Claire Dellar: Navigating Disability & Driving Change

The day I realised I needed a wheelchair, I cried my eyes out. Not only was I grieving for the loss of my health, I was anticipating the new set of barriers I was going to face. How would I work? How could I pace up and down the stage, wildly gesticulating when public speaking? How could I get into my favourite wine bar? What negativity – nay, hostility – would I face in future? Would I be even more ignored than I already am as a professional woman in a male-dominated, technology industry?

Every one of my fears came true. And yet, my wheelchair has been life-changing. Eye-opening. Revolutionary. (Literally revolutionary, it can spin on the spot!) The day I got my wheelchair, I got my life back.

Claire in her electric wheelchair in a beautiful Moroccan garden. She is a pink-haired 40-something white woman wearing a bright pink blouse and black culottes. She is on a path made of intricate blue and green mosaic tiles and surrounded by trees and bushes. Wooden furniture is in the background

Claire in Morocco, April 2024. Credit: Claire Dellar 2024

The models of disability:

The medical model of disability

Grief doesn’t just happen when we lose someone. Grief happens whenever life changes. I slid down the early stages of the grief curve – denial, anger and depression. I was applying the medical model of disability. I was thinking of myself as something broken. Something damaged. Something to be fixed. Realistically, there aren’t any easy fixes for my impairments. My disabilities include fibromyalgia and a heart condition. I'm also dyslexic.

Only when I started to come up the curve, exploring and accepting, did I realise I wasn’t the problem. Society is designed for the (male), able-bodied, neurotypical person. I am none of those things. Looking at my situation through the social model of disability, I realised I am not the problem. The problem is the barriers society allows to be put in my way.

The social model of disability

With my new wheels, I headed to my favourite wine bar to celebrate getting my life back on track. I can go out again. I can work. I can speak at conferences, like HETT Show. My wheelchair saves me enough energy so I can do the things I love.

At the bar, I had a problem. There’s not a lot of space, and the only way to get to the toilets is up some steps. There's no room to add a ramp or a wheelchair lift. But hang on, do we need the steps? Or, if we replaced the steps with a ramp, wouldn’t everybody be able to get up there?

A group of men and women of different ages and races enjoying a drink in a bar. One woman is using a wheelchair. One man has a prosthetic leg.

Credit: Photo by Elevate on Unsplash

At NHS England, I am part of the team of volunteers who run our Accessibility Laboratories. Accessibility Labs are spaces where people experience what it’s like for people like me.

Put on our headphones to experience different types of hearing loss. Try using braille Lego while you wear our visual impairment glasses. How about playing Wordle on your phone wearing gloves that make your hands stiff and painful to move?

A man wearing gloves that make his hands stiff and hard to move, trying to use a tablet computer

Credit: NHS England

I use a lot of assistive technology in my life. I’ve written this blog using voice recognition software. My screen reader read my first draft to me. In the Accessibility Lab, our teams get to try different assistive technologies. They even use the lab to test their products.

We also need to speak to patients. Every few weeks, I spend an hour with different user researchers. Sometimes they ask me about different ideas for their product. Another day, I might test a product with my screen reader. We even think about how accessible our training and user guides are.

The Patient Voice

We must involve patients before we even come up with a product. The first line of the NHS Constitution is “The NHS belongs to the people”. Patients are the reason the NHS exists. That means we should start with what patients need. That is principal 4: “The patient will be at the heart of everything the NHS does”.

A person in a wheelchair who has had both arms and both legs amputated. He is wearing two prosthetic arms. A man sat next to him is fitting a device on his bicep.

Credit: Photo by ThisisEngineering on Unsplash

We don’t just fix the easy problems. Or the problems of people who shout the loudest. Or the problems of people who are easy for us to find and talk to.

We need to fix the problems of people on the margins. People who face barriers when trying to tell us about their problem. The hard problems.

Those are the solutions that really make a difference. Solutions that benefit everyone, not just the majority. It's just like the ramp in my favourite wine bar. Fixing problems for people like me makes the NHS more accessible to everyone else.

Overcoming bias

Many disabled people find it very difficult to talk about their experiences.

I face ableist barriers. I’ve been called “cripple” and “benefits scrounger”. That makes it hard to feel like society values me.

I face ageist barriers. Every time someone says “you are far too young to be that sick”, what I hear is “I think you are faking it”.

I face sexist barriers. People listen to me more if I go to appointments with my male partner.

These repeated experiences have traumatised me. I find it hard to trust that someone will believe me. That someone wants to meet my needs. I feel I must apologise every time I ask for accessibility. How can I trust an NHS researcher? How do I know they will believe me? How will I feel talking about my experiences?

Trauma-informed research

Trauma-informed user research is an important part of what we do.

User research is how we understand:

people’s problems
what people need
if our product meets their need

We try to research with users with very different experiences and backgrounds. Sometimes people have had a traumatic experience. It might have been a traumatic experience with the NHS. It might have happened somewhere else. It all has an impact. Sometimes we ask questions that remind them of traumatic experiences. Their experience can still make it hard for them to talk about what they need.

I am a survivor of domestic abuse. I experienced gaslighting. My ex-partner told me I was imagining things or exaggerating. My experience makes it hard for me to trust that anyone believes what I say.

When we do ‘trauma-informed’ user research, we think about how we:

make people feel safe and believed
avoid making them feel worse
make their experience positive

At NHS England, we want people to feel safe and believed. We think about how patients might feel during and after our research. It is important we speak to people who have had traumatic experiences. We want them to feel like we listen to them. We want to meet their needs.

a group of people hugging

Credit: Photo by Thiago Barletta on Unsplash

The NHS belongs to the people

If the NHS belongs to the people, then all kinds of people need to work in the NHS. The NHS needs people like me. Not just campaigners. Yes, I give talks about my disability and access needs. I champion inclusivity. I mentor disabled people, women and people from minority groups. I volunteer with the Accessibility Lab.

The most important thing I do is turn up to work every day. My team hears my different experiences. My dyslexia means I see connections that my teammates miss. I am seen. I am believed. I am valuable. My team achieves more because we all bring something different to our work. We make products that meet the needs of people like me. I’m proud to be a part of the NHS.

You can find out more about my experience at HETT Show on 24-25th September, during my panel session 'The Patients Will See You Now – How Public Engagement Contributes to the Development of Digital Services '. Register for your free pass to the digital health event below.