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Ready, Aim, Fire!

Editor's Note: Chris Stark is a long-time advocate for increased access, universal design and true inclusion. He is an AEBC member living in Ottawa, Ontario.

It seems to me that the older I get, the harder it is to be independent. While my specialist and hospital clinics communicate with me by email, Health Canada and its agencies do not. Canada Pension Plan will, but I have to call and then wait three weeks. The Ontario government is no better in providing accessible information. I do get pills in bubble packs, paid for by the pharmacy/government, with the packs containing the correct doses of medication for each time of day for a week. This means I can avoid taking the wrong pills in the wrong amounts at the wrong time. Recently, I was asked to monitor my blood glucose level. Here, I outline the research I did on talking blood glucose monitors.

Finding information about products that can be used by persons who are blind is not always easy. As a first step, I spoke with a number of people who are blind, and received a great deal of useful and practical advice. I strongly suggest that others do likewise.

The Canadian Diabetes Care Guide website (http://www.diabetescareguide.com/en/monitoring.html) was helpful in learning about blood-glucose monitoring. While the United States continues to use imperial measurements (milligrams/deciliter), Canada began using millimoles/litre in 1967. Make certain the device you choose can give readings this way.

An article I found particularly useful was "Evaluating Glucose Meters: Talk is Cheap, But Access is Golden" (http://www.nfb.org/images/nfb/Publications/vod/vod_24_1/vodwin0910.htm). Published by the National Federation of the Blind (NFB) in the United States, it says: "The contemporary meters are smaller, faster, and much less expensive than older choices, require only a tiny drop of blood, and are easier to use. However, buyer beware! While these meters are being aggressively marketed to blind and low vision users, only the Prodigy Voice is totally accessible. Despite the hype, you will find that you need sighted assistance to use essential functions such as time and date, and memory review on many of these products." Another NFB article is "The Talking Blood Glucose Monitor Revolution" (http://www.nfb.org/Images/nfb/Publications/vod/vod215/vodwin0707.htm).

Present choices for talking glucose monitors include Prodigy Voice, Prodigy Autocode, Oracle, Advocate, Redi-Code, Companion, Embrace, Clever-Chek, Smartest Smart Talk, and the Accu Check VoiceMate. I have tried the Prodigy Voice and the Oracle.

There are basically three activities involved in monitoring your blood sugar level: pricking the skin with a lancet from an applicator; getting some blood and putting it on the test strip; and having the blood glucose monitor read the result to you. Also, in my case, doctors want to see the record of readings.

Both the Oracle and Prodigy monitors come with manuals in audio format. While I found each manual adequate, the one for the Prodigy contains a chapter on carrying out a blood sugar test as someone who is blind, which I found useful.

Each talking glucose monitor comes with lancets and lancet devices, but it appears that it doesn't matter which ones you use; there are universal lancets available that fit most lancing devices. The test strips used for each monitor, though, are specific to that product. Once you decide on which monitor to use, the correct strips have to be purchased. The talking monitors are usually free or very low cost, but the test strips are fairly expensive. The Prodigy I use requires the Prodigy Voice strips.

Both the Oracle and Prodigy come with software to install on a computer to record readings. Each has an internal memory to keep track of about 400-plus readings. While the Oracle software is not accessible without using a mouse, the Prodigy software is supposed to be accessible, though it was being updated at the time of this writing. The company did acknowledge that the software would be reviewed by people who are blind to make sure it continues to be usable.

I personally find the Prodigy more user friendly than the Oracle. It is easier to get blood onto the strips and get a reading, and the review and settings functions are totally accessible. While I can control the Prodigy independently, sighted help is required to alter the Oracle's settings and read the history of results. The downside of all of this is that neither device is available in my province and test strips have yet to be approved for use. Therefore, you have to order the devices from a supplier.

The Prodigy can be ordered from several U.S. places, which ship it as "Medical Supplies for the Blind." They go right through customs, but you should check on regulations (Canada Customs: English: 1-800-461-9999; French: 1-800-959-2036). Future Aids/The Braille Superstore is a Canadian company that sells the Prodigy in provinces where the device has been approved for use (Toll Free: 1-800-987-1231; Email: sales@FutureAids.com; Website: www.braillebookstore.com).

As a newbie, I found it challenging to tell if I had punctured the skin to get enough blood to test. But as the Prodigy manual says, "Don't give up, keep trying and practice, practice, practice." And though I shouldn't be, I'm appalled at the lack of locally available, useful information. Diabetic organizations and most pharmacies had no information for people who are blind. The only device they knew about, and could get, was ten-year-old technology, the Accu-Check VoiceMate, in which the audio is an add-on. It is the most expensive of them all, costing $400-$500.

Compared to when I was younger, the same old problems persist--lack of resources and lack of accessible information, not to mention people who know nothing about blindness except perhaps pity. This has motivated me to outline my impressions and experiences as a new user, hoping to help others who find themselves in a similar situation.

Canada's Programs for Disabled Too Complex, Says OECD

Canadians with disabilities or health (issues) are caught in a complex web of federal and provincial programs that make it almost impossible for them to join or remain in the workforce, says a new OECD report. Few programs lift the disabled out of poverty and many seem to work at cross-purposes, says the report by the Paris-based Organization for Economic Cooperation and Development, which looked at the major disability benefits and services offered by Ottawa and the provinces.

