Charting New Territory

By Alan Shain

Iqaluit (formerly Frobisher Bay), in the Northwest Territories, is probably the most unlikely site in the country for a conference on disability rights.

Located on the eastern shores of Baffin Island, this community of 4,000 people hosted the Abilities Conference from May 27 to 29, 1998. Thirty-four delegates came from communities spread thinly across the eastern and central Arctic -- some of the most remote areas in Canada. The conference represented the first time that many Inuit with disabilities had the opportunity to meet each other and discuss issues affecting their daily lives.

On April 1, 1999, the map of Canada will be changed to include a third territory. Nunavut -- meaning "our land" in Inukitut -- will span an area of two-million square kilometres, covering the eastern and central half of what is currently the Northwest Territories (NWT).

Iqaluit will be the capital. It is by far the largest of the 27 communities in Nunavut, over half of which contain under 600 people. Nunavut, which represents the biggest land claim agreement in Canadian history, will have its own system of government with direct control over local resources. For the Inuit, who represent 85 per cent of its population, this is the culmination of a life-long dream.

But what about Inuit with disabilities? Do they share in this dream of a homeland? What will the establishment of Nunavut mean for their lives?

It is estimated that there are 5,000 people with disabilities living throughout the eastern and central Arctic, though this figure is not considered very reliable. The disability rate in the north is thought to be twice that of the rest of Canada, or around 30 per cent. Yet little is known about the day-to-day experiences of these people, or the types of barriers that they face.

It wasn’t until the 1997 Future of Work in Nunavut Conference that the voices of people with disabilities from across the territory were heard. The organizers of this conference paid particular attention to eliminating barriers caused by language, literacy, distance and disability. The application of accessibility codes and the use of telecommunications technologies provided a forum for all residents to discuss the changing economic opportunities and their impact on the way of life in Nunavut. People with disabilities voiced their concerns about being "left out" of the Inuit dream.

"It was decided that people with disabilities needed a conference of their own to talk about what they want to do, and about what they would like to see in government," says Charlie Crow, who was co-chair of the Abilities Conference. A Nunavut Council of People with Disabilities was established. Crow hopes that the Council will have the ability to travel. "I think one of the things this council has to do is educate the Inuit to accept disability within their own communities -- that a person with a disability, if they’re given a chance, the education and the technical know-how, can earn money and be a taxpayer."

Crow, who lost his sight 41 years ago, learned English and Braille at a Brantford, Ontario, school for students who are blind. It is not uncommon among adults who grew up with a disability 20 or 30 years ago to have been sent to school in southern cities.

Though it was a traumatic experience to be immersed in a foreign culture at the same time as having a new disability, Crow credits the school for giving him useful skills. Shortly after returning home, Crow was elected to the town council in his community of Sanikiluaq, located on the Belcher Islands to the north of James Bay. His parents had been ashamed of him until they saw that he could be an interpreter.

"People accepted me because of my ability to speak English," says Crow, who eventually got elected as an MLA to the Northwest Territories Legislature. He feels that these kinds of opportunities should be open to anybody with a disability.

Children with disabilities are now educated in their community schools, which often don’t have the necessary support systems. "We are isolated from each other and don’t know what other people are doing or what’s available," Crow says.

Language differences pose substantial barriers to accessing opportunities. A significant portion of the Inuit speak only Inukitut. The use of computers demands a knowledge of English.

There is also no Braille system for the Inukitut language. Crow was approached about developing Inukitut Braille, but says that this would require using the English alphabet. "Some of the words end up being so long, they take up the whole line and continue to the next. By the time I get to the end of the word I have forgotten its beginning."

Access to information is another major problem. Many individuals don’t know about disability benefits, for example. "Social Services either does not tell people what they’re entitled to, or they lie to them," claims Bernadette Kublu, a conference delegate from Iqaluit.

