By Caroline Moss

This week is Invisible Disabilities Week, a time to raise awareness of disabilities that often fly under the radar but still have a substantial impact on the people affected. As someone who has only become disabled in recent years, it feels like a good moment to reflect on what that means for me, what it means for digital design, and what the rest of us can learn from people with invisible disabilities. 

For the governments and public sector organisations we work with, recognising that the people relying on their essential services may have needs that no one can see is imperative. Not only that, but designing accessible services more often than not improves the user experience for everyone, and a few simple fixes can make a huge difference.

Acquired, manageable and easy to downplay

One in four people in the UK is disabled. An estimated 70–80% of those disabilities are “invisible”: not obvious to others, but with a substantial, long-term impact on daily life. As a result, people with invisible disabilities often face a lack of awareness and a struggle to get the support they need. 

For me, becoming disabled had the added challenge of happening later in life, which is also surprisingly common: around three quarters of disabled adults became disabled during their working life. 

We often think of disability as something you’re born with, something that comes with you through life and that you learn to adapt to as you grow. In fact, most disabilities happen to us once we think we’ve already found our “normal”. For me, becoming disabled was a shock at first, but later became something I could push to the back of my mind.

For a long time, minimising and managing my disability seemed like the easiest, and often the only, option. Now I’m taking a different approach: I want to be open about it and learn from it.

Designing for needs that aren’t always visible

Design sits where people meet the systems that can help or hinder them. Good digital services should be so intuitive that people barely notice them as they get their tasks done, and a good designer tests their assumptions and iterates as they learn. 

Understanding users’ different needs matters, because invisible disabilities can affect people in unexpected ways: from the fatigue that makes a long online form exhausting, to the anxiety that a countdown timer or an unclear error message can trigger. 

The good news is that a single change can help people with many different needs. Screen readers aren’t only used by blind people. Some people with dyslexia, low vision or chronic fatigue rely on them too, so a form that doesn’t work with one can lock them out. Neurodivergent people, including those with ADHD or autism, may find vague or jargon-heavy instructions hard to follow, so plain, step-by-step guidance matters. 

Barriers like these are often easiest to spot for the people who live with them. Every day I navigate small hurdles that others rarely notice, like a long meeting with no chance to change position, or forgetting to move and take a break, then running out of energy by the end of the day. Over time, I’ve learnt to anticipate these moments and find my own ways around them. That habit of noticing puts me, and others in my situation, in a strong position to test everyday systems, pinpointing the moments that could trip anyone up and the edge cases others might not think of.

In my work on digital service design, I’ve seen what a difference it makes to involve disabled people early on in the process, rather than consulting them once a design is finished. User research should be a core part of making a design accessible, and watching a range of people navigate a system shows where it needs to be more intuitive. At Oxford Insights, that means building inclusivity into every system or technology we advise on. 

The same principle applies as AI becomes more integrated into public services, and it raises new questions about whether AI will make those services more or less accessible. 

AI tends to reflect the most common patterns in the data it learns from, so when it’s used in design, it can default to the average user and overlook everyone else. Used well, AI can open up services to people who have been shut out. Live captions, plain-language summaries, voice input and support with long forms can all remove barriers for people with invisible disabilities. 

But AI built around a “typical” user can just as easily create new barriers, from chatbots that leave no route to a human to tools that don’t work with assistive technology. As recent research from Brunel University points out, “there is little guidance on how to ensure that AI-enabled services remain accessible and inclusive”. AI can only be a force for inclusion if disabled people are involved in shaping it from the start.

Owning it

Inclusive practice matters inside organisations too. At Oxford Insights, every member of staff is asked to write a user needs document setting out how they work best and what they might find difficult. This lets everyone say what they need without disclosing more than they want to. An open environment where people feel supported to share their needs, and see them met, makes it easier for anyone with an unseen need to raise it. For me, that can be as simple as taking a break when I need one or making other small adjustments, so I can do my most productive work.

Developing an invisible disability has changed me and the way I approach life. At first, I tried to make it less visible. Now I realise it has taught me important lessons, and sharing them can help others too. 

More and more, I feel the need to both challenge and own my disability. It can be hard at times, but it has made me better at defining my needs and at noticing how seemingly simple systems can be a barrier for others. I now wear a green Hidden Disabilities Sunflower wristband. For many people, it’s a sign that someone might need a little more support. For me, it’s also a symbol that I’m disabled, I’m out here in the world, and I’m open to talking about what that means for me.

Grid image by Marc Pell on Unsplash.com