Disability & Ageing

Joeita Gupta:
I'm Joeita Gupta, and this is The Pulse. I've never thought about this, not until I started to come in contact with a number of older adults and saw people in my life who used to be able-bodied acquire impairments as they grew older. While I have been congenitally blind and started identifying as disabled when I got to university, I'm genuinely mystified why so many older adults choose not to self-identify as disabled, or even go so far as to actively refuse the label. Is it internalized ableism? Is it a desire to push back against ideas of old age being somehow limiting? Whatever the reason, undoubtedly, as the population ages, the linkages between disability and aging grow ever more intriguing. Today we discuss disability and aging. It's time to put to your finger on the pulse.
Hello and welcome to the Pulse on AMI Audio. I have to be honest with you, I'm really excited about this particular episode. I have wanted to talk to somebody about disability and aging for, I want to say a number of months now because I have encountered a number of people in my life, including my parents, who started out self-identifying as able-bodied people, but as they've gotten older, have acquired a number of impairments. Both my parents, I think they wouldn't mind me telling you, have had cataract surgeries and my mom now has all these problems with her knee. And that's just my parents, and they would not want to self-identify as disabled. And it really piqued my curiosity as to why that was the case.
Before we launch into the interview portion of this conversation, I just wanted to remind you that if you haven't already done so, please like this video and also remember to subscribe to the channel. It's a great way to know about future videos that drop on The Pulse channel. We drop new videos every Saturday so that you can get a new video once a week. And I would love if you could tell your friends, family, and coworkers to subscribe to the channel as well. My guest today is Ann Leahy. Ann is a postdoctoral researcher at [inaudible 00:02:34] University and she joins us all the way from Ireland. Hello and welcome to the program. I'm so delighted you could join us today.

Ann Leahy:
Thank you so much. I'm so delighted with the invitation to join you.

Joeita Gupta:
So I came across your article, Disability Identity in Older Age: Exploring Social Processes That Influence Disability Identification With Aging in Disability Studies Quarterly. Now that is a bit of a mouthful, but tell me, Ann, how did you get thinking about the linkages between disability and aging?

Ann Leahy:
Okay. I suppose I could answer that in a number of different ways, but it goes back to the fact that when I was relatively young, I took a job working in an aging NGO and I found the whole issue of aging to be very, very interesting. It also meant that I made intergenerational friendships. I had good friends who were a lot older than me, but that meant that maybe 15 years later my friends were developing impairments. And I kind of observed that that was very little explored, really, that it was almost denied, I suppose. And another issue was, I suppose working for an age sector NGO, I thought that us, if you like, and disability sector NGOs might collaborate more, but in fact I found very little collaboration between the two. There were other things as well. So I came to do research as very much a mature student, and those experiences very much influenced my topic, my favourite topic for my Ph.D.

Joeita Gupta:
Maybe this isn't the right question to ask, but I am curious about why it even matters if people who are getting older self-identify as disabled. I mean, even if they choose not to, what difference does it make?

Ann Leahy:
My PhD study was broader than the issue of identification, but I think it does matter in many ways, because we have so much separation, separation in policy framework, separation in advocacy, and it all leads to this non-identification. But I mean, at a most basic level, the effect of that is that a lot of people who experience impairment or disability are not identifying as disability. So that kind of almost minimizes our perception at a societal level of how pervasive disability is.

Joeita Gupta:
That's a good point. Tell us a little bit more about your study. As you say, it doesn't just talk about identification, but give us a bit of a rundown as to the study. What were you trying to accomplish? How did you go about it? And maybe if you have a chance, tell us about some of your key findings as well.

Ann Leahy:
Sure. So it's a qualitative study. It was largely interviews, and it has a number of aspects to it, but I suppose chief amongst them was that I wanted to do research to explore processes of disablement and how they were experienced. And I decided on two groups, people aging with longstanding disability, and then people who first experienced disability in older age. So the terminology in my study is terrible because I keep having to try and distinguish between those two groups. So the first experience is called aging with disability, and then there's the experience of disability with aging. So it was basically interviews with those groups and other aspects as well. So the two groups, even deciding how you put people in the two groups was kind of an interesting one.

Joeita Gupta:
Oh, I bet. Yeah.

Ann Leahy:
For me, the disability with aging thing, they were people who experienced disability after age 45. In fact, most of them experienced disability from their sixties on. So there were 42 participants between those two categories.

