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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.

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