The Lives Behind Equal Lives: Interview with Ben Reed

Against a navy blue background, 'The Lives Behind Equal Lives' and a microphone illustration appear in red text over a white brushstroke graphic. Alongside is a portrait photograph of Ben Reed outdoors against a leafy green background. Ben is a white man with brown hair and a beard. He is wearing a floral sweatshirt and smiling at the camera. The text below the photo reads "with Ben Reed, CEO". The Equal Lives 30th anniversary logo, marking 1996–2026, is displayed at the top, alongside the original Equal Lives logo: Equal Lives is written in blue text, with a tagline written in purple - Free from disabling barriers. There are 3 orange birds flying into the air above the writing.

In this blog, we interview Ben Reed, our CEO, to learn more about his background and why disability rights matter to him. We hope you enjoy reading.

Tell us about your background. What did you do before you worked at Equal Lives?

When I left school, I worked as a carer for a while. I did train as a nurse briefly down near Brighton, but found it wasn’t the right fit for me, so I switched to working as an advocate and a personal assistant. I loved being an advocate but didn’t think I could ever work in an office, as I struggled with written work at school.

I saw an advert for a role at SIL (Suffolk Independent Living) and applied for it – thinking that if any organisation will be inclusive for my dyslexia, surely it will be a disability rights charity. I started working as an Adviser at SIL – that’s how I came to join Equal Lives.

Of all the causes you could work in, why disability rights?

I really struggled with certain subjects at school. I did well at maths and science, but elsewhere I found written work hard because of my severe dyslexia. My mum was dyslexic too, and my grandad was a headmaster. They helped me get a dyslexia diagnosis to try and force the school to take it seriously. Even then, though, teachers would deny that dyslexia existed – I was often accused of being lazy. Teachers would insist that homework was handwritten and then complain that it was illegible, things like that. There was a lot of segregation: I’d be taken out of classes, and it was only thanks to my mum and grandad that I was allowed to stay in mainstream education. Parents’ evenings were incredibly stressful, as my mum would end up arguing with the staff.

When I left school, I thought that whole worlds of work were closed off to me – I’d never be able to work somewhere that involves reading and writing. It had always been such a huge barrier at school. The whole system felt like it was set up to punish neurodivergent pupils.

That experience of being in an environment that wasn’t built for me, and seeing my family advocate for me, was really formative. I was made to feel inferior in a system that wasn’t serving me, and that got me thinking about the Social Model of Disability, which was really helpful for me. All of that was very motivating to work in this sector.

What makes Equal Lives special?

The element of “nothing about us, without us” is huge for me. We live in a society where decisions are made about groups of people and issues, where the decision-makers have no personal experience of the issue.

At school, I didn’t have any teachers who were dyslexic. I went through my entire schooling without encountering an adult (apart from my mum) who was dyslexic. No one who was facing those barriers was designing the support that I received. I didn’t have a voice in that environment, unless my family advocated for me.

That background plays a huge part in why Equal Lives matters to me. I’ve never felt as Disabled as how I felt when I was at school. As an adult, you can choose the environments you are in, but you can’t do that as a child – I was stuck in an environment full of barriers all the time.

The user-led environment at Equal Lives is so important to me, and so is the Social Model of Disability. I think it’s a really useful lens to talk about things. For example, I don’t find certain labels like ‘neurodivergent’ or ‘physical disability’ particularly useful, I think it’s more helpful to think about the barriers that you face in society, and how that condition or disability affects you.

Can you tell us more about what makes Equal Lives’ services so important?

I’ve worked in the care environment and have seen how troubling and scary it is when individuals aren’t at the centre of making decisions about their own care. I’ve worked in a group home (for people with learning disabilities) and a nursing home, and both of those environments had constant low-level safeguarding issues, because the individuals had no say in things. They couldn’t choose who they lived with, who was caring for them, or how things were set up. That’s why we are involved in Direct Payment Support services – it is so important to empower people to make choices about these things.

Similarly, our Advocacy Service helps make sure that voices are heard. We know that Disabled people can get sidelined and overlooked; not everyone can speak up for themselves. It’s so important to be alongside people and make sure they are heard. Alongside community advocacy, we support people through family court. The child should be the focus in that environment, of course – but if the parents aren’t being heard because of their disability, how is the child going to be heard? For instance, if my mum had been asked to make a written submission about my difficulties, her own dyslexia would mean she would have been excluded from that environment. We see a lot of parents in that environment who just aren’t getting the support they need to be good parents. Having a child in a loving family with enough resources is always going to be better than having them go through care proceedings.

In terms of our Advice service and its importance – being Disabled is so complicated! You are expected to navigate things like the benefits system, social care, the NHS, and all those systems are incredibly complex. It’s not enough to just Google it – you need to understand what you are typing into Google! We provide clear, accessible advice to help people make sure they’ve got the right information and understand things fully, and to answer any questions.

Finally, Shopmobility is meeting a basic accessibility need. Equal Lives took it over from another Disabled Person’s Organisation during Covid. We felt that Norwich needed that: the city is such a hub within Norfolk, that even if you don’t live in Norwich, you will inevitably need to go there sometimes. We felt that making Norwich accessible was important for helping people participate in East Anglian society. We weren’t prepared to let that service go.

You became CEO of Equal Lives in 2018. Thinking back on those years, what are you most proud of?

Probably coming through Covid. The way that the organisation, the staff, and the services were able to respond was quite amazing. We had to completely change all our services – for example, our Advocacy and Direct Payments services used to work exclusively face-to-face with people. We used to give out practical resources like laptops and food vouchers. All that had to change, and then we had to take on Shopmobility during the pandemic too, as well as moving office twice! We essentially had to take on so much extra work, but with far less resources. Just getting through that period was a huge deal. It was a really hard time, and as a user-led organisation with lots of Disabled staff, many of our staff were high risk. But our ability to adapt and to problem solve was amazing.

When are you happiest at work?

I’m happiest when I’m involved in group projects and co-production. I really like working with other user-led organisations, like women’s groups, minority ethnic groups, and other disability groups. It’s so interesting learning about the similarities and shared challenges. I also love budgeting and working with spreadsheets!

What are your personal hopes for Equal Lives - where would you like to see the charity go?

I hope that with local government reorganisation, there might be opportunities to work with councils on making their services more user-led and person-centred. Over the years, we’ve seen so many examples of things trying to be done as cheaply as possible, and that is exhausting for us. The cheapest options are not always best value and can lead to worse outcomes and higher long-term costs. For example, deciding not to spend money on someone, and then they fall into crisis – they are going to end up being more expensive and have a more distressing experience. I’m really excited about the potential that comes with working with new councils – designing services locally around their communities.

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