Due to an admin error, only one supervisor could make it to yesterday's meeting. So I just met C for a chat and we've rearranged the proper meeting for the 23rd. However, that chat turned out to be very useful. I had sent them both a draft chapter structure for the thesis (not due until December 2025 - my deadline) but it really cheered C to see it, he got quite excited by it. And that got me feeling like I am on top of things.
We talked a bit about ethics - the formal ethics approval system seems so dry and restrictive, covering the university's arse more than anything. That might be unfair of me. But here's one of my many concerns re: ethics in academic research.
People with mental health issues are usually seen as ‘vulnerable’ and indeed much research – not just medical – has been harmful to us. However, many times, ethical review boards require researchers, in the name of protecting participants from harm, deny their agency and even perpetuate epistemic injustice. mental illness epistemes dominate research production and re/create subjugation through hermeneutic injustice. (Voronka and LeFrançois, 2022)
However, disabled philosopher, Shelley Tremain offers a different approach to understanding vulnerability – she talks about people who are vulnerabilised
Like disability, vulnerability is a naturalized apparatus of power that differentially produces subjects, materially, socially, politically, and relationally. In short, it is by and through the contingent apparatus of vulnerability and other apparatuses that certain members of the population are vulnerableized.” (Tremain 2020)
In other words - people aren't always vulnerable but that society makes them vulnerable. And when we are seen as vulnerable, researchers may try to 'protect' us in ways which actually harm us. For instance, insisting that vulnerable people need to be kept anonymous.
I read a paper by a researcher who studied feminist organising in a city in former East Germany. When she told them they would be anonymised, the women were not pleased. By keeping their names confidential she “was silencing their challenges of systems of oppression and injustice.” (Guenther 2009, p. 414). I am going to be working with a collective advocacy group that loudly challenges the mental health system. So what will they think about being anonymised.
Guenther says that by anonymising individuals, organisations or places, you're obscuring the context. In the type of research I am doing, the context is very important.
And sometimes, Guenther argues the renaming is a kind of “thin veiling” that protects the researcher but leaves the research subjects identifiable. (Guenther 2009, p. 418). I've seen this in research done about the area I live in - I could see through the pseudonyms to recognise places and organisations.
So this is a discussion for myself and the organisation I will be working with - above and beyond and before the ethics approval process.
Before C, S and I meet on the 23rd, I will have delved a bit deeper into the ethics requirements of the university and I will have had a chat with the organisation I will be working with about what their ethical concerns are.
PS Yes, I am keeping them anonymous for now because we are at the very early stages of discussion about how we can work together.
References
Guenther, K. M. (2009) ‘The politics of names: rethinking the methodological and ethical significance of naming people, organizations, and places’, Qualitative Research, 9(4), pp. 411–421. doi: 10.1177/1468794109337872.
Tremain, S., (2020) COVID-19 and The Naturalization of Vulnerability Available at https://biopoliticalphilosophy.com/2020/04/01/covid-19-and-the-naturalization-of-vulnerability/
Voronka, J. and LeFrançois, B.A. (2022) 'Mad Epistemologies and Maddening the Ethics of Knowledge Production'. In: Macías, T. (ed.) Unravelling Research: The Ethics and Politics of Research in the Social Sciences. Fernhood Publishers, pp. 105-130
