In the latest With, Not For podcast, Manisha Amin speaks with activist and model, Angel Dixon, and Lead Researcher, Kelsey Chapman about their work on The Dignity Project, a community-building project aiming to uncover the meaning of dignity for people with disabilities or impairments. Presented by the Griffith University’s The Hopkins Centre, the research asks people with a lived disability or impairment to take part in surveys, focus groups and forums, answering questions about their experiences of dignity and violations of dignity. The Dignity Project’s goal is to explore what dignity means and how it is influenced by attitudinal and physical barriers which limit participation and access.

Transcript

Intro

Manisha: So, you’re waiting in line, complaining on social media, or talking to friends about something that just doesn’t work for you. How often do we think “if only the designers had thought of this, or that?” There’s often some really easy fix that we all know would make something much, much better than it is already.   

I’m Manisha Amin, welcome to With,Not For; a podcast from the Centre for Inclusive Design. I’d like to begin by acknowledging the Cammeraygal people, the traditional owners of the land on which we record this podcast, today. And pay my respects to their elders, past, present and of course, emerging. We are so excited to have you all here today, with us.  

So often, things are designed for us. But here, we explore the magic that happens when we design with people, not just for them. With me today, are Angel Dixon and Kelsey Chapman. Together, they are part of the team working on the Dignity Project at The Hopkins Centre, Griffith University.

The Dignity Project looks at disrupting stereotypes and breaking the barriers of people with disability and what they experience every day. Angel is a strong advocate for inclusion. She is the former CEO of the Attitude Foundation and advocate manager for Starting with Julius. Angel was named 2019 Queensland young Australian of the year, and became the first model with physical impairment, to be featured in a national television campaign. Kelsey Chapman, grew up in the US, but now calls Australia home. Kelsey is a PhD candidate, research lead and specialises in human rights research, critical disability theory and dignity theory. So, before we discuss that actual work in The Dignity Project, I’d really love to know more about you. Can you tell me a little bit about yourself, Angel, and why this project became so important?

Angel: So, I acquired an impairment when I was 19 years old. From that time, I experienced pretty significant physical barriers, but also, I discovered that I was being treated differently by everyone around me; not just medical professionals, where I was in the hospital at the time, but also, confusingly enough, from my family and friends.

Fast forward several years later, to when I was living in San Francisco and I found a community of other people with disability, who were having shared experiences, like I was. And that really sort of, activated my activism, with the encouragement of some very key players in the disability rights movement, at the time. They sort of encouraged me to become a bit more active in what I was doing, as well.

And alongside that, I was developing – I’m a walking cane user and a wheelchair user, and I have quite a passion for product design. So, at the time, I was also designing a walking cane and I wanted it to be shown in fashionable places, and my search for models with disability, who could showcase my cane, in fashionable ways, came up short. So, I decided that I would try and become a model, so that I could have my cane in fashionable places. So, my activism and that sort of stuff really tied, because this representation piece in my journey, is very important.

And I ended up coming back to Australia and I met someone who is very special to me, Catia Malaquias, she started Starting with Julius, which is an Australian based organisation for media and advertising, here in Australia. We got to talking and our relationship grew, and our professional relationship has grown since then, as well. And we’ve been lucky enough to work with some really big, Australian organisations. Catia was also on the board of Attitude Foundation, and she introduced me to the organisation and to our former commissioner, Graeme Innes. And subsequently, I ended up – after several things – as the CEO of the Attitude Foundation.

I’ve since had a baby and so, I’m now just back on the board as a director, but helping to support the organisation where I can. And so, since then, my time has freed up quite a bit and last year I received an Order of Australia medal, and was looking to do, I guess, some more research things. And Kelsey and I connected through The Hopkins Centre and they sort of, pitched The Dignity Project to me, and it really piqued my interest. So, we kind of got started from there.

Manisha: Well, that’s fantastic. And Kelsey, how did you end up in this space? And also, how – what did you think, when you first met Angel?

