorates and causes loss of central vision, limiting the ability to read or recognize people.

Glaucoma, which can strike at any age although the risk increases with age, is caused by an elevation of pressure within the eye which if untreated can cause permanent nerve damage and a loss of peripheral vision.

While there is no cure for vision loss, it can in some cases be prevented or at least limited in scope, Kerr said. The key is to get your eyes checked regularly.

"Because you can have glaucoma and it just slowly erodes away little bits of your peripheral vision [and] by the time you notice it, that damage is permanent," Kerr said.

A lot of age-related eye diseases such as AMD and cataracts result in part from cumulative damage caused by ultraviolet rays, Kerr said. So wearing good sunglasses or incorporating UV protection into your regular glasses is another simple way to try to limit the damage, she said.
"People really really value their sight," Kerr said. "It's one of the senses they rate the highest. Yet people are still not of the mindset of, 'Oh gee, I should be getting my eyes checked.' Because they assume that if there was a problem they'd notice. And I don't think a lot of people realize that's not always the case.

"Everybody thinks about getting their teeth cleaned every six months but people don't always think about getting their eyes checked."

A healthy lifestyle, including eating carrots and foods containing antioxidants and not smoking, can also help prevent vision loss, Kerr said.

Brad Hooge, a counsellor with CNIB, was diagnosed with retinitis pigmentosa, more commonly known as RP, when he was 10 years old and he has been slowly losing his sight ever since.
At first, Hooge tried to hide his vision loss, especially in high school.

"I wanted to be sighted," Hooge said. "I wanted to fit into that crowd."

So Hooge refused to get a talking watch because he didn't want others to hear it. And he didn't start using a cane until he was in his 20s.

"It was extremely stressful trying to hide vision loss," he said.

Now Hooge works at CNIB counselling individuals and groups on how to deal with vision loss.
Some people reach out to CNIB right away for help, but many are grieving, he said.

In fact, of the 600,000 Canadians suffering from some degree of vision loss, only 105,000 are clients of CNIB. Ninety per cent of those have some vision.

When people start losing their vision, "initially there is just an overwhelming feeling of being lost and sad," Hooge said.

"It's easy to sit back and say there is a light at the end of the tunnel and there's all these things you can do," Hooge said.

"You're not going to be able to drive your car again, but from every other standpoint you can get so much back in your life. Really you can just about basically get yourself fully back on track and be fully independent and happy again.

"But when you're first diagnosed with that eye condition, that is not what you're thinking. You don't want to hear about talking books and you don't want to hear about BC Blind Sports or any of these other things that are out there. You just are feeling sad and you don't want to be thinking about alternatives. You're thinking more about what you are losing rather than what can be gained."
Hooge's group sessions let people know there are others going through the same fears and changes they are.

"They get to know each other and trust each other and share their experiences," he said. "And that works very effectively to be able to share those losses with each other and know they are not alone."

Once people start to feel they can tackle things, CNIB can help them move forward with mobility lessons or rehabilitation workshops that re-teach daily chores such as cooking and how to be independent around the home.

CNIB also has a store that sells "products for independence," according to its catalogue. Large-print cookbooks and dictionaries can help low-vision people, while braille playing cards, tactile board games and kitchen aids, like a liquid pouring alert that is hung on the side of a container and buzzes when liquid reaches a certain level, can help all levels of vision loss.

One of the biggest challenges is for working-aged people, some of whom have to give up their career and retrain because of their vision loss.

"It's funny how many people I've met that are in their 20s, 30s and 40s that are in such highly visual jobs that start to lose their vision," Hooge said. "There's photographers and artists and graphic designers, people in the medical profession. And those jobs they obviously can't do anymore."

But most jobs are still within reach, Hooge said.

Hooge also counsels family members on how to handle the changes.

No matter how tempting it may be, family members should not rush to do everything for loved ones who are losing their vision, Hooge said. Because doing things for them, like driving them whenever they want to go out, takes away their independence, he said.

"One of the hardest things is to watch your family member go travelling in the city when you know they don't see very well."