Joeita Gupta:
And how would you even define a disability? I was talking about my parents earlier on. Both of them had cataract surgeries. I mean, they can still drive after their cataract surgeries, but that's a very different experience from say, my mother-in-law who had age-related macular degeneration in her sixties and had to eventually give up her driver's license because her visual impairment had gotten so acute. So how do you actually go about defining disability for the purposes of your study?

Ann Leahy:
Yeah. Well, that was a huge concern for me at the very beginning. It was one of the ... it's an astute question because it was something I really grappled with. And I mean one of the issues I suppose about the separation between the two fields is that within approaches to aging, disability is entirely seen as a medicalized thing. It's like the way that disability used to be taught off before social models came to be understood. So I felt pretty quickly that asking people to identify as disabled probably wasn't going to work in my study, so I had to find some kind of scale or some kind of questionnaire. So there were two ways, really. There was accessing people often through stakeholders, like older people's groups or groups of people with disabilities.
So the gatekeepers, if you like, in those groups, they identified people who they thought had disabilities. But I also then incorporated questions at the end of my interviews, which are taken from the Irish census. And the questions there are very similar to questions in censuses used all around the world. And again, that's a very debated topic about quite how you define disability even in a census. So it asked about conditions, but it also asked about whether those conditions limited you in various ways. And I suppose I only took people to be disabled if they were in some way limited, whether that was in terms of daily life at home or going out from their houses, those kinds of things.

Joeita Gupta:
So you conduct these 42 interviews with people. What were some of your key findings after having all of those conversations?

Ann Leahy:
Yeah, I suppose some key findings were that even though disability in older age is very much perceived, as I said, as a narrow medicalized thing, it's something you experience in your body. But my experience was that in reality it's a much broader experience than that. So for example, older people with disabilities could be disabled by all the same kinds of things that disable people of all ages. So footpaths, public transport, all of those things could be experienced as disabling. And not only that, but maybe most surprising was the fact that people could be othered in groups, even groups of older people. People could find themselves excluded. That in some ways is quite a surprising finding.
So as I put it, people are experiencing disablism even if they're not identifying as disability or even if they wouldn't label it as disability. The other thing just to say about my findings is that people were in a continual process of answering life back, if you like, sometimes resisting those processes that were pushing them out or sidelining them, and they were also trying to have as good a life as they could have. So maybe we think of disability in older age in very reductionist terms. And in fact, I would say not enough is known about subjective experiences of disability in older age, but people ... it's a much more challenging period, but it's also an active period. People are reinterpreting things all the time.

Joeita Gupta:
It's so true. I think we have such narrow conceptions about old age, the fourth age, and it's almost as though people are in decline and they don't have as much to contribute. But it's quite the opposite, at least in my experience, where I've seen a lot of older people really take life by the horns, as it were, and be so engaged and so proactive. Earlier in our conversation you mentioned, and you talk about this in your research as well, about how it seems that services and programs for people with disabilities are off on one side, and then you've got services and programming for people who are older off on the other side. Why do these silos exist?

Ann Leahy:
Yeah, I mean that's a very good question as well. I mean, they exist for historical reasons. I guess people are living longer now, and that's true of disabled people as well as other people. So in a way, I think disability services were developed mainly with younger disabled people in mind. And activism on disability is often focused on people of working age, for example. So the two policy frameworks, if you like, got set up as silos. And then that's reinforced by a whole lot of things like research and scholarship tends to come from one or other side. Activism tends to come from one or other side without a great deal of overlap, although I think that is beginning to change. But now of course, because people with disabilities are living longer, you have people who are now older having lived with disability for a very long time. But the problem is the research silos, and as far as I know, they exist in many countries anyway, they tend to treat you as if you're old or disabled, not both.

Joeita Gupta:
Not both, yeah. You've mentioned that at least some of the people you spoke to in your interviews were people with disabilities who were getting older.

Ann Leahy:
Yeah.

Joeita Gupta:
I will readily admit that, at least as far as I can tell, we don't know a lot about the life experiences of people with disabilities as they get older and have to negotiate changing realities that come with age. And I don't just mean just the physical reality of getting older, but the kinds of pensions you're allowed, the kinds of public supports you get, all of that changes. You often age out of public services and programs as well. What did your study reveal, if anything, about the experiences of older people with disabilities and how their interaction with the system changes over time?