Kelsey: Well, it’s a very long-winded question of how I got here, I suppose. So, I’ll keep it very short. I grew up in the US, as you mentioned before, in an area that I would say, is not particularly diverse. And as a young child, actually, my aunt – or aunt as we say here – was the director of a summer recreation camp for adults with intellectual impairment. That was kind of, my first exposure to disability, or quote disability, as I like to say. And that really started to help break down the barriers for me, and help really normalise impairment, moving forward. I’d say that’s like, the foundation for my exposure.

I went to Washington College, which is a small liberal arts University in Maryland, and actually studied political science with a concentration in peace and conflict. I had two really fabulous female mentors there, Dr Christine Wade and Dr Melissa Deckman. And they really spawned this interest in gender equality, women’s rights and human rights. And so, I did a Senior Capstone Project that focused on women’s agency in the justice process, in post-genocidal states; so in Rwanda and the former Yugoslavia.

Manisha: So, just something light, for you know, light reading and entertainment on that side? Is that about right?

Kelsey: Yes, dock study, you know, 12 hour days in the library, we’re having a lot of fun. But I’m really glad I did it, because it ended up setting out my whole academic experience. Without it, I wouldn’t be where I am now, so I’m quite fortunate that I did that.

Manisha: Absolutely, and I don’t want to make light of the situation that you were talking about, obviously, incredibly important.

Kelsey: But yes, quite heavy and quite a juxtaposition from you know, final year of Uni, I guess, the traditional American atmosphere of Uni, going out on the weekends with the red cups and everything, that people think that we do – and we do, do that. And then reading dock theory, from the international criminal tribunals and all that sort of stuff, it was interesting times. But yes, that really, was where my focus on human rights and agency for marginalised people, was really fostered.

I moved to Australia and you know, I was young, and just married and wasn’t sure where I wanted to go with my career, so I started a small business, just helping other small businesses with content creation and ghost writing. But I really wanted to get back into research, and so I ended up being introduced to Professor Elizabeth Kendal, who’s my mentor and supervisor. And started working in research support, so doing ethics and supporting other researchers to do their research. And that, then ended up turning into discussions about building capacity for a PhD candidature.

And at the time, I wasn’t sure how it all fit in, to my area of expertise, being a political scientist; I wasn’t a disability researcher, I actually didn’t know much about the disability rights movements, or models of disability, so I started reading, and learning, and observing and just wasn’t really sure, what my question would be. There were discussions about dignity at the time. And I was just sort of, in this self-discovery process, and my father-in-law was actually diagnosed with terminal melanoma. And I wasn’t really privy to a lot of the interactions with the health system that he had, until the very end, when he was in palliative care, in hospital.

And he was definitely ready for the end, and we were seeing all these doctors and social workers, and nurses, and he was on nutrition, and it was very impersonal. And one day, a doctor came in and said, “How are you doing? Not physically, although I care about that, but just inside of yourself, how are you doing?” And it was the first time I felt like he was recognised, as more than just his cancer diagnosis. And later, I actually realised, I felt the change in the room, from him, from us, from the doctor, and the power that that question about dignity really extended to him and to us, as his family. And so, I actually applied for my PhD candidature a month after his passing, to explore dignity. I just really understood the power that it held, and combined it with the expertise of Elizabeth Kendal, and what I was learning in disability.

At the time, there was some work being done for a dignity project at The Hopkins Centre, that was about 2017 and it was iterated and processed a bit. And throw in a few maternity for leaves for me and I was brought on as the academic lead in 2019, as part of that citizen science grant that Angel mentioned and …

Manisha: And so, what does citizen science mean to you? Because you know, when I heard that word, often I think about people taking photos of wildlife, or in their backyards and sending pictures in. But you can’t take a photo of someone’s dignity, and in fact, when you’re thinking about citizen science – where people are actually involved in collecting the research – we’re talking about people collecting, or thinking about their own experience, but also taking the part of the scientist. So, Kelsey, from your perspective, why did you actually choose this specific approach?

