"I am convinced that we are making the most profound
social change that our society has ever known."
– Ed Roberts
Continuing Struggles
The Problem and Importance of Language
Many argue that attitudes and stereotypes are the real disabilities. To help get beyond the old stereotypes of disability as simply a moral or medical issue, it is important to consider the words we use to describe disability.
Jargon used by service providers and other professionals is deficiency-oriented: it places the disability, usually a negative view of disability, before the person. The following excerpt from an article in People magazine (December 1988) about Cambridge physicist Stephen Hawking illustrates this point:
"Wrecked by Lou Gehrigs's Disease, the body of the greatest cosmic thinker since Einstein huddles helplessly in a wheelchair … What's left of Stephen Hawking, the physical man, is a benign head ripped by a drooling grin and a body collapsed into a pile of wasted limbs, ravaged by ALS …"
Such language is insensitive and judgmental, and implies deep-seated attitudes toward individuals with disabilities.
ADAPT
ADAPT (American Disabled for Attendant Programs Today, formerly American Disabled for Accessible Public Transit) represents the militant side of the disability rights movement. In direct opposition to persons with disabilities accepting charity, ADAPT members have engaged in numerous protests, demonstrations, marches, and other forms of civil disobedience; and filed lawsuits to draw attention to accessibility issues and community living.
After passage of the Americans with Disabilities Act (ADA) in 1990, ADAPT changed its focus from public transit to the nursing home industry, believing that the billions of dollars generated by the industry should be appropriated instead for personal care assistants.
In taking on the nursing home industry, ADAPT shifted its advocacy efforts to emphasize the need for personal assistance services (PAS). Personal assistants help persons with disabilities complete the tasks of daily living that they cannot do on their own. As is true with many other accommodations, PAS can provide a necessary link to independent living.
ADAPT members have noted that these services are less expensive than nursing homes or other institutions, and people are healthier when they can live in the community. This conflict, however, is a reminder that the medical model is still prevalent.
ADAPT Demonstration in Chicago
Man: Talk to the elevator people! Talk to the elevator people! They won't let us up! We don't go up, you don't go up!
Woman to old man: Shame on you!
Old man: I just… have an appointment, I got an appointment!
Man: Hold on, hold on! Sir, turn loose. Wait a minute.
Woman to old man: Is your appointment really worth this much to you? Are you crazy?
Old man: How can I make my appointment…?
Home Ownership
Starting in the 1980s, a new way of thinking emerged regarding community living for persons with developmental disabilities. After years of providing services for individuals based on medical or behavioral program requirements, or facility needs, we looked to the individuals themselves and asked what services they wanted.
This new "person-centered" approach looks at the person first, and then builds in supports to meet the individual's needs. Instead of fitting people into programs, supports are developed around the individual wherever he or she may live or work. Home ownership then became a viable option for people with developmental disabilities.
Home ownership options may include: single-family houses, duplexes, condominiums, and housing cooperatives. In some cases, individuals with developmental disabilities live with other people with disabilities, or in mixed, integrated households. Some people may live alone, while other people may receive support from licensed care providers or other professionals. Some advantages experienced by those who now live in consumer-controlled housing include:
Personal Control: People have greater choice in selecting the living arrangements that are most appropriate to their needs and self reliance is promoted.
Permanency: The risk of being forced to change residences by an agency is reduced. And those who live in their own homes have greater freedom in choosing their service providers.
Integration: Persons who own or control their own homes have greater choice in deciding where and with whom to live.
Location: People who purchase their own homes can choose where they live based on their own desires and needs, rather than those of the service provider.
Freedom: People who live in their own homes can make their own rules. Privacy is much more easily achieved in one's own home.
The American Dream: Home ownership, referred to as a "home of your own," is a desired objective for many Americans. It is socially and economically desirable and beneficial to own a home.
Equity: People who own their own homes can build equity and increase their financial resources.
Changing Social Status
Stereotypes and misconceptions about people with disabilities continue to be promoted in the media through visual images and language. Numerous appeals to pity people with disabilities appear on telethons and other fund drives. The image of the helpless child who needs to be "cured" rather than accepted by society is the most glaring. The media more often refers to "handicapped people" or "the retarded" rather than persons with disabilities, focusing on their differences rather than their similarities with the rest of society.
Paul Longmore, professor of History at San Francisco State University since 1992 and DIrector of the Institute on Disability in 1996, also had a disability. Longmore was a pioneer in disability history and said, "Prejudice is a far greater problem than any impairment; discrimination is a bigger obstacle to overcome than any disability."
People with disabilities are arguing more vigorously than ever before to change their social status, strongly asserting that they must live their lives according to a set of values that is derived from the disability experience.
"What they prize," said Dr. Longmore," is not self-sufficiency but self-determination; not independence, but interdependence; not functional separateness, but personal connection; not physical autonomy, but human community."
The values identified by Paul Longmore are reflected in the personal stories of people with disabilities.
The following individuals have adopted these values and achieved their dreams of independent living…
