Vision, Passion, Action

RBC Institute

With support from the RBC Foundation, the RBC Institute for Disability Studies Research and Education was established to strengthen education of those committed to the rights, inclusion and full social participation of people with disabilities.

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Research ethics protocols

Application for Ethics Review of Research Involving Human Subjects: Research Ethics Board: Ryerson University

Application Checklist

(See above)

Study Abstract

Whether in Body, Dress, Disability or Women’s Studies, researchers have generally failed to engage disabled women in conversation about the social significance of their clothing. “Into and Out of the Closet” addresses this oversight through an innovative fusion of ethnographic and arts-informed methods. Dubbed the Wardrobe Study, this is a three-year project that seeks to discover the lifeworlds of disabled women through their clothing practice/s. During in-depth interviews in their homes, participants will be asked to open the doors of their closets and narrate the contents. What garments hang there? How were those choices made? What garments are missing or have been hidden away? What and why? What does the wardrobe composition say about the way disabled women constitute their identities at the junctures of sexuality, race, class and age? What do their selections reveal about the place(s) and space(s) of disabled women in contemporary society? The proposal for this work calls for two products: a book on this subject; and an “analytic fashion show” that features significant clothing/outfits encountered during interviews, supported by a socio-political commentary drawn from study data. Funds currently granted from SSHRC are sufficient to support only the “pure research” aspects of this project -- not its alternative dissemination strategy. Thus, the protocol I am submitting here addresses only the former. It leaves issues surrounding the fashion show until such time as I have raised the necessary funds to implement it as originally envisioned. At that time, I will submit an Addendum for approval (essentially Part B of the study). Regardless of final form, the major benefit of this research is an investigation of the lives of disabled women on a subject from which they have been excluded, and in a way that enhances the social/political outcome of disability pride. Participation in the study is voluntary; no one need risk involvement unless she wants/decides to. Where requested by participants, researchers will use pseudonyms in written reports and other materials that document study findings. Letters of consent will guarantee all participants the right to withdraw from the study at any time, the right to refuse audio-taping, and the opportunity to review transcripts upon request.

Statement of Purpose and Background

Relevant background and literature

The Wardrobe Study could be situated in a number of disciplines, among them anthropology, sociology, and literary studies. However, for my purposes, the most prominent are Disability Studies, Women’s Studies and Dress Studies – all of which have been affected by the explosion of theoretical and philosophical considerations of “the body” that have occurred in the past several decades.  Seminal works (Butler, 1990, 1993; Foucault 1978, 1987, 1988; Irigaray, 1993; Merleau-Ponty, 1962) have established the body as central to understanding both the subject and the social. This theory considers how we are viewed, defined, judged, thought about, and treated as bodies, how we come to know ourselves, and are understood by others through our bodies.

Disability Studies has successfully argued for a social rather than a medical model of disability.  In an attempt to free disabled bodies from being pathologized, the social model emphasizes social, political and environmental barriers as the root cause of disability (Finkelstein, 1980; Francis & Silvers, 2000; Oliver, 1990). Yet by concentrating on external barriers, the lived experience of the disabled body has become secondary in the field.  Issues of physical impairment have been designated as a separate issue, as have questions of culture, representation, and meaning (Fawcett, 2000). Only recently has Disability Studies returned to the corporeal in order to explore and theorize the lived experience of embodied difference (Butler & Parr, 1999; Corker & Shakespeare, 2002; Davis, 2002; Deutch & Nussbaum, 2000; Wilson & Lewiecki-Wilson, 2001). This work seeks to include the personal experience of living with impairment while maintaining that physical disability is a disruption located in the sensory field of the observer (Davis, 2002: 50). In a parallel move, theorists of Women’s Studies have developed a critical corporeal feminism that rethinks the body, gender, and sexuality (Duncan, 1996; Dyck & Moss, 1999; Grosz, 1994). A cluster of feminist body work has explored the disabled (female) body in an attempt to bring lived experience into the realm of academic knowledge (Fawcett, 2000; Thomas, 1999; Thomson, 1997a, 1997b; Wendell, 1997, 1996). While drawing on these developments, the Wardrobe Study addresses some glaring omissions. Most significantly, despite extensive body scholarship, theorists have yet to address the obvious fact that human bodies are dressed bodies. Clothing embellishes the body: it is material that manages and modifies meanings of the body. And yet, in current theory, the body is conceived as unmediated by clothing, imagined as unadorned by the culture and communication of textiles.  This is not to say that clothing as a subject field has gone unexplored. Fashion and clothing has long been examined through a socio-historical lens, with classic works ranging from Carlyle (1869) to Barthes (1967).  More recently, Cultural Studies and the burgeoning field of Dress Studies have placed fashion and dress as a central way that subjects create, perform, and play with social roles. Much of cultural studies work examines fashion and its relation to extra-ordinary situations like the runway or the movie screen (Anderson, 2000; Craik, 1994; Hollander, 1999; Luckett, 2000). Dress Studies, however, considers the relations between clothing and people in everyday life including gender and sexuality (see Entwistle 2001; Eicher 1992; Breward 2000; 2001and Wilson (1999; 2001).