To improve programs and make it easier for the disabled to get help, the report recommends better federal-provincial coordination and "one-stop shopping" offices.

The 85-page report comes on the eve of a promised Ontario review of social assistance and mirrors many of the recommendations of a provincial expert panel that called for more coordination of federal and provincial programs for vulnerable working-age people.

"Even with better coordination, there is considerable room for streamlining by making provinces fully responsible for all employment measures and programming," says the OECD report, released this week.

Like many OECD countries, the report notes Canada's benefits and services are focused on what the sick and disabled cannot do rather than on what meaningful work they are able to do. Before the recession, just 60 per cent of Canadians with health (issues) or disabilities were in the workforce and their unemployment rate of more than 16 percent was twice as high as the general population, the report says.

A spokesperson for federal Human Resources Minister Diane Finley said the Harper government has taken "unprecedented action to support Canadians with disabilities" including the new Registered Disability Savings Program, Employment Insurance sickness benefits for the self-employed, and the Working Income Tax Benefit.

Mary Marrone, of Ontario's Income Security Advocacy Centre, welcomed the report's recommendation that Canada and other countries need to focus on people's abilities, not their disabilities. But she is concerned about the report's suggestion that countries should tie disability benefits to a person's efforts to work, even part-time. "We need to be providing real opportunities for people to work through employment support and accommodation and not make work an obligation for people with disabilities," she said in an interview.

Michael Mendelson of the Caledon Institute of Social Policy said Canada would be unwise to adopt one-stop shopping for the disabled before reforming the various federal and provincial programs. "Creating an integrated service as a Band-Aid over a dis-integrated system would just create one more layer of bureaucracy," he said. "The issue is the coordination of programs," said Mendelson. "We need to try to develop our income security system as a whole."

Reprinted from The Toronto Star, October 3, 2010, courtesy of Torstar Syndication Services.

Equitable Access to Print

Editor's Note: Beryl Williams is an AEBC member who lives in Saskatoon, Saskatchewan. When she retired from teaching to raise her children, she became active in the disability consumer movement.

I have been unable to read conventional print throughout my adult life and have relied entirely on audio books, produced and provided through a number of not-for-profit, voluntary, charitable sources. Over the years, I have enjoyed a wide variety of classic and contemporary fiction and non-fiction. There has been a significant interest throughout the past two decades in increasing parity between print and alternate format collections in Canadian public libraries. There has also been a noticeable increase in audio books produced by commercial publishers; however, the largest proportion of alternate format titles is still produced through the benevolent auspices of that same voluntary, charitable, non-profit sector.

In compliance with Canada's Copyright Act, these non-profit producers are granted exempt status from copyright royalty payments. This requires that such alternate format publications must only be made available to registered, eligible non-print reading Canadians. This has effectively created special/segregated library services for those unable to read conventional print formats. This, in turn, has effectively restricted accessibility and availability of preferred reading choices for one specific segment of Canadian society.

In contrast, commercially produced titles, usually audio, not having the copyright exempt status, are available to anyone wishing to listen to, rather than read, a book. The market for commercially produced audio has exploded over the past five years, along with another growing trend towards provision of electronic digital texts online for purchase or loan. As a result of technical advances in production and publishing, individuals requiring audio formats also now have greater preferred reading options.

Public libraries have risen to the challenge of Inclusion and equitable access for print handicapped Canadians, and are prepared to put their collective support fully behind the concept of making a publicly funded and operated public library system a reality for everyone across Canada. As a public library patron for over 40 years, I have witnessed significant changes in the variety of services provided to enhance the library experience for those unable to access conventional print information. These include: personal assistance with locating specific titles; technologies to enable access to newspapers and personal print reading material; online availability of community, provincial and national information; and a genuine willingness to accommodate the needs of library patrons, regardless of differences or limitations.

It is important to recognize and acclaim the proactive involvement of both stake- and Rights-holder organizations in pursuing equitable access to Canadian public libraries for patrons who historically have been compelled to accept limited access to the services and benefits provided to other Canadians, through Canada’s National Public Library System. I believe that this is a very complex issue for all parties concerned, and will require serious cooperation and collaboration from every quarter--all three levels of government, commercial publishers and authors, alternate format producers, libraries and all end users--if Canadians unable to use conventional print information are to be afforded the Right and Responsibility to participate and benefit fully from equitable access to public libraries across the country.

Our Rights, Our Future: A Rights-Holder Perspective

Editor's Note: The following are notes for the President's Report delivered by Robin at the opening of AEBC's 2010 Conference and Annual General Meeting (AGM) in Montreal, Quebec.

I would like to welcome all of you to our Conference and AGM in Montreal. I am sure you will enjoy your visit here. I hope you meet some old friends and get acquainted with some new folks from across the country. Please join me in thanking the organizing committee--Anthony Tibbs, Marc Workman, Natalie Martiniello, Heather Rupert, Rosie Arcuri, Ezra Chitayat, Paulo Monteagudo--and the rest of the Montreal Chapter for working hundreds of hours to make this weekend a success.

