HIV/AIDS

 

While a testimonial culture exists among HIV-positive people, testimonials are understood and used in a variety of ways and the definition of what constitutes a testimonial can differ from one group or organization to another. Testimonials can be examined from multiple perspectives and used to further a range of goals: awareness-raising, education, provocation, social change, etc.

Working committee

Points of intersection among different testimonial cultures and among the different working committees are of particular interest to the committee on testimonials by people living with HIV/AIDS. The hope is that this will lead to the development of new approaches and training materials. Issues of concern to committee members include social support provided to people living with HIV/AIDS who give testimonials and the roles played by those who co-produce testimonials (social workers, journalists, researchers, etc.). Dissemination of results from the VIHSIBILITÉ research project through training sessions offered to the member organizations of COCQ-SIDA has been another focus. In addition, committee members have produced a DVD compilation of video testimonials by people living with HIV/AIDS.

Partnership to evaluate the impact of testimonials by people living with HIV/AIDS

What's the point of giving a public testimonial about living with HIV? Public testimonials are used as a social intervention strategy in the fight against discrimination and to broaden public understanding of the realities people living with HIV face. Nevertheless, it is sometimes difficult to capture the impacts of a public testimonial. Was the message understood? Will it be relayed in society? Does the testimonial have a positive impact, at short, medium or long term for the person who tells her story? For the public who listens? And for society at large?

These questions and more are currently being addressed by research partners from different horizons. Codirected Ken Monteith (COCQ-SIDA) and Maria Nengeh Mensah (UQAM), the project entitled "A partnership for evaluating the impact of testimonial by people living with HIV/AIDS (PLHA)" is funded by the Canadian Institutes for Health Research (CIHR). It brings together people who have experience giving public testimonials, researchers from UQAM, Condordia, Cégep régional de Lanaudière à Terrebonne , the Centre for Addiction and Mental Health and several community groups: GRIS-MontréalBLITSGAP-VIES, MIELS-QuébecMAINS Bas St-Laurent et AQPSUD.

As a Working Group, the team will conceptualize useful tool that can assess the impact and role of testimonials in social intervention as well as public awareness.

COCQ-SIDA's "Je suis séropo" awareness campaign

Launched on December 1st, 2012 on the occasion of World AIDS Day, this bold campaign introduces five people between the ages of 20 and 70 from different regions of Quebec who are living with HIV/AIDS. Also present on Facebook and Twitter, the goal of the campaign is to show that HIV-positive people are just like everyone else and have a role to play in society. Through web videos, each spokesperson talks about the campaign's theme, "C'est le VIH qu'il faut exclure pas les séropositifs" ("Let's keep AIDS away, not people living with HIV/AIDS"). Several interesting approaches were used for this project. Campaign spokespeople played a major role in creating materials and planning press conferences. From the initial decision to participate through to the final debrief after the launch of the campaign, each participant received ongoing support and coaching from a public relations consultant including training on how to speak to the media.

Testimonials in Remaides Québec

Published three times a year by COCQ-SIDA, Remaides Québec is an independent magazine for people living with or affected by HIV/AIDS and those working in the field of HIV/AIDS. A section of the magazine is devoted to testimonials. Other reporting also incorporates testimonials as does a column featuring the points of view of people living with HIV/AIDS on subjects of their choice. Selection of testimonials takes place during editorial committee meetings. Although most testimonials are written texts, contributors are also invited to express themselves in other ways: poetry, art work, photography, etc. Recording a testimonial and having it transcribed for publication is also possible. Contributors have several options for how they are identified (first name only, full name or pseudonym). The editorial committee also offers guidance throughout the process and the possibility of withdrawing a testimonial from circulation at any time.

Strengths and limitations of testimonials by people living with HIV/AIDS

Several community groups involving people living with HIV/AIDS participated in discussion activities organized by the Testimonial Cultures project, particularly during a study day that took place in November 2012. These discussions touched on different objectives and experiences related to giving testimonials, as well as the conditions under which testimonials are produced. The strengths and limitations of testimonials as a way to foster social change was a major point of discussion. Participants noted that testimonials can put a human face on social issues, which helps to raise awareness on an individual basis and is useful as a way to influence decision makers. Making personal histories public creates an opportunity for dialogue. Moreover, testimonials can have a unifying effect that encourages a greater sense of solidarity within a community. In terms of limitations, media testimonials often communicate an oversimplification of personal experiences that are at times very complex. The tendency to privilege endearing testimonials and standardized messages in media coverage makes it difficult to see that those who give these accounts do not necessarily represent the larger group.

In Canada, because people living with HIV/AIDS who do not disclose their HIV status to sexual partners may be subject to criminal prosecution, another major challenge in the use of testimonials is the growing impact of HIV-related legal issues. For those who give testimonials, disclosing certain elements of their story must now be carefully considered in light of possibly serious legal consequences.

VIHSIBILITÉ: previous research projects on the testimonial culture of people living with HIV/AIDS

VIHSIBILITÉ III: Providing social support to people living with HIV/AIDS who give testimonials: an ethical and socially responsible approach. Previous research (phases I and II of the VIHSIBILITÉ project) raised an important issue: there is a recurrent gap between the needs of HIV-positive people who give public testimonials and the tools available to the people who provide them with support and accompaniment. This educational and knowledge-transfer project (2011-2013) was aimed at supporting people who give testimonials about their HIV-positive status and to empower the people who accompany them in this process. An inventory of practices used by different community organizations across Quebec to co-produce public testimonials led to the publication of The Megaphone (Le Porte-voix), an educational and training document that describes various ways in which social support can be provided to HIV-positive people who give public testimonials about their experiences. The project also involved a training tour across Quebec during which over 200 people participated in discussion workshops on the goals, potentially positive or negative consequences, and ethical issues that can arise when people give public testimonials.

VIHSIBILITÉ II: Understanding media testimonials by women and men living with HIV/AIDS from a cultural perspective: This action research project (2008-2011) focused on women and men living with HIV/AIDS who give public testimonials about their experience in the media or through artistic expression. Research activities included conducting individual interviews on the experience of giving a testimonial, production of a DVD compilation of video testimonials, and a study day for people living with HIV/AIDS and representatives from various constituencies (community, institutions, media, the arts) to reflect as a group on the conditions under which testimonials are produced and received. An article on findings from this project was published in 2012 in the International Journal of Cultural Studies.

VIHSIBILITÉ I: Comparative analysis of the visibility of women and men living with HIV/AIDS in Quebec media discourse from 1982 to 2004: This action research project (2005-2008) looked at the evolution of newspaper coverage of HIV/AIDS in Quebec beginning in 1982, comparing the visibility of men in media discourse to that of women, and exploring the ways in which people and organizations involved in the fight against HIV/AIDS interpret and negotiate the messages put into circulation by the media. A study day was organized to stimulate reflection and broaden the debate on the visibility of people living with HIV/AIDS in print media in Quebec. In 2008, the outcomes of this project were presented in an article published in AIDS Care as well as on the Radio-Canada program Macadam Tribus.

Photos: Posters from COCQ-SIDA'S jesuisseropo.org campaign; collage of newspaper headlines, VIHsiblilté project.