Strip searched and called a freak: the disability advocate fighting back

I take an immediate liking to Celia Chartres-Aris. She has such a warm manner that it’s impossible not to. I can imagine sharing a meal with her and a few drinks; but that could never happen. Celia hasn’t been able to eat food for over three years. She cannot even drink water.

Celia suffers from complete intestinal failure due to a rare condition called Loeys-Dietz Syndrome. This means she relies on tube-feeding for all her nutrition. On her back she carries a bag containing a specially formulated feed which goes through a Hickman line into her chest. She tells me she’s used to not eating, although she is particularly sad that she can’t enjoy food on her birthday, which falls on Christmas Day.  

Picture: Celia Chartres-Aris

My 9-year-old daughter saw a picture of Celia proudly displaying her Hickman line. “She’s beautiful Mummy!” she said. And she is right. Celia is tall and willowy due to another condition called Marfan Syndrome. Standing tall at over 6ft 1 it’s no surprise she has done modelling, but she uses it as an opportunity to educate people about tube-feeding. She wants to break down the taboos surrounding it.  Celia casually tells me “I get called a freak all the time. It’s their favourite thing to call me.” She then explains that more than once she has been in a bar when a group of men have tried to touch her feeding tube and joked about not being able to buy her a drink. At what point does our childish acceptance of differences make way for this fear and hatred of the unknown? Is it ignorance that leads grown men to be so cruel and disrespectful?

As well as being thrown out of bars for not drinking and banned from music festivals because of her feeding bag, Celia Chartres-Aris has been strip searched twice at airports despite carrying around documentation signed by hospital consultants and even a QR code that can be scanned to provide information. Even then Celia says she has tried to take the opportunity to educate people and tell them they are breaking the law by violating the Equality Act.   

As a teenager her disability was misdiagnosed as an eating disorder, and she has been left traumatised by medical gaslighting. Instead of scanning her digestive system which would have revealed her paralysed intestines, she was sent to an eating disorders clinic. The constant injustices in Celia’s life have fuelled her in her quest to improve life for people with disabilities. She is on the Disability Power 100 and the Global Diversity Leaders list and has just had her Access2Funding Report published in Forbes magazine. She advises the government on policy and accessibility for people with disabilities. Knowing her condition is life-limiting (she has been told she could die from an aortic aneurysm at any time) drives her to do what she can right now.

If this is what being a freak looks like, we need more freaks like her.

To hear the inspirational podcast with Celia Chartres-Aris listen here HARD TO STOMACH PODCAST or subscribe now to Angela Walker In Conversation wherever you get your podcasts.   If you have enjoyed reading this article please share it on social media so others can too.

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