I would also like to thank the 2009-10 Board of Directors for their commitment of valuable time and hard work to the AEBC. Each National Board member devotes many hours each week to promote the goals and objectives of our organization. Denise Sanders is leaving the Board after serving four terms, two each as Treasurer and Director Without Portfolio. She plans to stay involved on the Communications Working Group and will continue to participate with the Kelowna Chapter.

Welcome to all the new members who have joined AEBC during the past year.

To all the Chapters, I thank Executive members for their commitment to the work of AEBC. Also, I would like to thank the Affiliate for all its hard work in British Columbia. Further thanks go out to our National Committees, including scholarship, finance/fundraising, human resources, membership and policy development, and their many working groups.

I am pleased to report that, for the 2009-10 academic year, AEBC awarded three scholarships and two bursaries: The AEBC Rick Oakes Scholarship for the Arts to Mr. Allan Angus; The AEBC National Achievement Scholarship to Mr. Anthony Tibbs; The Alan H. Neville Memorial Scholarship to Ms. Helen McFadyen; The Reverend Leslie Ball Bursary for the Performing Arts to Mr. Koceïla Louali; and The Reverend Leslie Ball Bursary for Vocational Training and Trades to Ms. Stephanie Berry. Congratulations to the winners. We wish them all the best in their studies and future plans.

AEBC has been very active during the past year. Discussions have taken place over the past several months between representatives of consumer organizations of blind Canadians, CNIB, the Learning Disabilities Association of Canada and the Council of Canadians with Disabilities. These discussions have been aimed at drafting recommendations on how a new network hub responsible for coordinating access to library services for print disabled Canadians should be designed and operated. Final recommendations were submitted to Library and Archives Canada (LAC), which is drafting a proposal to be sent to Cabinet. There will be future opportunities for AEBC and individual members to have further input into this process.

AEBC’s National Board of Directors has approved these recommendations with one exception: we have a membership resolution in place stating that any entity like the one being proposed be government run and operated. This resolution prevents the AEBC from endorsing that particular recommendation; however, the Board supports the remaining recommendations.

AEBC has also been meeting with other national rights-holder organizations and CNIB to attempt to form a national coalition that will work collaboratively on common issues. The main purpose of these meetings was to build on some of the momentum established over the last several months as these and other disability groups worked on the library issue.

Everyone seemed to agree that the working relationship was positive and productive, but if it is to continue operating as anything more than an ad hoc coalition, we needed to determine and clearly articulate the structure, roles and operations of the coalition and its various member organizations. In May, the groups met for two days in Toronto, and developed terms of reference for the Coalition. Each participating organization is to discuss the outcome of these meetings, and indicate its participation in the coalition. It is expected the groups will not meet again until the fall of 2010, and in the meantime work is to begin on access to PIN-and-card and point-of-sale devices.

A resolution will be introduced to you, the members, at this Conference to endorse AEBC's participation in this coalition.

Over the past year, the AEBC National Board has been engaged in a comprehensive review of our activities. Our goal has been to determine those areas where we are most effective, and those in which our performance or effectiveness could be improved. Discussion of this review will take place at this Conference.

We also need to work on our communications strategy. The present redesign of the national website will go a long way toward addressing this concern, by collecting information on each “issue” (elections, quiet cars, education, etc.) into a central location; however, our internal communications (among Chapters, members and the National Board) also needs an overhaul. This Conference will give you the opportunity, as members, to participate in determining how AEBC will go about communicating our future activities to you. The final plan will need "buy-in" from all levels of the organization--Chapters, committees and the National Board--to be successful.

Several years ago, Donna Jodhan, our 2nd Vice President, launched a Charter case in which she is challenging the Canadian government over inaccessible websites and unequal access to information. Donna, with her lawyers and supporters, including AEBC, has been fighting to force the federal government to make its websites and information accessible and usable. Unfortunately, to date, the Canadian government has ignored all requests to settle this ongoing action. Donna's case, on behalf of all Blind Canadians, will be heard in federal court on September 21-23, 2010. The AEBC fully supports this landmark access case, and we urge members of our community to come out and show their support. (Editor’s Note: Please see “Challenging the System” elsewhere in these pages for further details and an update on the case.)

AEBC continues to submit briefs and make presentations on issues of concern. More and more, we are being recognized by all levels of government as the real voice of Canadians with significant vision impairment.

Our activities over the past year (2009-10) have included: meeting with representatives from the Office of Disability Issues re a national ID card; hosting Michel Grenier, Director of Library and Archives Canada (LAC) at our November Board meeting; making a presentation to the review of the Accessibility for Ontarians with Disabilities Act (AODA); a presentation on poverty to the House of Commons Standing Committee on Human Resources, Skills and Social Development (HRSD); presenting Webzine on the AODA and the Accessibility Standards development process for Citizens With Disabilities-Ontario (CWDO); a presentation to the Standing Committee on Social Policy for Bill 152, an act respecting a long-term strategy to reduce poverty in Ontario; meeting with HRSD Canada Special Advisor to Minister to discuss funding, hybrid cars, electronic voting, library issues etc.; participating in Canada Transportation Agency Advisory Committee meetings; Speaking on advocacy and facilitating a workshop at the annual Ontario Disability Support Program (ODSP) Action Coalition Conference, entitled Leading the Way: Developing a Poverty Reduction Strategy for People with Disabilities; speaking on a panel at Sick and Tired of Being Sick and Tired: Taking Action on Poverty, Poor Health and Bad Jobs, sponsored by the Toronto Social Planning Council; and attending the Saskatchewan Legislative Assembly on the introduction of the Blind Voters Rights Bill.

