We’re proud to share that a letter written by Dr Denise Al Mari-de Waal, UP’s Advocacy Lead, and UP Advocate Aaron Hume has been published in the Guardian.
The letter responds to the death of RJ Mitte, the Breaking Bad actor and disability advocate who lived with cerebral palsy and died earlier this month, aged 34. RJ was one of very few people with CP to be widely visible on screen, and his loss has been felt deeply across our community.
Denise and Aaron write that RJ’s success challenged assumptions about what people with cerebral palsy can achieve, yet the 165,000 people with CP in the UK are still too often underestimated. They point out that mental health is frequently overlooked, even though people with CP are more likely to experience mental health conditions and poor wellbeing, shaped by prejudice, isolation and low expectations.
A lifelong condition needs lifelong support
The letter also highlights the cliff edge many people with CP face at 18, when the care and support they had as children often disappears. Denise and Aaron call for lifelong support and an integrated care pathway that recognises both the physical and mental health impacts of cerebral palsy, including access to specialist mental health services.
That’s what #SpeakUP is about: making sure the lived experience of adults with cerebral palsy reaches the people who shape services, policy and public conversation.
Read the full letter in the Guardian, and please share it using #SpeakUP.
If you’d like to add your voice to our campaigning, find out about becoming an UP Advocate.