When I started losing my sight I decided to hide it from my work

I can remember the first time it happened like it was yesterday – the moment I realised that my eyes were failing me.

The support band had just finished, and my team’s 30-minute slot to prepare for the headline act I was working with had begun. I entered the Southampton Guildhall stage and immediately fired up my radio to my team, asking: ‘Can we please get more lighting on stage?’

I was sure something looked different, my eyesight had always been perfect but suddenly everything was dark; I had no awareness of what was around me. My team radioed back to tell me the lights were on the same pre-set they had been for every other night of the tour. 

Confused and scared as to why I was struggling to see what they could, I fumbled through the rest of my tasks as best I could, smashing my shin on an unseen drum riser in the process. Afterwards, I returned to the bright backstage corridor and immediately called my family. 

I’d always known about a hereditary eye condition that ran in my family called retinitis pigmentosa (RP) – a genetic condition causing gradual loss of vision, often leading to total blindness. I’d only ever known my grandad with extremely low vision and knew there was always a chance I could inherit it, but since I’d reached my thirties without any symptoms, I thought I had escaped it. Except after that experience, I think I knew my fate straight away. Shortly after the tour I got the diagnosis I had dreaded.

It was the beginning of what became the new normal for me, as a tour manager. I struggled with my, once simple, day-to-day tasks. 

In its earliest stages, RP predominantly affects night vision, so you can imagine how my diagnosis felt for someone in my job, working primarily in dark backstage environments. Everything from that point was hard, but this was my livelihood, so I had to get through it.  

I also had to stop driving, which essentially cut my work in half – some bands I toured with could afford the luxury of tour buses or additional drivers, but others relied on the tour manager to drive the van.

So how did I broach the situation with the artists and promoters who employed me?  

I didn’t. In my head, I thought: ‘Why would I tell anyone?’ and: ‘What will they think if they hear the word ‘disability’?’

Instead, I chose to struggle through, thinking that if I could generally watch my step a bit more, I could avoid arousing suspicions. It’s only now that I think back and question my thought process.

I had the misfortune of acquiring a disease that one day could lead to total blindness, luckily I was surrounded by good people who I believe would have supported me. I still felt as if I had to hide my diagnosis due to some sort of pre-programmed negative connotations of how disability is viewed. It’s impossible to know where that came from, but I can only assume it was some sort of internalised ableism. I don’t think I’d ever had conversations with anyone about disability at that point, it felt like a taboo. 

Effectively, I was worried I’d appear weak.

This state of denial lasted a long time, but as my eyes deteriorated over the course of a few years I knew I needed a new plan – it just wasn’t feasible to be on the road for the rest of my career. I started to make moves into artist management, beginning when a couple of the clients I tour-managed were in between managers and asked me to hold the fort. One of them was Viktoria Modesta, known as the world’s first bionic pop artist. Viktoria and I were talking about disability every day, but I didn’t tell her about my eyes for the first three years we worked together.

I planned to build up a new artist management business while battling through a few more years of tour management, but then the pandemic hit and wiped out all live gigs, and in a strange way, also gave me the time out of work to really come to terms with my condition.

It was during this downtime that something twigged in me – I was already managing one of the most successful disabled artists while adapting to life with my own condition. If I were to take the full-time plunge into artist management, then why not focus on working with artists with disabilities, and trying to help increase the representation of disabled artists in pop culture? Until this point it wasn’t something I ever considered. Before Viktoria, I had never worked with artists with a disability, but this was a real lightbulb moment.

Arts Council England was instrumental in the set-up of my business, Harbourside Management, and funded me to run a consultation with people with disabilities working in the music industry. The goal of the consultation was to look at the difficulties surrounding disclosure, and if that were the reason that a recent study had discovered that less than 2% of the music industry identified as disabled. Could it be that the statistics were actually just skewed and there were more people like me working in the industry, but choosing not to disclose?

I’m not the only one working in the music industry who doesn’t find it easy to say they have a disability

After surveying nearly 150 professionals in the music industry, I recently published the results. They show that of the 71% of respondents who considered themselves to have a non-visible disability, only 12% ‘always’ disclose their disability to those they work with, and 69% have put their health and safety at risk while working as a result.

These statistics say it all – I’m not the only one working in the music industry who doesn’t find it easy to say they have a disability. I could have made my touring career much more comfortable if I’d felt able to tell people I needed extra help here and there.

My connotations of disability as a non-disabled person were completely different to those I have now as a person with an acquired disability, and that is the biggest problem. 

There is plenty of work to be done to break down the stigma surrounding disability within the music industry – and beyond. If we can do that, then perhaps in future more people will feel comfortable disclosing their conditions and get the support they need to thrive. 

While my investigation was to look at the music industry’s apparent diversity gap, it is clearly likely that people in other industries are avoiding disclosure in the workplace for fear of discrimination. 

For me, now I feel much more at ease with myself. My work is behind a brightly lit desk and I don’t wake up with the daily dread I used to get knowing I’d be working in a dark music venue.

My earnings are ultimately down, going from being an experienced and busy tour manager to the business owner of a start-up has its impact. But I’d take it any day over feeling like I am working in an unsustainable environment. I used to think I would just work on the road until I literally couldn’t hide my condition anymore. I am glad I made a positive decision for myself before it came to that. 

I am trying to use my story to drive positive change in the industry. Shortly after I set up the business I was invited to sit on the BPI’s Equity and Justice Advisory Group, a group of music professionals helping to drive progression in diversity in the music business. My role is to fly the flag for the underrepresentation of disability in the mainstream music scene. While there are strong divisions of disability art in this country there are nowhere near enough artists with disabilities in pop culture.

By accepting and opening up about my diagnosis and talking about it I find an overwhelming sense of freedom. A huge part of this process has been me coming to terms with my fate and processing what the future holds. 

Four months ago I had my first baby, a boy. There is a 50% chance he will inherit my RP, and if he does eventually I want him to find courage in seeing how I am using it to drive positive change.

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