Christine Grimard
Northern News Services
Published Monday, November 5, 2007

RAE-EDZO - A CNIB workshop held in Behchoko in September was a welcome sight for Louisa Smith.

Smith has one child who died at 19, and two suffering low-vision and other challenges because of a genetic disease rooted in the community. She knows all too well the challenges of living without sight.

Marguerite Rabesca works on a soap stone carving during a workshop in Behchoko. The workshop, co-ordinated by the CNIB with help from the Tlicho Community Services Agency, taught independent living skills to persons in the community experiencing low-vision and blindness. Because of a gene passed along from one generation to the next, the community has a particularly high rate of low-vision and blindness. - photo courtesy of Norma Jean Jarvis

Her two sons Jonathan, 22, and Jerry, 32, are both completely dependent on Smith. She had to take them out of school when they were children as they were ridiculed, and the school didn't have the resources to help them learn.

"They were constantly teased by the other kids," said Smith. "They would pick on them and call them names."

While many parents dream of their children having families, Smith says that likely won't happen for her two sons. At this point, she's just hoping that the two of them may be able to find work.

Smith isn't alone in dealing with blindness. At least 20 people in Behchoko experience low-vision or blindness as the result of genetic conditions passed on from one generation to the next in the small community of less than 2,000.

Approximately one in every 100 people in Behchoko have Retinitis Pigmentosa (RP), while 23 per cent of the population are carriers of the Bardet Biedl gene. RP can lead to blindness, and Bardet Biedl can have accompanying effects of kidney failure, obesity, and delayed cognition.

Although the condition may be common in the area, Smith, who is also on the board of the NWT Council of Persons with Disabilities, says that the community has limited resources available, and that people in the area are intolerant to the condition.

Norma Jean Jarvis, regional manager of the CNIB for the NWT, was in Behchoko along with a team of professors from Western Michigan University to find solutions to both these problems. Jarvis, along with the assistance of Tlicho Community Services and the Tlicho government, put together workshops to teach independent living, and produced a video to raise awareness about living with low-vision or blindness.

"Having low-vision doesn't limit what you can do," said Jarvis. "But you have to do things in different ways, it can be more challenging."

One focus of the workshops was stone carving and craft skills taught by Dr. Paul Ponchillia, a stone carver himself and a professor at Western Michigan University. Ponchillia was blinded in a hunting accident.

He took up stone carving as his sense of touch became equal to his sense of vision.

Ponchillia explained that this increased sense is not just an old wives' tale, as touch expands into the occipital level of the brain where vision was previously held.

In teaching carving to the students, Ponchillia hopes that a few of his students may make some income off their carvings.

"Obviously they're not over-run with jobs in the community, when you're blind it's even worse," said Ponchillia. "Maybe it will open up some sort of a market."

With these carving skills in place, the CNIB is hoping to set up a place where carvers can go bi-weekly to produce carvings and possibly get some income and move towards independent lives.

Ponchillia's wife, another professor at the university, has been coming up North for many years, volunteering her time to help people with low-vision and blindness.

"People want to learn, they make it easy because they want to be independent," said Dr. Sue Ponchillia on teaching skills during the workshops. "People don't think that we can learn, they say 'we never got what we could use in school.'"

Sue said the problem isn't isolated in the North.

"It's the same everywhere," she said. "Part of the job is teaching them to advocate for themselves so they can better tell people how to help them."

In the workshops, the students not only learned how to better communicate their needs, but also cooking skills, carpentry skills and orientation skills using a white cane.

But improving the students' lives isn't just about giving them these skills. The students will continue to experience hardships as long as intolerant attitudes abound. While they may have learned how to use a white cane, Smith says her two boys are discouraged as the use of canes is mocked in the community.

To deal with this issue of intolerance, Dr. Frank Jamison, a retired professor also from Western Michigan University, filmed a video to help raise awareness on blindness in the area, a film expected to be released this spring.

The video, titled "In Their Voices: Blindness and Low Vision Among the First Nation People of the North," features testimony from people in the community. Focusing on local knowledge, it goes back to traditional tales used to explain blindness separate from scientific explanations.

With the workshops as a first step, Smith is hoping the community will start to do more to help the people living with blindness and low-vision. Smith is looking now for a vehicle to be able to drive around her sons and other people living with similar conditions.

Smith hopes the infusion of knowledge into the community will create more tolerance for her children's condition.

"I used to blame myself for how my kids were, until I got to finding more information," said Smith. "I know now they're capable of doing anything that anyone else can do."