FAB Gab Episode 16: Laura Cupples on a Disability Framework for Health Policy Research
1:12AM Jan 9, +0000
Speakers:
Kathryn MacKay
Laura Cupples
Keywords:
disability
people
paper
philosophy
research
caregiving
disability benefits
interview
question
work
folks
independent living
disabled
project
transcribing
fab
values
community
themes
philosopher
Hello, and welcome to this is the podcast International Journal of Feminist Approaches to Bioethics brought to you by FAB Network. My name is Kathryn Mackay. And today I'm joined by Laura couples from the University of Tennessee in Knoxville, to discuss her paper, 'Knowing with the Disability Community: Building a Disability Standpoint for Health Policy Research.' Hi, Laura.
Nice to meet you.
Nice to meet you, too. Thanks for joining me.
Absolutely. I'm excited.
I'm excited to have you here, too. This was a really interesting paper. I'm very keen to talk about it with you. So first question, I wonder if you could give our listeners the kind of elevator pitch of what this paper is about?
Sure. So I'm a disability scholar, I do philosophy of disability. But unlike a lot of folks that tend to focus on ethics, I tend to focus on on philosophy of science and epistemology of disability. And just trying to explore different epistemologies of disability, I was kind of startled by how little material I found out there, how little work there was, on standpoint theory and disability. You would think that that would be a really natural direction, to see epistemology of disability go. And, you know, maybe it's out there, and I just haven't found it, or maybe it's out there by another name. But there's just not a lot and what is out there is mostly focused on embodied and subjugated knowledge. And there's very little about kind of your social situation and how that affects your disability standpoint, and how being a part of a community of folks with disabilities affects your standpoint. So I partly was motivated for that reason and partly wanted to do a project that would let me work more closely with the folks I did my postdoc with, which is the collaborative on health reform and independent living at Washington State University and a couple of other universities. There are also some folks at University of Kansas and some other places that are affiliated. They're all health policy researchers. And so I also wanted to do something that would use some of the methodology that I saw in their work and expose me to a new skill set. So I, the way I tackled this project was to do an interview based study of the way that health policy researchers worked from a disability standpoint, and the researchers with the CHRIL are almost all disabled themselves. And I went into this project, assuming that what I was going to learn about was how people's disability identities influenced their research, you know, how their own personal experience shaped the kinds of questions they asked and the way they interpret the data and their motivations and things like that. And that wasn't what I found. So I kind of had to stop midstream and reformulate my research question to match what I was actually finding, which was that for most of these folks, it wasn't their personal experience was disability that shaped their research. It was their connection to the disability community. And they connected with that community in a lot of different ways. Some of them through caregiving for family members with significant disabilities. Some of them had worked with advocacy groups, working with local centres for independent living or other organisations, and some of them kind of got involved with the disability community through the research itself by doing participatory research and partnering with members of the disability community in that sort of work. And, you know, of course their their personal experiences contributed but it was definitely kind of a complex interaction of a lot of different factors and was definitely a lot more robust because of their interactions with that community. So that's the direction I took. Yeah.
Yeah, something that I really liked about your paper was, so you mentioned in your paper about how the research that you were doing or the findings that you were getting early on, made you rethink and shift your research question. And it also, it seemed like your paper, it's kind of like you're doing research into research. So your paper reflects the changes that your own research had to undergo while you were doing this research with these people, but it's also about how their reflections and experiences affect their research questions for the communities that they're working with. So it was kind of a meta meditation on research methodologies and practices.
