RP Awareness Month – Paul’s Story
At 77, Paul reflects on a life that has been full and people focused. A solicitor by profession, and then later a judge, Paul’s career spanned decades of public service and careful judgment. Alongside this, Paul has raised three children and is now a proud grandfather to seven.
Paul was diagnosed with retinitis pigmentosa (RP) at the age of 35. At first, the changes were subtle as his peripheral vision slowly narrowing. Over time, Paul’s sight has continued to deteriorate, and more recently he lost vision entirely in his right eye following COVID. He hasn’t lost his sight completely, but the way he sees the world is profoundly different now. Paul often describes it as looking through a “polo mint hole”. Paul feels fortunate that he can still read his phone and send texts, small abilities that bring a sense of independence many take for granted.
For the most part, he doesn’t feel misunderstood. Paul’s friends know about his sight loss and treat it as a fact of life. When he travels by train, he often encounters kindness and generosity from strangers, particularly when he’s using his white cane. “It’s amazing,” he says, “how willing people are to help when they understand.
Yet sight loss has quietly reshaped Paul’s life. One of the hardest changes was giving up driving which was something he did until the age of 60. As a criminal lawyer, driving had been essential, getting to police stations and courts at all hours. When that was no longer possible, he had to rethink his career entirely, moving into a role that allowed him to continue working, including remotely during COVID.
The tasks Paul faces today are often small, but relentless. Dropping something on the floor such as a sock or a piece of paper can trigger frustration as the objects seem to vanish. Everyday independence is limited; he can walk his dog only in familiar areas, getting around through memory and landmarks like lampposts. Busy towns, shops, and unfamiliar places feel overwhelming. In low light, his vision fades making winter months especially difficult.
One moment captures this particularly clearly. At a Christmas gathering with neighbours and friends, Paul spent three hours in the room without seeing a single face. He recognised people by their voices as they greeted him, but their expressions, their clothes, their presence remained invisible. “I wasn’t unhappy,” he reflects, “but I was unfortunate.” The small, human practice of friendliness, eye contact, and smiles were simply unavailable to him.
This struggle with low light has also affected his role in the drama festival he loves with great passion. Eventually, it became unsafe for him to be on stage due to the lighting conditions, forcing him to step back from parts of the role.
In the wider community, obstacles often feel unnecessary. Abandoned e-bikes and scooters left across pavements are hazards that sighted people barely register but can be dangerous for someone with sight loss. “It’s not malice,” he says, “it’s thoughtlessness.” A heavy bike left in the wrong place could easily cause a serious fall.
If there is one change he would like to notice, it’s more light. Restaurants are often so dim that he cannot see his food. While he understands the desire for atmosphere, he wishes accessibility were part of the conversation. He imagines a future where restaurants are rated not just on food and service, but on lighting which is a simple index that could make socialising easier and more dignified for people living with sight loss.
When asked why supporting a sight loss charity matters, his answer is straightforward. Charitable support is fundamental, he believes, because sight loss affects every part of daily life. Anything that makes that life easier, safer, more inclusive or more independent is worth investing in. “If you can make things easier for people with disabilities,” he says, “that’s a very good thing to do.”
His message to society is not complicated. Make spaces lighter. Think before placing obstacles in public areas. Consider how the world looks or doesn’t look through someone else’s eyes. Small changes, Paul reminds us, can make a profound difference.
If reading Paul’s story has inspired you to support Retina UK please email [email protected].