TR:
Greetings Reid My Mind Radio Family!
Today, I’m bringing you a bonus episode.
As I mentioned in the first episode of the Flipping the Script series,
What We See, I’m sharing slightly edited versions of the full conversations I had with
the three guests; Carmen Papalia, Collin van Uchelen and Andrew Slater.
First up, Carmen Papalia.
Before we get into this conversation, I want to note
I’ve heard from a few that you enjoyed the conversation around hallucinations for various reasons.
I’d love to hear from more of you so as a reminder,
you can always reach out to me via ReidMyMindRadio at gmail.com.
One of the best ways to support this podcast is to tell a friend, a stranger or even an enemy.
I bet if you share the podcast with an enemy, they will immediately be eternally grateful to you and no longer an enemy but rather a dedicated friend for life.
That may or may not be the case, but you should still tell as many people as you can to check out the podcast.
Remember it’s available everywhere you find podcasts
The trick is spelling it properly…
say it with me….
R to the E I D!
— Sample: “D, and that’s me in the place to be”, Slick Rick
TR:
Like my last name. But first, you know how we do!
— Reid My Mind Radio Theme Music
Carmen:
My name is Carmen Papalia. I’m a non visual social practice artist with chronic and episodic pain. I am calling in from the stolen land of the Musqueam, Squamish and Tsleil-Waututh people, where I was born and live as an uninvited guest. I’m on land that’s colonially known as East Vancouver. I’m white with an olive complexion, I have black hair, I have a beard. Today I’m wearing a green will cap, a pullover sweatshirt that’s gray with I think green white LED ring that says MIT on it. I was just at MIT, giving a talk as part of a conference called altered access through the list Center at MIT.
TR in Conversation with Carmen:
Can you give me a little bit of description of your at of your work in general,
Carmen:
I started making work maybe in 2009. And that was even before I thought of myself as an artist, what I was doing, then I think I’m still doing now. It was at that time performances that I was doing to better understand my own position as a disabled person. I started just doing these, what I called experiments at the time, when I started using a white cane and when I started describing myself as disabled, to better understand how those terms and how the white cane positioned me also like what that meant in terms of my position in my community and how that changed. Now I make socially engaged artwork that addresses my own access, and then also how people who are disabled have agency and decision making power in the context of institutions. I do a lot of fun sort of performance work, where some of which I’m like, replacing my cane with different things and then trying to navigate a public space, usually an unfamiliar place. So one of my performances is called mobility device, and I replaced my cane with a marching band that I use to navigate the city. I also have replaced my cane with a megaphone in the past, instead of using the cane, use the megaphone to identify myself hail support from passers by. More recently, I’ve been like doing large scale installation work and curating. I just had a show at the Vancouver art gallery that I curated with a bunch of guest artists. I made this like large scale like 20 foot tall installation, that was a gathering place for folks in the disability community. That piece in particular was meant as a space where people could sit with material from the disability filibuster against Bill C seven, which was the medical assistance and dying act and Canada that was passed in 2021. That’s sort of an organization that I co founded with a friend Mia Susan Amir, who’s a Vancouver based theatre producer. This organization addresses leadership in the arts for folks in the disability community, with a priority on the access and opportunity for ultimately marginalized and BIPOC folks within the disability community.
TR in Conversation with Carmen:
You sound like you were still struggling saying that you’re an artist. What were you doing before 2009?
Carmen:
(Laughs)
Well, I so I got my English degree. Before that. And yeah, I guess I saw I only started studying, like art that like the kind of art that I’m making. Now, in grad school. When I, I went to Portland, I moved to Portland, Oregon, and went to Portland State University for grad school and studied art and social practice. Before that, I was studying English and Vancouver, and poetry. And before that, I was an animator. I was like an illustrator, and did like character design. This was when I had more vision. So straight out of high school, I took like two years of animation. And that was my path to become like a character animator, or do set designer character design for animation.
TR in Conversation with Carmen:
So you were an artist then? Did you feel you were an artist at that point? (Laughing)
Carmen:
(Laughs) I don’t know. I probably said I was an artist back then. I was more into the craft of illustrating, that’s something I don’t do as much now. It’s a different artistic practice that I do miss, I guess. Like I really started claiming it and saying like, I’m an artist when my career became viable. And I was like, oh, okay, the floor is not going to collapse beneath me. I can maybe make rent make my you know, pay my bills doing this.
