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Patchworker Spotlight: Celia Chartres-Aris
Celia Chartres-Aris is a multi-award-winning disabled founder & investor, campaigner & lobbyist, researcher, and policy & legal expert. Speaking with the team at Patchwork Hub, Celia shared the story behind her work, her motivation for driving change and other insights into her vision for the future world of disability inclusion.
About Celia
A celebrated social entrepreneur, disability advocate and founder of some incredible disability inclusion organisations, Celia works internationally and across sectors to push for change around disability equality, accessibility, and inclusion.
Entrepreneur, Founder and Investor
In 2021, Celia co-founded the Disability Policy Centre, the first policy unit in the UK focused on putting disability at the heart of Westminster and disability inclusion on the agenda in UK politics.
She later founded Access2Funding, which aims to break down the barriers that disabled entrepreneurs face in securing funding and investment while, at the same time, supporting the global investment market to improve opportunities and participation for disabled-led organisations.
Most recently, Celia has launched Unlearning Ableism. Through speaking engagements, consultation, and training, Unlearning Ableism tackles discrimination against disabled people. The organisation also educates others, spreads awareness, and amplifies the diversity of the disabled voice. In this capacity, Celia regularly advises organisations and charities around the world, including Virgin, the NHS, UCL, Amazon, and British Banking.
Campaigner, Special Advisor, Policy Designer and Researcher
With a background in law, specialising in human rights, Celia also campaigns globally for the protection and implementation of disability law. In this space, she’s orchestrated several successful campaigns in the UK, most notably the reinstatement of the Secretary of State for Disabled People, alongside work to drive forward the implementation of United Nations Conventions on the Rights of Disabled Persons.
As a Special Adviser (SpAd) for Disability and Health to the UK Government, Celia also works around the world with national governmental bodies, British Territories and international governments. These bodies include the UK House of Lords, the European Union and the United Nations, to name only a few.
And as a researcher, Celia has also authored and led numerous policy papers and academic work that have been instrumental in driving forward legislation. Most recently she has co-authored Unlearning Ableism’s The Big Ableism Survey, one of the first focused explorations of the issue of ableism across society and how it impacts disabled people on a daily basis.
A testament to her work, Celia has received multiple awards, including being named on the Global Diversity Leaders list and ranked as the third most influential disabled person in the UK in the law and policy space. Celia’s work has also garnered international recognition from organisations such as Forbes, The Financial Times, Metro, and the BBC, and you can also catch her on LinkedIn, where she's recognised as a 'Top Voice'!
Q&A
We asked Celia a few questions to find out more about what drives her work and the things she’s learnt throughout her journey…
Could you please tell us about yourself?
Born with multiple disabilities as a result of a rare and terminal genetic condition, Loeys-Dietz Syndrome, I live every day with multiple organ failure and have never known my life without disability. Taking pride in my disabled identity, I work hard to break down systemic ableism, discrimination and archaic stereotypes about the talents, potential and ability of disabled people.
Have you ever faced any workplace barriers due to your situation? Do you think the 'conventional' world of work needs to change?
Oh where to begin, the list would be endless!
For me the biggest workplace barriers are perceptions that 'health equals wealth', and that because I have so many medical commitments and have my timetable run by blood infusions I can't possibly be able to commit myself to a role.
The other would be the inflexibility of employment and employer's rigorous commitment to the 9-5 unmovable framework. This is the biggest thing employers need to change - setting a working structure which fits all candidates and their daily commitments. This applies not only to disabled people but also to parents, carers and older individuals in the workplace.
If you could change one thing about the world of work or the way employers saw accessibility, what would it be and why?
That accessibility and the inclusion of disabled people are of equal importance to other diversity and inclusion matters.
So often disability is missed out of the conversation and placed on the backbench of importance. Disabled people are being excluded from the workplace in part due to the lack of prioritisation of accessibility, still operating under the manifesto that 'disabled people couldn't possibly want to or could work!'
Accessibility is a human right, not a privilege, a favour or a ‘cost’. Equity of access should be a non-negotiable.
What inspired you to start doing the work you currently do?
Because of my own experiences of being discriminated against, constantly doubted and thought less of, since I was young I’ve always had a deep passion for law, politics and policy and a desire to change the mechanisms that govern our daily lives.
I’m inspired by the notion of embedding the campaigns we’re all working so hard to achieve into policy so that no matter what, disabled people are protected from ableism. To me, policy is the key to change - we have to improve our laws of equity and inclusion to make sustained and long-term change.
What’s the biggest lesson you’ve learnt from your career to date?
The importance of allyship, community, and positive conscious intent. Collectively we can make the biggest difference and we need everybody to come together in a united case to push forward change. From a personal perspective, 'finding your tribe' for support, friendship and kindness is also the greatest gift that my career has given me. I’m blessed to have the most amazing group of people around me and I would feel lost without them. For one of the first times ever, I feel understood, seen, and heard.
What do you like to do when you’re not working?
I have two absolutely nutty dogs that I love and are like my little shadows, so like most dog mums, they take up a huge portion of my time! But I also love being creative. Set me in front of anything arts and crafts and you've lost me for hours on end!
Do you have a favourite quote or personal mantra?
Start by doing what is necessary, then do what is possible, and before you know if you are doing the impossible.
What is the one thing you can’t live without?
This community (and my dogs)! I’ve made some of my closest friends and allies through my work, who I now couldn't imagine my life without.
If you could have any superpower what would it be?
Definitely teleportation! Having an energy-limiting condition, not having to travel would be chef’s kiss!
If you could change one thing about people's perception of disability, what would it be?
Just because my way of doing this is different, it doesn't make it wrong. Normality is a social construct and we have to embrace and celebrate difference for all the power, beauty and talent that it is.
Any final recommendations for people wishing to engage more with disability inclusion issues?
My ultimate recommendation is the Disabled and Proud podcast from Brooke Millhouse! Brooke’s podcast brings listeners a different perspective on disability, and each week highlights an awesome disabled guest speaking about their own disability; why they are proud to be disabled and why they are proud to be themselves. Be sure to check it out!
Find out more about Celia’s story and work:
Published: 3rd September 2024Tags
- ableism
- Access2Funding
- accessibility
- allyship
- Amazon
- Apple
- British Banking
- British Territories
- Brooke Millhouse
- Coca-Cola
- disability law
- Disability Policy Centre
- Disabled and Proud podcast
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- diversity
- Downing Street
- European Union
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- Global Diversity Leaders
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- human rights
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- Loeys-Dietz Syndrome
- Metro
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- policy
- policy expert
- research
- Secretary of State for Disabled People
- social entrepreneur
- Special Advisor
- strategy
- UCL
- UK Government
- Unlearning Ableism
- Virgin
- bbc
- Celia Chartres-Aris
- disability
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- united nations
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