When disabled people are not included in health research, it has a big impact. We end up with low quality research that isn’t relevant for the real problems disabled people face. This article identifies three main barriers to disability inclusion that we can change.

1.        Ways of running research can exclude disabled people.

Ways of collecting and presenting data can be inaccessible. Ways of choosing research participants and measuring data might not be inclusive. For example, measuring mobility only using able-bodied norms like walking.

To address this, we need to design research that everybody can take part in. We need to be flexible and offer adjustments. We need to include disabled people from the start, when we decide on research questions.

2.        Monitoring disability inclusion is challenging.

Most research will only tell us someone’s condition or impairments. Information is inconsistent because we have lots of different definitions of disability. We need universal standards about what information to collect.  Having common standards will help us keep track of research. We could include disability with features like age and sex.

3.        The research workforce can be a barrier to disability inclusion.

There are limited numbers of disabled people doing research. Also, researchers don’t always report their own disabilities. This is because of ableist attitudes, stigma and a lack of support. We need funding to support research careers for disabled people. We also need to increase training for researchers without disability to reduce stigma.

Research can change healthcare. But we can’t know if those changes will be safe or effective for disabled people if they aren’t included.

To make sure we include disabled people in research, we need change at different levels. Everybody involved needs to commit to disability inclusion, not only the researchers.

Rosie’s response:

I have always loved doing research. I can get lost in it for hours. But I never expected to be involved in actual research. By actual research, I mean research that might have a real impact. Research that affects real people, people like me – people with disability.

I’ve been working with RAY as a lived experience research assistant for almost two years. I hadn’t been involved in any research projects like this before, so I didn’t know what to expect or what help I was allowed to ask for.

Now that I know more about how research can exclude disabled people, I am even more grateful for the team’s support. I get to work with flexible, open-minded researchers. They understand that I have good days and bad days, and let me take control of when and how I contribute.

Researchers can make assumptions about what disabled people can or can't do. They might think it is too hard to include disabled people in research. Sometimes it is hard. It can take extra time and resources, and we can't always change inaccessible systems. But just because something is hard, doesn’t mean it’s impossible. We can and should involve disabled people in research. This would change research for the better, for everyone.

About the author:

Rosie (she/they) is a lived experience research assistant living with mental illness. She loves the challenge of pursuing her interests in literature and health sciences concurrently and is proudly the only poet-physiotherapist that she knows of.