"Rewriting the Myths, Redefining the Realities"
I began school in the fall of 1947 in Troy,
Missouri, a small rural community north of St. Louis. As nearly as I
could determine I was the only child in the class of 50 who was a
person with a disability. I have been blind since birth. In the next
several years a few children with disabilities joined the student
body at my school. There was a girl who used a wheelchair, two
children who we would now recognize as having developmental
disabilities, a boy with a heart condition, and a girl with juvenile
diabetes. In the half century since I was a child, the educational
and societal understanding of what constitutes a person with a
disability has changed dramatically. Persons with disabilities have
made great progress toward full acceptance and participation in our
schools, economy, and political institutions, but this progress has
brought a greater awareness of how large the disability community
is. Many who were not identified as persons with disabilities are,
in today's world, clearly defined as a person with a disabling
condition, and many of them are struggling.
A half century ago many persons with disabilities were
institutionalized. My grandmother spoke of a neighbor who "went
crazy." She was taken to the State Mental Hospital in Fulton, where
she lived out the rest of her life. An adolescent who could not read
committed petty crimes and was sentenced to the Youth Reformatory in
Booneville. A foster child who was raised by my grandmother was a
drifter. Occasionally he came to visit. He called himself a "bum"
and we felt sorry for him. We now understand all of these
individuals to be persons with disabilities. In the past they were
hidden in our institutions, prisons, or among the more honorable
class of the homeless created by the Great Depression, but now they
are less hidden and present us with a practical and moral challenge.
Estimates suggest that from one-third to one-half of the current
homeless population are persons with disabilities. Professionals
working in the criminal justice system have told me that from 10% to
80% of today's inmates have disabilities. As we age, we develop a
variety of disabilities. Medical science is saving the lives of
newborn children, persons who are traumatically injured, and older
persons who previously would have died. In many cases these
individuals live with serious disabling conditions. There are new or
previously undiagnosed people living with disabilities including
crack babies, those born with fetal alcohol syndrome, and persons
with AIDS. We are just learning about Attention Deficit Disorder,
(ADD). Approximately ten percent of our children are diagnosed with
a disability, but only two to three percent of them have traditional
disabling conditions. Another group of persons suffer severe
reactions to chemicals in the environment. How do we respond to this
wide array of conditions that until recently were not even known?
They place strains on our human services network, financial
resources, and capacity to accept and understand the limitations
with which others must live their lives.
The response that is needed is difficult. In many cases it will be
expensive. We are being asked to consider and have compassion for
persons who may be hard to understand and harder still to care
about. Yet it may be costly to ignore them. People with mental
illness can be dangerous to themselves and occasionally to others,
when they live on the streets without adequate support services. We
need community programs that are adequately funded to provide the
support that these suffering persons require. The medications that
keep persons with AIDS alive are expensive, but should they be left
to die? Elders need care to remain independent. Children with
learning disabilities, behavioral disorders and attention disorders
need skilled teachers to help them develop to their full potential.
Persons with developmental disabilities need the support that will
permit them to live a meaningful life. Providing for all these needs
is difficult, especially now when our economy is doing poorly and
our government sector is in crisis; yet we trust that things will
improve, and we need to be prepared to face-up to the challenge
presented by the millions of Americans who need our help.
A few years ago a young man went on a shooting binge in Denver.
Before he took his own life, he killed a policeman with a young
family. As the story emerged, we learned that this destructive man
grew up in a high achieving family. High expectations were placed on
him, but he could not meet them. He could not learn to read. A
well-meaning adult relative tried to help him learn. The relative
spent a year working with this boy, but he did not learn to read. He
became progressively more frustrated and alienated, until he
destroyed his own and another man's life.
The pain that exists in the world inhabited by this new disability
community amazes me. They are not the successful blind man or the
accomplished deaf woman. They do not work, or serve on a committee.
They are among the most impoverished and alienated in our society
and they are our parents, brothers and sisters, and children. They
are not strangers. They are our family.
Copyright 2002 A&H Publishing Corporation