Kelsey: Yes, well it is quite novel, and we say it’s the human approach to citizen science – it’s actually called extreme citizen science, I guess, in the literature – where projects are led by members of the community, and your participants are also classified as citizen scientist, because they’re using their lived experience to uncover data, it just happens to be their own personal data. And I find it really aligns with that saying of “nothing about us, without us.” So, it’s quite a nice method. You know, I guess from the literature, there’s all sorts of benefits of doing extreme citizen science, disrupting normative ways of thinking, new ways of asking questions. Really, it’s about giving voice to a diverse group of people, and diverse views that have traditionally been silenced by research, in order to uncover data from a new perspective. And I say, we’re – uncover is a really – we chose that word really purposefully because –

Angel: We took a while!

Kelsey: We did! Because we’re not actually uncovering new stories, we’re just exposing stories that have been diminished or ignored, or silenced, yes.

Angel: For a long time.

Kelsey Chapman: Yes. And so, for us, it was an opportunity for the whole life cycle of research; from the design, through to the outputs, to actually translate the perspectives and positions and goals of community voices, into scientific knowledge. And really, I view it as building – bridging the gap between citizen experience, or experiential data, and service provision.

Manisha: Right. And then, in terms of that – Angel, in terms of the way that, that is constructed and made safe and trusted. What were some of the things you really had to think about? Not just as someone who is a deep practitioner in creating trust, but also because this wasn’t – and this project isn’t just about gaining information on – you know, to design a particular product, but it’s going into kind of, a very formalised research paradigm, as well as designing something that’s more practical. So, how did you actually help to inform that structure? You know, even that comment, about uncover rather than discover – my sense is that you would have had to spend a lot of time, not only with the citizens, but actually with the scientists?

Angel: Yes, so I feel like I’ve come in as a bit of a heavyweight in this area, to The Hopkins Centre, particularly from an already established perspective of what the centre is for – rehabilitation and resilience for people with disability, and those words are tricky words for me.

So, coming into a centre who had some already, you know, pretty established ideas about what they were doing and where they were going, and me coming in and going “hey, actually, I’ve got some questions,” has been a challenge, to say the least. But for the most part, it’s been really good. Kelsey and I have predominantly worked in our own little silo, because we have been working on a pilot study – a very small pilot study, really – which has been very good for this, to try and get a significant foundation, so that we can then let it filter into the rest of the work within the centre itself, and beyond.

So, I guess what I brought to it, was that really disruptive “hey, I’m a person with disability, I feel uncomfortable in research spaces, because historically, people with disability have been objects of research, and not necessarily involved in the research. So what we really need to do, is make the platform that we are creating.” Kelsey and I, came up with this idea of having a community hub – that’s what we called it. It’s a hub that is a private space, you have to fill out a survey, the survey was designed with inclusive language and framing in mind. That’s where we collected our initial data, and then once you fill out the survey, and once you become a member of the community hub, all of the data and everything within that, is obviously de-identified, unless you want it to be. Obviously, the key part of that hub, is that it is run by a person with disability. So initially, it was run by myself, then I went on maternity leave, and so we found someone who could take over some of those blogs and things like that, to continue the community discussion, within the platform.

Manisha: And is the platform physical or – I know that COVID has put another spin on this – but has it been physical and virtual?

Angel: No, it’s all been virtual.

Manisha: OK.

Angel: So, one of the things that we actually had to do from the outset – because this launched at the beginning of COVID – so, we were actually kind of COVID-proof, which was a good thing, but we do recognise that there are barriers to the accessibility of our platform. We tried really hard to create – to make it as inclusive and as accessible, as possible. We engaged the Centre for Accessibility to do some audits and things like that, and we did some user testing, you know, all the things that –

Manisha: That you were doing.

