Societies have long sought to explain disability. Historically, the two most prevalent viewpoints – that disability is either a moral condition (either special or frightening) or a medical condition (a malady to be cured by experts) has had a profound and mostly negative impact on the lives of people with disabilities. Only recently has a third view of disability emerged – that people with disabilities are regular people, a minority group with the same civil rights as others.
In this last of a three-part series, we look at the civil rights view of disability, where it comes from, how it affects the lives of people with disabilities today, and how to build a culture of dignity, empowerment, and participation.
The Civil Rights View of Disability
Like everyone else, people with disabilities want to be seen as people; not labels. And we expect to have equal rights. The problem, unfortunately, is that society doesn’t always treat us equally. Because of the prevalence of outdated ideas about disability, people with disabilities are often stereotyped, denied basic rights, expected to change, to fit in, or stay out of the way. In the last few decades, however, things are starting to change. In the same way that other minority groups have worked together to gain their civil rights, people with disabilities are now working with each other to change society. And as we join together, we are creating a new way of looking at disability. We call it the civil rights viewpoint, and it has spawned a culture of empowerment and positive change.
The civil rights view of disability is the powerful idea that people with disabilities are regular people with the same civil rights as all other citizens. This is the idea that people with disabilities are a minority group in our society. In this view, the problem is not people with disabilities. We don’t need to be fixed. Society has the problem – a justice problem – and society needs to be fixed. Like other minority groups, people with disabilities need to work together to demand and reclaim civil rights for everyone.
If you wonder where the disability rights movement has come from, look at what has been happening in America over the last 100 years. Small groups of people have joined together at the grassroots level to make big changes. Laborers and farm workers organized unions to achieve decent hours, better working conditions, and fair wages. Women organized to change the US Constitution and finally get the right to vote and to address and reverse unequal treatment. African Americans organized the civil rights movement to fight discrimination and oppression. Parents of children with disabilities organized themselves to demand participation in their children’s educational and medical treatment. American Indians organized for the honoring of signed treaty agreements. Gay and lesbian people organized for equal treatment under the law.
All these social change movements have much in common. They have faced similar problems: discrimination, lack of civil rights, oppression and segregation. They also had a common way of understanding these problems: they agreed that society had failed them, and therefore society had to change. And finally they shared a common method of making change happen – working not as individuals but working together.
Society, not the individual, has the problem, and therefore society must changed. This insight has been grasped by the disability community as well, giving rise to various disability rights struggles in the last 40 years. Like many of the groups cited above, people with disabilities have also faced the problems of discrimination, oppression, exclusion, segregation, and lack of basic rights. Together, in various ways, people with disabilities have begun working together to claim rights such as dignity, self-determination, and shared leadership. Let’s examine the rights we are claiming.
Dignity. We will not accept labels. We reject the medical/professional labels such as patients, or medical problems, or sick, or objects of pity, or objects of study. We also reject moral labels like special, retarded, innocent, idiot, sinner, or objects of fear. As people with disabilities, we claim the obvious: we are people.
Self-determination. Throughout history people with disabilities have been denied the right of self-determination and the power to make decisions about their own lives. That power has been held by professionals, educators, benefactors, doctors, helpers, parents and charity providers. Today, people with disabilities are working as a group to claim the right to choose for themselves where and how to live; the right to live in the community, not shut away; the right to work in the community, not in isolation; the right to make choices that affect their lives; and the right to make mistakes. These are the rights of self-determination, the rights that make life worth living, that make each person fully human. “Nothing about us without us!”
Leadership. Shared leadership is a key part of the disability rights movement. Each person is empowered to contribute to the vision of the movement, and to help in the pursuit of its goals. This shared leadership is in sharp contrast to the patterns of history, where persons with disabilities have been excluded from leadership and visioning. As people with disabilities have begun seeing themselves as a minority group, people within the movement are insisting on shared leadership. This cooperation will help create a lasting movement.
The civil rights view redefines what it means to have a disability. Rather than a group of individuals with problems, people with disabilities are now claiming a far different identity. We are not syndromes or medical conditions or illnesses or anomalies or morons: we are people and we have rights. We do not need to change. It is society that must change. We are a minority group that has been denied our rights, and we will work together to obtain these rights.
The civil rights view of disability is the tool we need to dismantle the discrimination, labeling and expertism of the old views of disability – the moral view and the medical/professional view. Once we understand that we are in a civil rights movement, we can use that knowledge to join with others and to make positive change. It is not simply a matter of making personal situations better, but as we work to change society, we make it better for everyone. We build a culture of dignity, self-determination and justice for all.
[Advocating Change Together has developed training materials on the civil rights view of disability that are geared to people in the self-advocacy movement. Interested groups may contact ACT firstname.lastname@example.org and ask about the workshop “Get On Board This Train to Freedom: Understanding the Civil Rights View of Disability.”]