TR in Conversation with Carmen:
Yeah. I kind of latched on to that when I heard it, because I don’t think I’m an artist, but I’ve been struggling over the last whatever years and just kind of referring to myself as a creative person. So to hear you say that it’s like wow. It sounds like you’ve been doing art for a big portion of your life. I’m real curious about how you would go into the performance. Like that was your initial thing. What made you say? I’ll try this?
Carmen:
I think it was specifically because when I started using a cane, the people in my life told me like, oh, there’s a lot of people looking at you and looking at us now, because you have this lightning rod, you’re carrying lightning rod for attention, and not that I’ve ever been struck by lightning and holding a cane. First, I was very uncomfortable that a lot of people were looking at me. But eventually I just started to think of them as like an audience. I just was like, Okay, if people are already looking at me, what is the message that I want to send them? Maybe at that point, I was just wearing snarky T shirts, sending messages that way. I eventually I started modifying my cane. My first modification was I was using a rolling ball tip on my cane. I mean, it’s smaller than a ball for billiards. I had my girlfriend at the time, paint an eyeball on it, cover it with resin. I would just like kind of drag this I started modifying the cane because I wasn’t comfortable using the standard issue cane because I felt like it was attached to the institution that I got it from where I wasn’t quite aligned politically with the institution that I was seeking service as I eventually made a 15 foot cane just to talk about how I felt like the cane was like a cumbersome symbol. Around the time I started using a cane. A lot of people would just like mistake it for 100 different things, or hiking stick or pool cue tripod wept in of some kind of
TR in Conversation with Carmen:
golf clubs, I got that one before.
You had sort of the guts, kind of to go forward with the performance…When I first became blind, and I was told that everybody staring us might be out my family. I had decided, yes, well shoot, why don’t we get sponsorship? Maybe I can where we can wrap our car in something. I said we all wear some sort of clothing saying sponsored by
Carmen:
when I started using a cane there’s this like skateboard company that was really popular called Blind. And I remember wearing their T shirts. Because the Grim Reaper with the word blind on it. That’s a good idea. Like yeah, sponsorship, I think there’s probably an opportunity there.
TR in Conversation with Carmen:
Talk to me about your idea of working non visually, you’re specific about what non visual means.
Carmen:
I don’t call myself blind. I don’t use that word to describe myself. I think it’s because of a very specific reason. Maybe I blame this on being a creative writing student. I was writing about my new access to the world. I just looked for synonyms for the word blind and just to like, you know, kind of unpack this term. And all of the words that came up refer to this lack of awareness, limited understanding, ignorant in perceptive, senseless, I made this like simile list poem. I just thought like, culturally, this word means uninformed. Seeing is believing like, we’ll no it when we see it. This association between knowing and seeing, it really is something that has been embedded in culture for centuries, I really wanted to subvert that a bit and just explain to people that no, I’m someone who uses their non visual senses. I’m someone who has prioritize the access that I have through my non visual senses in my life and relationships. And that’s what’s meaningful to me. If we didn’t live in a visual culture, I wouldn’t have to use that term non visual, I think anybody really should just be accepted for the way they learn whatever the orientation of their body or senses or whatever their behavior is, I guess it was at a time where I was trying to like, trouble like common perceptions around blindness. Blindness is often equated to like complete darkness. To, which is not the case. I have, I would say like an extra visual experience as someone who’s non visual. What I’m talking about right now is my visual hallucinations, something that I don’t often share about but I think a lot of other friends who are blind or low vision and visually impaired, like really can relate to as well. We don’t see pitch blackness, many of us what we see is very bright and like stimulating and I would say like, for me beautiful and spectacular.
TR in Conversation with Carmen:
I want to talk about that. But I got to ask you a question. The way you describe the word blind. I’ve heard folks talk about disability in the same way. But you use disabled?
Carmen:
I do.
TR in Conversation with Carmen:
Is there a difference?