Briefs and position papers we have submitted include: Electoral Accessibility: A Key to Equality, to the Standing Committee on the Legislative Assembly of Ontario; Status of the AODA; Copyright Consultation; National Economic Strategy, to the Standing Committee on Finance; Review of the Municipal Elections Act, to the Ontario Ministry of Municipal Affairs and Housing; Bill 152, an act respecting a long-term strategy to reduce poverty in Ontario, to the Standing Committee on Social Policy; and Information and Communication Accessibility Standard (ICAS), to the Ontario Ministry of Community and Social Services.

More details on our activities can be found by visiting our website: http://www.blindcanadians.ca (Editor’s Note: Also see “Headlines & Highlights” in these pages for updated information).

Finally, some AEBC members believe our organization would be more successful if we concentrated our efforts on fewer issues. This is an understandable view but potentially problematic, due to the vast number of other barriers blind Canadians continue to face daily. We, as a national organization and the voice of the blind, cannot ignore these issues. However, I believe that becoming more focused on a few issues can be achieved, as long as we still recognize there are many issues related to blindness that need to be addressed, albeit at a lower priority.

Over the past few months, the AEBC Board has been discussing the idea of trying to find three to five "issues" that we, as an organization, can prioritize so that our actions are focused and more effective. A large list of issues that matter to blind, deaf-blind and partially sighted members was drawn up primarily from the brainstorming session at the face-to-face Board meeting that took place in Toronto. We started out with a list of more than 20 items, which we then proceeded to merge and eliminate, combine and rewrite. We also recently conducted a poll among the membership to ascertain which issues you consider the most important. The results will help guide the discussions at this year's Conference.

The outcome of these discussions, in many ways, will be a difficult task for each of you to consider. The issues are all very important, and it will be hard to choose a few that deserve to have a higher priority than others. However, we need to face the question of whether we can achieve more by becoming focused.

An AEBC member is a rights-holder who inspires empowerment and addresses our rights for the future.

Each member of this organization needs to advocate and be part of the common voice of the blind. We, as a community, need to work together, speak out, and take action. We must work in our local Chapters, through our National Committee's, and as a national voice to ensure our rights are entrenched. Our advocacy must become focused, and yet we must continue to address the wide range of barriers we face.

Our rights and our future are in your hands.

Human Rights Coverage: The Unrealized Promise

Editor's Note: John Rae, Robin East and Donna Jodhan are AEBC National Board members, and are experienced litigants in the human rights process.

In the 1970s and early 80s, the Disability Rights Movement in Canada invested a lot of time and energy to obtain human rights protection for persons with disabilities (PWDs) at all levels. We were seeking the establishment of an equitable legal framework, and in many jurisdictions governments were not willing to provide us with our rights. In many instances, we had to fight very hard, but in the end we succeeded, and today PWDs are covered by all human rights statutes across the country, though numerous differences exist from jurisdiction to jurisdiction.

John Rae had the great honour of participating in some of this tough work, and he remains convinced that this time and energy was well invested. However, we have not achieved as much progress as our movement had expected. We may have achieved an equitable legal framework, but we are still far away from achieving a similar level of substantive equality. Far too many PWDs continue to live on the sidelines in this affluent country.

An individual who feels discriminated against must first determine the correct body to which to complain. For example, when Air Canada introduced its inaccessible flat-screen entertainment system, should John Rae and Marcia Yale, former AEBC National Secretary, have complained to the Canadian Transportation Agency (CTA), citing an "undue obstacle to travel," as CTA’s criteria requires, or was this a case of discrimination covered by the Canadian Human Rights Commission (CHRC)? Since they travelled on these and other airlines, it seemed like a clear case of discrimination. They filed with the CHRC, which took their complaint.

The Court Challenges Program (CCP), which once provided financial assistance for initiating challenges under Canada's Charter of Rights and Freedoms, was invaluable in giving all equality-seeking groups, including the disabled community, the opportunity to test some federal government actions, and to try to extend the impact of the law. The cancellation of the Equality portion of the CCP by the Harper government has greatly weakened our community's ability to test federal government actions. If we want to launch new Charter challenges, we must now seek the support of a legal clinic, like ARCH Disability Law Centre, or find lawyers who are willing to work with us on a pro bono basis.

We had hopes and expectations that Human Rights Commissions would make a profound difference in our daily lives, by helping to level the playing field between citizens and large organizations, but resource inequalities continue to plague the human rights process. In addition, their emphasis on complicated judicial-like procedures, individual complaints, and our misperceptions of how Commissions really operate, can get in the way of making maximum use of what they can offer.

A complainant must first succeed in filling out the forms and figure out how to get their complaint taken. Today, it often seems as if Commissions are making the process needlessly complicated as a way of discouraging new complainants from even filing. Many potential complainants, furthermore, believe that the Commission provides a lawyer to "represent" them, but this is not the case. Even when a Commission lawyer does get involved, this is only after the process is well underway.

