Hi Alex
I too am currently grappling with how to approach the ethics
committee here regarding my proposed research exploring narrative
method use with individuals who are labeled as having a severe or
profound intellectual disability for the purposes of hearing their
stories, with particular emphasis on meaning making and self-
developed idenitites.
>From the literature I have consulted to date there is no tangible 'self'
representeations of individuals with severe intellectual disability.
However I have found pertinent discussion of the ethical constraints
and necessary considerations when considering any form of
participatory reserach with this group, see especially Kirsten Stalker
(1998) and Swain, Heyman & Gillman (1998). (I am sure you would
have sourced these papers, both published in Disabilty & Society).
But to the point at hand: ethical clearance. The strongest advice I
received from my school when I broached my dilemmas reagrding
the exploration of narrative methods with this group during a recent
seminar series was:
- don't position myself to oppositional to traditional reseach protocols
- rather argue for subtleties and understanding
- therefore I was encouraged to make my argument within the
ethical processes. That is, not to focus on the somewhat limiting and
exclusionary positions of informed consent and competence
generally, but rather elaborate how these concepts are
operationalised in the process I intend to undertake.
- I was also encouraged to to be careful to think through
relationships & intimacy, access to people and safety versus
exploitation, and be sure to think carefully about my assumptions
(based on prior relationships with people so labeled, and my belief
that telling stories is 'good') as those on the ethics committee
generally will not have personal experience of this.
Finally, I was urged to be specific, ie spell out how an individual
might indicate their willingness to proceed, etc.
While these guidelines might seem overly simplistic, they were a
useful re-starting point when gaining ethical clearance was
appearing more and more futile. I hope what I have shared assists
you. I am also keen to hear from you about how things went and
what thinking you have undertaken both prior and since the meeting.
This reserach is profoundly important - we must find ways to
uncover more of the ordinary aspects of the lives of individuals
labeled as having a severe or profound intellectual disability, and
reframing ethical constraints is a necessary step.
all the best
Rea
Rea Dennis
Post-graduate student
School of Social Work and Social Policy
The University of Queensland
Brisbane Australia
+61 7 3365 2634
+61 7 3365 1788 (fax)
0416 186 557
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