Breaking barriers for researchers with disabilities
Q&A with Justin Yerbury, Professor of Neurodegenerative Disease at Wollongong University
Justin Yerbury is professor of neurodegenerative disease at Wollongong University in Australia. His research is motivated by a family history of motor neurone disease (MND), a condition that results in the loss of voluntary motor control. In 2016 he was himself diagnosed with the condition.
Justin has recently been awarded an Investigator Grant from Australia’s National Health and Medical Research Council (NHMRC) to continue his MND research. However, this was only after he appealed the initial rejection of his application on the grounds that the assessment of his track record had failed to take into account the impact of his disability. His case has also prompted the NHMRC to revise its policy on how researchers’ track records should be assessed.
I interviewed Justin via email for a Nature Index article on the challenges facing researchers with a disability. Below is the full question and answer (my questions are lightly edited to add context).
JB: We met in 2013 at an Australian Academy of Science meeting in Melbourne. Thinking about that made me realise that you are in a position to compare being an established researcher without a disability to your life now as a researcher with a disability. So my first question is what are the biggest challenges you face as an academic now that you didn’t before?
JY: That Melbourne trip seems like a lifetime ago!
I do appreciate the unique perspective that my two careers (pre and post disability) have given me. A period of research without any barriers has given me clarity around the aspects of academia that provides challenges to certain groups of people.
There are two major things that I have observed that provide challenges to me now that were taken for granted before my disability.
First, productivity. Prior to my disability, I was on the clock 24 hours a day. I was in close contact with several overseas collaborators at odd hours. Weekends and evenings were commonly filled with grant writing or manuscript editing. I had to keep up that level of productivity to be competitive.
Now I am physically limited to about 5 hours per day, and I type using my eye-gaze system which at best is ten times slower than I used to type and at its worse is a frustrating grind. The lower productivity means that to publish our work in a timely manner, I often contribute to collaborative papers which is not viewed as a significant contribution to the field.
Second, travel. I realise that travel might not seem like a crucial aspect of an academic career, but it is vital. Let me explain. I used to travel a lot. Travelling allowed me to visit and maintain collaborations in other parts of the country and indeed the world. Before my disability, I would have typically travelled overseas twice a year, along with several domestic trips to speak at conferences or seminar series. The value of such trips is immeasurable. In particular, presenting to peers that may be reviewers or assessors can be beneficial when submitting manuscripts or grants. Having a disability can mean that you are invisible to your peers.
JB: One of the issues you have alluded to on Twitter is that basic tasks like getting up in the morning, eating etc take a lot of time. This got me thinking about broader questions about academic culture. In particular, the expectation to “overwork” inevitably penalises anyone who is unable to do that — whether because of disabilities, health conditions, or responsibilities as a caregiver. So I’m interested in your thoughts about disability and academic culture.
JY: I think that in academia, we measure productivity in a way that rewards a narrow demographic. I believe that the current way of thinking about career disruption in Australia is to count up days that you could not work on your research and extrapolate your outcomes to be 100% time equivalent. This totally misses the point that we are using a biased method of productivity to begin with.
JB: Why should the scientific community as a whole care about the challenges facing researchers with a disability? To me, it seems there are at least two kinds of answers to this question (and other questions about diversity in science). There’s the issue of equity and fairness. But then there is also the benefit to science of having diverse perspectives. I’m wondering if that’s how you see it?
Of all the different industries that one could be employed in, I would hope that academia would be particularly open to ideas from a diverse group of people. In biology, we understand that diversity of a population is advantageous during times of change or stress, but this principle also applies to academia. It is an advantage to have a diverse group of people working on the global challenges being tackled by science today. What would theoretical physics look like without Stephen Hawking?
JB: Are there ways in which your own experience of MND has influenced your research?
JY: One thing that has become clear to me is that there are many interesting questions that can be pursued in biomedical research, but not all are actively getting us closer to changing disease outcomes. I have certainly sharpened my focus.
JB: Finally, what can other academics do to support academics with disabilities?
JY: One surprising outcome of the pandemic has been the success of video calls and conferences. I hope that this is maintained after the pandemic is over.
Further reading
“Textbook case” of disability discrimination in grant applications: My article for Nature Index
“The radical idea is that someone with a disability can be an exceptional academic”. My conversation with Dr Bonnielin Swenor on the challenges facing researchers with disabilities
“I’m towing a jumbo jet” — Life with MND: Clare Watson’s brilliant feature on Justin and his MND research
MND researcher Justin Yerbury prompts changes to NHMRC grant funding process: ABC coverage of Justin’s successful appeal to the NHMRC
