Reid My Mind

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

[Music begins, spacey sounding ambient music]

TR:

Picture a solid, black, background.

A full vibrant, glossy black.

It should take up your entire visual field.
If you’re someone who has or had what would be considered typical sight,
two eyes with full vision,
then fill up that range with this shiny black surface.

If your surface is or was less than that, go ahead and fill that full range.

My personal range of vision has always been from about in front of my nose and to the right.
My left eye and optic nerve were removed at one year old, I have no recollection of sight from that side.
It’s not black.
It’s as if you ask what can you see out of your ear? That’s nothing.

Nothing and black are not the same.

I’m specifically talking about color as in
that portion of the visible spectrum of light that is reflected back from a surface.
The darker the color the more light it absorbs.
So, black consists of all that light.
It absorbs it where white reflects it.

This glossy black surface, is the first layer of my hallucinations or what’s medically known as Charles Bonnet Syndrome.

In this episode, I want to explore my hallucinations or visions.

As I began thinking about this topic I noticed a correlation between
talking about what I see and Blind people authoring or in anyway
participating in the production of audio description.

When it comes to AD, the conversation is about what others see and describe to us.
Today, we’re talking about what we see and present to the world!

Now so far, you heard my voice, but I brought some friends along.

This is not a figment of your imagination, a hallucination, dream or nightmare,
this is Reid My Mind Radio! And I’m your host Thomas Reid.

We’re back baby! Flipping the script on Audio Description!

— Reid My Mind Theme Music

“I think in some ways the description is the artwork”
– Carmen Papalia

## Charles Bonnet Syndrome

TR:

So what is Charles Bonnet syndrome?

CBS is a condition that some people get when they lose some or all their vision.
It causes them to have visual hallucinations (seeing things that aren’t really there).

This condition is surprisingly common among people with certain types of vision loss such as;
age-related macular degeneration

TR: (filtered voice effect) Nope, never had that!

glaucoma
TR: (filtered voice effect) No me papi!

diabetic retinopathy
TR: (filtered voice effect) No Mon!

Without visual data coming in through the eyes,
TR: (filtered voice effect) That’s me!

the brain fills the void and makes up images or recalls stored images for you to see.
This is what causes the visual hallucinations of CBS.

It is very similar to how people who have lost a limb may feel phantom pain and is not a sign of a mental health problem.

Here’s the thing, my hallucinations aren’t specific at all. I’ve read and heard from some people who experience CBS and it sounds nothing like what I see.

So from this point forward, let’s toss out the medical jargon and focus on what we see!

— Sound of an object tossed and smashed.

Damn, medical jargon is heavy!

## Describing Hallucinations

— Music begins, ambient spacey vibe.

TR:

Back to that glossy black surface I mentioned earlier.
Go ahead and fill your entire visual field with that image.

Here’s where it gets a bit tricky!

What I see is abstract, random shapes and colors that form on top of that black surface. They change or more like morph throughout the day. Remaining static for only seconds at a time.

Right now, I see an upside down letter V spread wide with curved edges.
It’s a royal blue.
It sort of leads up to a dark orange with a hint of red oval shaped that
is split in the middle where the color is slowly blending into a cloudy white .

— Long pause

And now, some of the colors remain, but the shapes are totally different.

Carmen:

There sparkly, twinkly, like water. They’re vibrant. Their colors, like blue, and purple, and green with highlights of orange and yellow.
And red.

I almost feel like 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.

I do call them apparitions and playful spirits.

TR:
Carmen Papalia from Vancouver Canada.

Carmen:

I’m a non-visual social practice artist with chronic and episodic pain.
I’m white with an olive complexion. I have black hair, I have a beard.

There’s also these visual events that happened on a different layer.
Some of them are like what I call a backward see patrolling manta ray. It swims across my visual field, back and forth, maybe like three times a day, for like, I don’t know, five seconds, and then it kind of just flies away.

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.

it’s just very engaging and animated.

TR:

(Excitedly)
His hallucinations move!

Mine are more like a video, Power Point or slide deck presentation dissolve transition.
It happens but the speed is most often too fast to see unless perhaps you’re really focusing in.
It doesn’t translate to movement.

More on these apparitions, hallucinations, visions?

Collin:

Scintillating Photopsia.

It’s an interesting phenomena. It started to occur, as my sight loss was decreasing.

I see visual phenomena, day and night, whether my eyes are open or closed.

Somewhat like, hallucinations, but I really wouldn’t call it a hallucination in that strict sense of the meaning because it’s like I see a constant.

It is a continual flickering and flashing of light across my whole visual field.
It reminds me a little bit of what it looks like when the sun is low on the horizon.
And it’s setting over a big lake or the ocean or a body of water with all kinds of waves.
This sea of little flashes and flickers of light, not quite as bright as it is with the sunlight.

