Art, Grief, and Disability

Speaker 1:
I'm Joeita Gupta, and this is The Pulse. Grief is a universal human challenge. All of us grieve at some point, but how we grieve might be different. Some talk about it. Others remain silent. For people with disabilities, grief can be a complicated process. Not only have they lost a loved one, but they might also lose their primary caregiver, their home, and their familiar routine. So grief then becomes a multi-layered experience, which well-meaning able-bodied people might find difficult to talk about. We know about the restorative power of art, though. Art can also then facilitate conversation and dialogue about grief by finding ways to say what grieving disabled adults might find hard to put in words. Today we discuss grief and disability. It's time to put your finger on The Pulse.
Hello, and welcome to The Pulse on AMI-audio. I'm Joeita Gupta, and I'm joining you from the Accessible Media Inc. studios in Toronto. I'm wearing my usual sweater today, long sleeves, crew neck. It's a nice purple. And my hair is tied back in a bun. I'm talking to a couple of scholars today whose work was published in the Canadian Journal of Disability Studies. We'll be hearing about an interesting studies which paired adults with intellectual and developmental disabilities and undergraduate university students, who collaborated on a public art exhibit dealing with themes of grief and loss. I know many of you have asked me to do a show about grief, and I've struggled with finding the right guest. Do I bring on a grief counsellor, a therapist? Who would be the right person to talk to?
And I thought this particular study might give us an interesting entry point into that conversation about disability and grief that I know many of you have wanted to have on this show. Yumi Shirai is an assistant professor in the Department of Family and Community Medicine at the University of Arizona. She's my first guest. Yumi, hello, and welcome to The Pulse. It's good to have you on the show.

Speaker 2:
Thank you. Thank you very much for having me.

Speaker 1:
Of course. My second guest is Carissa Maria DiCindio, who is assistant professor in the Department of Art and Visual Education, also at the University of Arizona. Carissa, hello to you, and welcome to the program.

Speaker 3:
Hi. Thank you for having me.

Speaker 1:
Your article Museum as a Mutual Learning Space for Artists With Intellectual and Developmental Disabilities and University Students was recently published in the Canadian Journal of Disability Studies. Yumi, let me start with you. In a few words, what can you tell us about your study? What were its main objectives, and what were you hoping to accomplish?

Speaker 2:
So, our study involves the artist with intellectual and developmental disabilities and students from the University of Arizona museum education. How can we use the museum as a space to create a space for collaboration among different population, and how we can deliver those messages to the public through the exhibition as well? And this study really describes the process of how we can facilitate these collaborative activities with multi-group. And as Carissa is a professor specializing in museum education, and she has expertise in how she can train the curator museum staff. And I'm expert in working, directly working, with the people with disabilities. So how we can collaborate together to create those space together.
And I think the key steps just can be applicable for any other life situation or collaborative group activities. And grief, the topic of grief, I've been in this art studio for 25 years, and I grown up in this studio, and I learned how to get older with the studio artist and their family members. Along the way, we face the challenge of grief and loss, adaptation of adult life, and that's always the topic that I was really passionate about, and I was very excited to have this university partner to work together.

Speaker 1:
And of course, Carissa, I should bring you in here. As someone who specializes in art education and community art, visual art education, how is what you were trying to do with this study, which is more a collaborative process, different from art as therapy or art as rehabilitation? Is there a difference? Or was it sort of a continuation of using art as a therapeutic medium for people with disabilities?

Speaker 3:
I would say that this is different. We really approached this as a collaborative process. We wanted to give students tools for working with different groups of people in museum spaces. One of our main goals was making sure that students weren't speaking for another group of people, another community, in helping them prepare the exhibition. And so it was really about giving them the tools to be part of this collaboration and being good partners in it. We weren't doing art therapy here. We really were interested in the practice of being curators and educators in a museum space with artworks.

Speaker 1:
I'm going to stick with you, Carissa. Just in terms of educating us, in your study used the word "multivocality." So what does the word "multivocality" actually mean?

Speaker 3:
That's a great question. It's really about multiple voices being present in a museum space. And so if you look at traditional curatorial practices, that was much more focused on the voice of the curator. And so the curator would design the exhibition, write the labels, really be that voice. With multivocality, it's much more about opening up a space and engaging with communities and sharing their voices in the museum space.

