Celia Chartres-Aris: From Personal Health Struggles to Leading Disability Advocacy

Celia Chartres-Aris, now 27 and from Hampshire, experienced “constant pain” during her teenage years, which forced her to abandon her active and sporty lifestyle. She was born with Loeys-Dietz syndrome, a rare genetic condition that results in multiple organ failure and prevents her from eating or drinking. Following recent difficulties securing employment due to being deemed “too disabled,” she is currently dedicated to advocating for improved disability and human rights, stating she fights with “every breath I have.” Earlier this month, she was named first on the Shaw Trust Disability Power 100 list, which acknowledges the accomplishments of the most influential disabled individuals in the UK. Celia, residing near Winchester, recounted periods of being “on and off a feeding tube because my intestinal system wasn’t working properly.” Nevertheless, she earned a law degree and began her initial training contract, remarking, “I thought I was going to conquer the world.” However, at the onset of the Covid pandemic, she experienced multiple organ failure. She stated, “When I tried to get back into work, nobody would have me… because I was too disabled.” She further explained that “The barriers that I had experienced my entire life had suddenly got even bigger because I progressed from having an invisible disability to a very visible one.” Rather than conceding, she chose to “survive and thrive,” establishing the UK’s first policy unit dedicated to disability issues to engage with the government. She articulated her primary objective: “My fundamental aim is that the laws and legislations that we are writing or amending are done with adequate consideration and consultation of disabled people because historically that’s just not happened.” She concluded, “That’s how my journey of great pain has led to something very positive.” She commented that “Having something like the Disability Power 100 enables us all on the list, everybody nominated and everybody who supports it in the community, to be able to amplify our voices and show the work of these incredible advocates until we reach a point where we are included.” Celia noted that approximately 16 million people in the UK identify as disabled, with 95% reporting weekly discrimination. She emphasized, “The slogan I always use is that accessibility and inclusion is a fundamental human right.” She added, “And my life expectancy is much shorter than most people, but with every breath I have, I will continue to do what I do.” Readers can follow BBC Hampshire & Isle of Wight on Facebook, X, or Instagram. Copyright 2024 BBC. All rights reserved. The BBC is not responsible for the content of external sites. Information regarding their approach to external linking is available.