Carmen:
Yeah. Okay, so for me, the word disabled is like I use it because I’m signaling my politics. I kind of get behind this idea that disability is socially constructed. The things that are barriers for me are social, cultural and political conditions, their cultural bias, discrimination, the fact that it’s harder for people like me to find meaningful, accessible employment, the fact that people like me have a hard time finding medical care that works for them. These are the things that are barriers, the condition of my body is a fact I can’t change the condition of my body. I also have like two degenerative conditions. So I really can’t change the condition of my body, it will continue to change. But what I can do is live in a community where the kind of care that I need is understood,
TR in Conversation with Carmen:
You’ve probably met a lot of folks who don’t use the word blind, but it’s really about them sort of running away from blindness. Yeah, you didn’t do that you took on a non visual way, you really leaning into that whole non visual, yeah,
Carmen:
I don’t think that I lost my sight either. Something opened up for me, when I started putting value in the non visual, my world opened up. That’s what I’m continuing to explore in my work in my writing and through the various relationships that I have with other people who want to be part of that world to some of those people are blind and low vision. But some aren’t. I do this project of performance where I and I’ve been doing this since 2010. It’s my first like, exhibited artwork. It’s a walking tour, where I take groups, my largest group has been 90 participants, they all line up behind me link arms and shut their eyes, and I take them on an hour long walk through a city on a route that I’ve mapped, and that I’m familiar with. The whole point of the walk is to exercise our non visual senses, something that we don’t dedicate time or intention to, I don’t really think of it as like, Oh, this is simulating my experience of blindness can show people how it feels to live in a visual culture as someone who’s non visual just by asking them to shut their eyes for an hour. But really, I can invite them into non visual space practice using their non visual senses. That walking tour is really about the support network that coalesces when, like a group of people come together around the same activity, the ways that we care for each other when we need to, you can imagine this group of 50 people inching across a busy street in New York, and
TR in Conversation with Carmen:
holding up traffic.
Carmen:
And sometimes we do get people honking at us because it’s as much about the ways we navigate that it is how we manage navigating public space with their eyes closed.
TR in Conversation with Carmen:
With this podcast, I’m always thinking about those who are new to blindness, new to disability, I know that somebody new is like, I don’t know about all of that. I don’t know if I can, you know, escape the visual world? And out of that. Is there an example of something that someone could sort of try on their own to even test the non visual way? Something that would give them a little bit of joy?
Carmen:
Yeah, yeah, the thing that I did was learn to be an active listener. So I was an undergrad student at the time. And I took this course in acoustic communications. And a lot of our assignments were about just going into public spaces and listening for a period of time and writing a sound journal about what we heard every sound event and quality of sound that we heard. And you can just learn that through practice. And this is how that whole field of study emerged to it was really about like a group of researchers that were going out to document the soundscape. And I mean, that word didn’t exist. Or it was soundscape came out of this whole research. But really, it was just going outside and listening and continuing that practice. I think you learn a lot about what is there just because you’re focusing and making space for it. And that’s how I really started to love this new perspective, say, finding places in the city that I liked being in because I liked the way they sounded. And that’s just one example. I think you can do things with your tactile sense to some of the times that I feel like I love being me the most is when I’m in my neighborhood, maybe beautiful kind of warm summer evening and I’m using my cane. Usually when I want to be in my body, I shut my eyes when I’m walking, just being able to explore our surroundings for me just through what I can hear and feel. I feel very free, I think it’s because I’ve made the choice to value that space. That’s the space that I want to know better. And I can do that in these ways. And I’m
TR in Conversation with Carmen:
going to assume you don’t compare in your head, in your mind, one experience to the visual experience.
Carmen:
No, not really. I receive a lot of description of art in my job. So like as an artist, and I think I have like a really great situation that I’ve set up for myself where like, usually when I’m going to art gallery, and artists or curators describing things for me, which is nice, or like a describer, someone that I enjoy their approach. It’s usually pretty good description that I’m getting, but I don’t equate it. I don’t know, it’s complicated for me, because I think in some ways, the description is the artwork. But it’s also an entry point to it. It creates something, some relationship flexibility, where I can understand these words, as the thing itself, we really are just interpreting through our physical senses, usually, anyways, we’re subjective. If you’re inspecting something visually, you’re interpreting that and then reporting to whoever about it. That’s the same thing that’s happening when someone’s describing what they’re seeing to me. And, and I’m, I’m adopting it as a version of truth. It’s hard to explain, but I do think there’s some magic in describing something. There’s been times where people have described artworks to me and sent me like a description email. I’m like, I feel like I received an artwork. Oh, wow. Like we didn’t even have to like steal this from the collection. If I can send it to someone else now.
TR in Conversation with Carmen:
Description is the art. That’s it right there.
Carmen:
Totally.
TR in Conversation with Carmen:
Let’s get into what you call your apparitions. hallucinations. Could you describe them first for me? Give me an example of what you see.