Ann Leahy:
Yeah, I have to say I became very fascinated with that group as I started to encounter them. So people who are now older, say for the most part over 65 in my study, but who had lived with disability all their lives, first of all, I realized there was very little research quite right with that group, and that kind of surprised me a little. And there's also an assumption, I think that the experience is extremely different to the other experience. And it is in some ways, but I could say something about that. So I had 18 people in that category in my study, and I suppose their experiences of aging are very, very diverse. And I don't think that should be a surprise because disability experiences are very diverse at all ages, and that continues into older age. So I mean, one thing that's really quite interesting is the way that those public policy frameworks operate for that group.
For some people it can mean going over to a more kind of passive framework, which is how aging policies tend to be approached. Again, it's the medical model, less supports maybe to live an active life. So there can be a lot of challenges like that, as well as challenges of additional impairments as well. And I suppose, as I said, there's very little research with that group, but I think that's a really missed opportunity. And I think that has to change, because a lot of people aging with disability or doing so with legacy of disadvantage, as we know from one thing or another, from being excluded from work. And as you say, pension provisions query to what extent they are able to access them. So I think there's a lot more research to be done there, and my research kind of signals some of that.
One thing you might be interested in, I suppose which may be a surprise to some people, is there were quite a few people in my study in that category, well, there were a few anyway who had joined older people's groups and actually were quite happy with that. They were now identifying maybe as older, and they felt included in a way that some of them had not at earlier stages. Some of the people in my study had led very restricted lives. Some of them, especially in rural Ireland, had lived at home a lot of their lives and were now in their eighties. But in some ways things were good now for some people, even if bodily things were harder, and I wouldn't underestimate that for a lot of people, but in other ways, life was good in many ways.

Joeita Gupta:
That's such an interesting observation, and it does seem very counterintuitive, but perhaps it shouldn't. You mentioned a couple of times how when we conceptualize disability in the context of aging, the medical model seems to be very prominent still, which honestly strikes me as a bit surprising because when you think about the last three decades of disability activism, the social model of disability has had an ample opportunity to gain ground in our consciousness. Why does the medical model remain the pervasive model to reference disability amongst older adults?

Ann Leahy:
Yeah, that issue is fundamental to this whole area. Aging, both studies and public policies, research, if you like, scholarship and public policies are more tied in with medicalized understandings far more than disability. Basically, it's to do with the separation of advocacy. So social model approaches, if you like, evolved, erupted, caused a revolution in how we think about disability in general, but basically that has never been applied. And it's partly to do with activism on disability, concentrating on say children and people of working age, rather than on older people, even people growing older with disability or with lifelong or long-term disability. So it's the effect of silos, these separate silos, that means that the social model or social models just haven't been applied. Even things like the UN convention and the rights of people with disabilities, it tends not to be invoked so much in relation to disability experienced in older age. It goes back to the thing of disability in older age being thought of as just impairment, then. It's just a bodily thing.

Joeita Gupta:
Yeah. Do you think part of it is also just ... I mean the word disability is not a neutral word. I mean, I don't usually try to take a position, but honestly, the word disability is pretty loaded and it does carry a degree of stigma with it. Is it also older adults saying that they don't want the stigma associated with the word disability or being disabled?

Ann Leahy:
Yes. I suppose there's some truth in that. Not that people put it exactly like that, but people tended to feel that if they started to use an appliance, say, that other people would look at them differently. So they wanted to think of themselves more as part of the mainstream than people who had disabilities. They tended to say, "Well, look, I've adapted. I've adjusted. I use this walker, but it doesn't stop me getting out and things, so I'm not disabled," in that context. But I think the language issue is always an interesting one, because you can change the language, but it's harder to change the underlying prejudice, if you like. So you can change the word, but if you don't change the underlying prejudice, new words will take on kind of a stigmatized connotation as well, I fear. So language is never simple.
Actually, I do want to add one thing. That issue of older people feeling that they wanted to be part of the mainstream rather than, if you like, disabled, that's not unusual, even amongst disabled people. Lots of studies are a bit like that, that in relation to much younger people with disabilities, until they encounter activism, say, and get a kind of an empowering view about what disability can be, then I'm sure you agree, they don't always want to identify as disabled either.

