As you requested, this is your ACT Self-Advocacy Resource
Network memo facilitating a national dialogue among self-advocates and
supporters and a clearinghouse for materials and training that support
self-advocacy.
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| August 18, 2004 | |||||||||||||||||||||||||||
| Understanding
the Medical/Professional View of Disability |
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Everywhere you turn, you see a wave of experts trying to fix disability, to help people overcome their disabilities. This wave is powered by an attitude we call the medical/professional view of disability. This view undermines self-advocacy. Rather than self-determination, we have decisions made by experts—and regular people are labeled as patients and clients. Worst of all, funding depends on keeping it that way.
Exercise: True or False: The Game Show for Self-Advocacy
Societies have long sought to explain disability. Historically, the two most prevalent viewpoints—that disability is either a moral condition (special or frightening) or a medical condition (a malady to be cured by experts)—have 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 second of a three-part series, we look at the medical/professional view of disability—where it comes from, how it affects the lives of people with disabilities today and what we can do about it. We start with the premise that the medical/professional viewpoint undermines the basic values of dignity, inclusion and self-determination.
The medical/professional view is the false idea that people with disabilities are broken and need to be fixed by experts. Disability is stereotyped as simply a “medical condition,” a physical “problem” located in the body. This harmful attitude gives experts all the power: They supposedly know what’s best and make the call on how best to fix the patient, or client.
The medical/professional view of disability may have started during the European Renaissance (1200-1500 CE). During that period, a “rebirth” of learning was taking place. As a part of this growing curiosity, scholars began studying the anatomy of people with disabilities, hoping to find a cause—and a cure. Before this time, the most common stereotype had been that disability was a punishment for sin. Now people with disabilities became stereotyped in a different way: as objects of study. Over the next 700 years, this scientific approach—the medical/professional viewpoint—has expanded in three directions. In all three, disability is a problem to be fixed and experts are in charge. One thrust has been to find the causes and “cures” of disabilities. For instance, curious “doctors” in the 16th century drilled holes in the heads of people with disabilities (with no anesthetic), hoping to find the nonexistent “fool’s stone,” which they would often pretend to remove. In the 19th century, Dr. Benjamin Rush dreamed up brutal “treatments” such as spinning people at high speeds in special contraptions—a damaging “cure” called “shaking out the madness.” Modern medicine is full of behavior modification plans and drugs to get people to behave more “normally.” A second path has been research to improve the lives of people with disabilities. Phillip Pinel (1790, France) sought to “treat” and “cure” people through humane living situations and compassionate care, rather than the chains and beatings widely used in his time. Samuel Gridley Howe (1850, America) used new methods of education to give his students the skills to live in the community. Alfred Binet (1900, France) developed the IQ test to identify children who might need extra help in school. Finally, some professionals have sought to “improve” society by dealing with or getting rid of people with disabilities, who were seen as a burden to society. Social scientists in Europe and America addressed the “problem” by containing people in asylums, poor houses and large institutions—all of which became places of abuse. In the 1800s, “mental defectives” were scapegoated as the source of crime in society. Respectable scientists and professionals called for their imprisonment, deportation and elimination to make society safe. In the early 1900s, many states had laws that enforced sterilization and prohibited marriage of people with disabilities. There were even calls for elimination of these “deviants.” |
ACT grants all memo subscribers the rights to use any and all contents of this memo with attribution as follows: Source: Advocating Change Together, Inc. Advocating Change Together (ACT) is a self-advocacy disability rights organization, started in 1979, whose goal is the advancement of self-advocacy as a civil right for persons with developmental and other disabilities. ACT has developed tools and materials that help individuals and groups promote self-advocacy in their lives and work. Call
for catalog: Copyright © 2004 Advocating Change Together. All rights reserved. |
At first glance, the medical/professional viewpoint has fostered research and services that appear to have improved people’s lives. Of course, many of these advances came at the cost of treating people as objects of study. The “objects of study” were not asked whether or not the costs were worth it. It’s also important to remember that research and progress can happen within a disability rights framework. Many professionals are now realizing that progress can only come when people’s dignity is respected, people retain the power of self-determination and the people themselves decide what is needed and use experts as resources to pursue these self-determined goals. But the problems go deeper than individual attitudes and individual behavior. There is a lot of money at stake in continuing the patient/client stereotype and the imbalance of power. Before you receive any funded services, you have to have a diagnosis. Your provider is strong-armed by medical rules and regulations to be treating you, rehabilitating you, modifying your behavior, making you lose weight, improving you, changing you, making you different in some way. The entire service system is set up to define you as a patient in need of fixing by a paid expert. This viewpoint is so widespread that people tend to think that it’s just “reality.” The sad part is that many people with disabilities have also accepted the medical/professional view as “reality” and go along with their roles as the objects of professional efforts to change them. Here is what one woman reported: “They give me Skittles for taking my shower in the morning. I don’t know why they started it. It was a staff idea and we just keep doing it. I know it is weird, but it’s what they want to do. The staff and residents are all so used to it that they don’t think twice about how weird it is.”
The medical/professional viewpoint undermines the basic values of dignity, inclusion and self-determination. We need to expose it, build the skills to recognize it and invite allies and peers to oppose this negative, disempowering attitude at all levels. Only by educating ourselves and acting together can we begin to challenge and overcome the negative power of the medical/professional view of disability.
Understanding the Medical/Professional View of Disability: The Patient Needs Fixing Part 2 of a three-part training series designed to advance disability rights, in which participants learn to recognize and respond to the competing views of disability within society. The medical/professional view sees disability as merely a physical problem that needs to be fixed by experts. People with disabilities are labeled as patients, broken, sick or objects to be studied. Disability is something to be overcome, to be improved on through the action of experts. This view gives all the power to experts: They make the decisions; they are in control. Using this program, participants explore the thousand-year history and continuing influence of this medical/professional view of disability. Participants build skills to notice this viewpoint in their lives, name its power and negative influence and practice confronting and overcoming it. Through discussion, video and role-play, participants learn to recognize and address this view in everyday situations: schools, hospitals, social service settings and home life. Participants also discuss replacing the ill effects of this view with dignity, empowerment and social change. Available in editions tailored for three separate audiences: self-advocates, professionals and parents. Contact Advocating Change Together by e-mail at act@selfadvocacy.org or visit our Web site at www.selfadvocacy.org and click on “Tools for Change.”
Prepare by finding someone wants to play the emcee—someone who likes to ham it up. Give each table two sheets of paper, one with a large “T” and one with a large “F.” Say, “As a way to wrap up today, we have the opportunity to be in a quiz show. And we’re thrilled to have with us the renowned celebrity, ______________. As you know, s/he will read a few statements from a card. After you hear each statement, you’ll have a minute to talk amongst your table and decide whether the viewpoint is true or false. Then, when I give the signal, hold up your answer—‘T’ for ‘true’ or ‘F’ for ‘false.’ Let’s try one example all together. Here’s the statement: “(Make something up that has an obvious answer).” Now you have 60 seconds to decide if it’s true or false.” Allow time, then ask for answers. Turn it over to the emcee. The emcee reads statements, allows one minute and calls for answers. After each “round,” give the answer and allow discussion/dissention/dialogue. The facilitator can help the emcee by keeping time and score. Players at the winning table each get a small bag of prizes, which they are invited to distribute among the other tables. True/False Questions:
Answer
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