TR:

If that’s not enough, there’s another layer.

Collin:

On top of that, I have some moving kind of images and shapes that occur and vary a little bit from time to time.
One of them is a little bit like a slowly rotating propeller blade, a propeller from a ship, or like the old sweep of radar that goes around in a circle and leaves a little trail wave of light that ripples out behind it about one rotation per Second. I’ll see it rotate 567 times.
They’re rotating clockwise.
Then it almost comes flying off its axis like as if the propeller has just become dislodged, and then it disappears off in the distance

TR:

That’s Collin van Uchelen.

Collin:

I am a community psychologist and Pyro technician in Vancouver, British Columbia, Canada. I am white with gray green eyes and light brown hair. And my pronouns he him his.

TR:
Yeh, you heard that correctly, Pyro technician.
More on that later, but first
more about that second layer of shapes or visual phenomena.

Collin:

I describe it a little bit like a gummy worm , a band of light that’s somewhat curved, usually kind of a bright whitish purple, that move across my visual field, sometimes left to right, sometimes bottom to top or top to bottom. It just kind of sweeps across my visual fields. It’s very, very bright.

TR in Conversation with Collin:
Do you think that’s similar to the floaters?

Collin:

yes. very much.

one of the most interesting things that I see often occurs early in the morning, if I wake up from a dream or wake up in the middle of the night, it’s almost as if I’m looking at a dry bottom of a lake bed or a stream bed, that the water has receded in the sun has dried everything out. These little cracks, little clumps of land they’re like little islands, but they’re all illuminated a bright greenish color.
They’re scintillating, flickering sometimes with these kind of purple sparkles in them.
These islands seem to grow in size, or divide in size and get smaller and then sometimes cluster together.
Sometimes these big clusters will form in kind of a purply color, it’s beautiful to look at.

TR:

My shapes, which I could refer to as little islands also come together where you can still see their outline.
I agree with Collin, they are beautiful.
But I didn’t necessarily think that in the beginning.

## Early Apparitions

TR:

I can’t recall the first time I noticed these colorful apparitions.

Besides having floaters as a child, I think my first experience with visual phenomena occurred just prior to official blindness.

Before my surgery to remove my right eye, I had a biopsy done about a month earlier.
My eye was patched up which left me functionally blind since I had no left eye.

One day, I thought I was seeing the sun sort of sneaking into the room through the window blinds.
Then I realized, I wasn’t even in front of a window. It remained in my visual field no matter what room I was in or the time of day.

It wasn’t until a few months after the removal of my right eye that I began noticing the current style of shapes and colors.

Similar to others, I can’t say I was excited for these uninvited guests in my life.

Collin:

At the beginning, it was a bit more of an annoyance because it was almost like a see through screen that was between me and the outer world that I was still able to see at that point.

I could see mountains and trees and the faces of people and then I would have this sort of display in the background, this shimmering flicking, so it was a little bit more annoying at that point, because it couldn’t shut off.

But now as my capacity to see what’s out and around me has diminished, this has become more of okay, well, this is what I have available for me to see now.
It’s really not an annoyance.

## What am I supposed to do with these hallucinations?

TR:

These ever present, random, constantly changing colorful figures, are like family or a close friend. They’re around and ready to just kick it with me.
Take my mind off of the problems or at least just hang out with me as I contemplate.

Collin:
I find it somewhat interesting insofar as it also reminds me a little bit of fireworks .
The flickering of it, the brightness of it, the high contrast of it.

I think in terms of meaning, it’s kind of about that, and sometimes it just makes me smile.

TR:

Yes, these visions can be a way to kill some time entertaining ourselves.
Similar to television or movies.

— Music begins, a melodic xylophone which turns in to a joyful beat.

So therefore, in this conversation, my friends and I are the describers – crafting words to help you form images in your mind.

Carmen:

I’ve described it before like an animated oil painting from space.

It definitely has an underwater quality to it like bioluminescence or oil in water and maybe with some food coloring or something like that.
It’s quite animated and dynamic for me.

I don’t try to interpret it fairly like, oh, is this an omen for something?
I do really enjoy seeing it move.

TR:

There are times when I drift off and think about what the shapes bring to mind. Sort of like the Rorschach psychological test where subjects are asked to look at inkblots and describe what they see.
At least that’s how it went down in so many detective shows from the 70’s and 80’s.

Collin:

You’re projecting into the image you’re looking at, interpretation, and it’s supposedly reveals a lot about your inner workings.

TR in Conversation with Collin:
Yeah, I’m not gonna say what I see.

TR:
I know many people get uncomfortable with that language.
Am I really seeing? Afterall, I have no eyes!

It’s probably the same people who try to correct those who READ audio books.

[In nerdy voice] Well actually, you’re listening to a book not reading! (Snort),

As if me consuming the information through my ears is less valid than taking it in through my eyes.

