2001 Conference Proceedings

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EVOLVING CONCEPTS CONCERNING DISABILITY, AUGMENTATIVE COMMUNICATION AND EMPLOYMENT IN THE U.S.

Bruce Baker, Robert Conti, and Carole Krezman

Ten years ago in the United States, there were very few employment success stories about people who relied on augmentative communication. Because there were so few success stories, a conference was organized to tell about them. Today, the situation is better. There are several hundred people with significant speech and multiple disabilities (SSMD) in part or full-time community-based, gainful employment. Because there are hundreds of thousands of individuals with SSMD who would work gainfully, several hundred seems like a very small number. That number, however, is growing every month. More and more people with SSMD and use AAC are attending universities, and many others are pursuing courses at technical schools.

Many other individuals with significant cognitive impairments who are unable to speak but can learn hand signs are working in a variety of supported-employment situations including janitorial services, food services, and laundry services. People with SSMD are becoming more visible across American society. It is no longer unusual to see a person with an augmentative communication device in grocery stores, at sports events, in shopping malls, or presenting at academic conferences.

Employment for people with SSMD may have received more attention in the United States and in other countries because of certain cultural phenomena. For instance, in many countries, unemployment is viewed as a governmental responsibility. In the United States, unemployment is viewed more as personal than societal failure. It is difficult in the United States to construct a sense of self worth without a job.

Employment for people with SSMD has become a major issue for the AAC community in North America. A concern with employment is a natural outgrowth of the disability movement stemming from Berkeley, California in the late 1960's. Often called "Independent Living" or the "Independence Model," people in Berkeley developed a view of disability which described the "problem" as existing in the environment rather than within the individual with disabilities. Because people cannot jump over or walk up high walls, society developed stairs, elevators, and escalators. Nobody said, "People are disabled. They can't jump from floor to floor." Steps were designed by architects to enable people to walk easily from floor to floor. The problem of gravity, the problem of different elevations was not viewed as a disability within an individual; it was viewed as an environmental issue to be solved through design and collective action. The Independent Living movement thus views "stairs" as a partial solution to an environmental problem. Ramps for people using wheelchairs are not a special accommodations for a deficit in the individual's ability to climb stairs, but are viewed as corrections to deficits in the environment, no different from steps or doorways. Escalators were made as a convenience for some people. Elevators are a convenience for people as well. That one person finds elevators convenient for his or her wheelchair is viewed as an environmental, not a personal issue.

The Independence Model labels older thinking as the Deficit Model. The Deficit Model finds the problem to be in the individual and seeks to correct the problem by changing the individual. Closely allied to the Deficit Model is the Medical Model. It, too, views the deficit as resident in the individual and sponsors ideas of "care" and "protection." Along with care and protection one finds isolation, "special rooms," "special buildings," "special needs," "special personnel" - physicians, nurses, therapists, and of course, sponsors "dependence." The focus is on fixing the individual.

In the Independent Living Model, the environment is altered to support the independence or interdependence of all people. Assistive technology is viewed as a part of the universal environment and interdependence is understood as a universal fact.

Perhaps owing to the U.S. psychology, as referenced earlier, all people are viewed in the Independent Living Model as employed, if they have achieved their maximum level of independence. Though hard to define, Achieving Independence is a very labor intensive activity for people with severe disabilities. If an individual is living in a nursing home, a large sum of government money is often dispersed to maintain the individual and the nursing home environment. If a person, though non-speaking can achieve sufficient independence to manage his or her own personal care attendants and live in a group-home setting, the amount of government funding required for the nursing home is cut almost in half with the same quality of care as well as enhanced quality of life. Achieving an enhanced quality of life for one's self at the same time as reducing government expenses, often by tens of thousands of dollars, is a significant public service and can be defined as "work."

In most industrialized countries, there exists a disability culture as surely as there are other cultural subsets defined by ethnic group, race, profession, marital status, sexual orientation, or religion. The disability culture in the United States is currently not conscious that there exists a subset in the disability culture of people with severe communication disabilities. It has been the role of the International Society for Augmentative and Alternative Communication (ISAAC) to make the professional community aware of the profound affects of severe communication disability. I propose that there needs to be an outreach to the rest of the disability community to educate it about the significance of communication disability. As a part of the general public education work of ISAAC, the development of an employment model that includes the achievement of independence, I believe, should be part of its mission.

As people, who rely on augmentative communication systems achieve greater levels of education, they will be able to take their role in the workforce.

A significant factor in the evolution of employment concepts in the augmentative communication community has been the annual Pittsburgh Employment Conference for Augmented Communicators (PEC). Over the past eight years, annual conferences have seen a growth both in the rise of a community consciousness among augmented communicators. The focus of the annual PEC began simply to raise employment as an issue across a wide range of stakeholders in the field of augmentative communication. It succeeded not only in giving focus to the employment issue for people with SSMD, but brought individuals with SSMD to a substantial national conference every year where their input became the dominant feature of the conference.

Augmented communicators from across the United States and Europe now who had never met one another have had the all important one to one contact necessary to build a community. ACOLUG (Augmentative Communication List Serve On-Line Group) hosted by the University Affiliated Program on Disabilities (UAP) at Temple University has served as a communication medium for the community of augmented communicators around the world.

The social capital needed to develop a community has come to the community of augmented communicators through the medium of conferences on employment and through the internet. Disability conferences need to be aware that they must invite as equal partners those members of the disability community whom they serve. The South African motto "Nothing about us without us" certainly a needed maxim in the field of augmentative communication.


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