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Human Rights V.Charity: Achieving The Dream of The December 3 International Day of Disabled Persons

Editor's Note: The following are notes for remarks by John Rae, President of Alliance for Equality of Blind Canadians (AEBC), at the 2005 Celebration of the International Day of Disabled Persons, Ottawa, December 2, 2005.

Today we gather here in Ottawa to celebrate the Annual United Nations International Day of Disabled Persons with the theme "Rights of People with Disabilities: Action in Development", and the 20th anniversary of Section 15 of the Canadian Charter of Rights and Freedoms. It is important that we celebrate our victories and advances. These include the Charter, the growing advancement of the philosophy of the independent living movement, and most recently CCD's (Council of Canadians with Disabilities) success in gaining leave to appeal the Via Rail case to the Supreme Court of Canada.

Let us take this opportunity to reflect on how far we have come up the road towards having our issues viewed as rights issues, and not as charity. This question is particularly important to Canadians who are blind, deaf-blind and partially sighted.

Unfortunately, I believe we have made far more progress in gaining an equitable legal framework, the "equal protection" promised by the Charter, than gaining substantive equality, the Charter's "equal benefit" promise.

Clearly, adequate income and jobs are keys to equality!

Having an adequate level of income enhances life options, and makes it easier to avoid becoming dependent on social assistance or worse "charity or charitable organizations.

Canadians with disabilities continue to subsist in poverty that may be matched only by our First Nations Peoples.

The CNIB recently released report, "An Unequal Playing Field: Report on the Needs of People Who are Blind or Visually Impaired Living in Canada", presents an up-to-date picture of what living with blindness in Canada is like today. The data from this report represent a clear indictment of the entire service system for Canadians who are blind, deaf-blind and partially sighted.

Over 350 consumers participated in this study, along with medical practitioners, parents and service providers. The results of this study come as no surprise to members of the AEBC! After all, the AEBC is a consumer organization that is trying to better the lives of our members and future blind persons.

The report outlines in stark detail the poverty, discrimination, exclusion and isolation that remains the reality of the bulk of Canadians who are blind, deaf-blind and partially sighted, a situation that has not improved much since the last national study some 30 years ago, yes, 30 years ago.

Clearly, government has failed to show the leadership we have the right to expect. Canada's economic model has failed the vast majority of blind persons who have education and skills and who want to work. The community has found it far too easy to shirk its responsibility to serve all members of the community by assuming the CNIB is the "be all and end all" (which it isn't and shouldn't be expected to be), when it comes to providing all the services we need; and blind consumers are yet to come together as we must.

The most damning points of the report are the continuing unacceptable level of unemployment and glaring income disparity between us and other Canadians. The study reports that only 24% of working-age blind persons are employed or self-employed, that 19% of adults have a gross annual income of $10,000 or less, and that 28.3% of working-age persons have gross annual incomes of 10,000 or less, regardless of marital or family status.

Now I ask those of you who are employed how many of you could live on an income of $10,000 annually or less, and how many of our politicians could consider trying to subsist on this level of poverty? Clearly, urgent attention to our plight is desperately needed!

Many of us have the skills and education that are required for employment, and we want to work!

Shelley Ann is one of so many such individuals. Like me, she benefited from some of those long-ago discredited federal job creation programs that admittedly had their problems, but they also gave some of us our first work experience and opportunities to try out our own creative ideas. "We can't do those Mac jobs, so getting that first job is tougher for many of us," she said recently.

One of her family's friends even went so far as to say, "Shelley, you work so hard during the school year, you should take the summer off." To which she responded, "Balderdash!" (or words of a similar vein) and then visited her high school guidance counsellor, who helped her get her first volunteer job in a seniors' residence. This opportunity provided Shelley her first work experience, work reference and, most importantly, personal confidence.

From there, she got her first paid job as an admin at a pool that was partly funded by the Youth Corps program, after which they kept her on as an admin/cashier. This made her living, breathing and tax-paying proof that these programs work.

Shelley was recently laid off when the employment-search program she was working for was not re-funded, but I trust that spirit and confidence will stand her in good stead as she pursues an active job search.

The federal public service must show the way to all Canadian employers by becoming a model employer itself, by expanding representation of workers with disabilities, and by providing the workplace accommodations that some of us require. Finding work in the competitive labour market also requires the tools so we can compete in today's technological workforce.

When Sarah moved from British Columbia to Ontario to attend school, she established residency in Ontario, which made her eligible for assistance under Ontario's Assistive Devices Program (ADP). However, when she returned to BC to pursue an education program not available in Ontario, the minute she left Ontario she lost her entire entitlement, as BC is one of too many provinces and territories that do not currently operate this kind of program.

