I am new to this list. But I feel I have something to
contribute on the subject of brain injury. I don't
know quite how that relates to the term "cognitive
impairment".
I am a brain injury survivor, from an accident in
1992.
While I can see some attractive elements within the
UPIAS definition of disability, I nevertheless have
significant reservations about the definition of
impairment. To accept this definition would imply that
I accept that my brain - a huge part of myself - is
“defective”. I certainly accept that it is different,
but I am not sure that I would want to automatically
concede that this difference should be negatively
valued. I would much prefer a definition of impairment
along the lines of the following: impairment simply
refers to a form of human variation, which manifests
itself in physical, sensory, cognitive or intellectual
differences. If you must, you could add that these
differences are often negatively valued.
This would acknowledge that many people would consider
negatively value my impairment but I do not
necessarily agree. I think this type of definition
would be more acceptable to many brain injury
survivors, and other disabled people who
are developing disability pride.
Another point that I would like to raise is that
people using the social model hardly ever criticize
the process of acute care. But for brain injury
survivors, this is a particularly important
human rights area because some survivors receive
inadequate treatment in acute care. Of course, I am
not denying that many people (including myself) owe
their lives to medical intervention in the acute care
stage, but I am suggesting that the area deserves more
critical scrutiny than it currently receives.
One of the areas that could be investigated is the
failure of medical personnel to diagnose and treat
some forms of ABI because of their emphasis on
identifying and responding to orthopedic injuries.
Also, families of people in a coma are routinely given
pessimistic predictions suggesting that their loved
one will not survive, or that they will never work
again. Within a few hours of my accident, when the
future was still incredibly uncertain, my family was
told both of these things were likely. Another problem
in the acute stage is that families are often not
provided with adequate information to understand what
is going on in the Intensive Care Unit. Also, once a
person has been given the label “vegetative state” -
and this can be as soon as three or four weeks after a
trauma - any efforts to rehabilitate the person end
and he or she is moved into an area where they
receive less intensive treatment. For families who
haven’t given up on their loved ones at this point,
this can be a harrowing experience. The treatment of
brain injury survivors in this state is a particularly
significant human rights issue for disabled people
given that a recent medical survey found that such the
diagnosis of “vegetative state” was incorrect in 37%
of cases (Childs et al quoted in Shiel and Wilson
1998:809). These are areas that deserve critical
scrutiny from disability activists and advocates of
the social model.
Even if you are lucky enough to escape the label
“vegetative state”, your family may still be pressured
into agreeing to have you put into an aged care home.
Over the last few weeks, I rang nursing homes in my
city (Brisbane, Australia) to find out how many of
them had young people with ABI living in their
residences. About one-third openly acknowledged that
this was the case. One nursing home said that they had
a girl who was 17 with an ABI. She is sent to a
special school during the day and an aged care home at
night. Why does this occur? I would suggest that it
occurs because shortly after a brain injury, at an
incredibly stressful time in the lives of family
members, when they are very much still searching for
information and support to deal with what has
happened, a great deal of pressure is put on family
members to agree to the plans of health professionals
to segregate us. If you don’t have a family that will
advocate on your behalf, there may be little
resistance to your placement in an inappropriate
environment like an aged care home.
Even if you make it through to life in the community,
you are often abandoned. No services, no support. This
has been my experience too. Over a long period of
time, you learn about the services that are available,
but these services are usually fragmented, inadequate
and inefficient. People who provide such services
often have very little understanding of ABI and the
narrow definitions of eligibility mean that you are
usually unable to receive any services. In all of the
time since my accident, despite threats of
institutionalisation, suicide attempts, constant
medication and multiple hospitalisations, I’ve never
had any lifestyle support. Never. Not any. And the
situation is the same for nearly all the survivors I
know.
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