But that is exactly what you have to do, he said.

In addition to counselling and rehabilitation, the CNIB provides public awareness and education and funds projects that focus on ways to cure, treat and prevent eye disease and improve the quality of life of those living with vision loss.

The organization also operates the Bowen Island Recreation Centre, where children and adults can be taught braille, computer skills and just have fun.

Last year, the total bill for these services in B.C. and the Yukon totalled $5.6 million. Less than 30 per cent of that money comes from the government. The rest is through the generosity of private individuals, organizations and companies through wills, gifts and fundraisers.

That's one of the reasons that after 88 years of operating as the Canadian National Institute for the Blind, the organization changed its name in June to the acronym CNIB.

Joy Yorath, provincial director for fund development with the BC and Yukon Division, said having the words "Canadian" and "national" in the title made people think CNIB was federally funded, which it isn't. Nor is it an "institute."

In addition to what they give directly to the CNIB, the provincial and federal governments also provide funding for equipment to help visually impaired students, veterans and people entering or adapting to the workplace.

Computers are key to getting and keeping blind and low-vision workers on the job, said Stephen Heaney, adaptive technology specialist with CNIB. Through computers and software, documents can be converted into braille or read aloud to the user.

There are even portable note-takers that can do the same thing. And the newer versions have e-mail and Internet capabilities as well as a global positioning system that can work with a map and speaker software to tell users where they are.

They have all the functions of a personal data assistant, Heaney said.

For low-vision workers, closed circuit televisions that come in both desk-top and hand-held models use a camera that can be zoomed in to enlarge print and make reading possible. There are also software programs that can zoom text or read the text aloud.

Some current technology doesn't have to be adapted for use by the visually impaired, such as cellphones, which can already be operated through speech alone, Heaney said.

Heaney goes to worksites and advises employers on what needs to be done to make the workplace accessible to a current employee who is losing his or her sight or someone the company wants to hire who is blind or partially blind.

"The point is there are actually ways of doing it and there is funding in place to assist companies with that process," Heaney said.

The funding is important because the equipment can be expensive, said Steve Barclay, vice-president of sales and marketing at Aroga Marketing Group Inc., a private company that distributes technology for people with disabilities.

"It's the economy of scale that's the big killer for this kind of equipment," Barclay said. "It's not like Sony coming out with a Walkman where they can expect to sell a million of them. I think the most successful product ever made for the blind was a hand-held note-taker called the Braille n Speak. And I think they only sold somewhere around 20,000 of them.

"So there's a lot of research and development that goes into designing these products and they get sold into a very small marketplace. So it does tend to be quite expensive," he said.

Aroga's store at 5055 Joyce Street, at the Joyce SkyTrain station, is in the same building as the CNIB, and that's how many people find out about it, and its products. Advertising is limited, as television and radio ads are expensive and people with low vision don't read newspapers, Barclay said.

"We still struggle with awareness," Barclay said. "It's probably our biggest hurdle to overcome.
"We have this baby-boomer population that's aging and starting to run into vision problems and we still to this day have people who come into the CNIB and they walk into our store because we're in the same building as the CNIB, and they look at the equipment and they go, 'Why didn't my ophthalmologist or my optometrist tell me about this? I've been visually impaired for four or five years and nobody ever told me about this stuff.'

"There can be a real disconnect between when people get diagnosed as having an eye condition and finding out about the technologies that can help them maintain their independence," Barclay said.

Aroga's products range from CCTVs to screen-reader software that can be carried around on a USB memory stick, making all computers accessible. There are also simple things like keyboards with larger letters stencilled on them.

Maddocks has been using screen-reader software called JAWS, an acronym for job access with speech, to do her work at RBC, a job she got after she quit Starbucks and went to Vancouver Community College to train as an administrative office assistant. The software program translates all computer text, including e-mails, into speech that the computer reads to her.

It enables Maddocks to do her job completely independently.

For those going through vision loss, Maddocks has this advice:

"It's not the end of the world, although it seems like it at the time," she says. "There are so many people out there who are independent."


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