Angel:  – that I would do. But, because it exists within the current Hopkins Centre framework, there are limitations to that. So, we had to come up with some innovative ways of working. So, we’ve done things like, people can decide to provide answers through video, through audio, any form of written framework you send us, we can deal with that. And there’s a lot of ways for us to connect with people, and meet them where they’re at.

Manisha: And so then, in terms of the project – because we’ve talked a lot about how you’ve structured this project – and I know, I’m going to put a caveat here – I know that it’s early days in terms of your research. But I’m still going to ask this question – what have you found, in terms of dignity? And I’ll ask both of you this question – I’ll start with Angel – what have you found out, in terms of dignity and what people want? And, is it what you were expecting?

Angel: During my parental leave, I actually – I did an online philosophy course on ethics and justice, so that kind of gives you an idea of what I do for fun. I’m a little bit like Kelsey in that way, we do align in that area.

Kelsey: We’re very nerdy.

Manisha: Well, you’re lifelong learners, right?

Kelsey: Yes.

Angel: So, I was really drawn to the possibility of creating some kind of foundational understanding of dignity, that was understood by people with disability. Because personally, I know what it’s like to feel undignified and I have, through the course of my journey, and in San Francisco, when I met all of those wonderful people who were part of the disability rights movement, and who taught me all the things that I know today – we’ve all developed this finely tuned radar, for what dignity and indignity, is. And you can feel it in your body, it’s not something that you can really define, but when you’re in it, you know.

Manisha: So, it’s almost like a sematic sense, is that what you’re saying?

Angel: Yes, it –  there’s something. And it’s purely – it’s through shared experience that we can all kind of, connect on it. But the important piece of individuality, and all those tiny layered and culminative experiences, produce a different kind of radar, so everyone perceives dignity in a different way. Everyone feels it in a different way, the same as with indignity. And so, I kind of – I came into the project knowing this, I knew that there was something there, but I wasn’t really sure what we were going to uncover. And then when we got started, I expected to learn about different theories of dignity, and that’s certainly what we’ve done; there’s been a lot of reading, actually, like, just before we got into this call, I was very deep in just, brain breaking theories.

But the simplest thing, that I think we’ve uncovered – that I didn’t expect was going to be so strong throughout – was a theme of acknowledgement and recognition or witnessing. There’s a few words that we’re going back and forward on at the moment, because we’re deep in the theories but we initially called it acknowledgement. And it’s this theme, that people are saying “yes, we are people, we’re humans first, we need to be recognised as human first, or acknowledged as humans first, but at the same time, we need our impairment, for functional reasons and practical reasons, to be acknowledged, so that we can exist in an equitable space.”

Manisha: Right. That’s really interesting, because when you first said acknowledgement, what I heard – or, what I was thinking you would go to – is what Kelsey was talking about earlier, with her father. So, someone acknowledging the dignity or the indignity, so an acknowledgement between two people. But you’re actually talking about the acknowledgement of the difficulty, that’s causing a problem. Is that what you mean?

Angel: So, we’re talking about all of it.

Manisha: Ah, right.

Angel: It is a matrix of acknowledgement. So, we’re actually – we’re pulling, we’re extracting this entire theme of acknowledgement, and putting all of these different things underneath it, because it all comes back to this one theme. We can just see it so clearly. So, what we really need to do now, with our sense-making, is go away and we need to come up with how we tie all these things together, which is why we’re so deep in literature at the this point, because there are so many ways to connect it. But really, it is such a simple piece that we really need to build out, and make sense of, so that we can then take it back to people with disability and go “hey, does this make sense?” All right, cool, let’s make some resources and try and solve some things.

Manisha: But the nice thing about what you’re talking about, as well, is when we think about acknowledgement, it’s quite a practical thing. So, when I think about dignity, it’s a bit amorphous, everyone has a different view on what dignity means. But you’re taking something that’s quite broad, and emotional in some ways, and personal, and making it very physical and practical. So, in that sense, as well, Kelsey, what have you found in terms of the work we’re doing? And maybe, in terms of that notion, or in terms of other things that you’re finding, through the process of doing this research?