Carmen:
What I’m seeing right now are… they’re sparkly, or twinkly, it’s like water, they’re vibrant. They’re colors like blue, and purple, and green with highlights of orange and yellow, and red. Sometimes there’s objects, there’s different layers to so like I just described the layer that’s occupies my entire visual field. But there’s also these visual events that happen to on a different layer. Some of those have been happening to I’m describing, they take shape, like distinct shapes, usually. And some of them are like what I call a backward see, it kind of swirls around to my visual field. Sometimes it’ll patrol I guess. I’ve been writing descriptions of the various hallucinations that I see the see one, one of the ways that I’ve described it and the way it moves is as a patrolling manta ray, it kind of just like swims across my visual field, and then goes back and forth, and back and forth. And then sometimes I see this one hallucination, maybe like three times a day. And it’s a spiral it just like spins, maybe for like, I don’t know, five seconds, and then it kind of like just flies away. I have so many different kinds of hallucinations, though. And like I’m always seeing them. And they have gotten more amplified over time. When I was young, they weren’t as vibrant or prominent in my visual field. I remember them just being this like fuzzy vibration that I noticed some times when I was looking at a wall. Now it’s just very engaging and animated. I’m at a loss for words, sometimes. There’s a lot of similes and metaphors. But there’s not enough words to describe what I’m seeing. And I do call them apparitions playful spirits, especially this spiral like this is this is like a guy that I like seeing a couple times a day. I enjoy them. I really do. Especially when I get to like talk to other people about them. And they’re like, oh, yeah, I see that too. And hey, did you notice this? And then I’m like, oh, yeah, I did. And then like you kind of develop your vocabulary. Develop your understanding of it. Yeah, I’m fascinated with it.
TR in Conversation with Carmen:
You mentioned objects. Were those what you described or is that something different?
Carmen:
Yeah, that’s one kind of hallucination that I experienced. That watery sparkliness is like one layer and then on top of that, are the objects that I’m calling. Yeah, yeah. So sometimes the quality of my vision right now, everything blends into everything else and unless it’s like high contrast, right now I’m looking at my window. It’s light out. I can tell that there’s a brightness and it’s kind of like a Big blobby shape, I can tell that there’s more brightness there than in the rest of the room. But the rest of the room like I know, my, my desk is in front of me, and there’s things on my desk. But it just everything is blending into everything else. The layer of hallucination is kind of a filter over, whatever I’m picking up in terms of light and shade perception.
TR in Conversation with Carmen:
Was that annoying in the beginning?
Carmen:
I feel like it started happening more and more when I had already realized or like accepted that I didn’t have functional vision. Like I didn’t have usable vision. I felt like I started using a cane before I needed it. But then, eventually, I was like, I can’t use my eyes anymore. My vision is unreliable. So how much should I rely on it? Yeah, like it was really a choice. I stopped using my contacts. And I was like, What’s the point of using contacts, I’m just getting the smallest fragments of vision. They’re not super usable. I don’t want to hang on to this. I was also having like headaches and migraines because of it. So I kind of just transitioned, it almost relates to my closing my eyes when I’m using my cane sometimes it’s like I just wanted to focus on the other information.
TR in Conversation with Carmen:
Were you sort of fearful of talking about these for, you know, how people would judge you ?
Carmen:
know, I mean, I think the first person I probably told was my family, because like the condition is hereditary. So my brother has the same condition. And he also sees these kinds of playful aberrations, or at least has some effects similar to what I have. We talked about it. And then I think it wasn’t until like I moved to Portland and went to grad school that I met another person with RP. She said that she enjoyed these hallucinations. And I was like, Oh, me, too. And then years and years later, I met Colin, who, we started working with each other. And I guess I didn’t even know like about the term Charles Bonnet syndrome. Colin was offering terms that he heard from other people. The first thing he told me was scintillating, Photopsia, and I was like, well, that’s a mouthful. I had to like practice it, because it was such a twister. Leading made sense to me. I’m like, Yeah, there’s definitely some scintillation happening here. And then we just started talking about it more and more. And I learned that he had his own words for what he was seeing. And then I met other people like Andy, who had his own words for what he was seeing. And some of the things we saw were the same. And that just like really was affirming and exciting. I was reading up about Charles Bonnet syndrome, the history of it, it being like something that grew out of like this psychiatrist documenting the hallucinations that his grandfather was having during vivid vision loss from a sighted perspective, and just through his grandfather, like describing them. And I was like, wow, I want to describe my own. Everyone that I know who has this condition has their own way of describing it. And I learned, you know, like what I call backward see, and he calls a Cheeto. And with hives, like, that makes a lot of sense. And, you know, I can not think of it as a Cheeto now, but I also think of it as a glow worm too, because that’s what Colin calls it. Yeah, it looks like all of those things. And it’s, it’s this impossible, kind of like color you might see at the center of a firework. I think I didn’t really know how to describe it before I started talking to Colin about in talking to Andy about it.
