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From Charity to Integration: A New Future for Persons with Disabilities
by Edward V. Roberts
Not so long ago, the prevailing attitude in the United States was to treat persons with disabilities as objects of charity. Organization after organization sprang up to "protect" various disability groups. These organizations were well-intentioned, but their emphasis on charity produced fear and segregation. There is a fundamental and basic flaw in treating any person as an object of charity. In the case of persons with disabilities, the consequences of such a characterization have been counterproductive. In order to enhance fundraising efforts, some organizations portrayed persons with disabilities in the mass media as weak and helpless. By doing this the well-intentioned organizations reinforced a negative social attitude toward disability.
The existence of charities, furthermore, provided the major institutions in our society with a convenient excuse for not meeting the real needs of persons with disabilities. Government, the educational system, and business were able to avoid any meaningful responsibility toward persons with disabilities by simply deferring to the charities.
In the past decade, fundamental changes began to take place. The starting point for this change really began in the middle to late 1960's, with the black civil rights movement in the United States.
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The parallels between America's treatment of blacks and persons with disabilities were readily apparent. Separate education made no sense, whether it was based on color or disability. The denial of employment opportunity made no sense, whether it was based on color or disability. The refusal of the dominant culture to allow persons to become part of the community made no sense, whether it was based on color or disability. Simply stated, segregation on any basis, made no sense.
In the late 1960's and early 1970's, persons with disabilities began to take control of their own lives. Our philosophical premise was simple: We have a fundamental human right to equal opportunity to participate in every aspect of our society.
In order to secure this right, we had to free people with disabilities from a patronizing and segregating society. The process of desegration has gained considerable momentum in the past few years.
One of our major tasks has been to change the general public's attitudes toward disability. As I mentioned earlier, American society tended to view persons with disabilities as weak, helpless, dependent, asexual, and oftentimes as intellectually inferior. This attitude in turn fostered a negative self-image among persons with disabilities.
In the past decade, we have done much to dispel the myth that persons with disabilities are weak or sick. Persons with disabilities have participated and succeeded in every aspect of our society. Yet, there remains a great deal of ignorance in our society about people with disabilities. I believe that one of our
― 3 ―greatest responsibilites is to educate our society about the strengths of persons with disabilities.
We need, for example, to educate the mass media which all too often runs stories about a helpless, poor, handicapped person. That type of story is simply misleading and deceptive. We must provide the media with information about persons with disabilities who are successful doctors, lawyers, auto mechanics, computer programmers, etc. We need to help the general public understand that disability in and of itself is not devastating, and that a person who has a disability can live an active and rewarding life. We must do this not only for ourselves, so that we can gain the opportunities to fully participate in society, but also for everyone else. A Swedish study estimated that 60% to 70% of the general public will suffer major mobility-impairing disabilities during their lifetime. We need to help the people who will one day be disabled to come to terms with their fears and stereotypes of disability.
Changing attitudes is only one part of our task; we must also work to insure institutional changes to correct the inequities in our laws and practices that effectively discriminate against people with disabilities and take away their hope and opportunity. The U.S. federal government has, in the last decade, passed a series of laws which in the words of the then Secretary of Health, Education and Welfare "reflect a national commitment to end discrimination on the basis of handicap . . . and to bring handicapped persons into the mainstream of the American life."
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Two of these laws prohibit discrimination in preschool, elementary, and secondary education. The laws require (1) that a student with a disability, no matter how severe, be provided with a free appropriate education (2) that students with disabilities be educated with non-disabled studnets to the MAXIMUM EXTENT FEASIBLE and (3) that evaluation procedures be improved in order to avoid the inappropriate education that results from the misclassification of students. These laws also establish safeguards to enable parents to influence the evaluation and placement of their children.
The importance of an integrated education cannot be emphasized enough. When I was 14 years of age and an aspiring athlete, I became severely disabled. I remember the doctors telling my mother that I would be nothing more than a vegetable.
Fortunately, our school system in Burlingame, California did not have separate schools for students with disabilities. The school system had to figure out a way to get me from my bed to rebegin my education. I had to overcome the fear of going out and having people stare at me because I was different.
I also learned that I had choices, and that to get anywhere, I would have to learn to take risks.
One of the most obvious problems with patronization and segregation is that is shelters too many people with disabilities from learning to take the risks that lead to personal growth.