Carmen:

for me, when I started putting value in the non-visual, my world opened up.
And that’s what I’m continuing to explore in my work and my writing and through the various relationships that I have with other people who want to be part of that world.
I do this project, since 2010, my first exhibited art artwork.

It’s an 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 or 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 really dedicate time or intention to.

TR:
This is not a walk in my shoes or blindness simulation.
(Heck no!)
This is about exploring by more than just vision.

Carmen:

I can invite them to practice using their non-visual senses.
That walking tour is really about the support network that coalesces when a group of people come together around the same activity and the ways that we care for each other when we need to.
TR in Conversation with Collin:

You mentioned you are a pyrotechnic in training. So let’s talk a little bit of fireworks.

— Sounds from a Vancouver Fireworks event.

Collin:

It just so happened that every summer in Vancouver, there was an event where three nights in July and beginning of August, they would have a 20 to 25 minute Pyro techniques display where the fireworks were all synchronized to music.

They are launched from a couple of barges that are anchored out in the English Bay Harbor which is a gorgeous location, and it’s rimmed with beaches all along, and you would get two to 300,000 people come out and sit on the beach in the evening, watch the sunset and take in the fireworks display.

In the center of it, they would even have a big PA system where the music was broadcast out on the beach.

They could see how the music was represented in the form of light during these displays, and it was just fantastic.

It’s not just the music. It’s not just the light of fireworks, but it’s also the sound of the firework and the echo of that sound.
how it kind of bounces around you? And the sort of immersive quality of the whole experience was tremendous.

TR:

That’s sight and sound.
What else?

Collin:

Sometimes you can smell the smoke.
I tell you, there’s another part of this that I think is really interesting, it’s a feeling sensation, too.

These moments when the artistry of what I’m beholding or witnessing touches me in a way that it just gives me goosebumps.

I was at English Bay, I was with a close friend. there was a moment when the music was kind of quiet. The fireworks are kind of muffled, sizzling sound, the crowd grew entirely silent. And I had this feeling like that something amazing was going on. And nobody was saying a word.

— Music fades out

I leaned over to my friend Brett and I whisper, Brett, Brett, like what’s happening?
He leaned back into me. And he said, it’s burning tears. It’s 1000s of burning tears just slowly dripping down from the sky.

Wow. Yeah. And do you feel that?

Tingles that went cascading through my spine and over the surface of my body. It’s that kind of experience that I love. And that’s the kind of experience that I have often in the moments of tremendous beauty in the presence of art, whether it be music, or a fireworks effects, such as this one, which was these kind of long, orange, reddish tendrils of light that were just dripping down all through the sky.
I call that resonance.

TR:

Ultimately, isn’t that what it’s all about? Feeling!

It’s the feeling of wanting these experiences that can lead someone to figure out how to actually make that possible.

Collin:

I was involved with an organization here in Vancouver called vocal ly descriptive arts.
They describe artistic and cultural events usually like performance art, to make it more accessible to people from the blind and low vision community.

I approached the executive director, Steph Kirkland, and I said would you be willing to come down and describe the fireworks. And she was up to the challenge.

We, of course, talked about how this was an unusual thing, but she did a bit of study about it. And by this time, in my life, I had also assembled a bit of a vocabulary list and a glossary of terms.
\

TR:

I can’t help but be reminded how some, when explaining the history of audio description,
tend to either breeze through or totally leave out the fact that Blind people started this art.

I don’t know if Collin is the first to describe fireworks, but he initiated this process.
He developed a vocabulary used to describe exploding fireworks .

Collin:

There’s one that’s called the chrysanthemum. That is a spherical effect, where you see little trails of light behind the stars, as they move out from the center point a little bit like a dandelion that’s gone to seed.
There are other effects that are more like a shooting star with a long trail of sparkling light. And these are called comets.
Some are called willows, because they look a little bit like a weeping willow tree, or a palm tree.

it’s like describing a flower bouquet, where the flowers are constantly changing size and form and shape and color and a ring instrument.

TR:

It’s not easy, but for Collin it’s worth it.
Similar to how audio description enables those who enjoy movies and television to stay connected with that part of their life,
Collin wanted to continue enjoying fireworks.

He discovered alternatives to just the visuals.

Collin:

There was this one moment that evening that Steph was describing kind of a little cluster or clump of stars that seemed to be slowly dripping, drifting down. And I was trying to kind of comprehend
well, okay, how quickly is that moving in the sky, and I asked her to trace it out on my skin using her fingers. And so she traced it out on my forearm, the speed of this descent to this cluster of stars, and just her doing that gave me goosebumps at that moment, because I thought, This is how to do it. Because with that tactile gesture, she could convey the movement and the speed and somewhat of the character of the light in ways that words were unable to capture.

