Rose Ayling-Ellis has revealed she didn't watch Strictly Come Dancing before she won the show because the subtitles were so poor - and urged TV bosses to make widespread changes saying "I am done with being the token deaf character".
The 27-year-old former EastEnders actor hit out at a lack of inclusion for deaf actors and viewers in the TV industry.
And addressing the Edinburgh TV Festival in the Alternative Mactaggart speech she said she had felt "lonely" being one of few deaf actors and also "petrified" that criticising conditions could lead to her being replaced on jobs.
On Strictly, which she won in December last year with pro partner Giovanni Pernice, Rose said: "When Strictly approached me, to tell you the truth, I didn’t get excited straight away. I had become very wary of the industry.
“Every job I have been given, I have always been the only deaf person and it always comes with its challenges and issues. I knew a big part of why Strictly approached me because I am deaf.
“I am an actress, so doing a reality show was something I hadn’t previously considered, however I could see that the opportunity was huge and turning it down felt wrong.
“Saying ‘no’ is a privilege most people take for granted, I knew I would be the first deaf dancer and saying ‘no’ to that felt wrong.
“This was a big platform, I knew how popular Strictly was, so, in the end I said yes - I would do it for the deaf community. Little did I know how magical and beautiful it would also be for me personally.
"The first thing Strictly did was set up a meeting on Zoom to get to know me and they learnt very quickly, as you likely have today, that I don’t have a filter.
“One of the first things they asked me was if I watch the show; I told them no, simply because I couldn’t – it was not accessible to me.
“The live subtitles were too slow, leaving me always a step behind and excluded from the jokes – even on iPlayer the subtitles had not been corrected.
"I told them from the start exactly what I needed and that if I was going to be a part of the show, it was vital my deaf culture and identity was part of it too.
“I wanted my deafness to be present, but not overly emotional or inspirational."
Rose said Strictly addressed the problems and issues she raised and she went on to have a great time on the series. But since she won, she has found things challenging.
She said: "Although it was a beautiful experience, the aftermath hasn’t always been. I was thrown to suddenly find myself considered a deaf pioneer, the poster girl for the deaf community.
“Like I’ve said, it’s fantastic for younger generations to have someone to be able to look up to, which is something I never had.
“However, it came with new pressures that I’d never experienced before. For instance, I have heard about programmes developed with a view to exploring deaf culture, being cancelled because I decided not to be a part of them.
“This attitude of 'if Rose isn’t doing it, we don’t want to do it' puts massive pressure on me.
"For me, saying no meant other deaf people lost opportunities too and it leaves me feeling guilty and conflicted. My appearance on Strictly should have encouraged people to seek out other deaf talent, yet how many deaf characters have we seen on TV since?
“It’s not enough to only elevate me, there are so many talented deaf people out there and thousands of amazing deaf stories to be told.
“It’s not enough to make me a pioneer on my own without allowing other deaf people to have a platform, and not only in front of a camera or audience, but behind the scenes too."
Rose also was critical of her experience working on EastEnders and other TV shows and suggested TV programmes would all benefit from having deaf consultants on board.
She played the role of Frankie Lewis in Albert Square for three years.
She said: "I often receive a script that it is not quite right. They will write my characters who are in a room with a big group of people arguing with each other, following everything that is being said and even repeating things back to them.
“Or they will write my character as lipreading someone from impossibly far away - like I have a superpower, which is not realistic at all! I am playing a deaf character that is either written as a hearing person, or as a deaf stereotype.
“Even though I am not paid to do the extra work on top of my job, I try to fix the problem on set and a lot of the time people are very supportive and make changes based on my advice. But the problem is, it doesn't get added to the script.
“So, when it comes to editing, the editor follows the original script and the changes I make are left out of the final cut. This isn’t a one off, it happens to me every week.
“I’m constantly fighting to have my deaf identity represented but end up being made to feel like my voice isn’t heard – I end up feeling torn. Torn between representing the deaf community and telling our story but wanting to have a career with good working relationships.
"I have asked countless times for a deaf consultant to be brought in to work with the writing teams, to help advise on ways to incorporate and respect deaf culture.
“You can’t write about deaf people without a deaf person’s input. Nothing about us, without us. A consultant should be involved at all stages when working with deaf people.
“However, due to the speed of the working style and a high turnover of staff, the importance of consultants is often forgotten."
Looking to the future, she said she was hoping to develop opportunities for the deaf community.
She said: "I have created and am currently developing a new comedy-drama series that will be totally bilingual and female focused.
“Whatever is next for me, I know one thing for sure – I am done with being the token deaf character, I believe that diverse, rich, and fascinating deaf stories are ready to go mainstream and that we can do this, together.
"Let’s create together, to normalise deaf and disabled people on screen.
“I can only dream of the day where seeing other disabled people on screen isn’t a rare sight, or where I don’t get excited at the sight of other disabled people working behind the screen."