My previous dress scholarship can be positioned here. I published my first piece on “women, work and wedding dresses in Central Alberta” in a Canadian women’s magazine in 1998. It was an edited version of the text for an exhibit that I curated, entitled Fabrications: Stitching Ourselves Together, and went public as a newspaper supplement several months before the exhibit even opened. The same text was also online for several years as part of my strong commitment to knowledge transfer. For the same reason, I worked with CBC National to create a radio documentary entitled Behind the Scenes at the Red Deer Museum. It plumbed the emotional depths of collaborating with my mother on this project. Between 2001 and 2004, I published chapters and articles that articulated various features of the project: women’s history, qualitative method, mother-daughter relationships, (prairie) culture and (wedding) dress. The latest piece takes the form of “poetic notes” that explore the darker side of those dresses: resistance, revenge and redemption. It is published in a recent Canadian book edited by Weber and Mitchell (2004) that explores clothing as narratives of memory, body and identity.

Consistently portrayed as monstrous/pitiful/suffering/victims, disabled women have been left out of clothing studies. Theorists have consistently situated their work on bodies that are assumed to be physically ‘normative.’ Editors Guy, Green and Banim (2001) include two chapters written by women whose bodies were surgically altered in cancer treatment. However, none of the book’s contributors are disabled women, and few of the studies are grounded in women’s own accounts of clothing use.  Similarly, none of the narrative essays and fictive accounts that women are publishing (e.g. Dunseath, 1998; Shields and Anderson, 2001) begins from the standpoint of disabled women. Nor do they explore how clothing relates expressions of self to the social world, and in turn how the social world relates to disabled women what is/is not acceptable for them to express through their clothing.An extensive review of the literature revealed only two remotely relevant pieces relating to disability. One, a fashion spread in a UK magazine (September 1998) features the disabled as hypermodern models for Alexander McQueen’s far-out fashions.  The other is an article that explores high fashion, high theory, and the disabled male figure (Kuppers, 2002). Meanwhile, outside of academe, internet searches turn up commercial sites geared towards selling garments for people with “special needs,” offering clothing that will “improve their morale as well as help to camouflage deformities.” Clearly, the field is ripe for someone willing to step outside these patronizing clichés and into the discourse of disability pride.

Design

Professional researchers have a long and difficult relationship with disability communities. We have examined and produced their members almost exclusively and often detrimentally as objects -- most often as medicalized objects. The RBC Institute for Disability Studies Research and Education is invested in building a different history. Over the past three years, we have built a research program that is grounded in (and contributes to) the emerging knowledge base of Critical Disability Studies. Our projects are designed to challenge the prevailing assumption that impoverished economic conditions and a shabby social life are the inevitable outcome of physical/mental difference and/or medical condition. My colleagues and I are invested in the kind of science that enables disabled people to be present socially and politically as vibrant subjects -- active and vocal experts on their own lives and collective circumstances. It follows that Institute research is not hypothesis-driven but committed to open-ended processes that build from stage to stage. As researchers, our role is primarily facilitative, catalytic and curatorial. Along with observation and participation, we rely heavily on talking to people. We favour methods that create dialogue about experience: through informal conversation and/or formal individual and group interviews.

Ethnography is a foundational method of the Wardrobe Study as demonstrated by its emphasis on people, activity and talk. In the past few years, I have focused in particular on Institutional Ethnography, a fieldwork method that originated with Canadian sociologist Dorothy Smith (2002; 1999; 1990; 1987). In keeping with her work, I begin not by formulating a hypothesis about the clothing practices of disabled women but by laying the groundwork for open-ended enquiry with them -- a preference for discovery that I will renew throughout the study.  I retain Smith’s orientation toward moving layer by layer on the basis of both informal conversation and formal interviews. I also draw upon her generous conception of “work,” described as “the lynchpin between the everyday experiences of people and larger institutional processes” (Luken and Vaughan, 1991: 41). Proceeding in this way, I will stitch together in book form a description of “clothing-work” that fits the social worlds of disabled women.With the addition of the ‘analytic fashion show,’ the study’s ethnographic grounding will be amplified and to some extent altered by arts elements. Arts-informed research seeks to incorporate artistic genres, visual methods and narrative forms to enhance the accessibility and comprehensiveness of research. Practitioners draw from a range of forms including fiction, poetry, theatre/drama, visual arts, installation, film and video to produce work that maps “a borderland between passion and intellect, analysis and subjectivity, ethnography and autobiography, art and life” (Behar, 1996:174). The fashion show envisioned by this project will feature women whose bodies – and mobility aids – are generally considered in appropriate to and excluded from such forums. It will navigate the difficult terrain between women’s history with fashion shows and disabled people’s history with freak shows.

Justification for involving humans in the research

The project as described above cannot be done without them.

Subjects/Participants

Participant Characteristics

Approximately one hundred people will take part in the data-gathering aspects of this study. Participants will be adult women of any age who self-identify as disabled. In other words, potential participants will decide for themselves whether the term “disability” applies to their life circumstances. The study will be grounded in the knowledge and experience of 10-25 disability activists/academics in the United States and Canada. These “framing interviews” will pave the way for 50-75 in-depth interviews with disabled women living in Toronto and environs. The latter may be academics and/or activists but need not be either.