We spoke about that, and she too had a comprehension that just through that physical gesture of the movement that there was some potential to explore.
Over the course of the next year she explored that in collaboration with me, and that was the genesis of the description technique that subsequently became known as finger works for fireworks,.

TR:

Combining the glossary of terms describing fireworks with the tactile representation and sounds.

Collin:

that’s become a foundation for my continued exploration in what I call cross sensory translation.

How can we translate something from the visual modality into non-visual modality so that we kind of stay connected with it, and maybe it brings a new perspective, a new way of engaging with it as someone who’s now blind.

TR:

If you’re thinking this is all about trying to hold onto sight, you’re totally mistaken.
Holding onto things that bring you joy, community, things that spark thought and idea, yes.
An exploration of the human experience that challenges the ableist vision centric way of going through life.

TR in Conversation with Carmen:

I’m gonna assume you don’t compare to the visual experience

Carmen:

No.

I receive a lot of description of art in my job as an artist.
Usually when I go into art gallery, an artist or a curator is describing things for me or A describer that I enjoy their approach. So it’s usually pretty good description that I’m getting but I don’t equate it.

It creates some thing, some relationship where some flexibility where I can understand these words as the thing itself
We really are just interpreting through our physical senses, we’re subjective, if you’re inspecting something visually you’re interpreting that and then reporting to whoever you know about it.
That’s the same thing that’s happening when someone’s describing what they’re seeing to me. I’m adopting it as true, as a version of truth.

there’s been times where people have described artworks to me and sent me a description email.
I feel like I received an artwork and I’m like, Oh, wow. Like, we didn’t even have to like steal this from the collection.
I can send it to someone else.

I think in some ways the description is the artwork

TR:

That’s it! The description is the art.

Yet, there’s still a lot of controversy around Blind people participating in this field.

TR in Conversation with Andrew:

Can you talk a little bit about the roles that you fill in the process of creating AD?

Andrew:

My roles originally just started kind of as a collaborator or an advisor on projects, because I wasn’t comfortable with maybe recording my voice.

I’ve worked with other people to write stuff down since my vision is impaired.
There’s a guy locally named Victor Cole, who does a lot of audio descriptions for local performances and award ceremonies and all these other cool stuff that the disabled arts community employ him to do that. I started talking to him about his process and then realizing that my role as a blind person to create this is probably going to be different than how Victor approaches, which is cool, because that means you have
more voices and more opportunities to give different perspectives of stuff.

TR:
That’s Andrew Slater, Sound Designer, Composer and Accessibility professional!

— Music begins, a cool bass riff that opens into a smooth Funk groove.

Oh and he’s a member of a cool funk band called Velcro Lewis Group.

Andrew:

My pronouns are he him.

I’m a middle aged white man with dirty blond hair. A full red beard with some gray. Right now, wearing a red t shirt with white lettering that says I am not Daredevil.

TR in Conversation with Andrew:
(Laughing.) Do they stop you and ask you excuse me?

Andrew: 00:56
Point to the shirt.

(Fading out, the two laugh together)

TR:

Andrew recently had the opportunity to write and record the audio description for a film called the Tuba Thieves,
by Alison Oh, Daniel, a Deaf director.
It debuted at Sundance.

Andrew:

Ninety Five % of the film, the dialogue is ASL.
My wife, and I, my wife is autistic, and I’m visually impaired, we wrote the ad and I narrated it, and then I was able to hire these three disabled voice actors to read basically the subtitles of the captions.
They had done some of this work before, and they’re all actors and performers.

Everybody is disabled on this , we’re all showing up as we should.

TR:

I haven’t seen the film, but I can tell you that alone makes me want to see it.

Andrew:
What was cool about this film is that the sound itself was so incredibly descriptive, and all very referential, and all sounds that I think so many of us would get.
The actual audio description that I’ve read and recorded, was real minimal. And there’s a lot of silence in the film. So I kind of shut up.
This is a weird experimental, sort of almost documentary style film. I have done so much like experimental audio description sort of stuff with like, I don’t know layered voices and sound design and weird, poetic sort of approaches to stuff. And I could still bring some of that energy but certainly didn’t want to make a huge mess out of it. And I’m happy with how it worked out.

TR in Conversation with Andrew:

So when you said that you and your wife wrote the ad for the film. So you were participating in that process? You were you a writer?

Andrew:

Yeah! we watched the movie. We took notes, put it on the timecode.
I don’t know if this is a process that other people do. But we put it on the big monitor. And based on how Tressa would describe what’s on screen, sometimes I could see it because a lot of the movies slow.
We take notes of what’s on screen, we’d go off some of the notes that the producer gave us. Then I would just reword it or edit it. So it was more interesting to match the energy especially the energy of these captions.
These captions were out of control. Awesome and weird and abstract at time.