Speaker 1:
We heard from Carissa about how they were hoping that undergraduate students would be better prepared to work with diverse communities and be better art educators without speaking for anybody. Yumi, want to get you into the conversation here. How did you work with the participants who had intellectual disabilities, developmental disabilities, to help them prepare for this project, to help them prepare to put their artwork on display and to have challenging conversations about grief that I think most of us, even if there aren't disabilities involved, find extremely difficult to talk about topics around grief and loss?

Speaker 2:
So, prior to this collaboration, we had about 12 weeks of grief conversation, their loss experience through expressive art. My art media is movement, so we crafted story about their experience with the movement and gestures, drawing, and drumming. So we learn about a typical grief process, and that looks like. And then also, we shared about our own experience of loss, who are the loved ones they lost, and how was the environment surrounding, and the process of losing, and how they felt. And expression of feeling was really difficult because many of folks with the communication difficulty may not identify nuanced word of how we can describe the feelings, but using the gesture and noise and sounds really help us to connect.
So, "How do you feel today?" And one of the participants said, tapping their chest with the big fist to be very deep noise. And, "That is my feeling." It's none of those words or faces that usually can see the feeling [inaudible 00:08:21]. So we had an intense conversation about loss experience, and they kind of reflected upon what they have experienced, and shared among the peers, and they expressed in some of the words. So they understand somehow what they have experienced. And so they were ready to share with the university students. So that 12 weeks of preparation was necessary prior to this collaboration.

Speaker 1:
Carissa, did you feel, in working with some of the university undergraduate students, I would imagine... And I'm making a guess here... that many are in their early 20s, may have some experience of grief and loss but maybe not a lot. How prepared were they to listen to what the participants had to say without getting overwhelmed or frightened or trying to impose their experience on what the participants were saying?

Speaker 3:
I didn't know it until afterwards how nervous they were. It seemed as though they thought that this was going to be a space of sadness. They were concerned about that. I was concerned about supporting their needs, too, and if they were dealing with grief, what that would be like, for them to have conversations. And so I did point them in the direction of services that are on campus for their mental health. But as soon as we got started with the project, and they started having these conversations and sharing with the artists, it seemed like those anxieties at least were reduced. They commented that it was much happier and more joyful than they were worried that it might be. And so they really kind of dove into the project at that point. But I think there was some hesitancy at first.

Speaker 1:
That's understandable. Hey, listen, I really want to hear a little bit about the art and some of the things that were finally put on display. Yumi, describe some of your favourite artwork that came out of this project.

Speaker 2:
So, there are a couple of those arts that were in the article that, during the process of collaboration, they worked the bits and pieces, over the six weeks. And so one of the art was made by Joey Aschenbrenner. And he has the trees and bonfires and camp trailers and the number of 32 lot of their camping place, that the family has been going to those places for over the years before they lost their father and their grandpa. And when they were sharing that story with the students, one day he talks about just suddenly bonfire, and then he couldn't carry on the conversation. But then he would bring back some campers' picture from home. Then they carry on more conversation in the next week.
So it's just the conversation was building upon. And at the last piece of art, it's not just a tree or camper or two dogs, but then all of those are together in the colourful blue background. You will see on the article, and then you can capture this happy moment of their family members and a special time, and you can see it and feel it. It's almost smell it too, in terms of seeing those pictures and lots of smiles. So that's one of my favourite one.

Speaker 1:
What about you, Carissa? What's your favourite?

Speaker 3:
Oh, I really loved Vicky's work. She was sharing about her mother. It was just so personal and lovely. And yeah, that was definitely my favourite one.

Speaker 1:
You're an artist, Carissa. You work with students in art education. I want to ask you what you feel it is about the artistic medium, maybe the visual medium, that allows for difficult conversations to take place around grief and loss and that allows people with disabilities who have some of the communication barriers that Yumi described to fully express themselves and to share their sentiments about grief and the people that they have lost in their lives.

