The Path to Healing

By Anna Quon

Francis Perry is on a mission. The 33-year-old Mi’kmaq and Dartmouth, Nova Scotia, resident is spreading the word about the dangers of drinking during pregnancy.

It wasn’t until Perry was 19 years old that he was diagnosed with FAS, which falls under the umbrella of Fetal Alcohol Spectrum Disorder (FASD). Della Maguire, Executive Director of the Mi’kmaq First Nations Healing Society, says the disorder is “a huge problem” for many communities, including many Aboriginal ones, where centuries of oppression and the residential school systems have left a legacy of social ills, including drug and alcohol addiction, and there is a lack of culturally appropriate resources. For Perry, the diagnosis was somewhat of a relief. “It was like someone lifted a weight off my shoulder,” he says. “When you don’t know what is wrong, you don’t have anything to work with.”

Other Aboriginal people with disabilities are all too familiar with limitations. There are the limitations on access to buildings on reserves and barriers to transportation and educational and employment opportunities. There are the limitations that accompany jurisdictional uncertainties: which level of government pays for what, particularly when an Aboriginal person with a disability moves off reserve to the city? There are the limitations imposed by poverty and prejudice, and cultural ignorance on the part of health professionals and disability organizations, which results in a lack of trust on the part of Aboriginal people with disabilities who could benefit from their services.

The disability rate among the adult Aboriginal population is 31.3 percent, almost twice that of the total Canadian population, according to “Facing a Life of Barriers: Aboriginal People with Disabilities,” a 1996 report commissioned by the First Nations Confederacy of Cultural Education Centres. The reason for the higher rates of disability include poor living conditions brought on by overcrowding and housing in need of major repairs; chronic health problems, such as diabetes and tuberculosis; and, according to a 2004 Saskatchewan Institute of Public Policy briefing note called “Aboriginal People with Disabilities: a Vacuum in Public Policy,” higher rates of environment and trauma-related disability corresponding to disparities in rates of injury, accident, violence and self-destructive or suicidal behaviour.

Despite the bleak numbers, there are some bright spots: organizations, programs and people that serve Aboriginals with disabilities both on and off reserve. One of these is the BC Aboriginal Network on Disabilities Society (BCANDS), a national organization based in Victoria, British Columbia, which employs advocate Jim Franklin, a non-Aboriginal. (Franklin’s opinions do not represent those of BCANDS.) Franklin, who has spina bifida, works with many clients who don’t know what they are entitled to, or how to get it.

“It all comes down to jurisdiction,” says Franklin. For example, he says, social assistance on reserves is administered by the federal Department of Indian and Northern Affairs Canada (INAC), but for those off reserve, it’s a provincial matter. Health Canada covers the non-insured health benefits of status Indians on and off reserve, says Franklin, “but it’s what they don’t cover that’s the problem.” Limited home supports are available through the province, but speech therapy and motorized scooters are only covered in some cases. If a client needs a power scooter and approaches INAC for it, he or she must get a doctor’s note and an evaluation by an occupational therapist. And, Franklin says, when INAC tells them, “We don’t cover that,” he must refer his clients to service clubs.

Depending on the reserve, the situation can be even more difficult for people with disabilities living on reserve as off. “The fact is that people with disabilities on reserve seem to have a very low priority because the bands are trying to look after everyone,” Franklin says. Many people with disabilities leave the reserve because they hope to get access to better services, such as transportation and housing. But when they want to move back to the reserve, says Franklin, “That’s something nobody wants to cover.”

Sylvana Rodrigue, an Aboriginal polio survivor who works for the Centre for Aboriginal Human Resource Development CAHRD) in Winnipeg, says her people shouldn’t have to leave their homes on reserve to get the services they need. Her organization helps connect Aboriginal people in Winnipeg with funding for education and training. “We also get calls from people to discuss inadequate welfare, help obtaining assistive devices, and calls from people who need advocacy for worker’s compensation claims,” she says, though she notes that CAHRD is an employment agency, not an advocacy organization.

Rodrigue, who is a committee member of the Aboriginal Disabled Self-Help Group in Winnipeg, says she has experienced the pain of mistreatment at the hands of health professionals, who put her on display as a child at medical schools and gave her an unnecessary surgery. Today, racism and mistreatment can take more subtle forms. For example, she says, “Aboriginal people with disabilities don’t last long in transitional homes,” partly because they bring their families into the city and the homes can’t accommodate them all.

The close-knit nature of many Aboriginal families is an element of their culture that landlords often do not understand. According to Diane Scribe Niiganii, programs coordinator of First Nations disABILITY Association of Manitoba Inc. (FNDA), it’s difficult to find housing for a person with a disability and his or her extended family, and, she says, “Evictions happen.” And sometimes, she says, it’s just that some landlords do not want to rent to Aboriginal people. “A majority of our people don’t want to leave their reserve,” she says, but accessibility is only in its first stages on reserves. “We’re only starting our disability rights movement here in Manitoba,” she says, putting the province 30 years behind the non-Aboriginal disability movement.

FNDA provides peer support, advocacy and referrals only to Manitoba First Nations clients, which includes status Indians with treaty rights but excludes non-status Aboriginal people such as Metis. “We provide a referral, but do not open a case on them,” explains Scribe Niiganii. The distinction is important to Scribe Niiganii, who has arthritis of the spine, because she says there has already been a “watering down” of treaty rights of First Nations people.