TR:

Recognizing the vibe of the film, Andrew decided he didn’t want to have a straight forward approach to the AD.

With what he describes as tunnel vision Andrew, with a bit of assistance from his wife Tressa, incorporates his own perspective of the film.
Sometimes, that’s more about heart and emotion than it is about simply verbalizing the visuals.

Andrew:

It’s a cool film it has people talking about when Prince and the revolution played Gallaudet University to like a whole hundreds of Deaf folks.
There’s these photos, cause there was no film …

On the left is the band rock in out and you can see that Prince has his , white Stratocaster up high, and he’s just jamming and you know he’s wearing purple, even though it’s black and white.
Then to the right it’s like, hundreds of deaf people all signing I love you with the index, the pinky and the thumb up.
That photo and another where he’s given I love you sign standing next to this kid with this huge grin on Prince’s face. where you just like, Man, I got, like, all emotional, I was like how do I describe this because this is just beautiful and it’s like a still photo on screen for five seconds

TR in Conversation with Andrew:
You know what’s crazy? I have on a Purple Rain shirt.
Andrew:
That’s not crazy.

— Filtered sample of Prince performing the Purple Rain guitar solo live in concert.

## What am I supposed to do with this?

TR:

I never actually thought me seeing these hallucinations made me crazy.
I just thought I’d be perceived that way.

I mean come on, consider the way blindness totally affected how I’m often perceived in public.

Rather than thinking something was wrong with me, I sought out to make connections between my visions and my feelings.
I thought I could find some deeper meaning.
I thought I could answer the question;
what am I supposed to do with these visions?

Collin:
I don’t think it has particular specific meaning. And so in that regard, I think it is some random kind of activation of our nervous system to fill in the space that’s left behind with the degeneration of the photoreceptor cells.

TR in Conversation with Collin:

I sometimes wonder is it related to something that I’m feeling?
Is this something that I’m not consciously thinking about?
I guess scientifically, that’s probably not the case. I kind of still like to hold on to it.

— Summer sounds – ocean or spring river with birds
TR:

As I started to examine my visions more closely, I saw beauty.

For example. The summer season has it’s own set of colors,

Mango yellow orange, strawberry reds, what I call Caribbean blue.

How could these not have a positive affect on my mood?

— Music begins, a lively up beat Calypso tune with prominent steel drums.

TR: (Filtered voice)”Mango Daiquiri anyone?”

What I once thought of as a nuisance, I began wondering if it could actually be more like a new sense.

The ability to access an abstract projection of something from within me?
Maybe I’m communicating with myself? A repurposing of the screen in the theater that is my mind.
My own internal broadcast network, thanks to Charles Bonnet Syndrome.
— “This is CBS!” Sample: CBS Television

## Trust & Faith

TR in Conversation with Carmen:

When I’m working with audio, that could be another time where things become clearer. There’s some clarity that happens. I could be adjusting EQ and sometimes I start to say, Okay, I’m gonna go based on what I see.

— EFx: A moderation of static slowly becomes more in tuned.

I’m like, Okay, this feels good right now because this is becoming clearer.

Wow, this is a lot of fun. 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. That’s it.

Carmen:

You tell family, the people closest to you, because they’re the most likely to believe you.

I love how it’s functional for you in a certain way too.

And 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.

This is something that’s connected to disability art, just disability experience in general a practice that 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 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 open up a lot with folks and because of it, and, 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:

When someone gives you a description of something, you trust what they say, right? I feel like it’s hard for people to probably trust what I’m saying.
They have no experience with it, they can’t verify it

With audio description, we as blind people trust what we’re told. And when blind people are trying to be involved in audio description, I don’t feel we’re trusted, we’re always questioned.
Whether that be trying to get in as a narrator, most definitely trying to get in as a writer.

Carmen:

I think it has to do with dominant cultures privileging of visual experience.
The non-visual doesn’t hold much value.

I don’t know why we think that vision isn’t subjective.
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.

I don’t like when I am in a position where I’m not being trusted. And I’m sharing my truth.
That really triggers me because this comes from me having medical trauma, and being in hospital and needing medicine, and maybe there’s an obstructive nurse or a physician.
ableism is embedded in our culture.

TR in Conversation with Andrew:

What role does trust play in your process?

Andrew:

in my situation, working on the Tuba Thieves with my wife. There was no NDA, we actually got complete trust.
Say you got to sign an NDA, And people are like, I don’t want this other sighted person to help you work on this. We don’t want them to leak these secrets.
Well have them sign an NDA, right?
It’s just another case of, they don’t trust us to do something for us.

That’s whack.

They don’t trust us to the point where you’re going to be underbid to somebody that knows how to type. Somebody that can do the text to speech thing.
Somebody who’s a voiceover artists or actor or whatever and gets all these commercial gigs and just kind of like, oh, yeah, I can totally right audio description.
It’s just what’s on the screen. With no training.