TR in Conversation with Carmen:
Usually when I read about Charles Bonnet, the images are pretty scary. Most people report that this scary, like they’re reported as little monster creatures.
Carmen:
I have had hallucinations that have taken the shape of people before and figures. I haven’t thought of them as scary because I don’t know. Like, I know what they are. I mean, I, I still feel like there’s something about like, the visual and imagination that is also activated when I’m having these two. So like, I’m still learning like, what, what affects this condition or these hallucinations? What makes them more vibrant? Does it happen when I’m more tired or? I mean, I know it definitely happens more when I have cannabis that really amplifies hallucinations, depending on what I’m using, like I want to learn the conventions of the kind that I experienced. I don’t know if it’s Charles Bonnet, I haven’t talked to my doctor about this. I feel like I’m really into like exploring this with other folks. That Hey, experience it.
TR in Conversation with Carmen:
I totally get that. And definitely no judgment on the doctor because my doctor told me it was soon after I had a surgery to remove the eye. Somewhat soon after that, I started noticing it and I was like, wow, what is what is this? And so I told him about it and he was the one who told me Oh, that’s, that’s Charles Bonnet Syndrome. And then I was reading on I was like, this doesn’t sound like what I have. Mine is like a bunch of shapes. Sometimes they’re connected. Sometimes they’re not or they’re connected in certain ways. Like Finley, Colin describes something like islands, I just say these random shapes, and they’re on top of a solid black. All these shapes and colors are sort of on top of that. You can’t necessarily see any depth. But you know, I say they’re on top of it, because that’s what it seems like to me. They’re constantly morphing. But I don’t have any movement with them. It’s more like a morphing. I do sit there sometimes just really kind of focusing on it. And then it’s changed. But you don’t see the movement in it. It’s kind of hard to describe, but it’s changed. You know, when they’ll do like in PowerPoint, they do like a wipe or a dissolve and then something else just appears and it’s almost like that, but it’s really fast dissolve, so you don’t see it happening. That’s kind of the best way I can describe that. Yes, it’s absolutely tied to how I feel. If I right now took like a little quick 20 minute nap. When I wake up from that 20 minute nap. Ah, it’s so beautiful because it’s so vivid. Really? Yeah. Because the black. The black in the background is like just vivid black, it’s beautiful. And then all of these colors are just so. So vivid, goes from the haziness. And then it just boom, it’s just bright. And it’s just it’s just really nice, you know, but again, no movement. Yes, it is the cannabis can help get some movement because I experienced I was like, Okay, I’m gonna try some edibles. The edibles would bring out these sort of really bright, almost flashing, maybe a couple of pixels because it’s very it can be very pixelated what I’m seeing to this, this, I can see the pixels right? There will be like these little lights and then they’ll film the flash and then the flash. I’m like, oh shit, they’re flashing like, this is really cool. Like, I enjoy that, that. And then the other thing that I know if I’m tired, I’ll start and focusing on green. Even if green is nowhere near I’ll do that. Oh, wait, there’s the green. And so like in my house, if we’re sitting down watching the TV, my girls would say Daddy, do you see any green? Because they know that when I see green, I’m going to sleep. That’s really, so yeah, that’s like a little bit of mine. But do you focus in on? Like, sometimes I try to. I think it’s called like the Rorschach inkblot thing. Oh, yeah. Do you try to find sort of what you’re seeing in these do you sort of project like, what am I seeing in this? What is this?