Selection Criteria

As an ethnographer, I do not recruit on the basis of demographic representation to produce a “sample” in the usual statistical sense of a priori categories. My aim with this study will be to talk to a non-homogeneous range of disabled women. My co-investigators and I will select participants for the first phase from our existing knowledge of women who are prominent in disability organizations and/or as published disability scholars. We already know of several who support this project. In Toronto, I will interview disabled women who have heard about the study and express a desire to be interviewed, as well as disabled women I/we have heard of and wish to invite in as participants. The latter are free to accept or reject the invitation. In other words, my colleagues and I will “work the grapevine” that connects an extensive network of disabled women in the GTA in order to identify potential participants. As the study unfolds (or, in order to unfold the study) we will guide selection to ensure that our final number takes in diverse social locations (and their combination) including ethnicity, body/mind differences, sexual orientation and socio-economic experience.

Special Populations

No special population as defined by the guidelines will be included in this study. Participants will be intellectually capable, legally competent adults who are fully able to give informed consent.

Recruitment source

Through publications, conferences, public events and past projects across disability groups, the researchers already have well-developed links with an international community of disabled women, including disabled artists and performers. We are particularly rich with connections to women in universities and disability (community) organizations but we will not be using these or any other institution as a base from which to recruit participants. The word of mouth “snowballing” that creates this study will be fluid, inter-personal, and deliberately not specified ahead of time. This does not mean that organizations have no place in the project. A core activity will be to establish and develop collaborative relationships with at least one community-based organization representing disabled women, probably DAWN Canada, and two key academic sites: (1) the Centre for Arts Informed Research, located in the Adult Education Department at OISE/UT; and (2) the virtual Image and Identity Research Collective run by Weber and Mitchell out of Concordia University in Montreal. However, the work here is to build supportive partnerships towards effective dissemination of study results rather than to use these sites for recruitment.

Recruitment methods

This study does not make use of institutional records or documentation as a way of recruiting participants. As already described, the method is iterative. It builds between people, from one person to another. As Principal Investigator, I will contact each woman who has expressed interest in the study or has interested the research team. The initial contact will be by phone or through whichever mode of communication works best for her.  This will give me an opportunity to discuss the study in greater detail, explain the significance of her participation, answer any questions she might have and find out whether and what kind of accommodations she might require.

Informed Consent Process

During the initial telephone conversation, women who wish to proceed will be advised that a Letter of Consent describing the study will be forwarded by mail. (See attached.) It will assure confidentiality, the right to withdraw from the study at any time, the right to refuse audio-taping, and the opportunity to review transcripts from interviews if desired. Because of the pervasive silencing that they have experienced, people with disabilities sometimes ask that their actual names be used in research documents. If this is the case, I/we will negotiate an addendum to the Letter of Consent regarding how she wishes to be named in study documentation.

Study Location

The research design calls for interviews with participants in their own homes so that I can gain access to their closets as the starting point for a broader discussion of how their lives are organized. This point will be emphasized in the Letter of Consent. I will reinforce it in my telephone communication to make absolutely certain that it comes as no surprise to the woman involved. The only complication here will be around interviews with activists/scholars who live in the United States or parts of Canada where an in-home visit is not economically or logistically feasible. American locations include Atlanta, New York, San Francisco and Florida. In these instances, I will do the interviews by phone, modifying my approach to take into consideration a starting point that is removed on my end from the actual materials of a woman’s wardrobe.

Potential Problems

This research is distinguished by an intimate entry point. Closets are typically spaces in which people tuck personal belongings out of sight, and are also typically located in bedrooms (though foyers and basements are also potential sites of enquiry). Thus, opening the closet doors and the gradual discovery of these objects and their stories by an ‘outsider’ must be sensitively handled. Of importance here are: 1) the self-selection built into our recruitment. I anticipate that disabled women who contact us will be intrigued not just by the subject matter of the study but by the entry point itself. The project will draw to it women capable of taking this up with maturity. 2) careful preparatory work of the initial phone call and the Letter of Consent. This initial groundwork is intended to strengthen participant resources for the interview. 3) careful follow-up. All members of the research team will be available for follow-up conversations to discuss issues that arise as a result of the interview itself.

Research Design and Methods

Because I did not receive full funding as requested, I have had to devise a different way of sequencing project activities. Specifically, I have repositioned the ‘analytic fashion show’ so that it now appears in the final year of this study rather than in the middle. This reduces its power to collect as well as to present data it but gives me more time to raise the funds necessary to implement this part of the study. Year One

The focus in Year One will be on identifying and interviewing research participants. My primary request of them will be for an in-home interview during which we would explore their closets together. By physically “entering the wardrobe” I can engage directly with disabled women’s clothing – shape, style, color, texture, organization, use, history, and meaning.  I am interested in what is actively worn, as well as what has been set aside, in what is present as well as what is missing. Interviews will be audio-taped, transcribed and shared with study participants. Field notes will be made after each interview. In addition, each woman will be asked to keep a clothing record for two weeks where she documents what she wears each day, the reasoning behind each selection, how well (or poorly) it worked, and any other considerations that come to mind. Each will be asked to write, sketch or otherwise reflect upon her clothing, her experience with it, what it means for her, and any thoughts, feelings and/or memories, struggles or triumphs that she considers relevant to this relationship. The research team will offer reciprocity by keeping similar records and generating similar reflections ourselves as a group of able-bodied and disabled women. Accounts from both groups will be taken as data.