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I remember when I was at the University of California and I fell in love, it became incredibly inconvenient to have to take an attendant with me. I had been told for years that I could not drive a power wheelchair because I was so severely disabled. But, I decided to take the risk because I had a lot at stake. I crashed in the beginning, but then I learned.
The federal government in the United States has also made it clear that discrimination in employment against persons with disabilities must end.
Federal law, when fully implemented, will open up hundreds of thousands of jobs to persons with disabilities.
The key provision of these laws is the concept of reasonable accommodation. As we all know work sites were historically designed by and for a population without disabilities and thus denied employment opportunities to persons with disabilities.
In the future, employers will have to make reasonable accommodations to enable a disabled person who seeks an employment opportunity.
This concept is, perhaps, best illustrated by example. In the case of a deaf employee, it may mean the purchase of a TTY device, which is a teletype device such as those used by Western Union. In the case of a partially blind employee, reasonable accommodation may mean the purchase of a reading device. If an employee is in a wheelchair, the employer may have to widen the doors to accommodate
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These new laws against employment discrimination, thus, offer real hope and opportunity. For years, persons with disabilities could only look forward to a life, which in an economic sense, was entirely dependent on the welfare system.
Over the past couple of years we have begun to work with business, labor and government to create employment opportunity for persons with disabilities. For example, in the San Francisco Bay Area, a number of labor unions have integrated disabled persons into their apprenticeship programs. Giant corporations, such as Standard Oil, IBM, and Levi Strauss, in cooperation with the state rehabilitation program and an independent living program, are training and hiring severely disabled persons as computer programmers.
In addition to integrating our schools and work force, we must also insure that persons with disabilities can fully participate in all aspects of our society. For too many years, persons with disabilities were isolated from the mainstream of American society. Many of us were needlessly institutionalized; others were totally dependent on family or friends.
In the early seventies, we began to develop the concept of independent living. The first step toward independent living was the development of in-home-supportive services.
Instead of being dependent upon a nurse or family member, we began to hire, train and, sometimes, fire our own attendants.
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We learned invaluable lessons and skills.
For example, I have probably hired and trained over 100 personal assistants in my 25 years as a person with a disability. This experience has taught me to be a good personnel manager. I have learned how to recognize people that have the right talents and qualifications for my needs.
I have learned the art of constructing budgets which will maximize my return. I have learned to understand my needs and to communicate those neeeds to the persons I hire.
In California, we joined forces with senior citizen groups to convince the state legislature that it was far more humane and cost-effective to fund in-home-supportive services than programs which perpetuated institutionalization.
One of the key elements of the program in California is that it places the responsibility on the person with the disability for the management of the program. The individual has the right to hire and fire attendants and to manage the money.
We have, thus, developed a program which not only enhances our right to live independently, but also eliminates needless levels of beauracracy. We have also developed one of the most effective job programs in the state. Thousands of persons who were previously unemployed are now working as attendants.
Our second major initiative in the early seventies was the development of independent living centers. These centers
― 8 ―provide the range of services that a person with a disability needs in order to effectively participate in society. The centers which bring together persons of various disabilities, provide services such as peer counseling, job training and counseling, housing and attendant referral, sex counseling, legal assistance and transportation and recreation programs.
The first center we created was the Center for Independent Living in Berkeley, California. It now serves as an international model. In Title VII of 1978 Amendments to the Rehabilitation Act, the United States Congress recognized the need for independent living centers. Title VII requires the establishment of independent living centers throughout the United States. Although it will be some time before this act is fully implemented, it offers new hope to millions of persons with disabilities throughout the United States in terms of both social and economic independence.
As I noted earlier, the process of desegregating a society is neither quick nor easy. We still have a long way to go in making our public transportation systems accessible to persons with limited mobility. We also must make more of our buildings and housing accessible. As in the past, we will face stiff opposition. We will be confronted with so-called cost-efficiency computations to "prove" that segregated systems are less expensive.
We know, however, that this type of argument cannot stand close analysis. We know that a dollar figure cannot be placed
― 9 ―on the increase in self-esteem which flows from living in an integrated society. Most importantly, we know that persons with disabilities will no longer accept a segregated society.
Thus, as we plan for the next decade, as we develop programs, we can confidently predict that persons with disabilities will move into the mainstream of American society.