When a Commission lawyer is involved, he is there to "represent the public interest." In cases where the complainant is seeking a systemic or public-interest remedy, you may be able to work closely with the lawyer, who may be extremely supportive in developing and presenting the systemic side of your case; however, he is not there to represent you as the complainant. You are basically on your own.

After filing a complaint, you will likely be asked to participate in a mediation meeting, to which you may bring a friend, advocate or lawyer at your own expense. During mediation, the Commission may subtly, or not so subtly, encourage (or even pressure) you to settle.

Sometimes, there are good reasons to agree to a settlement. The facts in your case may not be as clear cut as you might like, for example, Or settling will be quicker and will alleviate the pressure cooker of going through a Tribunal, a quasi judicial hearing, where you may win or you may lose altogether. Settling, furthermore, will likely gain you something, such as systemic changes and/or a monetary amount in your favour. Sometimes, you may even be able to reach a substantial settlement, as John Rae and Marcia Yale did on March 12, which they hope will bring about an accessible onboard entertainment system on Air Canada and Air Canada Jazz flights.

For persons with disabilities who may be unemployed or live in chronic poverty, dangling even a partial victory in the form of a small monetary award may prove to be a carrot that is too attractive not to accept. Settling writes no law, however. Whenever a complaint is settled, it goes unreported and is of no help to others who have also been discriminated against. Thus, there is no indication as to which organizations are habitual respondents, information that would be useful in planning community actions.

In recent years, some settlements have not included the strict "cloak" clause, whereby the settlement is written in such a way to educate respondents and complainants. In such cases, neither the complainant nor the respondent is named. An example is a settlement on alternate formats that came out of the Canada Revenue Agency. This type of settlement can be useful but, again, most settlements remain entirely cloaked, in order to protect the respondent.

In the disabled community, the difficult task of filing complaints rests on the shoulders of too few individuals. It is easy for a Commission to say, "Oh no, here comes Robin or Donna or John again.” What should we be seeking from what often can seem like a David versus Goliath scenario? The process needs to be streamlined to prevent a well-resourced respondent from dragging out the proceedings because they can afford to do so. Before the human rights process in Ontario was overhauled, its Commission instituted a "fast-track" system that saw cases moving at a much faster pace, but this system was not in place long enough for us to know if it would succeed in the longer term.

Commissions need to devote more resources to cases that can bring about systemic remedies. While enabling an individual to seek personal redress in instances of discrimination will always be important, individual remedies do not help others confronted by a similar problem. Commissions also need to make greater use of the power that many possess to initiate complaints of discrimination that are in the public interest, and to try to extend the impact of important decisions that contain systemic remedies. Since David Lepofsky, a blind lawyer, won two cases against the Toronto Transit Commission concerning the calling out of subway and bus stops, the Ontario Human Rights Commission (OHRC) has used that decision to pressure most other Ontario transit providers to take similar action, thereby alleviating the need for additional community members to file separate complaints against their own transit providers.

We ourselves need to develop a group of individuals across Canada who are prepared to file complaints, as there may come a time when we will want to file a similar case in several provinces or territories simultaneously. And when we file, do we ever think of also alleging harassment, along with discrimination? When filing, if there are ever doubts on what grounds to cite, or what remedies to request, all ideas could be included at the time of filing.

Canada's Disability Rights Movement has fought hard to achieve human rights coverage, and disability, particularly in the area of employment, has consistently remained the number one category of discrimination complaints across the country. We must continue to support each other in taking cases to Human Rights Commissions, especially through the Tribunal process, where law gets written. After all, there was no point in securing this legal protection if we don’t use it.

Photo: Robin East, AEBC President
Photo: John Rae, AEBC, 1st Vice President
Photo: Donna Jodhan, AEBC, 2nd Vice President

Competing Models of Disability Must Continue to Evolve

Editor's Note: John Rae is AEBC’s 1st Vice President. This article is based on his presentation "From Invisibility to Rights Holders: Competing Paradigms of Disability," at Ryerson University, October 2009.

In his 1990 article, "The Individual and Social Models of Disability," Mike Oliver, an academic in the Disability Studies field, observes: "There is a danger that in discussing issues related to disability, we will end up with more models than Lucy Clayton [a modelling agency]. This is dangerous in that if we are not careful, we will spend all of our time considering what we mean by the medical model or the social model, or perhaps the psychological or, more recently, the administrative or charity models of disability. These semantic discussions will obscure the real issues in disability, which are about oppression, discrimination, inequality and poverty."

It is my view, however, that many of these paradigms themselves are a significant source of the current discrimination, marginalization and oppression that is still the life experience of far too many persons with disabilities (PWDs). Today, the primary debate in the field of disability revolves around the fundamental differences between the medical and social models of disability--between viewing the disability as the primary cause of our problems, and seeing policies, attitudes and barriers in the built environment as the real impediments to our full participation and equality. However, these are only two of many ways in which disability has been described over the centuries. As new paradigms emerge, they vie for predominance and sometimes supplant previous paradigms, but the old ways of describing disability continue to compete for the attention of the public and of PWDs ourselves.

Persons with disabilities have been present from time in memorial. In ancient times, they were often ostracized from their communities and left to fend for themselves in the wilds. In medieval and renaissance periods, they were often ridiculed, as the Catholic Church interpreted them as rejects, works of the devil, and punishments for parental mistakes. This led to being excluded from society.

