I’ve been blogging a little bit about topics at the intersection of accessibility and data sharing in the last year or so. This has been due to my having Long COVID and reinterpreting how I think about my body and my research. As I learn more about disability, I’ve made more and more connections between disability and data sharing. In today’s blog post, I want to examine this overlap in more detail to convince others that that the accessibility of research data is an important area to address.

According to the U.S. CDC, 28.7% of all Americans have one or more disabilities. Disability numbers out of the UK are about the same: 24%. Disability is actually very common. It’s a group that everyone is likely to be a part of at some point, especially as we age.

Due to the role of disability in society, disabled people are under-represented as researchers. Only 22.2% of people with disabilities hold a bachelor’s degree or higher (as compared to 42.6% of people without disabilities). It gets worse the further you go in academia. The 2023 U.S. National Science Foundation’s (NSF) Survey of Doctorate Recipients found that between 10-15% of U.S. doctorate recipients were disabled, with numbers varying across fields. All of this leads us to conclude that, while disability may be under-represented among researchers (who are more likely to hold higher degrees), it is still very present.

You may already work with a researcher who is disabled. With the high prevalence of non-apparent disabilities (disabilities that are not obvious by looking at someone), it’s likely that you know a disabled researcher even if you don’t know that they are disabled (waves hello). The point is that disability is common in research even if we aren’t always aware of it or talk about it.

How does this relate to research data? For all we speak about data being reproducible and reusable, I argue that data can not truly be reproducible and reusable unless it is usable by disabled people. If we speak about data being usable by those outside of our labs and how to format data to maximize this, disability needs to be a part of the conversation. Several people have made the point about the need for accessible research data before me, the most recent of which is Colón, Goben, and Karcher who argue for “actually accessible data”. I encourage you to check out their paper, which includes a call to action in this area.

The challenge of making data more accessible to disable people comes down to the details. There are known strategies for making business files more accessible, which can be translated into the research context, but this is far from covering the complete spectrum of research data. Additionally, some of the recommended accessibility strategies (such as formatting requirements for Microsoft Excel files) are in conflict with current reproducibility recommendations (such as to use CSV files with no formatting). At this point in time, there is only a small amount of guidance specifically about making research data files more accessible.

I don’t have an answer to the challenge of making research data files more accessible, though I am slowly trying to chip away at pieces of the challenge. I hope other people will join me in this exercise. I plan to blog more here in the future about any progress I make in this area.

This work is licensed under a Creative Commons Attribution 4.0 International