TR:

It’s one thing if an individual questions or doubts another person’s abilities, based on an experience.
This person didn’t do a good job the first time.
The work was sloppy and not up to par.

It would be quite understandable if someone were hesitant or even refused to hire that person again.

Marginalized groups aren’t always afforded that same opportunity.
The actions of one seem to affect the entire group.
But the non believers aren’t looking for proof that someone can do the work.
They use everything to support their own claim that a group can’t.

Andrew:

The people I know involved, I know them all from being blind. They’re not just like, here’s a gift. It’s like, Hey, I made this in community and collaboration with blind people. Yeah. If I’m sighted, there were blind people involved in this where a lot of the times it’s like, oh, what you don’t like sound quality? Oh, you don’t like how it’s written? Well, you know, you should be even lucky that we’re doing it. You know, like, that kind of thing. Yeah. I don’t like that attitude.

I feel like people don’t trust us with anything.
People don’t even trust that I can tie my shoes.
Let me ask you sighted people.

— Sample: “This is a public service announcement” Jay Z, “PSA”

Do you look at your shoes when you tie them? Do you look at your teeth when you brush them? Because that’s just weird.

TR:

Last October, I was invited to testify during what felt like a trial where Blind people were forced to def
their desire to participate in the production of audio description.
This meeting was supposedly held to give the community an “opportunity” to provide feedback and opinion to the Certification Subject Matter Expert Committee before they reach a judgement on whether or not Blind people should be allowed to write audio description.

These are my words.

I’m sure it wouldn’t be presented this way but the result in my opinion is the same.
forcing blind people to seek sighted approval.

And let’s be real, we’re not talking about a Blind person with ambitions of driving trucks.

Rather, those interested in finding their own accommodation to complete a job.
and gets a job done.

Andrew:

What was cool with working with Alison Oh, Daniel, is that since she’s deaf, she’s a disabled artist and filmmaker, she just trusted that we would do what was best, and that we would do it
and it would be cool and created and not some sort of boring ass thing.
We all realize that we don’t want to send out some jalopy sort of audio description out for our community, because it’s just kind of like, a sellout move.

TR:
We’re all subject to having the quality of our work open for critique, but what gives anyone the right to say what someone can or cannot aspire to do.

I’m all too familiar with the internal struggle that goes on when an idea first presents itself.
That initial excitement followed by the questions.
All of the time put into thinking of how to make it possible, but also dealing with self doubt.
Then finding the solution that eliminates the doubt.

Collin:

I think what it reveals to me most clearly is the value in having some agency about developing an approach to do stuff that I want to do that might not be already existing out there in the world.

As far as I know, no one was into describing fireworks for the benefit of people who are blind at that moment.

Rather than me wishing and hoping that someone would invent this kind of thing, to say, Hey, this is what I’m imagining, this is what I would like to do.

It’s through those kind of moments that are really quite generative in terms of where they can lead and that it would have interest for other people too.

In terms of my own adjustment to blindness, this is one of the ways that works for me.
This is one of the things where I still have that desire that I’m going to work at this and I’m going to do whatever I can to stay connected with this art form.

TR:

That’s a belief in self.
But that doubt can remain even when doing the work.
It’s ever present just waiting for a chance to take over.

Meanwhile, a group focused on rehabilitation are empowered to decide who can or cannot pursue the art of writing audio description?

TR in Conversation with Collin:

I’m hanging on to that word agency.
(Sarcastically!!!) What in the world Colin makes you think you can move from being a consumer of fireworks, just enjoying them into actually creating them.

Collin:

(Laughing) Actually a really nice question.
What I’m doing is really quite unreasonable.
I am a pyrotechnician, I am learning about not just like how fireworks look and how they function, but actually how they’re constructed, what the components are, how they are assembled, all the technical detail of the art form.
I’m not doing it because Hey, I’m blind, I’m gonna do something crazy. I’m doing it because it’s a natural reflection of my curiosity, in interest in this particular field.

TR:

And don’t under estimate the power of individual encouragement.

Collin:

Carmen Papalia, he said, you should really do something with your interest in Fireworks. What you’re doing here is amazing.

He said it really sort of changes the discourse about accessibility as kind of a quote service or a one size fits all type of thing into a more relational realm, where this is kind of negotiated between someone who is not using their eyes to perceive the world and someone who is able to be a guide or interpret the visual world with us and where we have some agency about how that works.

I’m not trying to do what’s impossible, but I’m trying to do what’s within my realm of passion possibility, where I do have some agency on designing something.

My current ambition is to design a pyro musical display, from my standpoint, as someone who has sight loss. Yeah. It’s ridiculous. But, but I’m loving it.

