Design for all – feat. Designability on the Unfair Index

In the latest instalment of our Design for All series, we find out more about The Unfair Index from Designability. Shaped by the views of 4,000 people with lived experience of disability, the research sets out the everyday ways that inaccessible products, services and spaces put people at a disadvantage. The report is due out later this month. Its aim is to show clearly where change is needed most and to help organisations take practical steps towards better accessibility and inclusion.

We speak with Beth Neale, Inclusive Research Manager at Designability, and with Alex, Norin and Zoe from the Lived Experience Advisory Group. They talk us through how the research came together, why lived experience sat at the centre of it, and the difference it could make.

ADLIB: Can you introduce yourselves and your involvement in the Unfair Index?

Beth Neale: I’m Beth Neale, Inclusive Research Manager at Designability. I specialise in inclusive research and lived experience involvement, and I lead the Unfair Index alongside colleagues and 12 Lived Experience Advisors: Alex, Zoe, Norin, Hammas, Bavon, Christopher, Kate, Dave, Nick, Steph, Claire and Saida.

The Advisors aren’t just consulted. They help create the research with us, from shaping the questions and challenging our thinking to showing us what accessible participation needs to look like.

Zoe: I’m Zoe, and I work as an assistance dog trainer and assessor for a variety of UK-based organisations. I’m visually impaired and have a guide dog called Forest, so I bring both my personal experience of having an assistance dog and my professional experience of supporting other people to train their own.

Within the Unfair Index, I’ve helped shape the questions used in the surveys, supported social media content to spread the word about the project and been involved in lots of other parts of the work along the way. I’m generally always up for getting involved in anything Unfair Index related!

Alex: Hi, I’m Alex. I’m 31, Autistic and recently diagnosed with Multiple Sclerosis. I’ve been able to use my lived experience to tell a story that highlights the everyday barriers disabled people can face. I created a storyboard sharing my personal experience of how getting ready in the morning can be very different for an Autistic person, highlighting the sensory and emotional challenges that can make something as simple as getting dressed feel overwhelming.

It was a fantastic opportunity to turn my lived experience into something that can help others better understand the realities of Autism and the importance of inclusive design.

Norin: I’m visually impaired and have been involved in shaping the Unfair Index from the beginning. I’ve been part of other advisory groups, but what has been particularly interesting about this one is working alongside people with lots of different experiences and impairments.

I’ve helped shape the research questions, particularly looking at whether the surveys are accessible for people using screen readers. I’ve also taken part in ethnographic research with the Designability team, spending a day showing them what it’s like for me to use local infrastructure and public transport. That meant they could see not only the barriers themselves, but all the workarounds I have to use to navigate them.

ADLIB: How did the idea for the Unfair Index come about, and how did it go from idea to reality?

Beth: At its heart, the Unfair Index started with some big questions: where are disabled people experiencing barriers and unfairness in everyday life, and where could better design make a meaningful difference?

For Designability, this isn’t research for the sake of a report. It will help shape where we focus over the next three to five years. The challenge was understanding what matters across everyday life, then turning thousands of individual experiences into evidence that helps us decide where to act.

Alex: The Unfair Index was developed with members of the Lived Experience Advisory Group from the beginning. Our experiences helped shape the survey and made sure it reflected barriers people actually encounter at home, at work, online, in public spaces and in their communities.

The ambition is to turn those individual experiences into evidence, showing where change is most urgently needed and giving everyone a clearer basis for creating and building fairer products and services.

ADLIB: Can you tell us about the process of designing the research for this study, and any challenges you faced?

Beth: This has been quite the beast to design! We were trying to explore barriers across everyday life while including people with a huge range of impairments and experiences, alongside unpaid carers and parents of disabled children and adults. The challenge was making the research broad enough to identify where change is needed, but specific enough to understand what was going wrong and where design could help.

It went through a lot of iterations. We’d build something with the Advisors, red-pen it, pull it apart and rebuild it. At points, people told us they couldn’t see themselves reflected in the work or that taking part wasn’t accessible enough. That meant going back and changing the research itself.

Accessibility added another layer. Across five topic areas, we produced Easy Read and British Sign Language versions and made the surveys work with assistive technology, giving us around 15 survey versions. We also ran in-person sessions where conversation was a more appropriate way for people to share their experiences.

Zoe: It has been a lengthy process, with lots of Zoom calls between Designability and the Lived Experience Advisors. What I’ve appreciated is how collaborative it has been. When challenges have come up, we’ve worked through them together rather than one side simply making the decision.

It means the final research is something we can all feel ownership of, rather than something that was already designed and then brought to us for approval.

Norin: We’ve been involved in most stages, particularly designing the research itself and making sure the questions are understandable and relevant to lots of different people.

I was particularly involved in accessibility for screen-reader users. At one point, we found an issue with the survey login process. If there was an error on the page, the way it was coded meant the error message wasn’t being picked up properly by a screen reader. Once the Designability team knew about it, they worked to fix it.