A secondary focus will be on creating photographic images of disabled women and their clothing that complement the written text of the book.  In this first year, I will familiarize myself with the issues of representation that pertain to the use of photographs of disabled people, discuss the matter with my research subjects, and make some decisions in collaboration with them about whether and how they will be portrayed in the book. I will also identify consultant labour for this process.

Year Two

In Year Two, the primary focus will be on data analysis. I view qualitative analysis as a social process organized by reading and collectively thinking through transcripts and other study data. Analysis begins with data-gathering and weaves itself forward from there. In the latter phases, members of the research team will meet to share insights and interpretations. Students and collaborators will attend whenever possible. The work of these sessions is two-fold: to identify the clothing and body stories that will be translated into fashion show commentary; and to develop the common analytic direction that will form the framework for the book. The focus will be on the range of activities that disabled women engage in as part of their “clothing work,” and how these activities are socially organized.

A secondary focus will be writing, as well as on fund-raising to enable the production of the ‘analytic fashion-show.’ My goal for the end of this year would be to synthesize all study data, including photographs, into a rough book manuscript that uses a variety of writing forms and styles, highlighting not just the material properties of the clothing but also the wearers’ stories and the analysis derived from them. Using the same data base, the research team will also create the commentary for the fashion show.

Year Three

Year Three will feature the production of the ‘analytic fashion show ’arising from study data. This event will not only communicate what we have discovered through interviews, it will also initiate a second layer of data-gathering from audience reactions. Audience members will be asked to leave written or dictated comments in books provided for that purpose. The research team will take photographs during the event with an eye to incorporating them into the book. We will also experiment with the use of amateur photographs created by disposable cameras given to audience members to use throughout the show. Before this takes place, I would prepare an Addendum to this proposal for approval by the Ethics Review Committee. It will address ethical issues arising from the work of organizing, rehearsing, and publicizing this show. In Year Three, I will also complete the final draft of the book, incorporating as much as possible of the audience response material generated by the fashion show event. I look to feature the completed work on three websites: the RBC Institute for Disability Studies (www.ryerson.ca/ds/about-school/rbcinstitute.html): the Centre for Arts-Informed Research (site address): the Image and Identity Research Collective web site (www.iirc.mcgill.ca). I look to make scholarly presentations at relevant conferences but make particular commitment to give a paper on this work at the Society for Disability Studies held each year in the United States.

Tests, Questionnaires and Interview Guides

Attachments to this protocol include:

  • Recruitment letter
  • Outline of telephone script
  • Participation Agreement
  • Outline of orienting questions for interviews 

Deception or Incomplete Disclosure

Methods and procedures in this study will be fully transparent.

Potential benefits

On the academic side, the Wardrobe Study addresses significant gaps in the literature bases of several inter-connected academic disciplines. It demonstrates a unique entry point for qualitative enquiry, and a direct knowledge transfer from university to several key publics. From the community side, this research takes up the lives of disabled women on a subject from which they have been excluded, and in a way that enhances the social/political outcome of disability pride. Portraying disabled women as actively engaged with both fashion and the mundane business of dressing/undressing is a form of disability activism. It positions disabled female bodies center-stage but without separating them/us from the material realities that concern social model theorists of disability.

Risks

Management of risk

The procedures already described include:

  • Selection through networking
  • Voluntary participation
  • Careful introductory conversations
  • Transparency of methods
  • Protections for participants outlined in Participation Agreement
  • No personal documents sought
  • Follow-up discussions is/when necessary

Confidentiality of data

Only members of the research team will have access to raw data and the name of the respondent/s. All data including tapes, transcripts, field notes, disks and official documents will be securely stores in a locked filing cabinet at the Institute for Disability Studies Research and Education, Ryerson University. After five years all raw data will be destroyed. Unless the respondent specifically requests otherwise, pseudonyms will be used in all written reports. (See possible exception under Letter of Consent.)

Data monitoring

N/A

Assessment of risk

The risks are minimal particularly in relation to the significant benefits the participant. The study enhances the ‘voice’ of the individual participant; it contributes a previously hidden history of clothing useage relevant to communities of disabled women. The study is oriented away from any kind of objectification. Rather, it validates its participants as expert witnesses regarding how their lives (and selves) are put together. Preliminary conversations with disabled women have generated nothing but keen interest.

Costs

There are no participant travel costs associated with this study. Any costs associated with the clothing journals and/or reflections on clothing experience will be covered by the study. Some participants may need the study to cover the cost of personal attendants or communication aides. Not only are we committed to covering these costs but consider our interactions with participants about their practices in this area to be part of our research.  

Compensation and Incentives

This study provides participants with an honorarium of $50. It provides payment for any attendant care or communication aides that are necessary to support the interview. These payments recognize participants’ contribution to the project.

Investigator Experience

Dr. Kathryn Church has been researching issues of disability since the mid-1980s. Trained as a clinician, she moved into community organizing and policy development as the first Coordinator of “Building a Framework for Support,” a national initiative of the Canadian Mental Health Association. Her doctorate in sociology explored psychiatric survivor involvement in community mental health policy. In the course of producing this work, she became a strong ally of the survivor movement. Dr. Church has spent the past ten years doing community-based research with survivor organizations engaged in knowledge development, specifically in defining their own approach to economic development. She has become skilled in attending to insider/outsider relations with respect to disability communities, in using qualitative methods that are sensitive to the subjectivities of disabled people, and in using alternative forms of writing and research dissemination that meet community needs. Author of “Forbidden Narratives: Critical Autobiography as Social Science” and a range of academic papers, Dr. Church’s research output also includes a dozen plain-text documents, as well as production consultation for a documentary length film called “Working Like Crazy.”. From 1997 to 2001, she was curator of an award-winning museum exhibit entitled “Fabrications: Stitching Ourselves Together.” It completed a three year tour of six Canadian museums.