I thought Canada's Charter of Rights and Freedoms guaranteed all Canadians our "mobility rights..." Well, I guess we have the right to move from province to province to territory, but unless programs such as ADP and other disability supports are in place all across our country, this makes a mockery of this so-called Charter guarantee of mobility. Canada must establish a publicly funded, publicly operated program of disability supports with adequate training that will be available throughout the entire life cycle.

The area of politics must be examined in terms of electoral politics, the "politics" of the disabled community, and the ways in which government engages with the disabled community.

Canada is embarking on another federal election, and the 3.5 million Canadians with a disability want to know where each party stands on issues that are important to us! Attend all candidates' meetings, and challenge candidates to tell you what planks on disability issues are contained in their party's platform. Ask if their campaign materials are available in various alternative formats; if all candidates meetings will take place in fully accessible locations; if their party sought out individuals with a disability to run as candidates in the election; if campaign offices have a TTY; if they are prepared to support inclusion of a question on disability issues during the leaders' debates; and what they are prepared to do to make the electoral process more accessible to electors who have a disability.

Canadians who live with a disability will be watching and listening, and participating. We want to know what politicians from each party are prepared to commit to do to alleviate the ongoing and unacceptable plight of Canadians who live with a disability.

Attitudes remain a major barrier. Too much of today's social policy dialogue still reflects the attitude that the so-called "problem" of disability is within the person rather than in the system. The AEBC believes we need programs that will enhance our inclusion in schools, employment, recreation and in all other areas of typical community life. To move toward that direction requires us to recognize that disability is a "natural part" of the human experience and not an aberration. Instead of trying to "fix" people with disabilities, we need to ensure we have the tools that are needed for success in today's technological world.

When an individual in Canada is ill or injured and needs medical care, our medical system provides both the active medical treatment and rehabilitation the individual requires. For example, when I fractured my ankle several years ago, I spent several days in an active treatment hospital, several weeks in a convalescent facility, and had home care assistance upon discharge. All of these services were covered by our health care system.

By contrast, if one loses one's sight, either gradually or all at once, the medical profession may offer active medical treatment, but then the individual is expected to seek the rest of what he/she needs throughout the rest of that individual's life from a charity. Why is this the case?

Now let's be clear here. I do not want my comments to be misconstrued in any way. I am not calling for the over medicalization of our lives. On the contrary! As a human rights organization, that's the last thing we want.

However, we want, and believe we have the right to expect, our needs will be dealt with in a more integrated system, in the community, free from charity, where everyone else seeks needed services. Rehabilitation services should be included in the Canada Health Act and added to medical services plans in each province.

Let's examine just one simpler example. If any of you wish to do research or borrow a book, you simply go to your local library and are dealt with in a library setting, yet we who are blind, deaf-blind or partially sighted are too often expected to get our library services from a charity--CNIB. Does that make sense? We think not!

Library services for Canadians who are blind and partially sighted should be provided through existing mainstream services with leadership through the National Library of Canada, and with greater involvement and support from publishers.

Instead of relying upon "special services" that isolate and segregate individuals with disabilities and their families from the mainstream, we must find the help and assistance we need from the natural supports and generic services in our communities. This does not mean we do not also need some specialized services, like learning Braille or independent mobility, but the bulk of services for blind, deaf-blind and partially sighted Canadians should be provided through regular community service providers in integrated settings. It does not have to be expensive; it only requires a shift in attitude and involvement!

When it comes to engagement with the disabled community, there is a disturbing trend these days. Increasingly, the federal government is appointing individuals to advisory bodies, or simply seeking the opinions of individual Canadians--purposely bypassing organizations, including the AEBC.

The Advisory Committee on Accessible Transportation (ACAT) is a perfect case in point. After several years, where community reps were working together in an increasingly collaborative manner, the Minister of Transportation decided to eliminate the existing model of organizational representatives and seek nominations of individuals for a new Committee. The disabled community was outraged, and to date no call for new nominations has been sent out. Given the long-standing fight between the disabled community and Via Rail, one would have thought the Minister would want the best advice available, but sadly this does not appear to be the case.

Democratically constituted consumer organizations can provide the carefully considered views of its membership, rather than the views of a single individual. In any democracy, citizens have the right to organize, and our elected representatives should seek our views, especially since we who have a disability are the experts when it comes to disability issues; we know best what we need and what we have the right to expect from our elected officials.

Consumer organizations must be involved in the early development, and not at the end, of all new legislation and programs, and any new research that is funded should occur only with the support and active participation of at least one consumer organization. To fully realize this goal, governments must increase the capacity of consumer organizations to enable them to play their rightful role.

Recently, the Prime Minister met with First Nations leaders to develop a new era, and has met with the black community in Toronto. The Prime Minister should call together provincial and territorial leaders, business, labour and consumers to forge a new era of inclusion, prosperity and participation for Canadians with a disability.

What will it take to get the Prime Minister and provincial premiers to show a similar level of commitment and leadership to our full participation and real equality in all aspects of Canadian society?