Over the past threes year, I’ve been working as a community researcher with Help and Care, Wessex Cancer Alliance and Macmillan Cancer Support. We have explored disabled people’s experiences of cancer services. The project has been eye-opening — and, at times, devastating.
The conversations we’ve had reveal how deeply inequality runs through cancer care. People told me stories that still stop me in my tracks. One participant shared that when they asked about another round of chemotherapy, they were told, “Well, you’re seventy — you probably haven’t got that long left.” Another was told that, because they were blind, “it didn’t really matter” if their life expectancy was shorter.
These weren’t isolated moments. They reflected something much larger: an unspoken belief about who is worth the effort of care.
Reflecting on Inequity
We can’t tackle the inequity of cancer services without reflecting on the bigoted ideas and outdated assumptions we all hold. The inaccessibility of cancer services is one thing — but the inability to travel independently, to leave your house, to afford transport, and to do so without facing stigma, is another altogether.
And these experiences aren’t unique to healthcare. For many disabled people, they’re a daily reality.
When it comes to cancer services — from charities to treatment to aftercare — there are multiple layers of inaccessibility. Information can be difficult or impossible to access for visually impaired or learning disabled people. Websites that claim to have accessibility features often fall short. And then there are those in our community who don’t have access to the internet or a device at all — where can they go to learn about cancer symptoms, treatment, or support?
This isn’t a matter of convenience. It’s a matter of dignity, equality, and sometimes survival.
The Power of Listening
One of the most striking things I’ve learned from this research is how vital it is simply to listen. When people feel unseen or dismissed — when they’re told, implicitly or explicitly, that their life matters less — it chips away at their confidence to speak up, to self-advocate, to ask questions, to seek help at all.
Listening can be transformative. Every story shared in this project carried courage. Many participants had negative experiences in institutional settings, so returning to share those stories took bravery and trust. Their willingness to speak openly is what makes community research so powerful — it pushes us to confront the systems and attitudes that need to change.
Beyond Access: Reclaiming Humanity
It’s not just about ramps or hearing loops or appointment letters in larger print (although we do definitely need those too). It’s about being treated as a whole person — not a burden, not an afterthought, not a checklist.
Healthcare professionals often enter their fields because they genuinely want to help. But somewhere along the way, empathy can get lost under pressure, policy, and burnout. Under this system it is easy to stop seeing the human in front of you.
That’s why projects like this matter — because they remind us that stories are data with soul. Every account, every voice, adds to a collective understanding that can lead to real, practical change.
Moving Forward
The next stage of this work, along with the Trans Aware Cancer Care project, is to support a Hampshire hospital to improve their breast/chest screening provision.
There’s still so much to do — not just in policy, but in culture, attitude, and awareness.
Ultimately, the goal is simple: for everyone, regardless of identity or ability, to be treated as fully human when they walk into a room seeking care.
Kindness doesn’t cost anything. Listening doesn’t take funding approval. But both can change the course of someone’s experience — even their life.
Because when disabled people say, “We’re not being heard,” the answer isn’t to defend or deny. It’s to sit down, listen, and believe them.