‘The world isn’t built for people like us’: Campaigners fight for disabled equality

In the UK, one in four people are disabled, and yet, those living with a disability are more likely to be overlooked for job positions, experience abusive behaviour, and be neglected on public transport.

But, two Winchester locals, Celia Chartres-Aris and Jet Gates, are challenging these issues which they refer to as being “a violation of human rights.”

As a teenager, Mrs Chartres-Aris, 27, was diagnosed with loeys-dietz syndrome, a rare genetic disorder which affects around 1 in 50,000 people. The condition has left Celia living with multiple organ failure, as well as unable to eat or drink.

“Having a rare illness is utterly isolating.

“You just want to shout, ‘nobody understands me!’ Feeling like that is a very hard thing to deal with.

“I was always made to feel like I am the problem, but I am not.

“This world wasn’t designed for people like me.

“We’re the biggest minority group in the world, so why are we so behind on this fight for representation and equality?”

Both online and in person, Mrs Chartres-Aris has received abuse over her disability, being called “a freak of nature” and “a drain on the NHS.” On several occasions, she has received messages on social media telling her to end her own life.

“I’ve had grown men shouting at me in the streets, pulling on the tubes sewn into my heart. It hurts. You cannot escape it. I am so much more than [my illness], but it is all that people see.”

After graduating from Royal Holloway in 2018 with a degree in law, Mrs Chartres-Aris became bed bound as a result of her chronic pain. During this period, she suffered from her mental health, having never been offered any emotional support by professionals following her diagnosis and deteriorating health

“Living with this weight on top of you that you are effectively dying and have multiple organ failure, and that you can’t do these ‘normal’ day to day activities is massive.

“But, I just thought to myself, I have to find a way to make this work.”

Since then, Celia has become an award-winning advocate for disabled representation, having earlier this year been awarded the title of ‘the UK’s most influential disabled person’ by charity Shaw Trust.

Fellow award-winning campaigner, Jet Gates, a student at the University of Winchester, told Winol about their similar experiences with experiencing daily disabled discrimination.

“Sometimes people make me forget I am human. There are always people pointing at me, staring at me.”

Gates uses an electric scooter due to their severe pain, regular seizures and fainting episodes. However, Jet sees their chair as an extension of their personality, and not just a piece of equipment.

“In October last year, I got hit by a car because there just weren’t any dropped curves for my chair.

“Every day of my life, I am putting my life at risk because this world just does consider people like me.

“I have people all the time come up to me and ask why I’m in a wheelchair. What happened to hellos? How are you?

“I have people constantly coming up to me, telling me that they are praying for me and my healing.”

“I am not a stereotype or my condition. I am Jet.”

Like Mrs Chartres-Aris, Jet has campaigned for greater disabled equality, being an influential voice in the ‘Rights on Flights’ campaign, which advocates for greater treatment on planes and in airports, as well as regularly leading campaigns nationally.

“It is funny because I went to Downing Street, but I couldn’t even get into number 10 because of the step.

“Here was this big achievement, something I had earned, and I couldn’t even enjoy it.

“The amazing thing about my activism is that I can actually make a change.

“If I see an issue, I can fight for it to be fixed. I am creating this legacy which will change the lives of so many people, and that is what makes all this pain worth it.

“I am disabled – yes, but that is not holding me back.”