Most physicians are English-speaking and rely on Inuk nurses to communicate. "People with disabilities do not have the equipment they need, but do not ask their doctors because they don’t know how to go about asking. And a lot of doctors don’t know about disability," adds Kublu. As a result, people are left on their own. Kublu is in the process of organizing a disability support group in Iqaluit to assist people in attaining equipment and services. She credits the acquisition of her power wheelchair to having a knowledgeable doctor.

Kublu hopes that services will be more accessible with a Nunavut-based government. She criticizes the current GNWT (Government of the Northwest Territories) for being too focused on going to school and getting a degree. "The Nunavut government will be our ways. They will understand how we live and what we need."

The Inuit way of life is still largely based on hunting and fishing. Snowmobiles, which are in common use up north, enable many people with disabilities to hunt on a full-time basis. "Everyone hunts," says Ammie Kipsigak, a conference delegate from Sanirajak (also known as Hall Beach), a community of 500 people.

An important issue for Kipsigak is access to appropriate mobility devices that are suited for the local living conditions. "I cannot wear my prosthesis in the winter because of the extreme cold," says Kipsigak. "My prosthesis is supposed to last between two and four years, but I have to get a new one every year."

There are no prosthetic services offered in Sanirajak, which is located on the Melville Peninsula to the east of Baffin Island. Kipsigak is required to travel to Montreal every year to get his new foot prosthesis. The flight alone costs $3,000, in addition to the cost of hotels and of the prosthesis itself. There is also the cost of being away from providing for his family. The trip is usually taken during the summer, which is the high point of the hunting season. "We need equipment which is made here," Kipsigak says.

Air travel is the only means of transportation across Nunavut. Not only is it expensive (the average cost of a flight between communities is $2,000), the small planes are inaccessible to people using wheelchairs. People are required to travel with an attendant. Lack of physical access to public buildings, as well as a scarcity of accessible housing, force many people to rely on their spouses or families for mobility. Neither is there access to attendant services, thus relatives must provide the needed assistance. Burnout is common among families with relatives who have disabilities.

"Our government must know what people with disabilities face and what they want," states Meeka Kilabuk, one of nine commissioners on the Nunavut Implementation Commission (NIC) and the organizer of the Abilities Conference.

The mandate of the NIC is to design local government, the allocation of resources and the delivery of services to reflect Inuit values and their way of life. "For one thing, we are going to nit-pick the present-day programs and services which haven’t worked for people with disabilities," Kilabuk says. "The new government will make time for people with disabilities to look at their needs, provide them with economic opportunities, training, education, employment, adequate housing, accessible infrastructure and accessible technologies."

This kind of attention only comes from people with disabilities organizing themselves. "In my ten years working up here, this is one of the most exciting things I’ve seen," says Lydia Bardak, Executive Director of the Northwest Territories Council of Disabled Persons (NWTCDP). "As people meet each other, they get the courage to speak up."

In addition to facing barriers caused by isolation and a lack of services, people with disabilities also face issues of abuse. Northern communities in general have much higher rates of spousal abuse, child abuse and elder abuse. "People with disabilities are in no way protected from this," says Bardak. These issues are often complicated by drug and alcohol addictions.

Bardak sees a great need for public education on what including people with disabilities means. "It’s not as simple as offering services. It’s what role people with disabilities will take in the creation and management of these services. It’s going beyond being the consumer of these services to being a participant and having a stake in what shape these services will take."

This requires the public education of people with disabilities themselves. "It’s hard to get help when you don’t know what to ask for. People have to know what they need, to be involved in planning for the future."

For Joe Krimmedjar, the most important part of the Abilities Conference was the sharing of personal experiences. Krimmedjar is from Mittimatalik (also known as Pond Inlet), a community of 1,154 people located on the northern shores of Baffin Island. "I don’t want to be labelled," he says. Though he does have physical limitations, Krimmedjar finds that people forget about the things he can do.

"At the conference we were looking at our abilities, rather than our disabilities. We should meet again." A meeting is being planned for the fall.

(Alan Shain is a freelance writer living in Ottawa, Ontario.)