Yeah, absolutely. So the first philosophy of science conference that I went to that really captured my interest, and that I was really excited about, you know, the work that I was hearing about was the Society for Philosophy of Science and Practice Conference, in Toronto, like 10 years ago. My, I was telling my dissertation director, that I wasn't sure how I felt about philosophy of science that, you know, the kinds of questions that people were asking, at least in traditional philosophy of science really didn't interest me. And she's like, come to this conference with me, I promise you, you'll like it. And I did. And I got to see people working alongside scientists, and having their work really influenced by scientific practice, and being held accountable to, you know, the work of, you know, scholars interdisciplinarily... is that a word? (laughs). But yeah, so since then, you know, I've had a real interest in measurement and other sorts of philosophy of science and practice themes. And when I got the opportunity to do this postdoc with health policy department, I really wanted to get involved with the kind of work that they were doing, and kind of figure out what sort of research they did and how they did it. And this was an opportunity to do that. And, you know, they were really kind of perplexed about what to do with me at first, because none of them had ever worked with a philosopher. When they hired me, they had initially tried to hire someone else who had a background in the social sciences, and they ended up backing out at the last minute to go do a job at Facebook. And so they called me up and they said, 'well, we've never worked with a philosopher before, but we're really interested in seeing what you could bring to the group'. And so for the first six months or so they're like, 'hmm maybe just sit in your corner and do your philosophy, and we'll do our thing'. And, you know, they weren't real keen to let me get my hands dirty, and get involved in the sort of, you know, scientific work that they were doing. You know, I, I didn't have much background in statistics, you know, I'd never really done any qualitative research before. So they really didn't know, you know, how qualified I was to help. And so part of this was also about convincing them to let me in the front door, and involve me in that research. And it worked. I managed to get involved in one of their other research projects after I started this paper. So yes, it's it's definitely consciously about scientific research. And I definitely wanted to be responsive to what I was hearing from them and not just stick to my assumptions. So that's what I did when they surprised me and I realised that my initial research question just didn't work. I said, 'Okay, well, what are they telling me?' And I followed that rabbit hole.
That's great. And I, it's, I mean, what a great opportunity that you had to demonstrate the value of philosophy to people who hadn't worked with philosophers before. I think that's fantastic. And it's also just really interesting to hear about how that.. how that process went. And I think it makes me want to ask you, if you faced any particular challenges when you were writing the paper? I mean, I think that it sounds like encountering this challenge to your own research question would be one where you'd have to kind of rejig the way you were thinking about it, but were there others? Or how did you find that one?
Yes, I'd never really done any interview based research before. And because the group that I was studying was, you know, the CHRIL, it was the 'Collaborative on Health Reform and Independent Living', I didn't really feel like I could have them also work alongside me in the analysis, and the kind of the planning of the paper, you know, they were the subjects that I was working with. And, you know, there aren't a lot of philosophers who do interview based work. There are a fair number of bioethicists, but it's, it's not really something you see a lot of in philosophy of science. And so I wasn't really sure who to reach out to, that wasn't part of the group that I was studying, that would also be qualified to help me and would be willing to help me as a philosopher. So I definitely sort of threw myself into the deep end, not really knowing what I was doing. And, you know, things like developing my interview questions, you know, am I being too leading, in my, in my interview questions? Am I assuming too much? Not really knowing, you know, if the initial questions I asked were going to be appropriate. And some of that I figured out as I went along, and I ended up doing a number of follow up interviews with people, after I kind of did the initial sort of interviews and figured out better what I was working with and what kinds of information I was able to get. And then, as I was revising the paper, after I'd already gotten my revise and resubmit, I connected with a nursing professor at Gonzaga.. Gonzaga, I always mispronounce it (laughs).
(laughs).
