 |
 |
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 %%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%