A Man Apart

By Anna Quon

Steve Estey is bleary-eyed when he greets me at his house in a quiet neighbourhood in Dartmouth, Nova Scotia. He has just spent 30 hours over the past two days travelling home from Seoul, South Korea, where he attended the 7th World Assembly of Disabled Peoples International (Sept. 5 to 8). Considering the long flight, the jet lag and the fact that he helped organize the event, it’s amazing that Estey’s upright, let alone coherent.

He offers me a seat at his dining room table and sits across from me, his back to the light. Estey reads lips quite well, but, having become completely deaf only in the past five years, he sometimes needs me to clarify my questions with scribbled notes. (Estey also uses computer note taking and community access real-time translation (CART), and is learning American Sign Language (ASL).)

Still, even before we talk, I know this about Estey: He’s eloquent. He’s smart. And he doesn’t give up easily. As a volunteer with the Council of Canadians with Disabilities (CCD), Estey was a member of the United Nations (UN) Ad Hoc Committee that, from 2002, worked to draft the first human rights treaty of the 21st century: the Convention on the Rights of Persons with Disabilities. He is now the human rights officer at Disabled Peoples International.

The UN General Assembly adopted the Convention on December 13, 2006. On March 30 of this year, Estey stood beside the Canadian ambassador to the UN, John McNee, as he signed the Convention on behalf of Canada.

It was an emotional moment for Estey. As he watched over McNee’s shoulder, Estey remembered many of the people with disabilities he met during his work around the world over the past 15 years. Among the heart-wrenching stories was that of a young Cambodian woman who had been chained in the backyard of her home for 20 years before a worker from a non-governmental organization (NGO) visited her family to explain that she had cerebral palsy and they didn’t need to be afraid of her.

“There are people like her all over the world who live isolated lives without basic rights because people are afraid of their disability,” says Estey. But today, he says, we’re on the brink of fundamental change, of which the Convention is both a product and a catalyst. “It has tremendous power to change the lives of the 650 million people with disabilities on the face of the planet.”

Estey knows this because working on the Convention has transformed the way he views himself and others as persons with a disability. He’s been one all his life, but Estey didn’t start out thinking much about it. Growing up in smalltown Truro, Nova Scotia, he broke a lot of bones because he has osteogenesis imperfecta, known as the “brittle bone disease.” (It’s also the condition that caused him to slowly lose his hearing.)

Estey remembers borrowing a wheelchair and crutches from the Rotary Club’s lending bank, which his father was in charge of for several years, and seeing other people do the same, but it didn’t occur to him that he was different than anyone else.

Estey completed a Bachelor of Arts degree in philosophy at St. Francis Xavier University in Antigonish, Nova Scotia, and went on to graduate studies in international development at Saint Mary’s University in Halifax. He served a couple of years as president of the National Educational Association of Disabled Students (NEADS) and volunteered for disability-related causes. He had no idea that his personal interest in disability would intersect with his professional interest in international development.

For 15 years, Estey worked on grassroots development projects in many countries, starting out among the street vendors in Jamaica, where he lived for several months and also did research for his Master’s degree. He then moved to British Columbia with his future wife, Anne MacRae, to be a policy advisor at the University of British Columbia’s (UBC) Disability Resource Centre. (MacRae, also from Nova Scotia, has spent her whole professional life on disability work.) The couple moved to Ottawa in 1998, when MacRae was transferred to the Office for Disability Issues.

Estey, who has been a volunteer on CCD’s international committee since the early ’90s, had hoped to work for the organization, but just after he left his job at UBC, the Canadian International Development Agency (CIDA) conducted an evaluation of CCD’s international development program and determined that it was doing capacity-building work that required not project funding, but ongoing program funding, of which there was no more available. Although CIDA praised the program, it told CCD that unless Canada had a policy around disability and development, funding for programs under that umbrella would not be a priority. Estey worked for NGOs and universities for the next several years instead.

The fact that Canada has no such policy when the United States and countries in Europe do is “an embarrassment,” says Estey, and he has found little support from Canadian officials to establish one. “The Convention will provide useful direction, but it is not the same as a policy,” says Estey. “We still need one.”

CIDA funds hospitals, rehabilitation and vaccination programs, but Estey says, “My standard response to this is, that’s wonderful, but that’s not what I’m talking about. What I’m talking about is how you live your life as a person with a disability. It’s OK to have a disability – you just need to have the supports to participate equally and fully in society.”

It was a sad moment in 2001, says Estey, when he thought CCD would have to close down its international development program completely. But it was about the same time that the government of Mexico called for the striking of the Ad Hoc Committee that would draft the Convention. The CCD appointed Estey to the Canadian delegation to the committee. (The other Canadian NGO representative was Dulcie McCallum, who was also present when McNee signed the Convention.)

Estey dedicated enormous amounts of his own time to the project, which was nearly a full-time effort from 2002 onwards, without pay. He never once considered quitting, despite the financial strain. “This is a huge thing, and it’s an honour to be a part of it.”

Estey is encouraged that such a Convention might convince Canada it needs the policy he has been pushing for. Working on the Convention has also opened Estey’s eyes to the fact that it isn’t disability supports he’s fighting for – it’s basic human rights. He likens the rights of people with disabilities to those of women. Only a few decades ago, Estey points out, women did not have access to federal maternity leave. Employers were less willing to hire them because of the concern that they would start a family and be less productive than a man.

“Nobody today would say that parental leave is a gender-related thing. They would simply say parental leave is a right,” says Estey. The same, he says, should apply to the supports that people with disabilities need to access education and employment. The Convention, he says, means, “We’re no longer the objects of charity, but the subjects of human rights.” This idea has been a transformative one for Estey, but it’s his adopted son, Isai, who has cerebral palsy, who brings home to him the emotional impact of championing the human rights of people with disabilities. Although Estey is a global advocate of people with disabilities and he travels the world talking about disability rights, he says, “It’s still hard to meet with a teacher or principal and say, ‘My little boy needs this…my little boy needs that.’ It’s a constant fight.”

Estey hopes to see the leaders of this world translate the Convention, already signed by 118 countries, into real-world benefits for people with disabilities. “It’s exciting to be part of shifting the ways that people see ourselves.”

Estey says that, in 50 years, if disability advocates are successful in their work, events such as the election of Steven Fletcher, Canada’s first member of Parliament with quadriplegia, will not seem extraordinary. With an impish twinkle, Estey says he imagines that people will look back and wonder what all the fuss was about.

For more information about the Convention on the Rights of Persons with Disabilities, visit www.un.org/esa/socdev/enable/.

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