Remember the story in the Gospel of John, Chapter 9, about the man born blind? As the disciples walked along with Jesus, they passed by a blind man (begging, of course) and asked, "Who has sinned, this man or his parents that he was born blind?" In some cultures, PWDs are still seen as punishment for past sins.

Following Canada’s Confederation in 1867, the first residential schools for the blind were established in Nova Scotia and Ontario. While education for blind students was undoubtedly forward thinking at that time, these schools were established under the provinces’ respective Penitentiaries and Asylums Acts. In the early 1900s, the "hide us away syndrome" became even more prevalent, with the creation of various large institutions, usually in small towns, where many PWDs were housed, “out of sight and out of mind" from the rest of society.

In 1918, the CNIB was established, and later other charitable organizations were founded, to form the rehabilitation industry that is too often imbued with a philosophy based on the Charity Ethic. Training of medical professionals, furthermore, focuses on curing or fixing the sick, though most of us are no more ill than our non-disabled counterparts, and those of us with a permanent disability will never be "cured" or "fixed." Both the charity and medical ethics have some similarities to the Professional Ethic, where decisions about "what's best" for us are controlled by others, with or without our input.

In the 1970s, persons with disabilities, seeing the successes of the Civil Rights and Women's movements, began to establish our own organizations. The Consumer Movement, or the Disability Rights Movement, started partly as a reaction against the charity industry and partly to provide a vehicle for self-organization and self-expression, both fundamental rights in any democracy. This process gave us as citizens the opportunity to begin forging our own destiny. For many of us, the Disability Rights Movement was a source of empowerment, giving us our first chance to participate directly in developing policies and strategies that affect our daily lives. One of the lasting benefits of our Movement is the opportunity it has given many of us to develop skills that are so useful throughout our lives.

The Disability Rights Movement invested a great deal of time and effort to secure coverage under Canada's Charter of Rights and Freedoms and under federal, provincial and territorial Human Rights Codes. We succeeded in gaining an equitable legal framework, but even today we are far closer to achieving the Charter's guarantee of being "equal before and under the law" than to enjoying the anticipated measure of substantive equality of the "equal benefit of the law," which we are still far away from attaining.

Today, various paradigms continue to compete for prominence. Robin East, AEBC's President, has recently developed the newest way of approaching disability--the Rights Holder approach. Based on the idea of "nothing about us without us," this paradigm posits that we who have disabilities must no longer be lumped with all other so-called stakeholders, but must be given a pre-eminent role in determining the policies and legislation that affect our lives. Currently, we as Rights Holders are forced to fight hard to maintain the fundamental idea that our concerns should be viewed as issues of rights and not charity, issues that belong in the news and not the Life section of our newspapers.

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is a new and important international instrument recognizing the appropriateness of the social model of disability. Now, it is up to all of us to learn what the first human rights Convention of the 21st century means, and to learn how to use it, and other Conventions, to advance our equality, both domestically and internationally.

Canada's Social Policy - Positive Changes and Persistent Challenges

Editor's Note: Michael Prince is the Lansdowne Professor of Social Policy at the University of Victoria in British Columbia, and is a board member with the BC Association of Community Living.

For persons who are blind, deaf-blind and partially sighted, what in Canadian social programs has changed over the past 20 years that positively affects their quality of life and status of citizenship? And, just as importantly, what has not changed?

The specifics of reform no doubt vary by provincial and federal jurisdiction. In a political system of federalism, it is more useful to think of a multiplicity of policy records. Ideally, then, to answer the question of the Canadian record of progress, we would need a series of case studies that cast light on results spanning an array of government jurisdictions, communities, services and instruments of public policy. Moreover, the timeframe to assess changes in approaching disability issues, and the expectations for major changes, likely vary among interests within the Canadian disability community. Here, I can offer only a selective overview assessment.

Positive developments over the last few decades in advancing access and inclusion for Canadians with disabilities include:

  • New tax benefits recognizing additional needs and costs of persons living with prolonged or severe disabilities, and their families. Examples include the Child Disability Benefit, Disability Supports Deduction, and the Registered Disability Savings Plan.

  • Public education and social awareness campaigns by governments, employers and broadcasters that contributed, along with other factors, to a shift in discourse from a personal tragedy to a public participation viewpoint.

  • Changes to federal, provincial, and some municipal election laws and procedures, including outreach measures to improve the accessibility of voting for citizens with disabilities. From a survey of almost 200 associations representing people with disabilities about the 2000 federal election, 89 percent reported a positive impression of Election Canada's role, 75 percent were satisfied with services to Canadians with disabilities, and 72 percent were aware of these access services.

  • Technological advances in communication that include captioning of all national programming by Canadian television stations and some local programming, TTY (teletypewriter) access through telephones, video relay services and, most recently, wireless pagers and messaging services.

  • Legal developments regarding disability and political victories, such as the right to sign-language interpreters in health-care services; Québec legislation in 2004 to further secure handicapped persons their rights to achieving social, school and workplace integration; and passage in 2005 of the Accessibility for Ontarians with Disabilities Act.

  • A concerted effort by Statistics Canada since the 1980s to conduct surveys on Canadians with disabilities in order to identify their lived experiences, the barriers they face, and trends over time. Other federal departments and think tanks also have greatly assisted in the development, interpretation and dissemination of much disability information.