Kelsey: Well, I mean, I have learned so many things. Many of them from Angel and many of them from our participants. I am a non-disabled person, so being welcomed into this space, and into the sharing that our participants have welcomed me into, has been pretty transformative for me, in terms of just learning.

In terms of the research, I mean, as you said, dignity is very subjective, or that’s what people seem to think, and it’s very easy to talk about things that feel undignified. Most people can rattle off 10 things that have happened to them, that are undignified, but saying actually what is dignified, what is dignity, how do you know? What does that feel like? It’s quite difficult for us, even, as researchers, to articulate what that is. And so then, this emerging piece of acknowledgement has come through, and it just seems – it was like that last piece in the puzzle, that made it all make sense – and then, made it all make no sense, again, because we’re still doing all of this reading. But fundamentally, right, the piece of acknowledgement can occur between a person and a system, between structures in environments, in other people acknowledging you, in that social interaction.

Angel: And, you acknowledging yourself.

Kelsey: Yes, and so, it’s kind of across these difference spheres, that you can have acknowledgement play out. And what we’re finding, is that you’re acknowledging, I guess, a person’s value or their inherent humanity – I prefer that – inherent humanity. Which then requires the realisations of their human rights. So, we’re saying, because we’re acknowledging your humanity, then we’re realising your human rights, and obviously that’s practical and also, an ideal.

But yes, I think in terms of current outcomes, it’s created a lot of reading, and definitely some spin offs for other research. So, we’re working through a couple of context specific applications of dignity and how, for example, being in a health system setting might impact on that in different ways, and I guess, the big picture is theory building. So, it sounds very impractical, but theory building as an advocacy tool and as an implementation tool. So, if we’re able to articulate what this looks and feels like, we’re able to implement change, and I think that’s ultimately our goal; we don’t want to create research that just sits on the self in a journal, or a library, so to speak, we want it to be really practical. I think – Angel, is that definitely the – you know, to –

Angel: Manisha knows that, and she would expect no less of me, I’m sure.

Manisha: A hundred percent. I think that’s what I love about the work you’re doing here, and the work you’ve done in the past, as well. And the work you’re both – this research, is that it’s practice based research, but it’s also got some really simple, practical – I can hear them in what you’re saying, and I know there’s a long way to go – but I can hear that there’s this piece in here about, so, what do we do differently, as a community and as a society? And so, on that note, Kelsey, if you think about the work you do as a researcher, if we had to ask you about something that would be better, if people had just asked you, and you’re the with, that they were working with, what would that be?

Kelsey: Yes, I was spending a lot of time thinking about this, because you know, I’ve acknowledged that I have lived quite a privileged life, growing up. I would say the one thing that I’ve learned, fundamentally, from my upbringing – you know, my parents – my mum is a very observant Christian, and my father is Jewish. Which seems quite unusual, for people who have been married for like, 38 years, and I think what I’ve learned is just the tolerance, and the way that they communicate with each other about their needs, and also, the tensions between their differences of point of view and opinion. I wish that, that’s how people approach things every day, with a bit of open-mindedness, establishment of their boundaries, but also, not being afraid to say “this is what I need,” and then having that be respected.

Manisha: That’s lovely.

Kelsey: That’s love.

Manisha: And as a researcher, how would you think about bringing that dynamic into, not just your research practice, but in – when we think about early career researchers – what could we do, to bring that dynamic and also this notion of working with others, into their research?

