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REVOLUTIONARY COMMON SENSE LIBRARY
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–Benevolent Services–
–Dangerous Messages–
Revolutionary Common Sense by Kathie Snow
www.disabilityisnatural.com
Today’s service system attempts to address the “problems” of children and adults with developmental disabilities via interventions, treatments, therapies, special programs, and other services and entitlements. But hidden within all this “help” are unspoken messages that harm those who receive the services. The messages vary, depending on the program or service, but they all share one commonality: they send “messages of incompetence” to children and adults with disabilities and family members. Under the cloak of benevolence, the service system presumes that medical personnel, educators, therapists, service coordinators, and others in the field have superior knowledge and expertise about the needs of children and adults with disabilities. But this is really a long-standing myth. People with disabilities and family members are the true experts!
In early intervention, the spoken message is: “Your baby is at such
risk, he is entitled to the special help of professionals and services
in order to minimize the effect of developmental delays and help him reach
his potential.” The
unspoken message is: “Loving your baby, playing with him, and helping
him learn—just like all parents do—is not enough. You’re
just a parent and your child needs more than you can give him. And even if
you have successfully raised other children, you still don’t have the
knowledge or skills to handle this situation.” And we, the people who
know our children best, believe the myth.
In early childhood education, the spoken message is: “Your three, four,
or five-year-old child with a disability is so far behind and so unprepared,
she is entitled to special ed preschool where trained professionals will help
her get ready for public school. Further, with enough help, the child’s
disability can be ameliorated in special ed preschool and maybe she won’t
need special ed services by the time she reaches kindergarten.”
The unspoken message for stay-at-home moms is: “Keeping your child at home
is not an appropriate option. You don’t have the skills to maximize your
child’s development, nor are you competent to meet your child’s special
educational needs. Sending your son or daughter to the neighborhood preschool
two or three days a week is also not appropriate. Regular preschools are not
competent to handle your child’s needs; only we have the skills to meet
the needs of children with disabilities.”
The unspoken message for working moms is: “The day care
center cannot provide all the special care and education your child needs,
even if it’s
the place where your other children have been (or are being cared for),
and even if the center’s employees know your child because they’ve
been caring for him for a long time. The day care staffers have not been
trained in how to help children with developmental disabilities. Your child
needs to attend the special ed preschool for part of the day, and then
we can bus your young child to the day care center.” And parents,
along with experienced day care/preschool staff, believe the myth.
In special education, the spoken message is: “Because children
with disabilities have so many problems and special needs, and because
they are so different from typical children, they need specialized help
from specially trained teachers in special settings. The unspoken message is: “Children
with disabilities are not competent to be in regular classes. Furthermore,
regular education teachers are not competent to teach children with disabilities,
the regular educational environment is not appropriate, and even the combined
wisdom of parents and educators is not enough to meet the child’s
unique needs.” And experienced
parents, along with educators, believe the myth.
In the lives of young adults, the spoken message is: “Because of their
disabilities, teenagers are entitled to receive help from the special ed system
and the voc-rehab agency. These experts will determine what kind of careers are
appropriate and will place students with disabilities in part-time jobs (most
likely without pay) in the hope they’ll be successful in entry-level positions.
Students who are not employable at the present time will attend special programs
to help them get ready for a real job (one of these days).”
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The unspoken message is: “Your teenager is not competent to find
a job or determine her future on her own. Even if she has the support of
her family and even if she has dreams, she needs the expertise of professionals
who will determine what she’s capable of doing.” And parents,
along with their budding young adult children, believe the myth.
The same dilemma faces many adults with disabilities: they wait in
line (often, for years) for a vocational counselor to “place” them
in an “appropriate” job (appropriate
from the system’s perspective), because it’s assumed
a person with a disability is incompetent to get a job on his own
(the way most adults get jobs!).
In the area of living arrangements, the spoken message to adults
with disabilities is: “You’re entitled to habilitation services, so we’ll help
you learn how to live in the community.” The unspoken
message is: “You’re
not capable of living on your own or finding your own supports in the community,
so we’ll decide where and how you should live (in a group home or some
other facility that may or may not be where you want to live). Oh, and by the
way, we’ll tell you if and when we think you’re ready to live on
your own.”
And for individuals with disabilities of all ages, the spoken message of therapies and other interventions is: “We’re going to help you learn to walk,
talk, feed yourself, control your behavior, and achieve a variety of functional
skills.” The unspoken message is: “You are not-ok the way you are,
and we’re going to work on you—with or without your cooperation—until
you can be the way we think you should be.”
With the best of intentions, good people work in the service
system and provide “help.” But
the underlying premise of the service system is flawed: it’s based on the
paradigm that the “problem” is within the person with the disability.
Thus, even good people can inadvertently do harmful things, such as sending negative
messages that create dependency and erode self-determination, autonomy, self-reliance,
and more.
In truth, the “problem” of disability does not reside in people with
disabilities. The real problem rests in societal attitudes and social policies
that define people with disabilities as “abnormal” individuals who
(pick one or more): need to be made “whole” or be “fixed” via
therapies and other interventions; are incompetent; are unable to succeed without
expert help; are not expected to live “normal” lives; and...(insert
your own experiences).
Parents and people with disabilities (again, with the best
of intentions) step into the jaws of the service system, and
unintentionally relinquish their autonomy, free will, and choice,
and accept the notion that others know best. In most cases,
they end up becoming angry and frustrated, and uncomfortable
with the paternalism of the system and the lack of real assistance.
Worse, however, is the devastating damage done to the hearts
and minds of children and adults with disabilities when the
unspoken messages of today’s service system tell them, over and
over and over again, “You are not ok.”
If we want children and adults with disabilities to lead
natural, ordinary, and fulfilling lives, we must be aware
of the hidden messages of today’s conventional
wisdom, and we must reject the philosophies that marginalize people with disabilities
and family members. When we recognize disability is a natural part of life, we’ll
know success and inclusion for people with disabilities will not come from the
system and its efforts to “normalize” people. We’ll understand
success and inclusion arise when individuals with disabilities live real lives
in their communities, with help from natural supports and generic services.
Today’s social policies have the best of intentions: to help people with
disabilities. But the system is misdirected: it’s not the bodies and brains
of people with disabilities that need to be changed—it’s the attitudes
and perspectives of society (that’s us) which
need to change.
©2001-06 Kathie Snow, www.disabilityisnatural.com. Permission is granted for non-commercial use of this article: you may print this web page and photocopy it to share with others. Click here to download the PDF handout version of the article. As a courtesy, please tell me (kathie@disabilityisnatural.com) how/when you use it. Do not violate copyright laws: request permission before reprinting or republishing in newsletters, on websites, or in other media. Clip art from Adobe In-Design.
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Our words reflect the way we think, so let's get rid of descriptors like "handicapped, physically disabled, mentally retarded, learning disabled" and other words that focus on the condition instead of the person. People First Language promotes dignity and respect for all!
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