TR:

I guess I should just be happy I didn’t have to become certified to have a podcast.
Certified to raise my children?

Some people are certified woo!
— Sample “Woo! Come and get it!” Rick Flair

TR:

Laughing fades out.

TR in Conversation with Collin:

This might sound like a weird question, but who gave you permission to do this?

Collin:

First of all, no one gave me permission, per se.

In terms of the kind of permission to pursue this as an area of interest, it was a conversation I had with a pyro technician, here in British Columbia, Bill Reynolds.

I was looking for somebody who had a bit of a proper vocabulary list of fireworks effects that went along with images of what those look like that I could use for training purposes.
I managed to be referred to bill. We had this conversation.

at the end of the conversation, I just thought I should mention that I have this crazy ambition that one day I want to design a firework display on my own, pyro musical to my favorite song.

I felt like, Oh, God, he’s gonna hang up on me or laugh or whatever.

He said, Well, do you want to fail at that? And I thought, Well, no, no, no, no, no, I actually think it’d be really cool to do.
He said, Well, Colin, then you have to do it. Because if you don’t do it, you will most certainly fail. I suggest you do it now.

My heart started to pound.
I just knew, he’s right. If I’m going to do anything with this crazy dream, floating around my head for years, but I didn’t really believe in myself that I could do this.
I think it was him that kind of kick started me into seeing well, what would it take to make this happen?

TR:

So what’s your choice;

Be the one encouraging the pursuit of passions. Or the obstructionist,
, placing obstacles in front of a well meaning person just trying to do their thing!

TR:

Chances are you believe what I’m sharing with you about my visions, my hallucinations. Right?
Yet, there’s absolutely no way for you to verify what I see.
I mean, you can learn more about CBS and verify that it exists and others share in the experience, but you’ll never see what I see.

Andrew:

look, if I tell you that this is what’s going on, this is what’s going on.

I wrote down a description for a painting that doesn’t exist, it was just something that was in my head.

Like basically an access move. So that sighted people can see you can kind of have fun and do weird stuff when you describe the things

It’s totally visually centered for that.

But then when I do descriptions of some of my sound work, it’s never visual.

I’m describing the space that I did this recording. Texture, smell, touch vibration and emotional sort of stuff with a lot of metaphor.
I still think visually and describe things with sight in mind, but that’s mostly just for communication.

TR:

When I as a person who is totally Blind, decides to watch visual content, I’m trusting in that group of people producing the audio description.
I can never verify it for myself.
I can ask another person that I trust, but that’s all I can do.
Have trust and faith.

How hard is it to trust that a Blind person…
Can, provide thoughtful feedback in the form of quality control.

Can, craft a concise and effective script using an accommodation that works for them?

It goes beyond audio description…

Can, safely teach orientation and mobility skills.
Can, use technology efficiently to perform all sorts of jobs.
Can, raise a child?

It’s like anyone else, we’re just on a quest to live our lives.

Damn! Can I kick it?

## Engaging with our Hallucinations

TR:

At any given moment, I can engage with my visions.
Stopping whatever I’m doing to observe the colors and shapes.

— Music Begins, an ambient, lulling track.

Once while using Ambien, I laid in bed waiting to feel sleepy, observing the difference in colors.
All of a sudden, I noticed movement.

The shapes became much smaller and darker.
An electrified Forrest green on black with shimmering, blinking red dots.
Then, suddenly, they all begin floating. Moving with intention as if about to reveal something I’ve been waiting to learn.

Lying there, patiently waiting to see what was next…

(Heavy breathing as if asleep.)

Next thing you know, I’m waking up.
It’s 3:32 AM and I can’t fall back asleep.
The bright colors quickly return.
I never find out what I thought the Ambien was about to reveal.
What was behind that movement? I want to know.

But the Ambien is for putting me to sleep, not enhancing my visions.

Carmen:

This is something I’m trying to explore with my brother right now who grows cannabis for me.
I also have a pretty severe pain condition.
It’s degenerative as well.

I grew up spending a lot of time in hospital.

But what has worked for me, especially as a replacement for narcotics has been cannabis as well as some other medications.

Especially what my brother is able to grow for me as my caregiver grower.
This is like a volunteer role through Health Canada, where we’ve registered 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 engages me with my hallucinations.

TR:

That’s what I’m talking about… engaging!

Carmen:

There are a handful of strains that are purported to have extra psychedelic effects. And one of those has the name LSD, it’s from Barney’s farm in the Netherlands.
We got some seeds, we grew some plants, it also happens to be a good strain for pain.
So it’s a pretty heavy hitting strain. Even just vaping it, I experience, intense colors, my hallucinations take on very vibrant, sort of colorful, quality.
Now we have this stock of a flower that I’ve been making concentrates with, and so I kind of experiment on myself, in terms of like, what this does to my hallucinations, and I’ve had, like, some amazing effects.

