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Man with a white cane leading a line of people along a city street
Bloom Blog

Shut your eyes. This art is about sound, touch and mutual support

Photo by Jordan Reznick

By Louise Kinross

Carmen Papalia is a non-visual artist disrupting a field dominated by sight. For example, during walking tours all over the world, people line up behind the Vancouver resident and close their eyes. Then, putting one hand on the person's shoulder in front of them, they're led by Carmen, who uses a cane and gives verbal instructions, along a busy city street or through a park. They learn to rely on sound, touch and their fellow participants. "This helps us understand more deeply our access, our agency and our connection to others," Carmen says.

His disability identity stems from an eye condition and sickle cell anemia, a chronic, sometimes life-threatening, condition. In sickle cell anemia, a person's red blood cells are shaped differently, making it easy for them to stick together and block off small blood vessels, causing pain and organ damage. We spoke about Carmen's life with these chronic conditions; medical trauma; and making art in a culture that values the visual.

BLOOM: What was it like to grow up with a very serious medical condition?

Carmen Papalia: As a kid, a lot of my experiences in hospital were new, scary and unfamiliar, because I didn't really know what was happening. I had these pain flareups throughout childhood that were thought to be growing pains. It wasn't until I was 16, when I had a very severe crisis with pneumonia and avascular necrosis in my hips and shoulders that caused debilitating pain, that I remember hearing the diagnosis sickle cell anemia. I spent quite a bit of time in the hospital as a child, and still do, and I was confused and scared to be going through all these medical procedures. It was isolating to be in and out of the hospital.

Pain was part of my life, and it wasn't treated properly. I used to stay home from school with pain, and not even think I should go to the hospital. In a strange way, I knew more about my visual condition than my pain condition, even though my pain condition is more profound. I have two hereditary conditions. My vision started declining when I was 21, but I had symptoms throughout my childhood. This meant going trick-or-treating on Halloween caused anxiety because night vision was difficult to navigate, and I couldn't do sports that involved fast-moving objects. But I don't feel limited by my visual condition, and I never grieved my sight loss.

BLOOM: You speak about medical trauma. What were some of the experiences you had?

Carmen Papalia: As a child, I had compassionate care in a children's hospital. I did have a sense that I was sick and I could die, but most of my trauma comes from transitioning away from the children's hospital to a big city hospital when I was 18. There was less opportunity to get to know people and establish relationships.

I was a teenager who had piercings and dressed like a punk and I was thought to be drug-seeking. When you have a sickle cell crisis one of the main treatments is narcotics. It needs to be addressed quickly or it can lead to serious complications. Multiple times I've been denied care in the ER. I have a card from my specialist now that tells the ER doctors exactly what I need. But that card even fails to get me care. Six months ago I had an instance where a nurse denied me any medication in the ER. After the height of the opioid epidemic, there were sweeping changes to protocol around pain management, and physicians were prescribing less, so people are afraid to treat you. When you're in debilitating pain, it's hard to advocate for yourself.

BLOOM: That must have massive mental health effects.

Carmen Papalia: I'm really scared to go to the hospital. For over two years I stopped going to the hospital when I was in crisis. I was trying to figure out if my wife could start an IV or give me my medication. I have a new team of specialists now and I'm with a great program. But there are lifelong effects of these traumatic experiences.

BLOOM: As a child did you have contact with any other children with sickle cell anemia or other chronic conditions?

Carmen Papalia: I don't remember that. There was no program through the doctors to connect folks to other families. There was nothing about social connection around your impairment or disability. I think that would have helped. I never thought of sickle cell anemia as part of my identity until recently, when I became politicized as a disabled person with my visual condition.

I saw my issues as not just individual, but something a lot of people are experiencing. The systems were not built with us in mind and we lack leadership in the way they serve our communities, whether it's the medical system or the education system or the cultural sector in which I work. I don't see any differences between the levels of authority and the kind of hoops and red tape you have to go through in order to get what you need in terms of support. I had a very hard time getting the basic accommodations I needed in university.

BLOOM: When did you develop an interest in art?

Carmen Papalia: That was something I always brought with me. When I was in hospital as a child I brought a sketchbook. I would draw a lot. I remember drawing in the ER as a teenager and people got to know me through that. Some of the nurses in the wards were like 'Oh, I remember you, you do all those drawings.' I'd give drawings to them and it was a way to make a connection. What I appreciated about it too was that when I would present at the hospital there would be that trust that a relationship brings.  

BLOOM: You were described in the recent children's book We Move Together as blind. But I understand you prefer the term non-visual learner. Can you explain?

Carmen Papalia: I think there's a big distinction. Blind and visually impaired are terms that privilege the visual experience. You're talking about yourself in relation to vision. If you look in a thesaurus for other words for blind, they're going to be words like 'lacking knowledge' or 'unaware' or 'without conscious information.' And that's not my experience. At a certain point in time, people ask me when did I lose my vision? I never thought of it as a loss. It was changing over time and I made different negotiations in my life around those changes. I thought of it as opening up my experience vs. limiting my experience. 

At one point I had to shift value from the visual to the non-visual in order to centre that experience of learning from non-visual senses. 

I was studying acoustic ecology and I started listening intentionally as part of this course. That was the first time I really spent time listening and that was when I really started becoming a non-visual learner.