FNDA also helps First Nations people with disabilities in Manitoba cope with the “ping-pong” effect of jurisdictional barriers. Lou Ella Shannacappo is originally from Rolling River First Nation. She is the Community Services Coordinator for FNDA and a quadriplegic. She says her organization is helping to increase awareness of disability issues at the band level and to front-line workers, influencing the beginnings of the provision of services under a “disability” rather than a “health” banner. Shannacappo says that, in the past, “Due to lack of awareness of accessibility and issues that pertain to disability awareness, the majority of First Nations people with disabilities felt that they were unemployable once they acquired a disability. We have noticed a change in the last couple of years due to awareness training.”

Scribe Niiganii says that First Nations communities are dealing with issues arising from multiple and intergenerational disabilities because of the residential school system. “That’s not going to change in our lifetime,” she says. She believes mental health issues, including post-traumatic stress, as well as bone disease, blindness, hearing loss and rampant arthritis can be attributed to the legacy of the residential schools. To add insult to injury, she says, there are people with disabilities who have had strokes or have mobility issues who have been asked to leave premises because they were thought to be intoxicated – “the stigma of the drunken Indian.”

FNDA helps health professionals gather clients’ health records, enabling them to determine what kind of medical services and equipment a client needs and is entitled to under treaty rights. The organization also helps returning adoptees reapply for status cards, and provides First Nations and plain-language translation at medical appointments. Despite the fact that they offer 50 different types of referrals and are unique in North America, Scribe Niiganii laments the lack of funding for capacity building that would strengthen development of the organization in its work toward its mission.

In spite of funding woes, Scribe Niiganii says one of the most important things her organization offers its clients is hope. “Once a person starts to see everything falling into place, they begin to gain hope that things will get better for them.”

Six Nations Special Services for Special People in Ohsweken, a village in Ontario on the Six Nations of the Grand River Reserve, supports Aboriginal people with developmental disabilities on the reserve, helping them pursue their personal dreams and aspirations through day and housing programs that foster social and independent living skills.

There is a cultural component to these programs that have made them a success for clients and their families. For example, the day program, called the Social Resource Centre, uses a medicine wheel concept to help teach clients strategies to achieve their personal goals. “We’re an organization whose people are just coming into their own,” says Executive Director Lynda Nicholson. “Our folks are well-received in this community. They’re included.” It’s just a part of “taking care of our own,” she says.

But sometimes, says Frances Sinclair, founder of the Aboriginal Disabled Self-Help Group in Winnipeg, there is a lack of support for Aboriginal people with disabilities from their families, because those families are struggling with many issues. “The families don’t have enough left over for the disabled individual after years spent attending to their needs,” she says.

Sinclair, a congenital amputee who was born without hands and later had her feet amputated, speaks about how, 15 years ago, non-Aboriginal people with disabilities might have assumed alcohol was involved in causing her disability. She didn’t feel comfortable dealing with mainstream disability organizations, and wanted a place “to just belong,” and “hear the voice” of her community.

Today, says Sinclair, the Self-Help Group’s monthly meetings regularly attract 18 to 20 participants. The group takes a holistic approach to community-based physical and spiritual well-being. It gets big turn-outs for traditional events, including sweat lodges and pipe ceremonies, which are not always accessible to Aboriginal people with disabilities on reserve, and to its “healing within” workshops.

One of Sinclair’s hopes is for the group to work with a psychologist clinician who will become a specialist in the Frances Sinclair’s Self-Help Group takes a holistic approach to well-being. area of Aboriginal people with disabilities. Her wish is similar to that of Kathy Osborne, an elder with Cree and Mi’kmaq blood living in Dartmouth, who has been working on a project with the Schizophrenia Society of Nova Scotia to get most of the information on schizophrenia translated into plain language and made available on reserves.

Information also needs to flow the other way. “Unfortunately there is a lack of Aboriginal or native nurses or doctors,” says Osborne. “Non-native health professionals tend to look down on us." Non-native psychiatrists may also ask questions such as, “Do you hear voices or see visions?” if they suspect mental illness, she says, but Aboriginal people who feel a connection to the spirit world might answer yes even when they are healthy. Going to non-native hospitals and doctors may be scary for Aboriginal people, but, says Osborne, “The hardest part that I’ve run into is finding medical staff outside reserve that understand the native way in order to work successfully with Aboriginal patients.”

Education of Aboriginal people with disabilities is something Frances Sinclair sees as key to improving their lives and opportunities, but so is raising awareness about issues that affect them among professionals who serve them, Aboriginal communities and bands, and all levels of government. Francis Perry is doing both. He couldn’t tell time on a regular clock with hands until he was 19 when, he says, he had a Grade 6 education. Today, though he still has trouble keeping track of money, he is working on upgrading to Grade 12. He is a gifted speaker. In his work with Della Maguire and the Mi’kmaq First Nations Healing Society, he speaks to groups including health professionals, police, social workers and students about his experience of growing up with FAS. Says Della Maguire, “I look at Francis as our teacher. He has valuable information to share with our communities.”

Perry says, “I just want people to understand…not just so history won’t repeat itself, but understand me.” Bright and eloquent, he looks forward to the future. He wants to continue his work for his people and reach out to others with FAS. “I just want to give them hope.”

Anna Quon is a freelance writer living in Dartmouth, Nova Scotia.