Research Ethics and Vulnerablised People

s067369810 January 2023Leave a comment

coffee in a cup

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

Jan 10, 2023

back to the PhD 1

s06736981 January 20231 Comment

abstract painting blue and white

2022 wasn't the easiest year for me. My mother died, my cat died and I had an accident which wasn't seriously but could have been. I also started a new job and finally realised I couldn't manage to work two jobs. So I gave up the older one.

My progression board finally happened in August - my examiners were both ill in June. It was a very good experience. Both had read my paper carefully, had lots of interesting questions and suggestions and I was very pleased with it.

Then I had my accident and bashed up my shoulder. And I have done very little for my PhD since then. I've been too busy, too tired, too overwhelmed and/or in pain.

This month, I am starting my 3rd year and I had been planning to hand in at the end of 2025 so that I could be a doctor before my 60th birthday. But I have decided to forget that deadline. I am just going to do see how long it takes.

On 9 January, I will meet my supervisors and we'll plan the coming year. They've been so supportive and encouraging all along and I'm looking forward to the 9th.

Jan 1, 2023

Stuff

s067369827 June 2022Leave a comment

I had great plans to blog every week no matter what. But stuff happens.

My mother had an accident in late February and died on 16 March. I didn't do much PhD stuff until mid April again.

Plus I have 2 part-time jobs, both of which were very hectic until this week. I finish one of them on Thursday. I feel very sad about it but also excited to have a bit more time and a lot more headspace to think, read, talk and write.

My progression board - where I get told if I can go ahead with my research or not, basically - was planned for last week. I had to write a 6000 word paper about my research - why I wanted to do it, what research and theories I was drawing on, how I wanted to do it and what my plans were. I did that and got it in just on time. At the board, I would have done a 20 minute presentation about the research to two examiners and they would have asked me questions. And then they would say if it was good enough for me to proceed or if I needed to do more work or even if I should just stop there, goodbye.

It didn't go ahead because both of my examiners were unwell. So it's going to happen mid-August.

I am pretty confident about what I've written and was looking forward to the board. I was excited about talking about my research with two people who haven't been involved so far. I know them both - they are people I respect and people who I know would be constructive and interested. So I am looking forward to August.

So I have about 6 weeks before the progression board and am only working one job from next week. And I've booked some annual leave from that job. I will be reading, swimming, drinking coffee, playing with the cat and seeing friends. And thinking and writing I hope, some of which will appear here.

Jun 27, 2022

I’m on strike

s067369820 February 2022Leave a comment

I used to think that being an academic was a cushy number, sit about all day talking and reading books and writing articles and books. I've known for years that's no longer true - if it ever was. I am a PhD student at the University of Edinburgh and I work part-time at Queen Margaret University.

But as a member of the University and College Union at QMU, I will be on strike over the next couple of weeks. Why?

I get emails to my PhD account about how my studies are being disrupted. Yes, they are. But more by the fact that so many of the people in my school and in the wider university are overworked, stressed out, and exhausted than that I am not getting emails from my supervisors or that I won't cross the picket to go into the library.

Universities are wealthy institutions* and yet they operate on casual academic labour, expecting people to work unpaid overtime as a matter of course. The pay gap suffered by marginalised people is growing. And wages are going down.

UCU members in many universities are on strike over these Four Fights as they call them. Others are taking Action Short of a Strike - which is basically only doing the hours and work you are paid for and no more.

And in many universities, the pensions are being cut. QMU is a post-92 university - ie one which used to be a polytechnic which means that we are in a different pension scheme so we're not on strike over pensions.

The hashtag on twitter is #OneOfUsAllOfUs

* The University of Edinburgh had a total income of £1,175.6 million in the fiscal year ending ending 31 July 2021 and the Principal and Vice-Chancellor has a benefits package exceeding £400,000 https://www.ed.ac.uk/finance/accounts

Not all universities are so wealthy or as large - Queen Margaret University's annual income for the same fiscal year was £44,031,000, for instance.

Feb 20, 2022

self-society-writing

One of the ways I am doing my research is by writing about my own experiences of collective advocacy.

I have been around for a long time so I have memories and thoughts and experiences that are interesting in and of themselves. I am not going to ignore all this! So I am writing down what I can remember. Some of it is very scrappy but some of it is quite detailed.

As I write, I find myself asking questions about what happened, wondering about the gaps in my memories, and realising that I feel differently about somethings now than I did at the time. It's not autobiography - but autoethnography - writing about my experiences in their social and political context.