  • Adoption by the United Nations General Assembly, in 2006, of the UN Convention on the Rights of Persons with Disabilities. The Canadian government in 2007 signed the Convention and fully ratified on March 11, 2010. The Convention covers civil, political, cultural, economic and social rights--a multidimensional conception of citizenship--supported by a monitoring body to encourage the compliance of states to their obligations.

Hence, there have been many achievements in Canadian disability policy and practice in recent decades, but they have been uneven and incomplete.

There have also been setbacks. For example, in the mid 1990s, the federal government withdrew from cost sharing with the provinces the provision of core social services and social assistance across the country. In the late 1990s, the federal and most provincial governments approved reductions to CPP (Canada Pension Plan) Disability benefits. Federal expenditures on employment services for persons with disabilities remain modest and, more significantly, stagnant in real terms over the last decade. As grounds of discrimination, disability is by far the most common type of complaint brought to the Canadian Human Rights Commission.

Serious gaps persist in access to affordable, quality disability-related supports for a considerable number of Canadians with disabilities. The default is informal family care and charitable services where possible, and where not, social isolation and unmet basic needs with everyday activities.

The general picture in Canada on employment for persons who are blind, deaf-blind and partially sighted continues to be one of relatively high rates of unemployment and underemployment, with barriers to training and placement services, along with inadequate supports for employment preparation and accommodations in workplaces.

Large numbers of people with disabilities are not receiving the essential services they require because of cost, lack of availability and inaccessible environments. Entry to some supports are still tied to receipt of income benefits, most notably social assistance, which adds a barrier to gaining access to needed services.

As I point out in my recent book Absent Citizens: Disability Politics and Policy in Canada (University of Toronto Press, 2009), individuals and their families bear a disproportionate share of the costs, work and responsibilities associated with addressing the everyday needs of living with disabilities. As a consequence, they experience undue hardship and are restricted from full and active participation in economic, educational and social life.

Due to inadequate supports, attitudinal barriers, and insufficient employment opportunities, plus provincial government efforts at moving "able bodied" people off welfare, people with disabilities now represent between 40 to 70 percent of those on income assistance, the so-called "social safety net." This program of last resort has become the program of first resort for thousands of people with disabilities across the country--a program distinguished for minimal rights, complex rules, and the sting of stigma.

Most social policies in Canada still regard disability as specific impairments, diseases and disorders; programs are categorical rather than a continuum of services, with sharp distinctions and abrupt changes when a person experiences a life transition. Living with a disability in Canada remains a strong predictor of welfare dependence and poverty for individuals, families, and many of the agencies struggling to assist them. A critical need therefore exists for enhanced income security, personal supports and public services.

For younger Canadians who are blind, deaf-blind and partially sighted, a key social policy goal must be accessible school-based supports, and school-to-work transitions to employment preparation and placements.

For the current generation of older Canadians who are blind, deaf-blind and partially sighted, important social policy issues concern ensuring more adequate and dignified provision of financial support at the federal and provincial levels of government as well as encouraging social participation and inclusion through such local and municipal activities as adult education, community services, recreation and peer support.

For all Canadians, the necessity exists to raise awareness on an ongoing basis about the fact that people who are blind, deaf-blind and partially sighted are still among the most vulnerable citizens in our society.

Photo: Michael J. Prince

Poverty: The Poor Are Sick and Tired, Study Says

More money in people's pockets creates more opportunities

Being poor will make you sick or send you to an early grave at alarmingly higher rates than if you are a middle- or upper-income earner. That was a key finding of a report released Monday at a community forum on health and poverty held at the YMCA in downtown Toronto.

While the report, called Sick and Tired, looked at the health risks faced by welfare and disability recipients and the working poor across Ontario, Toronto's high levels of poverty result in more low-income earners (experiencing) medical problems, Toronto medical officer of health Dr. David McKeown said.

About 25 percent of Toronto residents live below the poverty line, twice the provincial average. A third of Toronto children are living in poverty compared to 19 percent nationally. Looking at different income increments, the report found residents living in rich neighbourhoods are less likely to (experience) health problems than those living in middle-income areas, who in turn are less likely to be sick than residents of poor communities, McKeown said.

The study found the median household income for social assistance recipients is $13,000 a year compared to $21,000 for the working poor and $80,000 for the non-poor. For almost every measurement--from suicide and depression to heart problems and arthritis--welfare recipients and the working poor are more at risk of health problems and death than the non-poor, said Andy Mitchell, one of the report's three-member research team. "When you have a higher income, you know how to get things done for yourself and your family," he said, adding higher-income earners are more adept at navigating medical and bureaucratic systems.

Raising a poor person's annual income by just $1,000 enables them to escape hundreds to thousands of chronic health conditions. "To me, that was very powerful," Mitchell said.

Meanwhile, while new immigrants come to Canada healthier than Canadian-born residents, they become sicker as lack of opportunities forces them into poverty, the study found.

The report's authors admit their findings tying poverty to health risks are nothing new. But as the economy worsens, they are calling on the province to address the issue in its spring budget. "The budget is an opportunity for the province to make a down payment on a poverty reduction strategy," said Michael Shapcott, Director of Community Engagement at the Wellesley Institute, which helped fund the study.

