Dear Suzanne,
As the spouse of someone with an acquired brain injury, let me reinforce
what you've found -- unfortunately there has been little research so far
that isn't clinical. Even clinical services are limited, as people with
severe injuries often didn't survive in the past, and "mild" brain injuries
weren't being recognized.
The tensions you describe are very real, and often tough for those active in
the independent living movement to recognize and deal with. When Jonathan
first came home after a year out-of-state in a rehabilitation facility I was
on the board of the local independent living center. The director kept
saying to me "tell Jonathan to give us a call", and to Jonathan, "give us a
call if you want to make an appointment to come in." The philosophy that
contact should be self-directed, not directed by agency staff, doesn't
acknowledge the cognitive difficulties someone with an ABI may have with
memory, initiation, etc. And family members too may either be overwhelmed
with other responsibilities and/or not know about independent living
programs and/or also believe that people should be active in fostering their
own independence (count me in for the first and last, overwhelmed and torn
by my own political beliefs). I finally said to the director "look, in
order for Jon to become more independent in the long run, you may need to
modify your standard-operating-procedure and reach out to him, you call him
and ask him if he would like to come in." Jonathan recently served on the
Center's board, and I think enjoyed seeing people but also felt confused and
frustrated -- AND his difficulties initiating activity often mean that he
knows he wants or needs to do something, but can't quite get started. In
this case, Jon could ask for clarification, remind people that he needs
things written down in his calendar -- he could, but he usually doesn't.
(And again, I have to choose my "battles" -- the irony is that if we were on
Medicaid (need based health program) Jon would have a case manager. Thank
God we're not on Medicaid, but as a result Jon has me as his "case manager"
!!
So -- thank you for the research you are doing, I hope you inspire others,
and if there's anything you want to discuss further please contact me. And
if you want to communicate with Jon I can give you contact information
(again a dilemma, with Jon's permission I often ask people to let me know if
they have sent Jon a message, then I know to remind Jon to look at his
email.....the tension between facilitation and paternalism...)
Lynn S.
Lynn Schlesinger, Ph.D.
Assistant Professor
Department of Sociology & Criminal Justice
Plattsburgh State University of New York
101 Broad Street
Plattsburgh, NY 12901
518-564-3004 (work)
518-564-3333 (fax)
518-562-3431 (home)
email: [log in to unmask]
----- Original Message -----
From: "Suzanne Snead" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, June 06, 2003 7:51 PM
Subject: Disability theory and ABI
> Hello!
>
> I am a third year postgrad at the Uni of Newcastle in Australia, and new
to
> this list. My thesis concerns the awareness and use of power by outreach
> staff with clients with acquired brain injury. In my literature review, I
> have come to know various writings regarding the social model of
disability,
> and for the most part, I find it very fascinating, relevant, and
refreshing.
> However, I am frustrated by the lack of literature that deals specifically
> with this model in ABI contexts. I agree with the criticisms that
impairment
> must be a part of the social model, because specific impairment effects
have
> implications for the nature of disability experience. I think it is very
> important to investigate this with ABI, since often impairment effects of
> ABI have the greatest impact in social relations, due to behavioral issues
> and cognitive/processing deficits. I am also concerned with applying
> self-determination philosophies to ABI for instances when the impairments
> compromise the ability for an individual with ABI to function autonomously
> and in a truly self-determined manner. I am interested in the tension
> between client choice and preferrence, and the duty of care, particulary
> when a client choice or preferrence (or spontanous behavior) stands in
> opposition to what is socially acceptable. I feel this is made even more
> complicated when the individual with ABI has a goal such as 'to make
> friends' or meet more people, requiring that they observe particular
social
> and relationship 'norms' just as we all do, for relationships to be formed
> and maintained, and the constraints to individual expression and choices
> (such as how a person wants to groom or not groom themselves, or the
choice
> of language they use) that may occur when support personal attempt social
> skill training that will 'attract' friends rather than repel people.
>
> I hope that makes sense to someone. Is anyone else out there looking at
this
> issues as they specifically relate to ABI and from the social model
> perspective? Any lit recommendations? It seems the ABI lit I find comes
from
> a "treatment" stance, and the social model lit has no mention of ABI, and
> often seems focused on physical impairment.
>
> Thanks!
> -Suzanne
> ***************************************
> Suzanne Leigh Snead, M.S.
> Ph.D. Candidate
> School of Social Sciences
> GP Building, Third Level
> University of Newcastle
> Callaghan, NSW 2308
> AUSTRALIA
> 61-2-4961-4650
> [log in to unmask]
>
> If we only know how to communicate with violence,
> Then it is time to learn a new language.
>
> ________________End of message______________________
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