"I am putting these questions out there because as I'm currently going
through compiling a report we conducted locally, I find myself asking
whether I may be, indeed 'hijacking' the voices of participants in the
process of interpreting the data. And, even if I'm a disabled person
myself, whether I risk imposing my own values about disability and my
identity as a disabled person within the interpretation of results."
This is a question far broader than disability studies, but highly
relevant to disability studies because of its nature; how far can anyone
ever be said to represent anyone else, and who gets to decide, and on what
criteria. Within disability studies I once read an introduction to
someone's piece of work stating that although all the respondents were
physically disabled (including the writer), she also considered that the
views of people with learning disabilities were somehow there by
implication by their membership of the wider disability community. To
which the obvious question is "how do you know if you didn't ask?" But
even if she had asked, how far is the view of any part representative of a
whole; as a left handed woman who likes climbing mountains, how far do I
represent left handed women who like climbing mountains? And if I am a
member of a group whose voices aren't normally heard, then on one hand I
might be seen as a representative spokesperson for the group, but actually
if anything I am unrepresentative; a minority voice in a group whose
majority isn't normally heard.
So absolutely disability research can't possibly be emancipatory unless it
is controlled by people with disabilities. But at the same time, is there
a danger that research might be "emancipatory" for the individuals
controlling it, and yet still potentially exploitative/disempowering of
others whose voices weren't heard?
Hazel
From: The Disability-Research Discussion List
[mailto:[log in to unmask]] On Behalf Of Janice Ollerton
Sent: 01 June 2012 21:47
To: [log in to unmask]
Subject: Re: The role of disabled people within disability research: a few
QUESTIONS
Hi Gordon,
All good questions. One question your email raised for me is how would we
know if the disability research being done was by disabled or non-disabled
researchers? or bald researchers, or left-handed researchers? I wonder if
there is an unchallenged assumption about the nature of researchers that
you need to consider.
For a dated but still interesting and relevant read try from the
disability archive (Stone & Priestley)'Parasites, pawns and partners:
disability research and the role of non-disabled researchers'. And an
oldie but goodie is Barnes & Mercer's book "Doing Disability Research"
(also available from the archive). I'm sure you'd find this another good
source for clarifying some of your questions.
However, one point worth noting is that if disabled people are not
controlling the research then by definition it is not "emancipatory
disability research".
Jan
_____
Date: Fri, 1 Jun 2012 16:49:01 +0200
From: [log in to unmask]
Subject: The role of disabled people within disability research: a few
QUESTIONS
To: [log in to unmask]
Dear all,
When I became involved in disability research, I wasn't unsure of what I
was getting involved in. I have met a lot of people from various fields of
life, some of which were academics or professionals. While I don't claim
to be an "experienced academic" in the field of disability studies, I felt
a certain unease to realise that the vast majority, with few notable
exceptions, were non-disabled.
While, there's no denying that there has been a lot of valuable and useful
research conducted by non-disabled people researchers who practice the
objectives of conducting emancipatory disability that yields practical
improvements in our life as disabled people, the lack of disabled
researchers is, indeed, anomalous. Granted, this may be simply my
perception but, unfortunately, those people who should "own" this research
and, ideally, conduct it themselves remain absent from much of the
research process.
This prompts me to ask why disabled people as researchers is fairly
limited and, unlike other disciplines such as feminist studies, the group
of interest is in the minority and has, in effect, little or no clear
control. Here, I am not denying that efforts are being made to increase
the number of disabled academics engaging in emancipatory and related
disability research. I know, because I have benefited from such an
opportunity with the University of Leeds.
Yet, I beg the questions:
To what extent does disability research which purports to be
"emancipatory" can end up being a source of further oppression and
alienation of disabled people?
To what extent dubious research can enforce negative attitudes or
stereotypes?
To what extent does disability research conducted by non-disabled people
actually representing the views of disabled participants who are took part
in the research?
How far can disability research go until it becomes exploitative rather
than empowering?
Why are disabled people largely absent (it seems) from actual involvement
in disability research and emancipatory disability research in particular?
And, perhaps the most controversial question:
Can we have disability research without the active involvement of disabled
people throughout the research process (not just in the data collection
phase)?
I am putting these questions out there because as I'm currently going
through compiling a report we conducted locally, I find myself asking
whether I may be, indeed 'hijacking' the voices of participants in the
process of interpreting the data. And, even if I'm a disabled person
myself, whether I risk imposing my own values about disability and my
identity as a disabled person within the interpretation of results.
Hope to read your comments/opinions.
Best,
Gordon
Gordon C. Cardona
BA Hon. (Malta), MA (Leeds)
---------------------------
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Email: [log in to unmask]
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"If you want to be happy, practice compassion.
If you want others to be happy, practice compassion"
HH The 14th Dalai Lama (6 July 1935 - present)
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