Carmen:
I don’t try to interpret it necessarily like, oh, is this an omen thing or but I do really enjoy seeing it move. And so for me like it’s, I’ve described it before like an animated oil painting from space. It definitely has like an underwater quality to it to bioluminescent oil in water, maybe with some food coloring in it or something like that. It’s quite animated and dynamic for me. With cannabis though there are different varieties of cannabis that make my hallucinations take on different things. I guess this is something I’m trying to explore with my brother right now who grows cannabis for me. I also have pretty severe pain condition. I grew up spending a lot of time in hospital. It’s a pretty painful condition. It’s degenerative as well with bone pain. But what has worked for me, especially as a replacement for narcotics has been cannabis, as well as some other medications. Right now. That’s one of my main medicines is cannabis and especially what my brother is able to grow for me as my caregiver grower. This is a volunteer role through Health Canada, where we register for a growing license. He produces a certain amount for me and we make concentrates out of it and various products that I use. While it helps me with my pain. It also like engages me with my hallucinations. He’s developing a breeding program for cannabis. So we might land on and develop a staple variety that the whole point would be to activate my hallucination. Last summer we had this outdoor organic grown we grew this variety called LSD. I guess there are a handful of strains that are purported to have psych della effects are like extra psychedelic effects. One of those has the name LSD. It’s from Barney’s farm in the Netherlands. So we got some seeds, we grew some plants, it also happens to be a good strain for pain. It’s a pretty heavy hitting strain, even just vaping it, I experience intense colors. My hallucinations take on very vibrant, colorful quality. And now we have this stock of flour that I’ve been making concentrates with. And so I’ll dose myself with coconut oil. And I kind of experiment on myself in terms of like what this does to my hallucinations. And I’ve had like some amazing effects. Like you’re seeing coming back from like a nap or from sleep, I see like kaleidoscopic, shifting patterns. It just really amazing. The plan is that me and my brother going to mash up two strains that are purported to be psychedelic, and then kind of from that develop our own strain once we highlight what is the trait that is really affecting here? Because you know, there are many, many strains that don’t have this effect on my hallucination. Certain ones do. And I just saw something that just one of those manta rays.
TR in Conversation with Carmen:
(Laughs)
Oh. If someone who does not have these, if they were to partake in that strand, are we saying that they would see these things?
Carmen:
I haven’t found anyone yet. I have given a bunch of the oil to people that I know. And only people who have this condition have said that it has an effect on them. I haven’t found someone who is sighted who’s experienced this. I do have like two people. Now, hopefully, there’s going to be more in the future that I can share with two people with the same eye condition, though. I haven’t been just like, you know, kind of putting the wide net out there and saying like, Hey, does anyone one want to try it?
TR in Conversation with Carmen:
I’m sure you’d get a lot of takers. Okay, I have my very, very, very nice scientific approach to this. And so I’ve been thinking about like, is this something internal trying to communicate with me? Am I suppose to gain some meaning, I see the relationship between me and things that are going on. Like I said, when I’m tired. Seasonally, what I see is different. As we get into the warm weather, the colors are different, the colors are fruity. And so my red is strawberry red, yellow orange is more of a mango. I don’t think I’m making it up.
Carmen:
No, I really love your associations to those colors. It’s frustrating, like when you ask like, Were you worried to tell anybody about this? I’m past that. I’m just like, I’m not making this up. This is my experience. I’m happy to learn more about it. And I think it’s lovely that seasonally, you are seeing these different qualities, and also just that they’re associated with the time of harvest for fruit. That’s really beautiful. I just wanted to like affirm you, because you’re like,
TR in Conversation with Carmen:
No, no, I appreciate. You know what it comes down to, when you’re in a gallery, someone gives you a description of something, you trust what they say, I feel like it’s hard for people to probably trust what I’m saying. Because they have no experience with it, they can’t verify it. A bigger thing about this is that with audio description, we as blind people trust what we’re told. And when blind people are trying to be involved in audio description and be involved in this field. I don’t feel we’re trusted. We’re always questioned trying to get in as a narrative, most definitely trying to get in as a writer. Now there has to be this approval. There’s this process now that folks are talking about sighted folks talking about in terms of certifying and making sure people quote unquote, meet a standard to be able to do this. I think about these things. And when I talk to people, I’m feeling that same thing. I’m not going to stop talking about it. If you don’t believe me, well, f*%! you.