I see like, kaleidoscopic, kind of shifting patterns.

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, there are many strains that don’t have this effect on my hallucinations. Certain ones do.

And I just saw something, one of those manta rays

## Where are All My Friends?

TR:

Why not engage in what we’re experiencing?

For so many people, blindness or whatever the disability is viewed as something to run away from.
Instead of choosing to try new approaches or adaptations.
Some spend a lot of time, possibly even the rest of their lives trying to escape it.

TR:

I don’t want to make it seem like everything about the hallucinations or visions is enjoyable.
Every now and then I experience an avalanche of painfully bright white overtaking the colorful shapes and fighting to engulf my viewing area.

It’s reminiscent of those eye exams where the doctor shines the light into your dilated pupil.
I’m forced to stop, put my head down and squeeze my eye shut hoping to escape from that bombardment of white.

TR in Conversation with Carmen:
I told you that the doctor told me 19 years ago, it’ll probably go away in a month or two. almost 20 years later.

What would you say if you woke up and they were gone? If you didn’t have them anymore?

Carmen: 1:03:49
I’d have a sense of loss.

Probably I would be like, where my spirits where my friends.

It’s a new relationship that I have with my body , it’s something that I’m seeing all the time and it provides me comfort sometimes.
I’m laying in bed in a dark room, late at night, and I’m watching it, and it’s dancing for me.
It’s occupying my mind and it’s engaging, and it goes really well with music.

I think it would be sad if it was missing.

When I had to see the ophthalmologists throughout my life, it was always like, okay, in five years they’re is going to be a surgery, there’s going to be cure, every five years.
Then you kind of realize, it’s not gonna happen.
I don’t want a relationship to my body or the world around me that doesn’t let me question through what I have now.

TR:

I know someone right now is thinking, “Thomas,bruh, it’s not real.”

Well, television, movies fictional characters in books, none of that is real, but we miss them when they’re gone.

If random shapes and colors inspire me to create art, ask deep questions of myself
or even just entertain me for a moment, who’s to tell me what’s real.

And!

ever see a grown man cry when his favorite team loses a championship?
— Sample: “Hah! Whacha See Is Whacha Get”, The Dramatics

TR:

Man, don’t talk to me about real.

## Contact
# Contacts

— Music begins, a groovy guitar riff leads into a funky cool 70’s R&B type of vibe.

TR:

Shout out to ;
Carmen Papalia

Carmen:

You can send an email to info@impairedproject.com.

Collin van Uchelen, reach him at BurningTears.ca

Andrew Slater

Andrew:

My Insta Gram, Tick Tock, website YouTube; ThisIsAndySlater.

These fine gentlemen, are the newest official members of the Reid My Mind Radio family

— Airhorn

You’ll have the chance to hear more from each of them later when I release our full conversations.
Something I’ve never done.

TR:

I’ve been wanting to explore Charles Bonnet Syndrome or CBS for quite some time now but never found anyone interested in sharing their experience.

My hallucinations are quite different from what others typically report, so I felt I would need additional representation.
That’s where I went wrong.

I was never really interested in exploring the diagnosis as much as I was interested in what we see.

I want to send a bright colorful shout out to one of the biggest supporters of this podcast.
That’s my friend and colleague, Reid My Mind Radio alum and evangelist,
Access Artist, co-host of the Blind Centered Audio Description Chats, Rockwood Leader … Cheryl Green.

She inspired this episode when She and Carmen Papalia discussed their apparitions on her podcast Pigeonhole.

— Sample from “Pigeonhole”
Cheryl:
every episode is transcribe. Links, guest info and transcripts are all at WhoAmIToStopIt.com. My disability arts blog.

Carmen from Pigeonhole episode:

Let’s just keep the conversation going.

TR:

So, now, I extend my left hand…
(murmuring) Or is it the right hand? Yeh, I think it’s the right hand.

So I extend my right hand.
(Murmuring) Or is it the left hand?

So now I extend my left hand, which holds that same baton.
Anyone can grab it.
There’s no guidelines to this, you don’t have to pass any certification.
And no one is going to stop you.

So take this idea of describing your hallucinations and do what you want with it.
Feel free to explore in formats other than audio.

Disabled artist; graphic designers, poets, musicians how does this inspire you?
Awh, man! I can only imagine!

I look forward to wherever y’all take this because I know there’s value in what we see!

I hope you all feel there’s value in Reid My Mind Radio.
Come rock with us wherever you get podcasts.
We have transcripts and more at ReidMyMind.com

Just remember, that’s
Oh snap, check out this new image floating by:
R to the E I D!
— Sample: (“D! And that’s me in the place to be.
” Slick Rick)
Like my last name!
— Reid My Mind Radio outro
Peace!
— Music fades out!

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