Kelsey: Our process is quite disruptive, and I just feel really lucky, as an early career researcher, to have been exposed to this kind of learning, in the outset. But, it’s really experiential learning, right, like this is nothing that I have learned in a classroom, we’ve just been learning it – well, not we, I – have been learning as we go. So, I think for me, what I said could be fixed, or how I would like people to approach the world, is just that open-mindedness and understanding what their boundaries are, but also being flexible in that. And I think that’s something academia doesn’t do very well, in terms of being flexible in how we finance projects, and being flexible in how we approach methodology. Being open-minded about the value of lived experience, you know, there are some people who are doing that exceptionally well, in the field, but I would love to see that become, just more robust and more prevalent, so that we’re not some interesting, different project, that we’re just a project that’s doing sort of, the same kind of methodology as everybody else, and just making research a lot more accessible and inclusive.

Manisha: Oh I love that. So, when we think about your experiences, what would you say to people who are interested in being either advocates, or allies in terms of how they need to go about this process of making sure we have actual, practical change?

Angel: Well, firstly, I’m going to kick off with the ick-feeling I have about the word allies, sometimes, just because of that pervasive lens that we kind of have on disability at this point, it’s still from kind of a heroic perspective. And so, when I hear the word allies – and certainly, when I go to presentations or things, and you hear people talk about how they’re an ally, it comes from that kind of, heroic perspective.

And I guess, what I talk about, is some of the things that you talk about; how when we’re designing – everything to me, comes back to design, really. I mean, we design our communication, we design everything, And when we’re thinking about disability being the barrier, and a mismatch between impairments and our physical bodies and barriers, then we can really look at it overall, and say “OK, well, if you’re designing something, you’re really designing it for yourself. Because eventually, we’re all going to experience some kind of disability, we’re going to experience some kind of impairment, some kind of barrier in our society, that isn’t – that you don’t know of yet, you’re going to experience it.” So, if you’re designing something, you’re designing for yourself, and let’s think about this as an overall human problem, not just one or the other. So, I try to bring that common humanity into the discussion, I guess. When I think about what I would like to have changed, I want everyone to come from that common humanity perspective.

I want everyone to stop thinking about there being othering. We can acknowledge all of the things that we need to acknowledge, as the way that people like to identify, because identity is very important; they’re important in the way that we organise ourselves as a society, they’re important as the way we feel about ourselves, they’re important for a number of ways that we access things, and we also need our physical impairments and physical barriers to be acknowledged, as well.

But, we can have this overarching view of, we’re all humans, let’s come from the same place. And once we’re in there, there needs to be some flexibility. I mean, when we’re working with people with disability – Kelsey knows this now, I’ve knows this for as long as I’ve being doing this – disability isn’t homogenous – every impairment is different, every diagnosis is different, and so, when I’m on a set and I’m talking to people about how we need to include people behind the scenes, we need to be making sure that we’re not just having ramps. We need to make sure that we have flexible shoot times, that we’re asking people how they want to be included and represented, because it’s going to be different for every person. We need to be making sure that we have quiet spaces, because not all diagnosis or impairments require quiet spaces, but a lot of people prefer them. There’s a number of things that we need to start opening our minds to, and that require a lot of flexibility, just so that everyone feels comfortable.

Manisha: And the lovely thing about that is, you know, you’re not just talking about one size fits all. You’re talking about having different ways of doing things, for different people, and I think that it makes the world such a rich place. It’s been incredible listening to both of you, I would love to be immersed in your world and you know, a fly on the wall in terms of some of these conversations that you’re having, and I can’t wait to see where this work goes, and the flowering of this Dignity Project, and what those words mean to all of us, into the future. So, I’m really looking forward to seeing some of the results of the work, and also, to hearing more about the process, as you move forward. So, thank you so much for being part of the podcast today.

Kelsey: Thank you for having us.

Angel: Thank you.

Manisha: So, thank you all so much for listening to this episode of the With, Not For podcast. If Inclusive Design is something you’d like to learn more about, or if you’d like to work with us, please do connect us at the Centre for Inclusive Design, or myself on LinkedIn. Or head to our website centreforinclusivedesign.org.au. The links can be found in the episode’s show notes.

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