My students got in my case for that for a year and a half while I taught there. And she and I had co authored another piece. Late in my time, in my initial postdoc, and I, she has a lot more experience than I do was qualitative research. And I kind of said, 'Okay, here's what I did, can you explain to me in like, academic terms, what that was, because I'm not sure how to label this'. And, you know, here's kind of how I went about this. And she helped me present it in more professional terms, and kind of went over my work and made sure that it, you know, met the standard. And she and I are co authoring another piece now. Her name is Karen Colorafi and she is, she's fantastic. So a shout out to her. So that was definitely a challenge. And, you know, just some of the mechanics of things like, you know, transcribing six or seven 45-minute interviews, when you don't really have a budget to pay somebody to transcribe them for you. You know, I, I tried, you know, transcription software, and it had so many errors that it basically didn't save me any time. And I finally just ended up transcribing it all by hand. So that was really time consuming and wasn't something that I'd necessarily planned on putting a lot of time into. But you know, that in the internal review, or Institutional Review Board, getting the approval from them when I.. that's not a process I have a tonne of experience with. You know, and I put in my request over the summer, and apparently, they don't do a whole lot of that sort of work over the summer at Washington State University. So I put in the request in like June and I finally heard back from them at the end of August. So I had this long lag where I wasn't able to do anything. So that was a challenge too, just a lot of things that kind of delayed my work.
Yeah, yeah, it sounds like you had a lot of sort of shadow curriculum to catch up on.
Yeah.
Yeah, yes. Well, so I wonder if you could just share some of what you think of as the kind of main points of interest? Or are some of your main findings, because you've got a lot of really interesting themes, I think that you pulled out, I wonder if there are any that you want to highlight for the listeners?
Yeah, so I spent time talking about kind of these four different avenues for building a disability standpoint, you know: being disabled yourself, being a caregiver, being an advocate, and, in participatory research. And any one of those by itself could have been a paper, and it was, you know, it was a long paper to begin with, I think, you know, before IJFAB, you know, formatted it down, it was like 45 pages, it's like, okay, I really, I can't let this paper get any longer, I'm just going to have to save this for, you know, future work. But just to give an example. The folks I talked to when I was interviewing talked about how they learned a lot about disability through caregiving, and you know, I, I pulled kind of from Eva [Feder] Kittay's work on ethics of care, and kind of looked at, you know, what the ideal caregiving relationship is supposed to look like. And, you know, the folks that I interviewed, definitely presented it in these positive terms that it was, you know, you know, kind of about how much they've learned and as something that they felt was a way of seeking justice for and empowering the people they cared for. But a lot of folks with disabilities don't find caretaking relationships, liberating or empowering for a lot of people it's really problematic because there's this definite power disparity between the caregiver and the charge. And I read Serene Chader's work on inadvertent ventriloquism, kind of talking about how folks in international development can kind of project their own values and priorities onto the people that they're caring for or working for. And, you know, she talks a little bit about that in the context of caregiving. And I definitely think the same thing happens in those sorts of relationships that you end up as a caretaker, especially if you're, you know, caregiving for someone with perhaps a profound disability or an intellectual or developmental disability, who isn't really able to communicate their needs and wants and desires as effectively, you know, just sort of figuring it out or projecting or, you know, mistakenly believing that the things that you want and that are important to you, and that you value are also the things that they value. And I, I pushed the primary person that I interviewed on that section about that, and she's like, Oh, well, I think, you know, it's really important that people that are in caregiving relationships are also advocates, and that they also have this kind of disability education. And I'm like, I'm not sure that education and consciousness-raising really addresses that power disparity. It's just so tricky.. and kind of tried to tease out kind of the ways that that source of knowledge can be problematic, you know, the things that you learn are not necessarily the things that, you know, the disabled person learns from being disabled. So, that was definitely an area that I felt like I had to push back against what I was hearing, or, you know, push them to think about caregiving along those lines and kind of challenge, challenge them to just see the ways that, you know, that wasn't always an unproblematic way to learn. So that's one example of something that I could have expanded on a lot more, you know, and as it was, I managed to give it about a page. And that's all the space that I had in my massive manuscript.
(laughs). Well, so I have another question for you that and I guess this is probably the last one that we have time for. But I'm really curious about what the next stage of the of the research is, because you work so closely with people who are working in health policy. So I'm wondering if there are next steps that involve kind of feeding this information back to the people that you were working with at CHRIL, or, you know, more papers to come out of this as well.