Ms. Melanie Panitch has been a “founder” of the School of Disability Studies at Ryerson, first as Coordinator to develop the new program proposal and since 1999 as Director of the School. She was instrumental in attracting a lead campaign gift from the Royal Bank to establish the Institute for Disability Studies Research and Education, which she co-directs. For thirty years she has been an activist, advocate, researcher and educator, and has strong roots in the community living movement. She has designed and taught courses on human rights and disability at the Universities of Guyana and the West Indies. She has lectured at international conferences in Guatemala, Mexico, Ecuador and Uruguay. Throughout the nineties she was Coordinator of Social Development and Public Education at The Roeher Institute; she was also part of a research team examining disability-related policies in Canada. Her work focused on child care, literacy, violence and abuse, and care-giving from which she published numerous articles, chapters, reports and books. In 2000-2002 she was the Research Coordinator for the Liberated Learning Project (Ryerson site). Ms. Panitch has a Masters in Social Work and is completing a Doctor of Social Welfare (DSW) from Hunter College, School of Social Work, at the Graduate Centre of the City University of New York.Ms. Catherine Frazee has been involved in the equality rights movement for many years, most notably during her term as Chief Commissioner of the Ontario Human Rights Commission from 1989-1992. Currently she is the Co-Director of the Ryerson-RBC Institute for Disability Studies Research and Education and a sessional instructor in the Disability Studies Program. Ms. Frazee is a committed activist who has lectured and published extensively in Canada and abroad on issues related to disability, rights, disability culture and the disability experience. Her work has been published in textbooks and scholarly journals as well as a variety of popular and speciality magazines. Included among her academic assignments are special lectures presented in 1998 at the University of Manitoba as part of the Faculty of Law Distinguished Visitor Series and the Bertha Wilson Visiting Professorship in Human Rights at Dalhousie University during the academic year 2000-2001. In 2002 Ms Frazee was awarded an Honorary Doctor of Letters degree from the University of New Brunswick.

Application Checklist

(as above)

Consent/Assent Forms

(Appended)

References

Anderson, F. (2000). Museums as Fashion Media. In Bruzzi, S. & Church Gibson, P. (eds.) Fashion Cultures: Theories, Explorations and Analysis. New York: Routledge.

Bach, M. (2001). Social Inclusion as Solidarity: Re-Thinking the Child Rights Agenda. Toronto: Laidlaw Foundation.

Banim, M. and Guy, A. (2001). Dis/continued Selves: Why Do Women Keep Clothes They No Longer Wear? In Guy, A. Green, E. & Banim, M. (eds.) Through the Wardrobe: Women’s Relationships with Their Clothes.  New York: Berg.

Banks, M. (1998). Visual Anthropology: Image, Object and Interpretation. In J.Prosser (ed.), Image-based Research: A Sourcebook for Qualitative Researchers. London: The Falmer Press.

Barker, E. (2001). A Comparative Exploration of Dress and the Presentation of Self as Implicit Religion. In Keenan, W. J. F. (ed.) Dressed to Impress: Looking the Part.  New York: Berg.

Barnard, M. (1996). Fashion as Communication. New York: Routledge.

Barnes, R. & Eicher, J. B. (eds.) (1992). Dress and Gender: Making and Meaning. New York: Berg.

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Behar, R. (1996). The Vulnerable Observer: Anthropology that Breaks your Heart. Boston: Beacon Press.

Best, A. L. (2000). Prom Night: Youth, Schools, and Popular Culture. New York: Routledge.

Breward, C. (2001). Manliness, Modernity and the Shaping of Male Clothing. In Entwistle, J. & Wilson, E. (eds.) Body Dressing. New York: Berg.

Breward, C. (2000). The Dandy Laid Bare: Embodying Practices and Fashion for Men. In Bruzzi, S. & Church Gibson, P. (eds.) Fashion Cultures: Theories, Explorations and Analysis. New York: Routledge.

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Brumberg, J. (1997). The Body Project: An Intimate History of American Girls. New York: Vintage Books.

Bruzzi, S. & Church Gibson, P. (2000). Fashion Cultures: Theories, Explorations and Analysis. New York: Routledge.

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Butler, J. (1993). Bodies that Matter: On the Discursive Limits of Sex. New York: Routledge.

Butler, R. (1999). Double the Trouble or Twice the Fun: Disabled Bodies in the Gay Community. In Butler, R. & Parr, H. (eds.) Mind and Body Spaces: Geographies of Illness, Impairment and Disability. New York: Routledge.

Butler, R. & Parr, H. (eds.) (1999). Mind and Body Spaces: Geographies of Illness, Impairment and Disability. New York: Routledge.

Byrdon, A. & Niesson, S. (eds.) (1998). Consuming Fashion: Adorning the Transnational Body. New York: Berg.

Carter, M. (ed.) (2003). Fashion Classics from Carlyle to Barthes. New York: Berg.

