I was born with a skin condition called Epidermolysis Bullosa. Having this condition, which the NHS describes as a ‘rare inherited skin disorder that causes the skin to become very fragile’, means I have constant pain and endure daily dressing changes. I have burn-like wounds that heal then break again in an unpredictable cycle.
Whether it’s from people I know or from complete strangers on social media, being from a British-Pakistani family, in my culture something I’m always asked is ‘will you be cured?’. Throughout the years, I’ve politely listened, smiled and changed the subject when people attempt to offer their expert advice. Unfortunately, being disabled in any culture you are seen as someone who is limited, someone who may not achieve a lot in life. When I was younger my parents were asked “can she go to school; will she be able to work?”. It was incredibly frustrating but determined to prove people wrong, I studied history and graduated from the University of Birmingham, and now work as a celebrity journalist interviewing A list actors.
In most Asian families, education is regarded as a high priority, even though I had a disability, I still felt that cultural pressure to aim high when it came to education. I loved my University experience but I experienced mental health problems in my 20s worrying that I wouldn’t meet a man who’d accept my skin condition. I quickly came to realise that I had not accepted it myself; coping with pain and various surgeries for years doesn’t mean accepting your reality.
Luckily doing a job I love, where I have a purpose and where I feel empowered by my disability, has empowered me. The experience has added to my self-worth and given me new challenges in life. I had a really powerful, liberating experience when I was interviewing Timothée Chalamet on the red-carpet at the London Film Festival. His publicist noticed I looked a bit different; she came up to me and said, “you can have the interview with Timothée”. I was the only journalist in that particular press pen to get an interview with him. It was a moment in my life which made feel actually OK with being disabled.
Something my job in the entertainment industry has taught me is that representation and seeing oneself in films, TV shows and music is so important for people with disabilities. Oscar nominee Riz Ahmed’s film, Sound of Metal, has shown a story of acceptance and positivity in being disabled. Riz plays Ruben, a heavy metal drummer who gradually becomes deaf. It is one of the rare films which doesn’t show the stereotypical narrative of the suffering disabled person who harbours resentment. Instead, disability is handled in a sensitive but empowering light.
Despite this leap forward for representation, Hollywood still has a long way to go. There needs to be more women with disabilities in lead roles on our screens. It is important to acknowledge the lack of disabled representation is not just an Asian problem, it’s a societal problem. Films like Sound Of Metal are helping bring the conversation of disability to the masses and we need to keep the conversation of disability constantly alive in mainstream media, so women like myself have the platform to speak openly about our truths.
