You & I

I was 17 when I was diagnosed with FSHD. Sadly, in what’s bound to be a deal breaker for unlikely Hollywood suitors, I can hardly remember any details of the occasion. After they explained how muscular dystrophies are degenerative, the rest of the day became a blur. I have vague memories of my parents crying and being disappointed that I couldn’t muster a tear. I can loosely recall asking some quite adult questions about donating blood and having kids. In fact, the only vivid memory I have is of the well-meaning consultant attempting to reassure me (I think) by saying it’d be his “muscular dystrophy of choice”. My cliched male response in refusing to discuss the questions and feelings that plagued me for the following 8 years was uncharacteristic but at the time, seemed like the only option. Perpetrated by an absurd belief that if I ignored the problems for long enough, they’d go away. Sadly, disabilities don’t disappear. Eight years of stubborn silence demands a toll, especially when the topics you’re hiding from are becoming more prevalent and problematic. The price I paid was an ever worsening state of mental health. I slowly and surely became more insular and anxious. I’m not embarrassed to admit that I lived with long bouts of depression. I struggled to see a positive outcome to what seemed, at the time, to be an increasingly hopeless situation. Living with a disability can have this effect. Society, at large, treats those who live with debilities as lessers; ignored for the best part, discriminated against and subjected to vile comments for the worst. The engrained ableist attitudes we all harbour to a certain extent came flooding to the surface as soon as I was diagnosed. I internally questioned whether life was worth living if it was to be lived with a disability. I made ridiculous rules which I swore to abide by. I refused to pursue romantic relationships whilst retreating from platonic ones. I abandoned the hope of ever fathering children or raising a family. I was so petrified of being a burden, having to rely on others to exist, that I pledged I’d never allow it to come to that stage and suicidal thoughts were common place. I think I can count on one hand those I talked to about my disability during this time. My parents in particular begged me to be more open about the topic but in response to a traumatic diagnosis, I stubbornly persisted with my silence. I’m incredibly fortunate that one of the few people I opened up to regarding my feelings on the matter happened to study psychology. They could see how difficult I found discussing the questions that plagued me and suggested another form of action.

Posturing

Scarred

Stripped

I should probably have mentioned that there were two constants during these eight years of silence, the first was my disability and the second, photography. My dad had bought me a camera when I was 18, recovering from an operation that was meant to ease some of my condition’s atrophic side effects. Once I’d stopped being bed bound I began taking photos. I didn’t really have much passion for it back then, it was more like something to do, a way to pass the time. It enabled me to marginally reintegrate into some of the communities I’d become distant from, looking enviously through the lens as my friends happily enjoyed the activities I’d once been able to join them in doing. I photographed surfers and skaters, my brothers’ football matches and wildlife. The images didn’t really speak of much but then again, neither did I.

Fast forward eight years and the hobby had sustained in a way that very few other things in my life had. It had become my comfort blanket of sorts, a reason to venture out into wider society. It was an enabler for me and was one of the few things in my life I was truly passionate about. When my friend suggested that photography could be the antidote to my struggles to identify with a sense of self I felt like I should explore. I began by taking self portraits, focusing on the elements of my body I felt the least amount of love for or which reminded me most of my differences. The process slowly became a cathartic ritual, performed in solitude. It forced me to confront elements of myself that I’d long ignored, providing space to consider things I’d masked for the previous eight years.

For the first two and a half years, the project remained a secret, existing for the sole purpose of mapping moods and trying to spot signs of the inevitable dystrophy in progress. The indexicality that I believed self-portraiture offered was critical in creating a safe space within which I could produce work. It acted as an opening, a foot in the previously locked door through which other ideas have snuck. Although it remains a critical element of the series, the parameters for work created have widened significantly since those beginnings. As time passed, the project developed from merely questioning my relationship with my physical self to encapsulating more theoretical questionings of the struggles that come with being disabled and the ableist attitudes that underpin them. The projects become far more rounded regarding representing the lived disabled experience, spanning aspects such as relationships, parenthood, mental health and purpose.

Despite clear improvements in how people living with disabilities are treated by their able-bodied peers, it's disheartening to see the prejudiced conditions we still contend with. Limited exposure to normalised disability is partially responsible for shaping the public perspective. Normalising disability requires telling mundane stories, creating grey tones between polarised, stereotypical black and white representations.

You & I

Posturing

Scarred

Stripped

Enveloped

Old Enemy

Elevator

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