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Ceglowski, D. (1997). That’s a Good Story, but is it Really Research? Qualitative Inquiry, 3(2), 188-201.

Chouinard, V. (1999). Body Politics: Disabled Women’s Activism in Canada and Beyond. In Butler, R. & Parr, H. (eds.) Mind and Body Spaces: Geographies of Illness, Impairment and Disability. New York: Routledge.

Chouinard, V. & Grant, A. (1996). On Being Not Even Anywhere Near ‘The Project’: Ways of Putting Ourselves in the Picture. In Duncan, N. (ed.) Bodyspace: Destabilizing Geographies of Gender and Sexuality. New York: Routledge.

Church, K. (2004) Try this one on for Size: Poetic Notes on Wedding Dress Research. In Weber, S. & Mitchell, C. (eds.) Not Just Any Dress: Explorations of Dress, Identity, and the Body. London, UK: The Falmer Press.

Church, K. (2003a) Something Plain and Simple? Unpacking Custom-Made Wedding Dresses of Western Canada (1950-1995).  In Foster, H. & Johnson, D. (eds.) Wedding Dress Across Cultures.  Oxford: Berg.

Church, K, & L. Church (2003b) Needles and Pins: Dialogue on a Mother/Daughter Journey.  Journal for Research on Mothering. Toronto: Spring/Summer: Volume 5, Number 1.

Church, K. (2001a) The Hard Road Home: Towards a Polyphonic Narrative of the Mother/Daughter Relationship.  In Bochner, A. & Ellis, C. (Eds.) Ethnographically Speaking: Autoethnography, Literature, and Aesthetics.  Walnut Creek, CA: Alta Mira.

Church, K. (2001b).Fabrications: Clothing, Generations, and Stitching Together the History we Live.  In Cook, S., McLean, L. &O’Rourke, K. (eds.) Framing Our Past: Canadian Women’s History in the Twentieth Century.  McGill-Queen’s Publishing.

Church, K. (1998). "The Dressmaker." Elm Street Magazine Summer: 54-62.

Church, K. (online) Fabrications: Stitching Ourselves Together. http://grannyg.bc.ca/Fabrications

Church, K. & Martindale, W. (1999). “Shall We Dance?” "Looking Back over a Community-Museum Collaboration." Muse 17 (3) 43-50.

Church, K. & Church, L. (1998). Behind the Scenes at the Red Deer Museum. L Shorten (producer), This Morning, CBC Radio.

Church Gibson, P. (2000). Redressing the Balance: Patriarchy, Postmodernism and Feminism. In Bruzzi, S. & Church Gibson, P. (eds.) Fashion Cultures: Theories, Explorations and Analysis. New York: Routledge.

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Cole, S. (2000). ‘Don we Now Our Gay Apparel:’ Gay Men’s Dress in the Twentieth Century. New York: Berg.

Cole, S. (1999). Invisible Men: Gay Men’s Dress in Britain, 1950-70. In de la Haye, A. & Wilson, E. (eds.) Defining Dress: Dress as Object, Meaning and Identity. New York: Manchester University Press.

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Appendix A: Recruitment Letter

Date

Dear [Name of Participant]

I am writing to you in my role as Research Associate for the RBC Institute for Disability Studies Research and Education at Ryerson University.  The Institute is invested in the kind of social science that enables disabled people to be active and vocal experts on their own lives and collective circumstances.  In 2005, I/we received a grant to implement a study called ‘Into and Out of the Closet.” Funded by the Social Sciences and Humanities Research Council of Canada, the Wardrobe Study – as we call it – is a three year project that seeks to discover the lifeworlds of disabled women through their clothing. As its principal investigator, I am pleased to begin this exciting project. I am presently looking for adult women of various ages and experiences who self-identify as disabled and could make a significant contribution to this study. As a result of [indicate specifics of identification], your name has come to my attention.  At this point, what I am seeking is a face to face interview of approximately two hours that would be audio-taped with your permission.  It would take place in your home, in the room/space where you store the garments that constitute your everyday/night wardrobe. In responding to this request, you will want to think carefully about these circumstances. They require you to be intrigued by clothing practices as a topic area (generally overlooked for disabled women), but also comfortable with the act of bringing a curious researcher in contact with your actual closet, the garments and stories that are materialized there.

Questions that interest me include: What garments hang there? For what purposes are they worn? Did you purchase them personally? If so, what considerations guided your choice? If not, how did they come to be there? Whose choices or preferences do these garments reflect? Are there items present that are not generally worn, or worn only for special occasions? What are they? If they are not generally worn, why are they still present? Are there absences in the closet, i.e. garments that might be expected but are not present or have been hidden away? If so, what and why? The conversation will expand as we talk!If you agree to participate, I will also ask you to keep a clothing record for two weeks – by writing, sketching or using some other documentary form that is comfortable. This would be a record of what you wear each day, the reasoning behind each selection, how well (or poorly) it worked, and any other considerations that come to mind. We would also discuss any other means by which you can reflect upon your clothing, your experience with practices of dress/undress, what it means for you, your thoughts, feelings and/or memories, struggles or triumphs that you consider relevant to this relationship.  The co-investigators for this study are:

Melanie Panitch MSW, Doctoral Candidate

Director, School of Disability Studies

Co-Director of the Ryerson/RBC Institute for Disability Studies Research and Education

Catherine Frazee, Honorary Doctor of Letters

Professor of Distinction, School of Disability Studies

Co-Director of the Ryerson/RBC Institute for Disability Studies Research and Education

Our research assistant is Jiji Voronka, MA.