The report also laid out ten recommendations, including urging Queen's Park to establish an independent panel to set social assistance rates that reflect the actual cost of living in Ontario communities, and demanding the federal government introduce a national poverty reduction strategy with concrete targets and timelines.

John Rae, First Vice President of the Alliance for Equality of Blind Canadians, and Mike Yale, Co-Chairperson of the ODSP (Ontario Disability Support Program) Action Coalition, are hoping politicians don't shelve the report like so many studies in the past. "Too many of the disabled community are marginalized and live in poverty. These reports confirm that fact again and again and again," Rae said. "We're looking for action, not just more studies. It (this study) confirms if you put money in people's pocket, it creates more opportunities to buy better food, to buy health care, to participate in the community, to go to entertainment. These things all benefit people's lives."

Yale, a North York resident, also doesn't want to see the study gather dust. "It won't mean anything unless it becomes part of government strategy," he said. "When a family has to decide between feeding itself or buying a winter coat, it is a serious problem and the government, in my view, hasn't shown it is serious about dealing with the disability pension."

Reprinted from Toronto Community News, February 10, 2009: www.insidetoronto.com

Disability Rates Worry First Nation Groups

The number of aboriginal children born with disabilities has reached crisis levels largely because the province and the federal government won't fund long-term substance abuse programs or provide proper maternal care on-reserve, First Nation groups said.

In the last two months, more than 600 Manitoba children have been taken into foster care--most of them from aboriginal communities and many of whom (have) medical disabilities that can't be treated on-reserve. There are about 7,200 children in foster care in Manitoba--85 percent are aboriginal and more than a third of children are living with a medical disability.

Trudy Lavallee, Policy Analyst for Assembly of Manitoba Chiefs, said a growing number of aboriginal children are born with severe disabilities like Fetal Alcohol Spectrum Disorder (FASD), Down syndrome, or develop complications from diabetes, like blindness. She said an increasing number of First Nations communities are struggling with substance abuse, but neither the federal government nor the province will pay for rehabilitation programs on-reserve. Lavallee said there are only two pilot rehabilitation programs on-reserve across the province, and most people wait up to a year to access addiction treatment in cities like Winnipeg.

At the same time, she said women on-reserve have no access to prenatal health care to encourage them to eat properly, exercise and stop smoking and drinking--something that can prevent many birth defects.

Lavallee said the federal government typically pulls the plug on pilot health-care projects on reserves that have been successful, and residents are told they can get medical treatment off-reserve instead. The province won't step in to pay for health-care services on-reserve since First Nations are a federal jurisdiction. Lavallee said ongoing bureaucratic disputes have resulted in more children being born with birth defects, and more parents turning over their children to foster care.

Parents with a disabled child have little choice but to forego care or send their child into foster care in cities in order to get the help they need. "Kids with special needs, these numbers are growing and we see that by the number of kids coming into care," Lavallee said. "There's a large increase in children with complex medical needs or special needs, and kids in trouble with the law."

Don Fuchs, a social work researcher at the University of Manitoba, said close to 20 percent of disabled children in foster care have FASD--a preventable disorder that causes anything from severe brain damage to behavioural problems like attention deficit disorder.

Reprinted from the Winnipeg Free Press, August 20, 2007.

A Call For Balanced Input

Editor's Note: Brenda Cooke is a member of AEBC's Saskatoon, Saskatchewan, Chapter. The following, reprinted from the Saskatoon Star-Phoenix, February 8, 2008, was written in response to the recently elected Saskatchewan government's decision to disband the Council on Disability Issues in favour of consulting a variety of community groups that represent people with disabilities (stakeholders), rather than focusing specifically on rights holders--persons with disabilities.

As a person with a disability, I urge Social Services Minister Donna Harpauer to reconsider her plans for consulting with the community on disability issues.

I've never been sure what the Council on Disability Issues has been doing, but that doesn't mean it's not worthwhile. Sometimes such groups are window dressing for the government, but sometimes governments get rid of them because these groups don't have the ability, money or the power to defend themselves.

It is important that the Wall government put in place a structured and obvious method to consult with disabled consumers and organizations that provide services to them, but it must keep several things in mind.

There is a distinct difference between representatives from service organizations and those from consumer groups. Service organizations do care about their clients, but they have a vested interest in making sure that people continue to need their services and hence provide them with job security. These organizations are less likely to promote real change in case they offend a funding source.

Representatives of consumer groups most likely want to bring about equal participation in society through opportunities for work, family, finances, social activities and the ability and resources to participate with as much independence and self-determination. The disabled want this done with as little charity as possible. Consumer groups have open, affordable membership and are governed through the democratic process involving all members.

In any consulting structure there should be equal representation from people with disabilities and their families, and service providers, one or two people with disabilities who have an extensive background in disability but have no affiliation, and maybe one or two government officials. Non-affiliated individuals and people representing consumer groups should be given an honorarium and/or have their expenses covered because often they are volunteers struggling to get by on incomes below the poverty line.

Even with such a structure in place, there should be open public forums at least twice a year and widely circulated bi-monthly public reports so that everyone interested can see what's being accomplished.

I am afraid that if an open and structured process is not established, the disabled and their community of supporters will think that this government views them as unimportant and disposable.

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