An Agenda For Change

By Marcia Rioux

This four-part series is based on a model for justice leading to community living and inclusion and is adapted from a forthcoming book by Marcia Rioux entitled The Equality Disability Nexus.

It is possible to win battles and lose wars. One of the great challenges of social movements is to recognize that incremental reforms are not ends in themselves. They are simply part of a continuum of change that leads to the broader objectives of the movement. For example, an organization wanting education for all people with disabilities could find policy-makers putting in place a nation-wide network of segregated schools which they claim would provide the education demanded. This solution would not, however, meet the target of an equal education-one which could only be attained within the regular school system. Neither would the target of equal education be met by placing students with disabilities in the regular school system without the supports needed to accommodate their particular needs. Similarly if an organization were working to ensure that all people with disabilities in institutions with medical care would achieve that particular objective. It would, however, defeat the overall goal of the movement to achieve integration and citizenship.

Social change, in itself, does not necessarily lead to the results that are being demanded.

Within the disability movement we have, for the past few years, been going through a period of transition. During this time we have been developing a new agenda for social change-based on the link between equality and difference. To understand that agenda, and to find new ways of achieving the changes it calls for, we have to review previous agendas. We have to learn from the past and understand the limitations of the work we have done. We have to examine the present and to fit our existing goals with the directions in which Canada is changing and with what we want to achieve. And, we have to look to the future in the hope o fulfilling our wishes and dreams.

Learning form the past is usually the starting point for a new agenda. This does not mean that we reject what has been done before, but instead come to an understanding of why we did what we did, how we benefited from it, in what way it did not lead us to where we wanted to go and how we can this information to move in new directions. To build a new agenda for social change that recognizes the equality-disability nexus, we must recognize opportunities that exist now which did not exist at other times.

For most of this century, people with disabilities were considered unfortunate, pitiable people who were given things because others felt sorry for them. They were the recipients of charity from people who were being kind. This was fortunate for them because if they were not cared for by their families or were not given charity they would have had nothing. They were not considered productive members of society, so no one considered that the state or anyone else had any obligation to give them the services and money they needed.

Since the 1950s there have been a number of changes in the way issues of disability have been addressed. First, the social movement and concerned professionals concentrated their efforts on establishing the means and the financial support to habilitate or rehabilitate the individual. The primary motivation behind changes to programs and policies was the objective of “fixing” the person so that he or she could fit into society. This objective became the focus of programs and of reform lobbying.

There followed a period during which reformers wanted to ensure that an overall set of services was available to people with disabilities to meet their needs for rehabilitation. Energies were devoted to providing the best possible services. Most of these services were more or less segregated and were designed to give the person with a disability the greatest opportunity to fit into existing social structures. There was an ongoing effort to tinker with these services, to make them better and better-to ensure that service providers valued their clients, to make services individually tailored, and to design services which would enable individuals to move into the mainstream.

Over the past 10 years a new agenda for social change has evolved. It was triggered in part by the enactment of the Charter of Rights and Freedoms and in part by reformers who recognized the kind of change needed to ensure social integration and citizenship. Rehabilitation in itself, no matter how effective, will not lead to fulfilling the goals that are now being demanded. Neither will a better system of services on its own achieve these new goals. While rehabilitation and services are necessary to achieve these goals, they are not enough to ensure justice and inclusion for people with disabilities.

The new goals for social change, which have evolved over the past few years, begin form a different premise. They recognize that the society, the “social system”, has to change if people with disabilities are to be fully participating members. These goals are best characterized by three words: RIGHTS, JUSTICE, POWER.

What do these words mean?
? Rights are entitlements. They are owed to a person, not bestowed because someone is kind enough to respond to a need. People who can demand their rights no longer have to wait for attitudes to change to get what they may rightfully claim as human beings, as citizens of Canada and as members of their communities. They do not have to wait until the rest of society is educated enough to accept them.