Carmen:
F*%! certification. Yeah. What is this about where we’re not trusted in describing the things that we’re experiencing? I think it has to do with dominant cultures privileging of visual experience, and the fact that the non visual doesn’t hold much value. I don’t know why we think that vision isn’t subjective. I think it’s just as subjective as describing the sound of something. For example, we’re all going to make our own associations to what we’re seeing and what we’re hearing and feeling when I am in a position where I’m not being trusted. And I’m sharing In my truth that really triggers me. I mean, this comes from me having medical trauma and being in hospital and needing medicine, and maybe there’s an obstructive nurse or physician, so me not being trusted, when you’re really putting yourself out there in terms of what you’re experiencing or what you need. I just question that and why it’s happening. Still, ableism is embedded in our culture. I think that this space, what you’re experiencing what me Colin and Andy are experiencing as it’s a place that I want to spend more time in, I think it’s improved my life, just saying that I’m a non visual learner, and, and that I’m a non visual artist, and getting to spend time in the non visual and understand my world on those terms. If I didn’t have the ability to do that I would be really depressed. I don’t know what I do. And I have that through art. I have it through community and disability culture. I guess that’s what I wanted. When I heard you say, I don’t know if they believe me wanting to affirm you. Because like, there’s so many ways that we’re invalidated as disabled people, questioning the knowledge that we have, because of our unique perspective or point of view, or embodied, or sensory reality, questioning the validity of that. It took a long time for me to say that I love being in this body. I just think that we need to tell each other that Yes. I want to know more about what you’re experiencing, from your point of view. And what does that mean? How does that change mine? Especially if you’re considering and in relation to dominant culture? Free me like this non visual position, it changes everything, but allows us to question why we value and privilege the visual as dominant culture does. That just really struck like a chord with me, I think it’s one of the most valuable things that we have is like what we can learn through our unique point of view.
TR in Conversation with Carmen:
You know, I told you that the doctor told me 19 years ago, it’ll probably go away in a month or two. (Laughing) almost 20 years later Doc!
Where in the beginning, I found it very distracting. It was really distracting for me. There are times when the predominant color is white, and it’s so bright, and it hurts, I have to really focus, I have to squeeze the muscle that remains and to try to get it to move. But now it’s… what would you say if you woke up and they were gone? If you didn’t have them anymore? What would your reaction be?
Carmen:
I’d have a sense of loss, probably I would be like where are my spirits where are my friends. It’s a new relationship that I have with my body. It’s something that I’m seeing all the time. It provides me comfort sometimes laying in bed in a dark room late at night, and I’m watching it, it’s dancing for me. It’s occupying my mind, and it’s engaging, and it goes really well with music. Oh, I think it would be sad if it was missing. That’s the other thing. Like when I had to see the ophthalmologist like throughout my life, it was always like, okay, in five years, there’s going to be a surgery, there’s going to be Q or something. Something’s every five years and then you kind of realized like when you’re a teenager that like, it’s not going to happen. I don’t want a relationship to my body or the world around me that doesn’t let me question what I get to question through what I have now.
TR in Conversation with Carmen:
Yeah. Tell me about the music. You just said it goes well with music.
Carmen:
One night I woke up maybe it was three in the morning or something. And I just I still had my headphones on. I guess like I had put Moog Music onto a synthesizer music on Spotify and randomly this album came on. I think it’s Dominique Dumont slept in sound artists, they made this soundtrack for a 1930 silent film, I woke up to this soundtrack. And it was very much a soundtrack for what I was seeing in terms of my hallucinations. It was beautiful. I can send us here but
TR in Conversation with Carmen:
yeah, please, please do.
TR:
Come on over to this episodes blog post on ReidMyMind.com and i’ll link you to the tracks available on Youtube.
TR in Conversation with Carmen:
The only connection is when I’m working with audio. That could be another time where things become clearer. There’s some clarity that happens and like I could be adjusting EQ and sometimes I start to say, Okay, I’m gonna go based on what I see. And so I’m adjusting. I’m like, Okay, this is this feels right now because this is, this is becoming clearer.
Carmen:
That’s great. Yeah, it’s
TR in Conversation with Carmen:
Wow. This is a lot of fun, because I’m telling you I tell I tell my family about it. My immediate family, my wife and my daughters, I don’t think I’ve ventured out and told anyone outside of my home about I mean, I mentioned that Oh, I got Charles Bonnet. I know I have. But that’s it. I don’t I don’t get to go into
Carmen:
another condition. Or other, right? Yeah, you tell family, the people closest to you? Because like they’re the most likely to you believe you and like and yeah. And yeah, I think I think that’s, I love how it’s functional for you in a certain way to even as a system for telling what time of year it is, I love that. It’s like your calendar, it serves a function within your audio production, it tells you when you’re tired. I think this is something that’s connected to disability art, and just disability experience in general. And a practice that like productively engages with disability, we are always in some way trying to make meaning of these experiences. Because what dominant culture is telling us is that there’s no value in that or you have to take this pill, procedure, etc. To get rid of that the people who want to explore what it means to live non visually or live as someone you know, even with pain, I actually think my pain experience is generative to like it allows me to make long term trusting relationships with people that are based in care. I share a lot with people, I open up a lot with folks. And because of it. Of course, there’s terrible parts to it too. But I think it gives me a lot. I think these hallucinations do as well.
