By Dr Maretta Mann

On 11th October Inclusive Futures: Reimagining Disability held a Book Club event in memory of the late Professor Justin Yerbury, an award-winning research scientist, disabled academic, and author of Fighting Fate.

Justin's wife, Dr Rachel Yerbury opened the event and spoke about discrimination in academia. Members of the Yerbury Group at University of Wollongong, Victoria Shephard, Thomas Walker, and Dr Isabella Lambert-Smith, followed with an update of the team's research.

Dr Rachel Yerbury: Disability and academia

"We are here today to remember the work of my husband Professor Justin Yerbury.

Among his many roles Justin was a husband, a father, a research scientist and a disabled academic. He took these aspects of his life very seriously and in each case he put all his efforts into being the best that he could be. And in doing so he set an example for other people in similar situations. ... Other research scientists were motivated by Justin's passion and energy, and by the way he shared, collaborated but never compared. As a disabled academic Justin fought with courage and dignity to find a cure to the disease that he, himself, lived with.

To say he was inspiring was an understatement. Justin showed the world what a completely paralysed person on life support could achieve. But he didn't only fight for himself and against the disease, he relentlessly fought against ableism and discrimination. Justin was well supported by the University of Wollongong who did everything they could to stand with him against ableism and inequity. But in the wider world he saw that this wasn't always so.

As a family we experienced discrimination in lots of ways and places. But what most upset him was the experiences of his colleagues and peers in academia. In 2020, Justin took on the National Health and Medical Research Council (NHMRC) over the fairness of achievement of policies to opportunity. He finally made them see reason and they subsequently changed their policies and criteria in an attempt to level the playing field.

Together Justin and I co-authored a paper in Trends in Neurosciences called "Disabled in academia: to be or not to be, that is the question". The paper highlighted the challenges of academics living with disability and neurodiversity, and the reluctance of people to disclose their disabilities. In the article we called for a reframing and a normalising of disability in the context of inclusion and diversity. Justin was a true fighter in so many ways and I hope his advocacy for disability rights will form part of how he is remembered."

Rachel then read an excerpt from Fighting Fate, which was painstakingly written by Justin using eye gaze technology.

Victoria Shephard: What is Motor Neurone Disease?

Currently over 2,000 Australians are living with motor neurone disease (MND), otherwise known as amyotropic lateral sclerosis (ALS). It is a neurodegenerative disease that affects specialised nerve cells called motor neurones, which control movement, including the ability to walk, talk, swallow and breathe. In MND the neurones die off and eventually cause paralysis. This is caused by the accumulation of toxic protein aggregates inside the motor neurones.

Supporters and collaborators: Fight MND, MND Research Australia, Molecular Horizons, NHMRC, Flinders University, Ooi Group, Ecroyd Group, Wilson Group, Dr Yee Lian Chew.

I Just Finished Fighting Fate by Justin Yerbury

I just finished reading Fighting Fate by Justin Yerbury, and I was so moved and inspired. It is a story about Justin's fight with Motor Neuron Disease (MND), which also afflicted many of his family members. But it is also a story of his passion to find a cure, which led him to be an internationally leading scientist in the field of MND.

The book described the science in a way that I found engaging and accessible. Later in the book, as his MND becomes increasingly disabling, he explores the deep topics of being a researcher with disability, what makes life meaningful and worth living, and human dignity.

What is most incredible is that he wrote the book using eye tracking technology, at a point when most of his body was paralysed. It showed to me the value of technology for enabling people with disability to tell their important stories. As a society we are richer for this.

Sadly, Professor Yerbury passed away last month, shortly after his book was released. But his story will continue to inspire and motivate others for years to come.

If you are looking for a book that will move you, challenge you, and make you think, then I highly recommend Fighting Fate. It is a truly remarkable story.

Proceeds from book sales will be donated to Fight MND.

Questions for readers (please comment below):

Have you read Fighting Fate? What did it make you feel or think?

A conversation with authors Dr Dinesh Palipana OAM (author of Stronger) and Nick Marshall OAM (author of Included), and Dr Maretta Mann.

In March, Inclusive Futures: Reimagining Disability hosted our inaugural Book Club event. The book club aims to promote awareness and to foster an inclusive culture, through the sharing of stories and lived experience of disability.

Hosted by Dr Maretta Mann, Inclusive Futures Strategic Development Manager, together with special guests Dr Dinesh Palipana OAM and Nick Marshall OAM, this interactive event gave attendees the opportunity to gain a deeper understanding of disability from different perspectives.

Dinesh Palipana OAM is an Australian doctor, lawyer, scientist and disability advocate. He is the first quadriplegic medical intern in Queensland, Australia. He is the second person with quadriplegia to graduate as a doctor in Australia and the first with spinal cord injury and is Chair of the Inclusive Futures: Reimagining Disability Engagement Council.

Dinesh talked about the discrimination he faced when becoming a doctor, and how this was overcome, through the support of his allies, as well as hard work and importantly, working to his strengths. He also talked about working to turn the tide and helping others, the way others helped him when he was starting out as a doctor with a disability.

“It is just one person at a time. If you can do that for one person, that's enough. So, I think that's how we made a change in these systems. It is one at a time. And I remember the investment that people made in me, so I try to pay that forward every day.”

Nick Marshall OAM is an Assistant Professor at Griffith University and owner of Surf Life Physio, a multidisciplinary private practice on the Gold Coast. He is the Senior Physiotherapist for the Queensland Academy of Sport in Swimming, as well as the Australian Surf Lifesaving Team, and on-field Physio for the NRL referees at Broncos and Titans games, State of Origin and Test Matches. Nick is a 2022 Churchill Fellow and an advocate for children with a disability and is the founder of the Albatross Nippers Inc, an inclusive surf lifesaving program.

Nick, who has dyslexia, shared how the Albatross Nippers idea come about… "One of the biggest things about nippers is the age‑specific criteria. Under-6 nippers, if they go past their waist, it is one‑on‑one water safety. So, my big argument was, if you're 25 and want to do nippers, so long as you can do what an under‑6 can do, you can do nippers. Surely, because an under‑6 will do that with extra assistance. It was the most foreign thing known to me to suggest that. There is an age manager with knowledge that everyone in their group can swim this far so they can take them to do an activity. That's what it is based on. It makes perfect sense but why not have a child stick with their similar age peer but have one‑on‑one water safety, and then they can join in with their friends? And so, you know, I kind of joked to people that you can be in between the flags where there's one lifesaver and 40 people but you can't do nippers when there's water safety around you and the safest place to swim. That was the start of it. I think it just was in the too hard basket for most people. "Why are you bothering with this? It is too hard. We don't need to do this." But it seemed right."