Speaker 3:
I think art can really serve as an in-between. I mean, using Vicky's work as an example, she shared a recipe about peanut butter eggs that it was her mother's. And so it was a way to share a story and really kind of focus on these memories that were happening. And so I think it becomes almost like an intermediary between two people or a vehicle to be able to share those maybe feelings and thoughts that might be hard to just describe.

Speaker 1:
Yumi, people often think that you should talk about your grief, and we've read about the stages of grief, so people have a sense of what grief might look like. But if you've got someone with an intellectual disability or a developmental disability, and they may not express grief in the, quote-unquote, normative way, do you feel there are misconceptions about the impact of grief on people with intellectual disabilities? Is there a way we have to go to understand what grief and the grieving process looks like for someone with an intellectual or developmental disability?

Speaker 2:
Yeah, that's a great topic. And in the older literature, it's showing that the misconception exist. So the people with intellectual disability may not be invited to have discussion about end-of-life decisions, issues, ceremonial ritual preparation. And those are very, very different for them to really start even thinking of what they are experiencing. They may not recognize that their loved one is gone. Right? Then they are informed later. But over the time that I worked with the population, they do have a capacity to process their life experiences, especially working through their life events and challenges. So our artists are between age 30 to in their 50s. So they are older than university students. So although they were limited communicative of words, but they are emotionally matured. Right? They have more experience, 20 more years experience than young kids in the college. So they were actually okay with talking about it and also understanding it.
Some of the initial expression may be different because they don't know how to describe it, what could be the way of processing those or how they can share. But art media really helps them to go through those process, reflecting upon what they experienced and sharing with others. So they are not alone. The others are experience the same thing or maybe similar thing. So seeing reflected with the peers through art was really helpful. And also, using those arts that university students also empathize and then also understood what can be the experience for them as well. So that was the sharing of universal experience through art is really impactful without using specific words and not struggle or strained with the words that we may not know.

Speaker 1:
You touched on the fact that it's an universal experience, and I'm not going to quarrel with you on that because I think you've absolutely nailed it, Yumi. But what about the specifics, when we think about people with disabilities? I had a guest on the show, I want to say about six months ago, who talked about how challenging she found it, as the sibling of a child with a disability, when she suddenly became the primary caregiver of an adult sibling with a disability. So when you look at it from the point of view of an adult with a disability, when a parent dies, they're not just losing a parent. They might also be losing a caregiver. They might have to move because they're about to sell the parents' house. They might have a huge disruption to their routine. How did you help, or were you able to help, process some of the specific aspects of grieving as a person with a disability through this art project?

Speaker 2:
That is a very difficult one that many of the population experience. And so I do encourage using art to create a storybook, personal storybook, in the scrapbook or visual book when the person is still around with them, right, the primary caregiver, mother or father. They know that person the most, and they know how they can comfort them. What are the routines? What are the essence of their day-to-day happiness? Right? So, for instance, one of my artists love to have blueberry pie for Thanksgiving. But when Mommy's gone, no one give her the blueberry pies. But if you have that in a scrapbook and know it, or pass down to the brothers or sisters, caregivers, they can carry on that tradition and rituals. So tradition and rituals, as long as you can pass down to someone or into a book, then it can carry on beyond the loss. Right?
So I think having the conversation and documenting those, that is really important process for our population. And the collaboration with the college kids also really helped us in order to document their little detailed stories, because the caregivers and workers and families, they are full-time workers, more than full-time. They don't have time to sit down, draw together, write it down. Right? So that precious time is really important. I think we need to use that time to capture the personal story in art format so they can access, visually access, that information when someone passes on, too.

Speaker 1:
That's really valuable. I think a lot of families listening will take that one to heart. Carissa, I want to shift gears a little bit. I was fascinated to learn about the context of this study being a museum. What has this project taught you about the power of museums as potentially inclusive and welcoming spaces to people of all abilities, and also, if I may extend the question, made you think about in terms of creating an inclusive and accessible arts practice?

