I would hazard a guess (just a guess) that the aquired/ congenital issue
will not be the only difficulty. I would suggest that the diagnosis of MS can
be seen as a relief in that it explains and legitimises some otherwise very
vague and stigmatised characteristics.
I think one would need to tread warily with any threat of taking away the
comfort of 'knowing'. By knowing, i mean the pathologising, and
categorising of symptoms. It is a great comfort knowing your experiences
of an illness are not peculiar to you. Imagination or psychosomatics are
not to blame, these are real symptoms reported by many people. Support
from each other then, could well be dominated by talk about 'things
I am not just talking about MS here. I have also heard of people
demanding that their therapist conventionalise and pathologise their
symptoms of mental illness when the therapist dares to explore other ways
of understanding (other than traditional psychotherapuetic - blame my
childhood - methods).
Tread warily is my suggestion.
> I agree with your point about 'outsiders' often portraying the experience
> disability in a negative light, due in part to not using or understanding
> the social model of disability. However, as someone who works for the MS
> Society in England, I can see quite clearly that a great deal of negativity
> about the experience of having MS at least, comes from people with MS
> themselves. As the majority of branches are run by people with MS and
> carers, their often very medicalised view of MS/disability is reflected in
> their activities and interaction with others e.g. newly diagnosed
> I am undertaking some research into the potential use of the social model by
> the MS Society to guide its work - at the moment this isn't the case. I am
> trying to grapple with the above issue and am coming to the conclusion that
> there is an awareness raising job to be done within the MS Society itself.
> The negativity is due in part to people with MS having lived much of their
> lives as non-disabled people I assume although I wouldn't want to
> distinguish so simplistically between acquired and 'conjenital' impairments
> (if that's the right phrase (apologies if it isn't)).
> If anyone has any views or guidance, I would be extremely grateful.
> > -----Original Message-----
> > From: Rosemary Pynor [SMTP:[log in to unmask]]
> > Sent: 11 May 2000 06:50
> > To: [log in to unmask]
> > Subject: Re: MS Color print out of ADs
> > Hi everyone,
> > I teach several courses in disability studies to health science students
> > at the University of Sydney. I was interested in Suzanne's comments about
> > the negativity of disability support groups. Until quite recently I had
> > found it very difficult to get any material that showed any positive
> > aspects to being disabled. I have found one video on MS that is quite
> > positive. It's called MS, You're Not Alone. It was made by a student in
> > communication who has MS. In the video she interviews a number of young
> > people who have been diagnosed with MS. It basically is made for people
> > who have just been diagnosed to let them know that "life goes on". I have
> > found it to be a useful aid to teaching as it presents people who have MS
> > in a positive light. The MS Society provided support and a grant for this
> > video to be made.
> > I think some of the problems in how these groups represent disability lies
> > in the old problem that the people devising these public awareness
> > packages are often not the people affected by the disability or disorder.
> > They are using an outsiers perspective and individualising disability.
> > They seem totally oblivious to the social model of disability.
> > Rosemary
> > At 05:36 PM 5/9/2000 -0700, you wrote:
> > >hi all,
> > >at one point I considered doing some analysis on ads from disability
> > >organizations for public awareness. this is no longer happening, however
> > i
> > >have some pretty interesting things from the National Multiple Sclerosis
> > >Society that i'd be happy to mail to anyone interested. It's basically
> > >their public awareness campaign of MS -- the theme is using the scare
> > >tactic -- like "MS - it's not a magazine for feminists. It's a
> > >neurological nightmare."
> > >
> > >Any way -- good material for someone doing research/analysis. Contact me
> > >if you'd like me to mail it to you.
> > >best,
> > >Suzanne Levine
> > >~~
> > >Disability Media Project
> > >P.O. Box 22115, San Francisco, CA 94122-0115
> > >Voice: 415-387-0617 / Fax: 415-387-0583
> > >e- mailto:[log in to unmask]
> > >Web Site: http://www.dmedia.org
> > >
> > >
> > >
> > =================================================
> > Rosemary Pynor
> > School of Behavioural & Community Health Sciences
> > University of Sydney
> > (02) 9351 9598 (02) 9351 9540 (fax)
School of Occupation and Leisure Sciences
Faculty of Health Sciences
University of Sydney
P.O. Box 170
Lidcombe NSW 2141
Phone: (62 1) 9351 9509
Fax: (62 1) 9351 9166
e-mail: [log in to unmask]
Please visit the School's web site at
Not one shred of evidence supports the notion that life is serious