Advocating for change
Birkbeck PhD student and disability changemaker Georgia Bondy, who uses both she/they pronouns, was named on the 2024 Shaw Trust Disability Power 100 list. Recognised for their impact, innovation and influence in changing the perceptions and stereotypes of disability, Georgia was announced as one of the 100 most influential disabled individuals in the UK and a leader in their field. By founding the social enterprise WellAdapt, she is working to support chronically ill people after she herself spent years trying to get answers about her symptoms, as well as learning how to manage them.
“It took 12 years from my first doctor’s visit aged seven to get a diagnosis of my genetic condition,” Georgia says.
“I spent a lot of time being fobbed off by GPs and was let down by the medical system in terms of diagnosis and support.”
Georgia was finally diagnosed with Ehlers-Danlos Syndrome and relapse remitting multiple sclerosis (MS) and has since been learning how to manage her symptoms with the aim of experiencing the joy in life that comes from disability.
They said: “I dislocate my joints a lot and that leads to chronic pain all the time. I pass out because my blood vessels are too stretchy. It very much affects my day-to-day in general and comes with chronic fatigue.
“The biggest thing with MS is that you never know what will happen and what bodily function you will lose one day.
“The fear is worse than the condition – when it is gone you have no idea how much will come back.”
In 2018, Georgia began sharing her experiences on social media, which led to her building a community of disabled individuals all searching for answers and support.
“At first it wasn’t just a disability focus – it was about being black, queer and a woman,” they said.
“I started getting people reaching out personally about their disability saying thank you, because they hadn’t seen people speaking about it.
“I realised there was a space for talking about how we manage our day-to-day in terms of disability and handling the emotional and mental health impact.
“I had to wander around and spontaneously find that information about how to have a fulfilling life – those little pieces of people’s lived experience teaching you how to live in a way that feels manageable and enjoyable. I thought why not put all that information in one place?”
Georgia then founded WellAdapt, a social enterprise which supports chronically ill people to manage symptoms like pain and fatigue.
The organisation began by providing online physical exercise and mental wellbeing courses to people with disabilities and chronic health conditions.
But Georgia soon realised she wanted to advocate for change by partnering with healthcare providers and policymakers to build better chronic illness care systems.
They said: “When I came into this, I wanted to help communities share information but I realised how big the entire issue was.
“People need someone to guide them through, as learning to be chronically ill takes a lifetime.
“What I am hoping for in the long-term is to try to facilitate professionals within the NHS that can understand how to assist a chronically ill person and find out what they might need.
“I’d like to figure out a mentorship model that can be the beginnings of this but that model needs to have heavy connections within the healthcare system. So at the moment, I’m having conversations within the NHS and within healthcare policy.
“I’d like to use that to move forward to build a better healthcare system.”
Speaking about their place as a finalist on the Disability Power 100 list, Georgia said: “A lot of the time when you are trying to build something like this, you feel like you are doing it wrong all the time because you are trying to create something that doesn’t exist.
“You are constantly wanting to do something that helps but there is a lot of uncertainty and fear.
“Getting this recognition just gives me a reason to pause and realise that someone thinks I am doing something right. It gives me a boost and that legitimacy.”
The awards are publicly nominated and judged by a panel of 25 disabled champions.
National charity Shaw Trust runs the Disability Power 100 to raise the profile of disabled talent and challenge the disability employment gap head-on.
Alona De Havilland, Head of Disability Power 100, said: “The Disability Power 100 is all about creating change, it celebrates ambition and achievement, and plays a role in challenging society’s perceptions of disability by recognising the strengths, contributions and successes of 100 disabled individuals each year.
“We all need role models. People who are pioneers and changemakers. The Disability Power 100 celebrates disabled roles models with the same determination, expertise and ambition in all sectors from architecture to construction; finance to healthcare; transport to music. It is a rallying cry to future generations of leaders and a call for employers and society to recognise the talents and skills of disabled people.”
Speaking about her motivation for studying at Birkbeck, she said: “I was at UCL for my undergrad and MSci and I knew I wanted a change.
“I am a very curious person, I love research and I wanted to understand the world better. I liked what Birkbeck offered to me and I knew I wanted to come back into academia. I am exploring BDSM and disability, looking at what brings people satisfaction.”
Georgia's story will also feature in the upcoming edition of BBK, our alumni and supporter magazine, due to be published next month.