In a couple of weeks, I will follow up this letter with a phone call during which I would be pleased to answer any of your questions regarding this study. If you agree to participate, my next step will be to send a formal letter outline the various protections for participants that are built into the study. Please sign and return it to me the day of the interview.

This study provides participants with an honorarium of $50. It provides payment for any attendant care or communication aides that are necessary to support the interview. These payments recognize your contribution to the project.Please do not feel in any way obligated to accept this invitation. Participation in this study is voluntary. Your decision will not influence your future relations with Ryerson University or its Institute of Disability Studies.Thank you for considering this request. Please do not hesitate to contact me.

Sincerely,

Kathryn Church PhD

Assistant Professor, School of Disability Studies

Research Associate, RBC Institute for Disability Studies Research and Education

Ryerson University

Telephone: 416-979-5000 (4592)

Fax: 416-979-5209

Email: k3church@ryerson.ca

Appendix B: Script for Follow-up Phone Call

NOTE: A rigid script will not help researchers to establish the kind of trust that we want to build with participants in this study. Instead of prescribed text, I have set out “probes” that must be covered in some fashion at the researcher’s discretion in each new phone call.

Hello X. This is Kathryn Church calling from the Institute for Disability Studies at Ryerson University. I am following up on a letter that you received from me recently telling you about a study I am conducting with disabled women about their clothing practices. My intent in this research is to work outwards from the very tangible materials present in the wardrobes of disabled women to larger considerations of the places and spaces of disabled women in contemporary society. As I said in the letter, my co-investigators in this research are Catherine Frazee and Melanie Panitch. Our research assistant is Jiji Voronka. 

I am wondering whether you are willing to participate in this research. [If yes] I am delighted that you have accepted. I do want to remind you that participation in this study is voluntary and to inform you that you may withdraw from the study at any time. And I am prepared to answer any questions that you may have at this point.

  • Probe for any questions about the work of the Institute for Disability Studies Research and Education and/or this particular study;
  • Probe for response to self-identification as disabled;
  • Probe for response to being identified for participation by someone in my/team network;.
  • Probe for response to conducting an interview in the home, and in contact with personal space and belongings;
  • Probe for response to keeping a clothing record and find out the form this would take;
  • Probe for details about the way in which the participant would prefer to reflect on her clothing experience (writing, sketching, some other communication form);
  • Probe any needs for attendant care or communications aides, e.g. Do you anticipate any particular accommodation needs that we should consider in preparing for your interview?  
  • Probe for a good date and time in which to hold the interview and get directions to the participant’s home.

My next step will be to send a Participation Agreement for you to read. It outlines the various protections for participants that are built into the study. Please sign and return it to me the day of the interview. At that time, I will also give you the forms by which we will process your honorarium.

We have just covered a lot of information.  Did I miss anything? Was anything unclear? I am not sure whether you are taking notes but don’t worry. I can be reached by phone or email at any time for future communication. Thank you again for your time. I look forward to meeting with you on [date, time].

See you then. Good bye.

Appendix C: Participation Agreement

Into and Out of the Closet: Discovering the Lifeworlds of Disabled Women through their Clothing

You are being asked to participate in a research study. Before you give your consent to be a volunteer, it is important that you read the following information and ask as many questions as necessary to be sure you understand what you will be asked to do.

Research Team

The research team for this study is:

Principal Investigator

Kathryn Church PhD

Assistant Professor - School of Disability Studies: Research Associate - RBC Institute for Disability Studies Research and Education

Co-Investigators

Melanie Panitch MSW, Doctoral Candidate - Director, School of Disability Studies : Co-Director of the Ryerson/RBC Institute for Disability Studies Research and Education

Catherine Frazee, Honorary Doctor of Letters - Professor of Distinction, School of Disability Studies : Co-Director of the Ryerson/RBC Institute for Disability Studies Research and Education

