Disability Pride 2025

What does Disability Pride mean to me? Sara Edwards CP Specialist

When I first heard the term Disability Pride, I was confused by its meaning. In June we celebrate the LGBTQIA+ community and hold Pride events. I assumed Disability Pride was an extension of this, celebrating the LGBTQIA+ disabled community.

In 2024 I was invited to a Disability Pride event at the Senedd in Cardiff. At this event I discovered Disability Pride was its own movement with a focus on celebrating disability and the disabled community.

When I was a child and a young adult, I felt embarrassed being the “disabled person” in the room. I felt judged by my peers, teachers and colleagues and I felt isolated from the world. At that stage of my life, celebrating cerebral palsy and epilepsy would have been the furthest thing from my mind.

But when I least expected it, people came into my life, and they had an impact that changed how I viewed myself. It all began with a small encouragement from the Manager of Epilepsy Action Wales. She invited me to share my personal journey with epilepsy and connect with others who shared the same condition.

I had the opportunity to visit schools and businesses, presenting workshops on how to support pupils and colleagues with epilepsy. I felt proud to impart my knowledge and experience and change people’s perceptions of epilepsy.

Acceptance of my cerebral palsy was harder to come to terms with. I had always known I looked different, and I felt the stares from others whenever I walked (or hobbled) into a room. I never considered they might have been looking at my bright smile or the lovely dress I was wearing. I would automatically think the worst-case scenario; they were repulsed by my physical appearance.

Volunteering with Epilepsy Action, I slowly gained in confidence and in 2019 I joined the charity Scope as a Parent Adviser, supporting parents of disabled children. It was here I connected with Scope’s CP Network and Richard Luke: Scope's Cerebral Palsy Programme Lead.

I was encouraged to attend one of the CP community’s monthly meetings. I had never been in a space with anyone who had cerebral palsy before and was nervous about attending. I need not have worried though. On joining the meeting, I felt an overwhelming sense of belonging. This community were not defined by cerebral palsy but just like my role in the epilepsy community, they were understanding, accepting and there to support each other.

Over time I have embraced the opportunities to learn more about cerebral palsy, leading to a new role within Scope as the CP specialist for Cardiff.

I have attended workshops and participated in university and medical research studies. I want medical professionals to have an interest in cerebral palsy across all generations, recognising it’s not just a childhood condition. We are a diverse group of people and cerebral palsy is not one type.

This Disability Pride month I am celebrating being part of communities that not only support each other, but campaigns for societal change so disabled people can live in an inclusive society free from discrimination.