That might sound like quite a small technical thing, but without it somebody using a screen reader could simply get stuck and not know why. Those details determine whether research is actually accessible or just described as accessible.

ADLIB: What’s the most surprising thing you’ve learned through the research?

Zoe: For me, one of the most surprising things has been the feeling of community and togetherness the Unfair Index has created.

When you’re disabled and facing barriers every day just to do things other people might consider simple, it can feel incredibly isolating. You can start to feel as though you’re the only person experiencing these difficulties.

Then you hear other people describing the same unfair moments.

Reading quotes from people’s responses has been comforting because you realise you aren’t alone, but also really disheartening because there are thousands of people encountering some of the same problems.

Alex: What has surprised me most is how often the same themes come up regardless of someone’s disability.

People’s individual experiences are different, but many of the barriers are shared. It’s shown me that organisations and processes don’t necessarily need endless separate solutions for different disabilities. One genuinely inclusive change can sometimes make a huge difference to lots of people at once.

Beth: The full findings will be published later this year, so there’s only so much we can share at this stage. But one thing that has really struck me is how rarely a barrier exists in isolation.

You can design the best product in the world, but if the infrastructure, environment or services around it don’t work, it only gets you so far.

I increasingly think about accessibility as whether someone can get to the thing, do the thing, stay, enjoy it and leave in the way they want to, without being penalised because they participate differently.

That requires joined-up thinking, with disabled people involved in the decisions connecting products, services and environments.

ADLIB: Why do you feel it’s important for Lived Experience Advisors to be included in research?

Alex: Lived Experience Advisors are essential because we are the people encountering these barriers in everyday life.

We can help make sure research asks the right questions. Disabled people shouldn’t simply be asked to respond once a finished survey has already been designed. Being involved from the beginning means we can help shape the research itself, which ultimately makes the findings more relevant, meaningful and useful for creating change.

Norin: Lived experience is central to this work. It dictates whether the work is actually for the people it’s supposed to be helping, rather than speaking on behalf of people.

My lived experience is expertise, and it’s treated as such.

Zoe: I’ve learned a huge amount from working with the other Advisors. We all have different skills, knowledge and lived experiences, and being able to bring those together for the benefit of the Unfair Index has been invaluable for me.

Beth: Designing something without meaningfully involving the people who will use it simply doesn’t do the job well enough. People with lived experience bring expertise I don’t have. They challenge assumptions about the language we use, the processes we design, what we think is straightforward and even what we decide the important question is.

There have been points in this project where Advisors have challenged us enough to change direction. For me, that’s what meaningful involvement should look like.

ADLIB: How did you get involved, and what has it been like being part of this study?

Zoe: I applied after seeing an advert on social media, completely forgot that I’d applied, and was then very surprised when I got the email offering me the role!

I’m really grateful to have had the opportunity to share my lived experience with the team.

Alex: When I first applied, I wasn’t actually sure I would be selected. From the outside, Designability seemed to focus mainly on physical disabilities, and I wasn’t sure whether I would “fit” as someone who is Autistic. Since joining, though, it’s been really clear that I do belong. Being part of that shift towards broader inclusion is really important to me.

When I received the draft copy of the Unfair Index survey to look at, I raised some crucial concerns. In its initial draft, it didn’t feel like it fully reflected Autistic experiences. This is where being part of the panel has been so powerful, as feedback from myself and others has helped the survey build and improve into its final version. Seeing those changes happen has been incredibly validating and shows that lived experience input really is being listened to by Designability.

Norin: I saw the opportunity in a newsletter and applied. I then had a call with Beth, who explained the opportunity and what would be involved, but also asked about how I like to work and what I needed to make sure it would be something I could enjoy taking part in.

Having the whole process explained from the beginning meant I knew what I could expect and when, which was important to me.

ADLIB: Why is this research important? What are the possible applications and impacts?

Beth: The Unfair Index gives Designability a much stronger evidence base for deciding where to focus our work over the next few years.

We’ve heard about barriers across virtually every part of everyday life. The research helps us identify where Designability could develop something ourselves and where the right response is to work with others.

It gives us a way to prioritise, but also a much wider body of insight we can take into future design work and partnerships and ask: this is what people told us. What can we do about it?

The important part now is making sure the research doesn’t end with publication. This is where we start turning what people have shared with us into action.

Zoe: The Unfair Index is important because lived experience has been at the heart of it from the beginning. We’ve been involved throughout the project, and our suggestions have been listened to and implemented wherever possible.

As someone with a BSc who is pursuing further education, I’m aware that research isn’t always done in this way. I think research needs to keep evolving so that the people it is intended to benefit have a meaningful role in shaping it.

Alex: I think this research matters because too often disabled people are expected to just get on with things that clearly do not work for us. The Unfair Index gives us space to say what everyday life is really like: the frustrating bits, the things that make life harder, and the changes that would actually help. It is then about others listening and doing something with what they hear!

Norin: For me, that’s ultimately what matters: that all of this translates into actual change.

To learn more about the Lived Experience Advisory Group, click here.