Purpose of the Study
“Into and Out of the Closet” (The Wardrobe Study) is a three year project that seeks to discover the lifeworlds of disabled women through their clothing. The goal of this research is to work outwards from the very tangible materials present in the wardrobes of disabled women to larger considerations of the places and spaces of disabled women in contemporary society. What does the wardrobe composition say about the way disabled women constitute their identities at the junctures of sexuality, race, class and age? What do their selections reveal about the place(s) and space(s) of disabled women in contemporary society? This study will have approximately one hundred participants. They will be adult women of various ages and experiences who self-identify as disabled. In other words, potential participants will decide for themselves whether or not the term “disability” applies to their life circumstances.
Description of the Study:
The study involves a face to face interview of approximately two hours.  It takes place in your home, in the room/space where you store the garments that constitute your everyday/night wardrobe. At that time, I will ask you to open the doors of your closet and to narrate its contents in whatever way you are comfortable. With your permission, the interview will be audio-taped and transcribed. I will also ask you to keep a clothing record for two weeks – by writing, sketching or using some other documentary form that is comfortable. This would be a record of what you wear each day, the reasoning behind each selection, how well (or poorly) it worked, and any other considerations that come to mind. We will also discuss any other means by which you can reflect upon your clothing, your experience with practices of dress/undress, what it means for you, your thoughts, feelings and/or memories, struggles or triumphs that you consider relevant to this relationship.
Experiments:
None of the procedures used in this study are experimental in nature. Along with observation and participation, it relies on a process of dialogue between people.
Risks or Discomforts:
In any research project, researchers are required to anticipate risks or discomforts that might affect participation. In the context of this study, I believe such risks to be minimal. You may feel uncomfortable with the act of bringing a curious researcher into your home and into contact with your actual closet, the garments and stories that are materialized there. I/we will help you to minimize any discomfort by focusing on the connections between the particularities of your wardrobe and the broader social environment that shapes its contents. Most importantly, you are free to refuse to answer any particular question or to stop your participation at any time without penalty or loss of honorarium. You can request a copy of the transcript and an opportunity to change or add to your comments. Researchers will be available to discuss any questions or concerns that may arise post-interview.Benefits of the Study: On the academic side, the Wardrobe Study addresses significant gaps in the literature bases of several inter-connected academic disciplines. It demonstrates a unique entry point for qualitative enquiry, and a knowledge transfer from university to several key publics. From the community side, this research takes up the lives of disabled women on a subject from which they have been excluded, and in a way that enhances the social/political outcome of disability pride. Portraying disabled women as actively engaged with both fashion and the mundane business of dressing/undressing is a form of disability activism. The work positions disabled female bodies center-stage but without separating them/us from the material realities that are of concern to social model theorists of disability.Confidentiality: Only members of the research team will have access to the study data and the names of participants. Audiotapes, transcripts, field notes, disks and official documents will all be securely stored in a locked filing cabinet at the Institute for Disability Studies Research and Education, Ryerson University. After five years all raw data will be destroyed. Unless otherwise requested, pseudonyms will be used in all written reports. Support for Participation: This study provides participants with an honorarium of $50. It also covers any costs associated with your clothing journal and/or other reflections on clothing experience. It provides payment for any attendant care or communication aides that are necessary to support the interview. These payments recognize your contribution to the project.
Voluntary Nature of Participation:
Participation in this study is voluntary. Your choice of whether or not to participate will not influence your future relations with Ryerson University or the Ryerson Institute of Disability Studies. Questions:  Please ask if you have any questions about the research. You may contact Dr. Kathryn Church, at:

Phone: 416-979-5000 (4592)

Fax: 416-979-5209

Email: k3church@ryerson.ca

If you have questions regarding your rights as a human subject and participant in this study, you may contact the Ryerson University Research Ethics Board for information.

Research Ethics Board

C/O Office of Research Services

Ryerson University

350 Victoria Street

Toronto, Ontario M5B 2K3

Agreement:

Your signature below indicates that you have read the information in this agreement and have had a chance to ask any questions you have about the study. Your signature also indicates that you agree to be in the study and have been told that you can change your mind and withdraw your consent to participate at any time. You have been given a copy of this agreement.

You have been told that by signing this consent agreement you are not giving up any of your legal rights.

Name of Participant

Signature of Participant __________________________________ Date_________________

Signature of Investigator__________________________________ Date_________________

Appendix D: Orienting Questions for Interview

NOTE: Researchers will ask participants to open their closet doors and narrate the contents in whatever way is comfortable. It is the participant who leads the conversation with reference to specific garments and other objects that are present in this space. As with the telephone call, a prescribed set of questions controlled by the researcher will not activate the kind of stories that I want to elicit in this project. Thus, I have set out “probes” that serve to orient the researcher in this conversation.

  • Ask whether the participant has altered or reorganized the closet in any way in preparation for this interview. Discuss how and why.
  • Where is the closet with respect to the rest of the dwelling? Note important descriptors of its size and location.
  • What garments hang in the closet (or related cupboards)? In other words, develop a general sense of what is there. Note dresses/skirts as compared to slacks/pants, for example. Note dark colours as compared to bright.
  • For what purposes are they worn? Is there a wide range or a singular focus? Are there many or a few?
  • Note the organization of garments in the closet. What is ready to hand? What is pressed towards the back or out of sight?
  • Are all of the clothes store-bought? For those that are, where were they purchased? What is the general price range?
  • For those that are custom made, who was the maker? Why custom-made clothing? Probe here for the need for clothing alteration related to bodily difference or some other kind of preference. What is the person’s relationship to the maker? What is the value of these garments?
  • Whose choices or preferences do these garments reflect? Probe for presence/work of personal support workers, family (sisters, mothers), friends or other outside involvement.
  • If personally purchased, what considerations guided the choice? What qualities are valued by the wearer? Has this stayed consistent over time or have there been shifts in qualities that are valued and those that are not?
  • Are there items present that are not generally worn, or worn only for special occasions? Probe for the presence of particular favourite outfits or clothing that is emotionally ‘loaded.’ What relationships or situations are implicated here?
  • For clothing that is kept but no longer worn, why are these garments still present? Probe for “phases” of clothing expression and for shifts that have occurred or may be anticipated.  
  • Are there absences in the closet, i.e. garments that might be expected but are not present or have been hidden away? If so, what and why?
  • Note the presence of “disability aides” that may or may not be in use, and that may be seen as more than an aide (e.g. as an accessory).
  • What stories are evoked by the participant’s narration of her closet?