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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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