BLOOM: It sounds like you saw your disability in a generative way, as an avenue to allow you to explore the non-visual world.

Carmen Papalia: I think my pain experience is generative too. It allows me to make close, long-term relationships based on trust. I'm able to share with people about what I need and be vulnerable with them and build these connections. It's not an assimilation paradigm of living with disability, which a lot of service organizations adopt, where you're trying to erase the disability experience and reintegrate into a larger peer group that is non-disabled.

I want support that allows me to understand what it means to be in this body.

I used to volunteer at the Canadian National Institute for the Blind and at one point I was working at a camp. One of the kids I worked with had two prosthetic eyes and since he was very young, and at the camp, he was instructed to look at people when he was talking to them. That really upset me. Why isn't this person being supported in learning the way that they learn, and being the way that they are?

You touched on that idea of normalcy, which is a false concept that people who came way before me decided. We're always pushing against that. Medicine is built on healing, overcoming, minimizing and limiting the impact on one's life of disability. We now have legislation in Canada where you can seek assisted suicide just because you have a disability or mental health diagnosis. A lot of our support services erase the disability experience.

I want to centre the way I learn. We need to support the way people live and affirm and validate their experiences vs. trying to change them. 

BLOOM: What's been the greatest challenge, and joy, of living as a non-visual learner?

Carmen Papalia: It's not a challenge anymore. But I had to go through a period of figuring out how to identify myself that way. I had to bring people into the logic I was trying to put forward around de-centreing vision in a visual culture, and maybe questioning why we centre our culture around vision. 

It was hard when I was starting out as an artist to find my place within the art landscape given it's a very visual practice. 

Many of the people who are in decision-making roles in the arts still prescribe to that. But it's changing. People are excited to explore tactility now. What in the collection can we touch? The answer is often we don't know, because we've never been asked that question. The joy in identifying as a non-visual artist comes from those possibilities. What I'm doing with museums around tactility is spending time with our hands on objects, and developing a vocabulary for what those objects feel like and how that informs the way we understand them. 

BLOOM: What do you hope people get out of your non-visual walks?

Carmen Papalia: I've done those all over the world and in every setting you can think of, including busy city streets in New York or Oakland or San Francisco. My largest group to date was in 2017 in Chattanooga, Tennessee with 90 students. 

I want folks to spend time using their non-visual senses and practising that kind of wayfinding in order to make that environment more legible to them. It's providing an opportunity to shut your eyes and enter a new realm, and one you want to return to. I specifically say in my walks that it's not a simulation of my experience, because much of my experience I can't share by asking someone with vision to shut their eyes.

It's about people coming together around this idea of exercising non-visual senses and a common agreement around support. 

Making an agreement around support is central to my ideas about accessibility in any context. In 2015 I wrote a manifesto called Open Acess. It has five principles for accessibility that go beyond a compliance model. It's about people responding to the needs in the room at any given time, and sharing responsibility around care collectively vs. assuming there's one way or path to provide support. 

Open Access is alive in all of my work from my walking tours to my performance when I replaced my cane with a marching band in order to navigate the city, to my framework for addressing accessibility in art institutions.

BLOOM: How would you describe your art in a simple way?

Carmen Papalia: Participatory projects that address the conditions of my access in various contexts. Opportunities to participate in ways that help us understand more deeply our access, our agency, and our connection to others.

BLOOM: I heard you talk in an interview with Al Etmanski, and you distinguished between the terms disability rights and disability justice. I didn't think of the two as different. Can you explain?

Carmen Papalia: I think people use the term disability justice to describe any disability rights-based movement. But it's something very specific that grows out of the Bay area in California in 2005 when a group of mostly queer women of colour with disabilities came together and proposed this framework they called disability justice. 

I think they were frustrated with rights-based organizing. If you're racialized and disabled you have little political power or representation to make change within the political framework. Disability justice is about building capacity for care that people wouldn't have otherwise because of governmental failure or medical ableism. A recent example of cultural ableism, the condition that disability justice is a response to, is triaging of critical care during the pandemic and the passing of Bill C-7. Disability justice is about mutual aid connected to transformative justice and developing our own systems for care and safety within the community vs. relying on the state. It might be disabled people making deliveries to other disabled people or providing intentional care that validates their experience. 

BLOOM: What advice would you offer parents of children with a variety of disabilities?

Carmen Papalia: There's a lot of support your kid with a disability needs that you can never provide them with, because they need to find it through community. You need to learn from your child when it comes to their experience. Affirm your child's experience as a way of being in the world that is valid and should be valued in all contexts, including school. The issues that people face with disability as adults, with patronizing service provision models, are similar to things kids experience with a lack of agency, autonomy and decision-making.

BLOOM: What would you tell children's rehab professionals?

Carmen Papalia: That's a hard thing for me to comment on. Rehab is important in some ways. I had two hip replacements and I had to go through rehab in terms of my mobility, so that was helpful and needed.

I would say compassion, understanding, and affirming a child's experiences as much as you can. Listening, and whoever you're serving, taking their leadership around their needs. That's hard to do in the medical setting. I don't know of many patient-centred programs, especially that serve kids. 

BLOOM: So affirming that different ways of being are valuable, without having to change?

Carmen Papalia: Yes, but that's not congruent with many of the goals of medicine, which are to restore, rehabilitate and alleviate.