‘My colleagues ignored me for a year’: what it’s really like to work in TV as a disabled person

While there has been improvement in disability representation in recent years, it’s still common to switch on the TV and only see non-disabled people. In the UK, 22% of people have a disability, yet disabled talent makes up just 7.8% of the people we see on screen and 5.2% behind the camera.

The Guardian has spoken to a number of disabled professionals to hear what it’s really like to be disabled in British TV. Some are famous faces; others work behind the scenes. Here, five disabled people tell all.

Related: Actors ‘told they’re too disabled’ for disabled roles in UK television

The presenter

When you’re being used for entertainment as a disabled person, you feel no better than a freak in a circus show. When I started out in television, as a person with a visible disability, I was asked so many invasive questions. One director asked me if I had sex with my mobility aid.

I have gone without food and water on location for fear of an accident when there are no disabled facilities. I have guzzled painkillers to keep up with the long hours and run myself into the ground with call times that never take into account that my body isn’t the same as everyone else’s.

I was once passed up for a job, and when I was told about it, the executive said: “Not to worry, we will always need ‘wheelchairs’ on TV.” In the past, I’ve been asked to work for free, and yet the crew around me – all non-disabled men – weren’t. There’s no one to turn to when you feel discrimination; it is considered part of the job.

There’s no one to turn to when you feel discrimination – it’s considered part of the job

It’s no secret that people like me are used to tick boxes. If someone has a meeting with us, even if that meeting doesn’t go anywhere, it counts towards a diversity and inclusion quota. Tokenism is rife. It’s very hard for your mental health. I see other minority groups being given air time and creating cutting-edge content, but disability is still poorly represented.

I have only recently started to notice disabled people working around me, but rarely in roles of authority. TV has a responsibility to educate the wider public. But how can it when the people at the top have little to no lived experience of being disabled themselves?

The producer

I’ve had moments of despair in my job – the hundreds of times I’ve not been able to go to the toilet because I can’t find an accessible loo. It’s basic but it is never thought about.

Often, when I meet someone for the first time they make snap judgments, from assuming I’m on work experience to never directly addressing questions at me. It’s not their fault, but it takes its toll and is exhausting. I have to work harder and faster than my non-disabled peers just to be considered an equal. I’m pretty sure I’m the only person with a visible disability working in my role in my industry.

People rarely ask what support I may need, perhaps because they’re embarrassed or feel awkward. I have lost out on jobs because they are not accessible. The offices are upstairs with no lift, and they are not able or willing to move them downstairs.

But I’ve also been offered opportunities that as a child I could never have dreamed of, and that is mainly down to getting to work with some brilliant people. People who will do whatever is needed to make my environment as accessible as it can be.

The actor

I’ve been acting in television for 25 years. I remember early in my career I was on an ITV series’ read-through that included a wheelchair-using actor, but it was on the third floor of an inaccessible building. No one mentioned it. When I tried to ask an assistant producer how he was going to attend, the wheelchair-user told me to be quiet. He didn’t want to be known as a troublemaker. It was a reflection of a cruel time.

I’ve worked in telly for more than 20 years now and have seen my non-disabled peers surpass me at every turn

There have been great moments, too. In 2011, I got six weeks on a big Irish soap. I was equal, had respect, no one questioned anything about my impairment. I did the first ever kiss between a non-disabled and disabled character on Irish telly, and the whole thing was an oasis. Around the same time, some people I know had a meeting to pitch a Christmas drama about a wheelchair-user and their family. The TV exec turned it down. “No wheelchairs at Christmas,” they said.

But we’re not treated like special aliens any more, or as if people are doing us a favour by putting us in their work. The advent of disability storylines actually written by disabled writers has inevitably meant great improvements. These days it genuinely feels that we belong there as much as anyone else.

The performer

Midway through my career, I got a coveted place on one of the main broadcaster’s diversity schemes. I was there as a disabled person and a gay person – a double whammy for the tick boxes. The “prize” was a paid entry-level job at a prestigious production company. My first placement was in the development team, comprising five young guys and one older bloke closer to my age. On my first day, after a reluctant “hello”, communication was kept to a minimum. That continued for the entire time. We were in an open-plan office, all sitting face to face along a two-metre desk. There was no ignoring me, the only wheelchair-using woman at the table. But they did ignore me. They rendered me invisible. I was never invited out for lunch or to the pub. I’d eat alone or with my PA, and my anxiety shot through the roof. The manager who’d placed me there suggested it was my responsibility to fit in better. After my year with that company, I urgently needed mental health treatment. It was the worst year of my life.

Later, I found out why I was treated so badly. I had been allocated a place at the communal desk because it had easier access for my wheelchair. That space had belonged to the older bloke in the team, who wasn’t happy he’d had to give up “his” desk for a disabled newbie. He encouraged the others to shun me. I decided never to work in an office again.

The director

One of the reasons I started in television was because I never saw people like me. Little did I know I was setting myself up for a lifetime of frustration. I’ve worked in telly for more than 20 years and have seen my non-disabled peers surpass me at every turn.

I spent my early years crisscrossing between disabled and mainstream television, often in tokenistic roles. In mainstream TV, I have to fight for every reasonable adjustment I need – and frequently lose. Once, I was given a desk space removed from the rest of the team, which meant I was often out of the loop. I asked why I wasn’t invited to senior external meetings and was told it was because there wasn’t room to house me. One well-meaning colleague asked if she could send my medical history round the team so they’d have a better understanding of how to work with me.

We’ve had a senior-level person say the only reason we got a commission was because our programme was a public service and therefore it was their “duty”. Whenever disabled talent is mentioned they’re always too niche, too boring or don’t look “disabled enough”/look “too disabled”. There’s sexist and racial bias, too. Time and time again I’ve been passed up for jobs in favour of a white disabled male – often someone “less” disabled than me. It’s worse for disabled women of colour.

For every television bully I meet, there are 20 others who will one day champion me and other disabled people up to senior levels. But I won’t lie: the waiting is hard and it erodes your self-worth.

Over the past couple of years I’ve seen change coming, but it’s incessantly slow. Disabled people are starting to push back and say this isn’t good enough, and it feels like broadcasters are starting to listen. We need disabled people visible at every level: directing, commissioning, running, balancing the budgets and dazzling onscreen. When that happens, it will be magical.