Speaker 3:
That's a great question. I really appreciated the University of Arizona Museum of Art because they have a community art gallery that is flexible, that really is focused on multivocality. And so knowing that, that we had that space and that we could engage in this collaboration in that space, made all the difference. I felt like that the museum really understood what it meant to be a class coming in and working with artworks, and experimenting, and seeing what might work, what might need to change. There was a flexibility there that I think sometimes is left out of those museum spaces for a variety of reasons. I think there's a lot of deadlines in museums, and people want it to look a certain way. And so I really think that space made all the difference in terms of what we were able to do.

Speaker 1:
I just want to stick with you, Carissa, and pick up on something you touched on earlier, which is about the curatorial process and how that process may have evolved as a result of this project. Do you think about curation differently, compared to before you engaged in this project? And do your students think about it differently, compared to before their involvement?

Speaker 3:
I think so. I mean, we did this in 2019, and so, since then I've started really finding other ways to weave this into my courses. It's based on Pat Villeneuve and Ann Rowson Love's book about edu-curation. And so it's really bringing the educator voice and the curator voice together to program exhibitions, instead of it focusing on the curator. And so that's been something that we've been working on since and trying out in different ways. But yes, this was the start of all of that, and it's, I think, really giving students tools for when they go into the museum field, or a community arts education, or classroom teaching, to bring these tools with them.

Speaker 1:
Edu-curation. Cool. I learned a new word today. Yumi, we've just got a few minutes left. I want to give you the last word here. When you think about the broader implications of your project, of this study, stepping beyond what it's meant to the participants and the university students involved, what would you say are some of the broader implications in terms of how we talk about grief, disability, and loss?

Speaker 2:
So, grief and disability, loss. Can I put little things just before I touch base on that topic? So multivocality is the museum kind of perspective that different voices are important and represented in the museum space. And in the disability world, we have patient-centred or person-centred perspective. And it sounds more of the patient is in the... although they have the voice, but it's a deficit in a way. Someone would help to achieve the person-centred planning, person-centred philosophy, but multivocality step us forward, our people, intellectual disability, in the mutual space with the other group members. So I really like the perspective of multivocality, that how our population can tap into those space.
And the topic of grief and loss, I think those we all experience. We all age, and I think the population, not just for the people with intellectual disabilities, but all of us should continue to have a conversation openly and bluntly, honestly, so it's not the fear factor, but it's happening always and all the time. And I think using the art is the way that, because one of the quote, the students were surprised that they can experience crying and laughing at the same time. And grief is that. Both of those emotions and feelings and experience exist together. So Carissa said about the plurality or the common space kind of conversation. We maybe take away the pre-assumption of what is grief, what is loss. Then, having the conversation, try to be honest, and sharing with others, and sharing empathy with others as well. So I think that's the way to go, and art would help.

Speaker 1:
I think that was really well said. Yumi and Carissa, thank you both so much for being on the program today. I wish you had longer to talk, but it was a real pleasure getting to know both of you and hearing about your amazing study and project.

Speaker 3:
Thank you.

Speaker 2:
Thank you.

Speaker 1:
Yumi Shirai is assistant professor in the Department of Family and Community Medicine at the University of Arizona. Carissa Maria DiCindio is assistant professor in the Department of Art and Visual Culture Education, also at the University of Arizona. You heard about their article Museum as a Mutual Learning Space for Artists With Intellectual and Developmental Disabilities and University Students, published in the Canadian Journal of Disability Studies.
That's all the time we have for today. I want to thank you for being a part of the conversation. Our technical producer is Marc Aflalo. Matthew McGurk is our videographer. Ryan Delehanty is the coordinator for podcast at AMI Audio. Andy Frank is a manager at AMI Audio. And I've been your host, Joeita Gupta. We would, of course, as always, love to get your feedback. You can give us a call at 1-866-509-4545. That's 1-866-509-4545. And please leave your permission to play your voicemail on the program. If you'd like to write to us by email, you can find us at feedback@ami.ca. You can also find us on Twitter. Still we're on Twitter @AMIaudio. Use the hashtag #PulseAMI. If you'd like to look me up on Twitter, I'm @JoeitaGupta. That's J-O-E-I-T-A G-U-P-T-A, all lower-case. So, of course, we would love to hear from you. If you would like to pitch ideas for future stories or guests, please be my guest. But it's been a pleasure talking to you today and bringing you this important study and this important conversation about grief and disability. Thanks for listening.