TR in Conversation with Carmen:
That’s awesome. And helpful. I ask you about the weed in terms of other people like, Would you want other people to sort of be able to see what you say, is that sort of the end goal? Or is it just about inducing that and enhancing it for you and others who share this with you?
Carmen:
Yeah, that’s where it starts, for me and other people who experience it too. If it was only for me, it would be enough, but I want to share it with more people, I want to share it with other people who experience it, too. And I guess for visual people too. If I could create a new psychedelic, that I can share with people that can have the Inspire them or be beneficial in their lives, these hallucinations have a presence, they definitely make me feel less alone sometimes. And that’s an experience as someone with pain. And as someone who just has a sensory disability to that loneliness, it’s a very common experience within the disability community, because it’s hard for us to find each other literally. Sometimes, we’re separated in impairment groups, separated from dominant non disabled culture. I think if it helps people address that isolation in any way, it could be good to share with anybody, I want to like make art from it. And I want to start with people like you, Colin and Andy, see what these hallucinations can, how they can maybe encourage us towards new,
TR in Conversation with Carmen:
Say your work with the weed produces, where anyone will sort of experience what you experienced, what would you call your strand.
Carmen:
My brother and I this project that we have where we are developing this variety, it’s called impaired. We’ve been invited into a show in Zurich, this fall, where we’re developing an accessible grow room as part of the show, we have just been exploring different strain names for the this train, my brother actually came up with one that I think is hilarious, and I would love to use it. He said tripping hazard
TR in Conversation with Carmen:
(Laughing)
Carmen:
he’s also low vision. So like, perfect.
TR in Conversation with Carmen:
(Laughing ) Nice. Wait so accessible. grow room.
Carmen:
So because my brother’s low vision, like there’s certain systems that he set up for himself different ways that he does things that are accessible to him, and he’s applied some of those to the design of our grow room. And so we’re just going to, like kind of go further on, you know, with that, that concept and produce a grow room that’s functional, it may not have things growing in it. But it’s going to be sort of a replica of the one that my brother designed and, and kind of with maybe more features when it comes to accessibility features for its Folks who are low vision and folks who have pain as well, so, and a lot, a lot of what we do with impaired to is really about like, I guess like people having the agency to produce their own medicine and especially people who are disabled? Yeah.
TR in Conversation with Carmen:
Wow. That’s, that’s, that’s fantastic. Yeah, it’s funny because there’s these, again, with the connection of what this episode is about. It’s like, you know, blind people getting involved in description, you know, it’s also about or it could be about, you know, financial maintaining themselves, right. And that comes out of Blind people working with description, and what you’re doing right now comes out of you describing your hallucinations.
Carmen:
And I’ll just say, like, my brother is, is an engineer. He’s like a heavy civil engineer working on like, logic. He’s a project manager in that field. And, you know, he, he is he is a anomaly within his field. And, and I think I, you know, there’s, there’s a lot of blind, low vision and non visual artists out there, too. But I think, you know, even trying to find a space where, like, what, you know, what space am I going to occupy given that this is a visual tradition? Yeah, you know, I think, yeah, I think I think there’s something to what we’re doing with this impaired project that is a response to, to that, you know, and maybe even a question that my brother’s asking with regard to his own field. Yeah, yeah. Wow. That’s fantastic.
TR in Conversation with Carmen:
So, where can people kind of stay up to date with the with everything you do?
Carmen:
CarmenPapalia.com may be updated soon. You can send an email to info at impaired project.com. Our show in Zurich. It’s part of a show called inter dependencies. And it’s going to go up at the beginning of October. This year.
TR in Conversation with Carmen:
Carmen, this was fantastic. Yeah, I appreciate this man.
Carmen:
Totally. Thank you, Thomas. So fun talking to you. You’re awesome!
— Reid My Mind Radio Outro
Peace!
Hide the transcript
