A RESIDENT from Whitchurch is hoping to increase disabled representation in politics after being born with a rare connective tissue disorder.

Twenty-five-year-old Celia Hensman has suffered from several health problems including seizures, multiple surgical joint replacements, scoliosis, and heart problems after being diagnosed with Loeys-Dietz Syndrome.

The Syndrome is a genetic disorder that affects the connective tissue in the body and Celia is unable to eat or drink orally, all her nutrition comes from infusions.

She said: “When I was growing up, I used to dislocate all the time and I was constantly unwell. It made school for me quite challenging because I was always in pain and off sick meaning I had to take months off at a time.

"I had so many aspirations of what I wanted to do, I was a keen sportswoman, but my body kept giving up on me. I lost so many jobs because I could not keep up with the structure of how a job is supposed to be and that inspired me to think I must not be the only one who is struggling with this.”

She became aware of the lack of involvement that disabled people had in policy discussions, and the lack of consideration for disability in the formation of legislation.

Since then, Celia launched The Disability Policy Centre alongside Chloe Schendel-Wilson, which is the first think tank of its kind in the UK, dedicated to changing the lives of disabled people.

A think tank is an independent body of experts providing advice and ideas on specific political or economic problems. They often make recommendations about how legislation can be changed or recommend new legislation.

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The duo is set to launch a paper about how disability is represented in politics and hope to see “more disabled people at the centre” of politics.

She said: “Only a handful of members of parliament have declared they have a disability. It is really important for me that disabled people are not being spoken on behalf of. What we need is more people at the centre saying this is how it’s going to impact them, and that voice needs to be heard.

“The paper is coming out in a few weeks in the House of Commons which is so exciting.”

For more information visit: https://www.disabilitypolicycentre.org.

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