Hello Julia, and those out there following this strand. ME in Canada and
the U K is also known as CFIDS in the U .S. I was once diagnosed with
this but have since been given several other labels. I also recently
reviewed a book about assessment and treament of ME (for DSQ). What I
found was remarkably similar to what you have suggested. That the
"invisibility" of the disease/illness does not in fact lead to so much
discrimination or oppression as it leads to difficulty in being recognized
as having an illness or disability. The book I reviewed included case
histories of women who fought to get disability insurance or government
pensions on the basis of their diagnosis and were denied.
So, on the face of your project there is a reason to question how the
social model works. That is, the pain and fatigue, brain fog, difficulties
with food and sleep and al these other experienced phenomena are internal
to the person and not results of oppression. However, the social model
does actually work wellif you apply it to the economic and social status
of the people with ME. Especially those who used to work- if works less
wellfor women or men who were primarily caregivers when they became ill.
The social model application works like this: the SYSTEM which is
constructed on the basis of what IS and IS NOT normal, has DISABLED
people who have ME by DISALLOWING them economic security and denying them
medical and personal supports. BECAUSE the medical model requires
quantifiable proof, not just evidence of symptoms but evidence of
pathology, in order to construct a legitimate "disability" people with ME
suffer. (not meaning pain). The suffering then, is marginalization, denial
of benefits, stress, and lack of ability to participate and to, hopefully,
recover. This difficulty has led to at least a handful of suicides and of
course the medical model has decided this leads to a conclusion that
ME/CFIDS is really a type of depression. Instead of considering that being
ill can in itself lead to depression when your illness is not recognized
and your life is falling apart.
So, I hoe this helps. I too have wondered about the applications of a
social model to things like pain and vertigo, so I prefer to not throw out
everything but to use various approaches to understand the bigger picture.
While social model does not explain the EXPERIENCE of ME or CFIDS it is
actually quite useful in understanding the economic and social
marginalization experienced by people.
Tanis is moving in August please stay tuned for new address and phone
number. Visit http://members.xoom.com/doetanis1/newhome.html for some
links. Pls send attachments to [log in to unmask] not to this email thanks.
On Thu, 4 Nov 1999, Julia Cameron wrote:
> Hello - this is my first posting to this list. I have followed the discussion about how long-term illness fits (or doesnt) with the social model, and this issue is very much top of my own agenda at present. I am an MSc student doing my dissertation on employment and ME. I have ME myself and have been much influenced by the social model, but I am trying to incorporate elements of the emancipatory research paradigm in my project and this is leading to some contradictions.
> The research was initiated by me, not by a disabled group, but I have got together an advisory or steering group of three people with ME, all friends whom I know through a regional ME grouping. These three will oversee all aspects of the research. They have many doubts about the social model and do not find it satisfactory with a condition like ME, where pain and fatigue are often constant symptoms, and as much to be battled against as oppression. My research proposal has already undergone some alteration as a result.
> Thus, my attempt to work towards emancipatory research is likely to lead to me doing a piece of work which questions the social model! Perhaps I could have tried harder to find advisory committee members who were soc mod enthusiasts, but it was difficult finding anyone with ME who had the energy to get involved with this work.
> I have tried to present a positive picture of the social model as I am generally positive about it myself, but am finding it difficult to argue the case. These three women are, possibly totally unlike the normal guiding disabled group for disability research, from 'professional' backgrounds, with 2 PhDs amongst them.
> I think my research will be interesting partly because of this unusual dimension, and the debates we have will become part of the research focus. However, I am keen to receive the thoughts of experienced disability researchers.
> Many thanks
> Julia Cameron