Yeah, I'm working on a paper right now. With my co author, Karen Colorafi that is kind of a second analysis of another set of interviews that we did during my time, at the CHRIL. And the original project was called the Disability Stories Project. And it looked at the ways that US health policy affected efforts at independent living and employment by folks with disabilities. This one is, you know, and that first paper was definitely a health policy paper. It was not a philosophy paper. This one is definitely a philosophy paper. And it's kind of a science and values, analysis of disability values versus societal values, and how they affect Disability Benefits Administration in the US. So things like social.. I always mess up the acronyms, SSI and SSDI, which are the key disability benefits that are run by the Social Security Administration in the US, and just looking at the ways that those values clash, and kind of the resultant disservice that's done to folks with disabilities. So it, it kind of starts with a look at the economic model of disability, which doesn't get a lot of play in philosophy of disability, but is definitely the workhorse of health policy work on disability policy, kind of the presumption that if you are fully disabled, then you can't work or you can't support yourself. And so you're dependent on benefits, or you're part of the need based economy instead of the work based economy, and how you make that move from one economy to the other, and kind of the tests that you have to make it through to make that transition. So there's a very long history of kind of a presumption of deception that anyone who is trying to leave the work economy for the need economy is, you know, motivated to deceive, so that they don't have to work. And, you know, there's this stereotype of, you know, people with disabilities that are trying to game the system, and fake a disability or what have you. And because of that, you see these medical gatekeepers, you know you have to see a physician to certify that you're disabled. And for a very long time, the social security administration didn't release, you know, the diagnoses and, you know, levels of function that would qualify you for disability benefits, because they didn't want people you know, to know so that they could game the system, it was this big sec-, you know, secrets that you know, they kept very close to the vest. Yeah, I think they finally released that information maybe in the in the late 80s. You know, so you have the supposedly objective medical gatekeepers, who, at least on their part, are insisting that they can't be objective about whether or not someone you know, is functional enough to be employable. You know, that's not.. just not something that they can medically assess in any kind of objective way. You know, that also means this economic model of disability is parasitic on a medical model of disability. And then there's also a poverty test. Disability benefits in the US and in a lot of other places are really meagre and require you to have very few assets and very little other income, and basically puts you below the poverty level. So, you know, the idea is that if you're willing to live in poverty, you know, if we make it unpleasant enough for you, then you won't want to game the system, you know, if we make you have to scrape by and barely be able to afford food and housing, then, you know, we'll get rid of, you know, the folks that are trying to game the system. And, you know, just that presumption of deception is... just strips people of their dignity and, you know, the, you know, the lack of trust, and, you know, the fact that their own testimony isn't believed that it has to be the testimony of medical experts, you know, all of these different kind of obstacles that are put in the way, you know, are just really a shame. So, it's kind of a look at what I see is at these kind of capitalist values versus values of the disability community, which are kind of a desire for dignity, and for independence, and for almost all of them a desire to be able to be employed, if they can, you know, a desire for financial security. And those are things that, you know, these capitalist values are making very, very difficult for that community. So, that's, that's the next project. So it's another interview based project. And it's in early stages right now, but that's where I'm going next.
Yep, that sounds fascinating. I'll be watching for that one. There were some themes and some things that I learned in your paper in IJFAB, this paper that we've been discussing, that were on that theme, like people having to get divorced in order to qualify for benefits. So that seems like a really important area to be exploring. Well, thank you so much for joining me.
Absolutely. Thank you so much for having me. I really enjoyed it.
Great. I enjoyed it, too. And thanks so much for listening to this episode of FAB Gab. You can find Laura's paper linked in this episode's notes along with a transcript of our discussion. FAB Gab is hosted by me, Kathryn Mackay, and produced by Madeline Goldberger. You can find our other episodes on Spotify, Radio Public, Anchor or wherever you get your podcasts of quality. Thanks again for listening. Bye.