Life with Multiple Sclerosis – new exhibition uncovers stories

Stories behind poignant photographs taken by people from LGBT communities who live with multiple sclerosis were told at the launch of a new exhibition at De Montfort University Leicester (DMU).

The exhibition, put together by PhD scholar Periklis Papaloukas, was held at the Vijay Patel Gallery as part of #DMUEngage, which aims to maximise the impact of research. 
People from all over the world contributed images. They ranged from a photograph of a garden which has been a focal point for one person since their diagnosis to a picture of a man’s partner putting out the rubbish because they cannot lift the bin bags any more.

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Each is a snapshot into their lives and their feelings of living with MS, a progressive neurological disorder .You can see the photographs on Periklis’ project here.

The event was staged as part of De Montfort University Leicester’s (DMU) #DMUEngage project which awarded researchers on eight different projects £2,000 each in recognition of their impact on the local, or global, community.

Periklis won the Graduate School category for his study, which culminated in the exhibition on Friday night. People who contributed photographs were there on video and in person to talk about what the research had meant to them.

He recruited 28 participants from diverse international backgrounds, from countries such as the the UK and US to Australia and South Africa. They have provided him with nearly 50 hours of in-depth interviews and 180 photographs. The participants were contacted through websites, via social media and other methods, including liaising with support organisations such as the MS Society.

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Alex, a trans man from Canada, recorded a message for the event. He said: “I thought I was the only trans man like me with MS. I came to realise that having your body as the enemy is the natural progression of life. When you get older, you’re going to go through many of the things that people with MS already go through.”

Kai Xavier, from the US, made a YouTube video about the things he had learned since being told he had MS. He said:  “It’s not often someone asks you about your MS and listens for as long as Periklis does. Participating in this project made me realise the unconditional love I have for my cats, my Buddhism and my local LGBT community and of course my music.”

Janet shared her experience of living with MS as a lesbian, she felt her sexuality and health status merged, making her a minority within a minority. She reported that because LGBT communities are often underfunded, their meeting places were often inaccessible to the disabled. She said: “I don’t think the LGBTQ community has my back”.

Liz talked about how she was diagnosed with an aggressive form of MS just six months after coming out. She said: “I found it difficult coming to terms with both of them. Having to come out and explain all the time. I thought this research was really interesting, It gave me a chance to think about what it means for me.”

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Periklis said: “I think this event has proven that collaborative research in psychology can engage research participants with the public. These photo-testimonials will hopefully initiate discussions around issues LGBT persons living with MS are facing, and help towards social realisations and change. ”

#DMUengage challenges researchers and postgraduate students to devise innovative ways in which they can share their research with the public, fellow academics and students.

It is a collaboration between the Research Business and Innovation (RBI) directorate, #DMUglobal, The Graduate School, Pro Vice-Chancellor for Research and Innovation and #DMUlocal, the university’s public engagement team and was opened to academics and postgraduate research students.