We still do not know what causes schizophrenia, how to test for it or how to treat it, except by administering powerful anti-psychotics, drugs which cause so many terrible side effects – including sexual dysfunction, weight gain, incontinence and drooling – that often the cure seems worse than the malady.
For that reason, the study of what social measures can aid recovery is one of the few avenues of research that might possibly result in real practical help for the roughly 250,000 people living with the illness in Australia. A simple social measure, for example, might be a mental health peer worker who takes a person with a psychotic disorder out for a game of tenpin bowling. Which may prove to be just as therapeutic as an hour with a psychologist. It would definitely be cheaper and more fun.
Over the past two years, my collaborator and I have gathered a database of people diagnosed with schizophrenia who are in various phases of recovery with the purpose of demonstrating that this condition, which has often been interpreted as a death sentence, is in fact recoverable if the right medical and social supports are in place.
People with schizophrenia, for example, improve when they have friends and regular social interactions. Family support is also often essential for recovery. And yet because the importance of family in recovery from schizophrenia hasn’t been researched, measured and proved, support measures for families are practically non-existent. (Funded mental health research priorities rarely reflect those of people living with mental illness, or their carers.)
Gathering a minimum number of participants for a project about schizophrenia and recovery has consumed hundreds of hours, largely because it is not easy to get people to volunteer to tell their stories about an illness that is so stigmatised, even when they’re anonymised.
By the end of 2020, my colleague and I were finally ready to write up the first instalment of our findings – I would write the personal stories of recovery; my collaborator would write up the corresponding social and anthropological analysis. But then COVID-19 arrived, followed swiftly by redundancy offers. Now, as an “honorary visiting fellow” of my former employer – (a fancy phrase for unpaid) – I will continue this research in my own time and with my own resources. In other words, voluntarily and with zero funding.
Which made me wonder how many of the other thousands of sacked academics are doing the same. And just how much of Australian research is being undertaken free of charge. Even before COVID-19, it was suggested that up to 25 per cent of research publications submitted to Excellence in Research Australia (ERA) came from the emeritus faculty, long-term academic visitors and retired academics – all of whom are unsalaried.
The researchers “let go” as a result of recent university redundancies will possibly become a sub-group of the Australian grey nomads, reminiscent of the European vagabond scholars of the medieval period. During the Black Death, these devoted intellectuals sheltered in courts and monasteries, doggedly pursuing their vocations and determinedly preserving knowledge, waiting for the day when civilisation would finally re-emerge from the ravages of a virus nobody understood (because of a lack of research).
The “knowledge industry” was a phrase we used to hear a lot and for a brief period being a “knowledge worker” seemed to be a semi-respectable occupation. But now, in this period of pandemic-induced downturn, the focus is firmly back on the hard concrete, pub-test-passable occupations. “Jobs, jobs, jobs” might be the slogan but we all understand that is code for muscly men in hi-vis jackets driving utes. The image of a grey-haired woman with a furrowed brow in front of computer screen is not going to make it into any ad campaign about job creation.
In a time of austerity, the job of creating new knowledge, which is the primary purpose of research, is considered an indulgence we can’t afford. But if you think research is expensive, try ignorance.
We won’t really know how much knowledge we’ve lost until we go looking for it. When the small global health team in the United States that was responsible for leading a response in the event of a deadly pandemic was disbanded in 2018, few people could have predicted how much it would be needed two years later. Sometimes the loss is only felt when it’s too late. So if you happen to see a little old lady wandering the neighbourhood systematically rummaging through the local street libraries – (because she has not only lost her job, but also the borrowing rights to her former university library) – do help her across the road. That battered briefcase she’s clutching may well hold research we’ve yet to understand and that civilisation may one day need.
Gabrielle Carey is a proud vagabond scholar. Her most recent book is Only Happiness Here (UQP).