Joeita Gupta:
No. No, they don't. It's a fair point. It's not a foregone conclusion that everybody embraces that particular label with open arms. One of the things that's been making some headlines here in Canada, and I'm not sure if it's the case in Ireland as well, but we've had a couple of news stories here about younger adults with disabilities being accommodated in nursing homes, because that's the only place where they can get the kind of care they need. And I know a lot of people with disabilities and disability activists have turned to that and said, this just goes to show you how unsuitable a living situation this is. You've got someone in their maybe twenties with a disability living with people who are much, much older. And the prevailing discourse in Canada has been, "Well, it just goes to show you you need more supportive housing and you need more housing for people with disabilities." As someone who's researched the linkages between disability and aging, I wonder what your take on this might be.

Ann Leahy:
Yeah, it's an interesting question, and it is an issue in a lot of countries, actually. And I suppose my take on it is I totally agree that a nursing home is not ideal for somebody in their twenties, thirties, forties. So I'm glad to see that there is advocacy to try and put an end to that. However, I do have to wonder then why we think that institutional care is okay from say age 65 on, whether that's for people first experiencing disability in older age or people aging with disability. So for me, I think it raises that question, why is there a tacit assumption that a nursing home or institutional care is okay at any age really? While at the same time, I do very much want to see people, younger people not having to resort to those kinds of care situations.
Can I come back and add one thing? I'm sorry, this is pushy of me, to the earlier question about people not identifying as disabled. I do want to say though that there were people in my study, even people who only experienced disability from their sixties on, who did identify as disabled and who did identify as with disability activism. And that was to do with encountering it basically for one reason or another. Those particular people had encountered disability activism, were involved in organizations of one kind or another. And they were ... now I wouldn't say they always wanted to be called disabled. Some of them did. Some of them didn't mind. So that thing of not identifying as disabled, it's not really to do with aging. I think it's to do with the separate frameworks and the siloed approaches to disability and aging.

Joeita Gupta:
Yeah. So it's also based on people's thinking about what the genesis of, for want of a better word, what the problem is. Is it an impairment in your body or is it something in society that limits you? There was a really interesting quote from one of your interview participants who says, "I used to be able to go to town and visit my kids and things like that, and I can't do that anymore. And that's because transit isn't accessible and that's on the town. It's not on me." So it's been really interesting to see how people approach the same situation in so many different ways.
One of the things that we're having conversations about in Canada, and I suspect in Ireland, is actually moving away from the nursing home model, especially in light of COVID-19. And in Canada it was an unmitigated disaster with how rapidly the virus spread in long-term care homes. So there's a growing movement to say that people who are older should in fact be aging at home and staying in their communities. What benefit does the disability rights movement confer to this idea or this growing realization that people who are older need not in fact be institutionalized?

Ann Leahy:
Yeah. For me, I think we're a bit away from people really appreciating that, but I would point to the UN convention. Older people have human rights too, older people with disabilities, and even though they don't tend to be thought of in connection with the convention and the rights of persons with disabilities. So I think disability activism has a lot to contribute there, and I think disability activism needs to focus on those two groups. I mean, in a way, it's kind of surprising that activism is a bit late coming to focus on the aging of people with longstanding disability. In a way, you would've thought that was a given almost, but it's not because they traditionally haven't focused there. But I think it is beginning to change, and there is more and more of a focus now on dementia in particular as a disability. And that didn't use to happen even five or 10 years ago, but that's happening more and more now.

Joeita Gupta:
Well, it's an ongoing conversation, but we have to leave it here today. Ann, thank you so much for joining me on the program. It was such a pleasure speaking to you.

Ann Leahy:
Thank you so much. Thank you.

Joeita Gupta:
Ann Leahy is a postdoctoral researcher at [inaudible 00:27:29] University in Ireland. And that's all the time we have for today. If you have any feedback, if you'd like to share your stories about getting older and having to think through some of those labels and how you self-identify, we would love to hear from you. You can drop a comment down below if you're watching it on YouTube or if you're listening to the podcast. Otherwise, you can write us an email, write to feedback@ami.ca. Give us a call at 1-866-509-4545. That's 1-866-509-4545. Don't forget to leave permission to play the audio on the program, and you can also find us on X, formerly Twitter, @AMIAudio. Use the hashtag #pulseAMI. The Pulse is brought to you by a number of people. Our videographer today has been Ted Cooper. Jordan Steeves is our video editor. Mark Afalo is our technical producer. Ryan Delahanty is coordinator for AMI Audio Podcast. And Andy Frank is the manager for AMI Audio. And I've been your host, Joeita Gupta. Thanks so much for listening.