I was writing my first screenplay while shadowing my cousin on set when I first saw a barely noticeable dot, a smudge, in the centre of my sight. I remember thinking it was weird but deciding to just carry on, squinting at my screen as I typed.
Over the weeks that followed, that dot got bigger, and I realised it was not so much one dot as thousands of them, flashing. I flew home, and naively thought I could just go to Specsavers and get it fixed with glasses, but after months of hospital trips and tests, it became clear that wasn’t possible. At 19, I was diagnosed with hereditary optic neuropathy, a genetic condition that was causing me to lose my sight.
It was a confusing time. There was still quite a lot of uncertainty around exactly how much sight I would ultimately lose – the deterioration could result in me losing all my eyesight, or there was a chance my sight would stabilise, leaving me with partial sight.
After nine months, my sight stabilised. It was only at that point I started asking myself questions about what I could do, what I was capable of, what I could do with my career. I began second guessing not only if I would ever be able to even just make films or act, but how I was going to survive. It took a serious toll on my mental health, having a debilitating disease that limits my mobility and prevents me from being able to do things that others might take for granted.
That time really made me not just look inside myself, but look at the bigger picture too. Once I accepted my fate and believed that this had happened to me for a reason, I began to push myself to think ‘okay, let’s make the most of being here in this world.’ It didn’t happen overnight, but over a period of time I began to reprogram myself and reinvent myself, to realise I don’t have to be defined by this.
There aren’t a lot of advantages to having a mitochondrial disease. But I was starting to notice certain mental enhancements. My other senses were heightened – my sense of taste and touch became more sensitive, and my hearing became sharper, too. I have a vivid memory of walking down the street and starting to sing along to something on a car radio seconds before my friends were able to hear it at all. I think they thought I was Daredevil or something.
I became much more present with people than I ever was before I lost my sight. I’m no longer distracted by the visual nuances of what’s around me, I’m not checking facial reactions to what I’m saying, I’m not looking into people’s eyes to try and read them. Instead, I’m purely going off of what people are saying to me, how that’s making me feel, and what their spirit’s communicating to me. When I was talking to someone about how I was determined to make films, they didn’t say anything but I was talking and I felt them, and told them not to roll their eyes at me. “I thought you were blind?!” I remember them saying. I just felt it.
When I was first pitching my latest film, Lucid, I was getting rejected a lot because of my condition; I could feel producers and investors move away as soon as I brought up the fact that I was actually registered blind. In a way I don’t blame them, but, to me, having more diversity in the arts will only ever widen the landscape of our culture. People like myself, who have a sensory impairment, have a particular perspective on the world and more unique styles of storytelling.
Now I’m making films, I have enough partial peripheral sight to navigate a space and move. Sure I find myself sometimes tripping or bumping into something, but it’s not like I’m running around the set. The big heavy expensive equipment, I can see – it’s more that I might not be able to see a paperclip on the floor, or be able to read a script.
As for how I do my job? The truth is, in layman’s terms, the job of a film director is to translate the vision in his mind’s eye onto a screen for audiences. Now, my mind’s eye is not impaired, in any way. If anything, my imagination is more vivid than ever. My challenge is to translate what I’m seeing in my head, which is no different to any other director with full sight. And it’s to communicate what I’m seeing in my mind to the team around me, and that’s no different to any other director. Full sighted, partially sighted or legally blind like me, it’s all the same job.
The simplest way to put it is that, at the end of the day, movies aren’t made on set – films are made in prep. Talk to any Hollywood director, and they’ll agree. On the day, all you’re doing is executing the plan that’s already put in place and meticulously thought through with everyone on that team.
Fortunately, I find it very easy to delegate. Say a mic is dipping into frame, that’s not my job to spot. Say one of the actors’ hair is doing a funny thing, that’s hair and makeup. A lot of directors who might have full sight may be looking at every nuance, because most directors are control freaks by nature. But me, I can focus all my attention on the actors, and the atmosphere. I can’t be distracted by anything else – in fact it’s physically impossible for me to be distracted by anything else. So that does feel like it gives me an edge, and sometimes an advantage that other directors may not have because they can’t help but see things that are there. I have to give credit to my producing partner, Julia Varvara, who has always been an incredible supporter and always fought my corner
My dream is that one day my condition won’t be part of the conversation. I want to just be seen as an artist, and not as a differently-abled artist. But right now, I see my condition and my career as an opportunity to show people that having a sensory impairment isn’t a life sentence. You can do so much more than people give you credit for – if you reprogram your mind to think in a positive way.
And I want to change the mindset of not just the industry but how everyone in the world looks at disability. I just have to keep continuing to exceed expectations, and surprising people with what I’m capable of. Because only then can I become a reference point for other differently-abled artists, and help open more opportunities for them
To me, the only way that I can change that stigma is by leading by example and keep making more movies and keep breaking boundaries, and proving wrong the people in the industry that never gave me a chance.
As told to Charlie Lindlar
Adam Morse is director of Lucid, available to stream now