A Social Geography of Masculinity & Multiple Sclerosis


Study Title: A Social Geography of Masculinity & Multiple Sclerosis
Rationale : In Canada, thirteen percent of men live with some form of disability and/or chronic illness. Yet we know relatively little about their lived experiences of masculinity. In part, this lack of understanding reflects enduring stereotypes about what it means to be a ‘real man’ where disability and chronic illness have been positioned in opposition to valued forms of masculinity. This can produce a dilemma for men living with chronic illness/ disability; should they try to approximate a culturally valued ‘able-bodied’ masculinity at home, at work or in public space? Alternatively, can they find other ways be a man that better reflect their mental, physical, sensory and cognitive capacities? In this research we are specifically interested in the views and experiences of men living with multiple sclerosis (MS). We will use a use a combination of one-on-one interviews and visual arts methodologies to capture the varied ways they negotiate masculinity in their everyday lives. Our research will provide a more nuanced understanding of the ways in which MS and masculinity intersect to shape what men do and how they understand themselves in relation to broader gender norms. We will mobilize this knowledge for an audience of support providers, family members, advocates, service organizations and other interested parties. The precise nature of the knowledge mobilization process will be designed collaboratively with participants to identify outputs (e.g., reports, stories, posters, exhibits, oral presentations) that could be used to convey the implications of the research for multiple audiences.
Study Description: The research involve two stages of data collection. First, we will ask individuals who identify as men to take part in one-on-one interviews. Given ongoing requirements for social distancing, interviews will be completed over the telephone. The interviews will ask participants about what it means to be a man in the settings, activities and relationships and how this is influenced by their experiences of Multiple Sclerosis.

Interviews will be audio-taped (with permission), will take about 90 minutes to complete and can be completed at a time and date of the participant’s choosing. After the interview, we’ll send a transcript of what was said to each participant and we may ask them for a shorter follow-up telephone interview if we need to clarify some themes and topics.

Second, we will ask men to take part in an arts activity where they will create a visual image that captures their experiences of being a man. Again, given the requirements for social distancing this activity will be completed by participants at home. We can mail art supplies to participants where necessary. We also have an arts facilitator on the research team who can provide help with activity over the Zoom videoconferencing platform. Once participants have created a picture, we will ask them to describe it to us in a short interview. This interview can take place using Zoom or via telephone depending on the participant’s preference.

The research is confidential and men will be provided with honorariums for their participation in the different stages of the research.
Recruitment Dates: 2020-06-01 to 2020-10-31
Who can participate: Individuals who identify as men, who are over the age of 18, who have been diagnosed with MS, who can speak English fluently, and who live in the Greater Toronto and Hamilton Area (GTHA) are eligible to participate on a first come, first served basis. 
Location of Trial: McMaster University
Contact Information: Dr. Robert Wilton
Trial Funding: Social Science and Humanities Research Council