The photo below is from the first Oor Mad History book with a quote from me about smoking at collective advocacy meetings in the 1990s.

And the other thing I remember is the amount of smoking that went on and when rules were brought in that only two people at any one time could smoke or only the person who had the ashtray could smoke and people just staring at the ashtray waiting for it to become free.

screenshot of a book: photo of a full ashtray and text saying "And the other thing I remember is the amount of smoking that went on and when rules were brought in that only two people at any one time could smoke or only the person who had the ashtray could smoke and people just staring at the ashtray waiting for it to become free." — screenshot from OMH book

A simple memory conjures up the physicality of being in a room full of people smoking and locates it in a time before anti-smoking policies had really taken hold. Smoking was a key part of being a mental patient at the time.

I've now written quite a bit and I find myself using these writings to explore some of the concepts I am studying. For example, I wrote about a meeting I attended with a powerful official. I then used it to explore concepts like epistemic injustice, candidacy and power.

It won't be the only research method that I will use. I will
read policy documents from the Scottish Office/Executive/Government, the NHS and local authorities.
explore the Oor Mad History Archive to find out what collective advocacy groups have been saying and doing.
and of course, talk with people - individuals and groups [1]

I think I will be better able to quieten my own opinion while reading/listening to others because I have it written down. At the same time I will be better able to understand and explore what others have said and done having thought about my own. I am interested in finding out where we all agree and where we don't and what questions come from that.

[1] I still trying to work out what that will be like - I am not sure simply interviewing people and writing up the notes and analysing them is a good idea for my research. I am thinking of something more conversational than the usual research interview or focus group can be. I have a few thoughts, any ideas welcome!

Feb 13, 2022

Not everyone is a blue worm.

s06736987 February 20227 February 2022Leave a comment

I love a silly metaphor.

This morning, I was writing about how I learn and what that means for me as an educator and for my research. I suddenly felt myself sort of wriggle and thought of a worm! So this is where this drawing came from. a cartoon drawing of a blue worm going around a lump of dirt which a blue worm, coming up against a big lump of dirt that is labelled 'complicated knowledge - with lines leading to words "stuff you're expected to know", "big words", difficult writing.

So there's me, a blue worm, coming up against a big lump of dirt that is complicated knowledge - the big words, the difficult writing, the expectation that you know a whole lot of stuff already. And my best strategy - well, my favourite one - is to wriggle around that lump.

It might not be a good strategy. Not burrowing through that big lump might mean the next lump is even harder. But sometimes, I wriggle around it, look back and it looks less big and dense and I can burrow through it just fine. Or maybe I realise it wasn't all that interesting or relevant. And I know there are big holes in my knowledge because of ignoring those big lumps.

(But I did get a degree in a biological subject without knowing the difference between meiosis and mitosis. Still don't. I decided it was too hard and time was short in that old instrumental, pass the exam and forget it all mentality I used to have.)

But not everyone is a blue worm who is too lazy to be bothered with dense lumps of knowledge and confident to be ok with it.

End of metaphor: people learn in different ways. Some people cannot wriggle around the difficult stuff. They have to go through it. Too often it's too dense for them at that time. Or they are told they are too stupid so they don't even try. And what is one small wee lump to one person is a massive one to another.

I teach Mad Studies. I research how and what people learn by being involved in activism.

So when I am teaching and when I am researching, I need to remember that not everyone is a blue worm.

Feb 7, 2022

research questions

s067369831 January 2022Leave a comment

In 2019 I wrote my proposal and had 3 research questions.

In January 2021, I started my PhD and rewrote my research questions.

A year later, I don't like my research questions. I am looking at them and thinking - how dull and clunky they are.

Yet, I need research questions. I have a progression board paper to write. And everything I've read about research insists they are important. And I agree. How else will I stop myself drifting in the sea of downloaded pdfs?

A large sheet of white paper with the following words written on it. "Research questions. Does collectrive Advocacy in Scotland challenge epistemic injustice? How? How do people (who?0 involved in CA make sense of what they do?" There are three pens on the paper, green, red black. — A3 paper with words!

So am now "wasting time" by going back to my early notes and the research text books. I am writing words on A3 sheets of paper and drawing arrows between them. I am quite enjoying it to be honest, I love writing words on A3 sheets of paper and drawing arrows. I am quite good at it.

Having some research questions that are reasonably focused and clear will be a big help. But I know I will probably have to rip them up and start over a few times over the years...

The word of the day: ITERATIVE

Jan 31, 2022

Learning to Challenge Epistemic Injustice