? Justice is equality in its broadest sense, that is, equality of outcome. People with disabilities are entitled to the social and economic support they need to accommodate their differences in education, work and leisure to ensure that they end up with the same benefits as their fellow citizens. People with disabilities must be assured not only procedural equality (that the rules applied are the same), not only equality of opportunity to compete, they must also be assured a portion of the pie that is equal to everyone else’s.

? The third goal, power, involves having the ability and the will to bring about changes on one’s own behalf for oneself. Power means being able to make one’s own decisions and having the support, either financial or otherwise, which makes that possible.

In specific terms, the goals of rights, justice and power lead to a new agenda for social change which recognizes the inextricable link between equality and difference. This affects both the kind of changes demanded and the way society has to respond to these demands. The demands have switched: from charity to rights; from best interests to choice; from paternalism to self-determination; from disempowerment to empowerment; from professional control to self-advocate control; from cost-effectiveness to output effectiveness; from fixing a weakness (rehabilitation) to developing a strength; from expedient categorization to individual need; from service to support. What is this new agenda with its basis in the goals of rights, justice and power?

First, the new agenda is a political agenda. The traditional charity model, caring for the “deserving” poor, has created sympathy. Consequently the accompanying benefits for people with disabilities has come as a response to that sympathy. But sympathy is apolitical. A political agenda calls for a change in the nature of the interaction between society and people with disabilities, to a politicized relationship in which both parties have power. Political demands would replace requests based on the powerlessness or the weakness of one group. Second, the new agenda calls for service to be addressed in a different way. The old agenda dictated that people should receive the “best” services that the deliverers could conjure up. Services were in place to make sure that people were clothed and housed and looked after. But the notion of “best” changed over time. It used to be that a 12-bed group home was considered the best; now we think in terms of four person group homes or shared apartments or living on one’s own. “Best” has gone from living on the outskirts of town or on a farm to living in desirable downtown residential areas. Best has changed from segregated pre-school programs to supporting children as students in their neighbourhood schools.

Third, the new agenda calls for an end to the notion that people with disabilities have needs and desires to participate that are different from those of other Canadians. The new agenda is about giving people autonomy, self-determination and power to make decisions for themselves and look after their own needs. It advocates for the citizenship, self-determination and equality of people with disabilities-basic benefits and rights that the rest of society already has. On behalf of people with disabilities the new agenda claims their right to entitlement to participate.

Fourth, the new agenda makes demands on the non-handicapped to share their power. It involves giving over the power of the service provider, the medical professional, the health care worker, the social worker to the person with a disability. At the community level, this means ensuring that persons with disabilities have enough money and contractual status to decide the type and scope of services that will meet their needs. For those without disabilities it means giving up their position of power and authority, and recognizing that the expertise lies in the hands of the consumer of services, not the provider of services. It means changing the traditional platform of government agendas which have been cost controlled and accepting only output controlled agendas.

Fifth, the new agenda calls for the recognition of the impact that people with disabilities in our communities will have on us all. It is often easier for people to understand the unfairness of excluding people from our environments than to understand the benefits that result from their inclusion. Having children with disabilities in the neighbourhood schools, in the regular labour force, in the community recreational facilities, in the movie theatres changes the quality of all those places, and changes what takes place there. It fosters a spirit of acceptance, a sense of community, a re-evaluation of basic values and a creative diversity. The education system is better overall for everyone when it has to recognize individuals needs. The labour force has to set different priorities when people who were traditionally excluded are included in jobs, in boardrooms, and in policy setting activities. The experience of women entering the labour force showed us that. As cultural and arts communities have begun to include aboriginal art and theatre and the work of other cultures, they have become richer sources of education and enjoyment for all audiences. And so arts and culture will be richer for all consumers when people with disabilities are both producers and audiences. The benefits of inclusion of those with disabilities in all activities will be experienced by everyone in society.

This new agenda based on the equality-disability nexus and promoting the goals of rights, justice and power provides a set of guidelines against which change can be evaluated over the next few years. In the following three parts of this series of articles the specific implications of this new agenda will be considered.

Marcia H. Rioux is Director of the Roeher Institute in Toronto.