Who we are
The photo-exhibition and the accompanied engagement event are part of a PhD research project that explores the psycho-social experience of lesbian, gay, bisexual, and trans* (LGBT) individuals living with multiple sclerosis (MS). It is led by Periklis Papaloukas, a PhD candidate at De Montfort University (DMU) in Leicester and supervised by Professor Julie Fish and Dr Iain Williamson. The study used an innovative methodology combining interviews and photographs. Twenty-eight individuals from all over the world (UK, US, Australia, Canada, Sweden, South Africa and Germany) took part with the majority of the participants providing photographs they created. Those images were described and fully explained in interviews with Periklis. The individuals represent the diversity of the LGBT and MS communities. Persons self-identifying as gay, lesbian, bisexual, queer, cisgender, transgender, and gender-fluid persons took part and they are diagnosed with primary progressive, secondary progressive, and relapsing remitting MS.
The photographs, the exhibits and the accompanied captions and descriptions were not generated as mere art objects, but rather as tools of expressing and sharing a lifeworld which is profoundly embedded with the notions of identity, social interconnectedness, and illness reality. Issues of disability, accessibility, visibility and invisibility of the MS, its progression and day-to-day issues of living are explored. These conceptual experiences, worries, hopes and aspirations are the same for all individuals living with MS, irrespective of sexuality or gender-identity. At the same time, the specific understandings of an LGBT life merged with an MS identity and the implications of the intersection of identities were explored through the photographs and the exhibits. The diversity of the LGBT communities was also presented in the photos and provided an insight on the similarities and the differences of the LGBT communities spectrum.
This project was initiated because there is a considerable lack of research regarding LGBT communities and chronic illness. There is not much research beyond HIV/AIDS in a non-heteronormative context. Chronic illnesses are prolonged physical conditions which have considerable impacts on persons living with those. However, the term chronic condition is vague and encompasses illnesses which are considerably different if we compare them. Cancer, HIV/AIDS, rheumatoid arthritis, sickle cell condition, and multiple sclerosis (MS) are all chronic illnesses. They are all special though connoting particular meanings. For example, living with cancer is not the same as living with MS. MS is an extremely individualised condition with an unpredictable nature with specific physiological impacts and symptoms which cause particular psychosocial impacts. At the same time, research has shown that there are specific health inequalities for LGBT individuals because of issues of homophobia/heterosexism (discrimination due to sexuality and/or gender identity). So, what happens when those life experiences meet?
A health experience in the form of an unpredictable chronic illness that MS is, it is best described by the experiential experts themselves; the LGBT persons living with MS. So, the PhD project has taken the qualitative methodology route using interviews with which participants talked about what is important to them. The photographic aspect came from the same fundamental belief of collaboration and co-creation of knowledge. The visual power of the image was used not only to help some of the participants to make their points more poignant but also because living in a visual world the photographs are ideal in raising awareness and spreading knowledge about LGBT persons living with MS, beyond academia and research circles. These notions led to the exhibition and this website in which you can explore a virtual version of the exhibition and learn more about the topic.