Reid My Mind

TR:

Greetings Reid My Mind Radio family.

It’s me, Thomas, this week bringing you another bonus episode as promised.

In case you’re new here, this episode isn’t representative of the way I drop interviews. This is pretty raw, where I usually organize, chop out selected sections I think best support the narrative,
add some thoughts to move it all along and then add some sound design and music for a bit of flavor!

In an earlier episode titled, Flipping the Script on Audio Description: What We See, I used segments from multiple interviews with three individuals; Carmen Papalia, Collin van Uchelen and Andrew Slater.
I thought each of those interviews alone were too valuable to let sit on the cutting room floor or whatever the digital version of that is today.

If you haven’t checked out that episode, please give it a listen. I think you’ll dig it!

For now, enjoy this conversation.

— Reid My Mind Radio Theme Music

Collin:
My name is Collin van Uchelen. I am a community psychologist and Pyro technician in Vancouver, British Columbia, Canada. I am white with gray green eyes and light brown hair. He him his

TR in Conversation with Collin:
Tell me a little bit about what you were doing before blindness.

Collin:
My sight loss has been incremental. And while I found out that I was 20, I was in university at the time and I went through university and I entered a program in clinical community psychology, a doctoral program, loved swimming, the outdoors, fireworks, my sight loss was incremental. As I lost eyesight, the kinds of activities that I would do would change gradually over time as well.

TR in Conversation with Collin:
But you were in pursuit of your doctorate and it sounds like you achieve that?

Collin:
That’s right. Yeah, I was in at the University of Illinois in Urbana Champaign, and it was in a clinical and community psychology training program. And so I was there for quite some time and then came out, returned to British Columbia, I was born here, to pursue my clinical psychology internship at the University Hospital out here in Vancouver, have been here ever since.

TR in Conversation with Collin:
So I want to talk about the visual hallucinations, or I believe you call them scintillating photo Sia. Did I remember that correctly.

Collin:
Yeah, that’s right scintillating Photopsia . (Pronounced Fo-tope-sia) what I was told, it’s an interesting phenomena, it started to occur as my sight loss was decreasing. What it essentially is, is that I see visual phenomena, day and night, and whether my eyes are open or closed. And so they’re somewhat like, hallucinations, I guess. But I really wouldn’t call it a hallucination in that strict sense of the meaning. Let me describe what I see. It is a continual flickering and flashing of light across my whole visual field, it reminds me a little bit of, for those who are sighted, 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 little waves. And so you just get this sea of little flashes and flickers of light, it’s a little bit like that not quite as bright as it is with the sunlight. But that’s what I see 24/7 Now in my visual fields, and then on top of that, I have some moving kind of images and shapes that occur. And that vary a little bit from time to time. One of them is a little bit like a slowly rotating propeller blade like 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. And these things rotate about one rotation per second, and I’ll see it rotate 567 times, and then it almost comes flying off its axis as if the propeller has just become dislodged, and then it disappears off in the distance, most of time they’re rotating clockwise. And, and I, I can’t do anything, really to create them or to make them stop. Another effect I have is also something that moves across my visual field. And I describe it a little bit like a gummy worm. It’s a band of light that’s somewhat curved. It’s usually kind of a bright purple, kind of a whitish purple, and it’s very, very bright. And so I have these band, it’s almost like in a couple of arches that that move across my visual field, sometimes left to right, sometimes bottom to top or top to bottom, and it just kind of sweeps across my, my visual field.

TR in Conversation with Collin:
Do you think that’s similar to the floaters? I know folks describe floaters. I had that long time ago. floaters.

Collin:
Yes. Yeah, very, very much. Because as I try to focus on one of these things, and and like try to track it, then it keeps moving, you know, outside of my visual field, just just at the edge of what I would be able to see. And it’s interesting because I really see almost nothing. Now, I can tell you know, whether there’s light or dark, a little bit of light perception, but most of my functional eye sight has deteriorated. I think in terms of this, this phenomena 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 how it looks when if you look at a dry bottom of a lake bed or a stream bed where the water has receded in the sun has dried everything out. And then you have these little cracks that separate these little clumps of land, you know, they’re like little islands. And what I see is these kinds of little islands, but they’re all illuminated, and they’re kind of a bright greenish color. And then around them it is just black. And these little greenish islands have all these little scintillating, or they’re flickering, sometimes with these kind of purple sparkles in them. And these islands seem to grow in size, or divide in size and get smaller, and then sometimes clustered together. And sometimes these big clusters will form in kind of a purply. Color in it’s beautiful to look at. And it kind of reminds me a little bit of film, I used to see when I would see lava as a kid on TV, and I would see a lava flow that had sort of a crust of rock on the surface or, you know, hardened lava on the surface. And you would see in the cracks, you know, the bright orange glow below and just had that same kind of movement and, and breaking and coming together and splitting apart.

TR in Conversation with Collin:
Wow, that’s cool. Like yours sound like it has a little bit more texture than mine. And what I noticed is the movement, I don’t have movement, like the floating that does not occur for me. So that’s really that’s really interesting.

Collin:
Yeah, yeah, yeah,

TR in Conversation with Collin:
yeah. What do you feel about this phenomenon? Do you think there’s anything to it? Or is it just random? Do you make any connections ever?

Collin:
You know, I think there is a lot to it. But that’s just because I have a from my training in psychology and understand a bit about, you know, how vision works in the brain. And our sensory information is kind of combined in through the photoreceptors of our retina. But I think for me, and in terms of other kinds of meaning that it has, I don’t mind it, in some ways. I describe it a little bit like ringing in the years, you know, if you’ve been to something that’s been quite loud, or you know, for folks who have some hearing loss or whatever, like that, it’s constantly going, it’s difficult to escape from, but it’s not unpleasant. For me, it’s just part of the background of my day to day life. And I find it somewhat interesting, insofar as it also reminds me a little bit of fireworks. As a pyro technician, and training fireworks is an art form that I’ve always loved long before I knew I was losing my eyesight, and I still like it, the flickering of it, the brightness of it, the high contrast of it. And that is an effect that you wouldn’t otherwise see every day. I think in terms of meaning, it’s kind of about that. And sometimes it just makes me smile. If it’s, you know, particularly vivid, like sometimes I’m just like, Wow, it’s amazing that I’m able to see this in the context of not being able to see much of what’s around me anymore due to my sight loss. And then sometimes if if I sneeze, it’s almost like they’re activated, or the intensity or speed or brightness is, is increased. And so I’ll get these earlier, I described these these, like worms that will move, you know, across my visual field, like moving arches, and they will sometimes, you know, repeat one after the other 1 2 3 4. And they’re all rising up in succession, and they’re quite bright. I think there might be something just a reflection of the physical stimulation that’s going on at that moment.

TR in Conversation with Collin:
I didn’t even think about the fact that you were a psychologist, because when I was thinking about these visions, I start to sometimes look at at the shapes and stuff. What is that called the Rorschach, the Rorschach test with the ink blocks,

Collin:
and the Rorschach inkblot.

TR in Conversation with Collin:
Yeah. And I started to like, try to figure out okay, what am I, what am I seeing in this shape? And I’m not gonna get into what I see.

Collin:
That’s called a projective test, because you’re projecting into the image you’re looking at, you know, whether their interpretation, and it’s supposedly reveals a lot about your inner work.

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

Collin:
Fair enough.

TR in Conversation with Collin:
But it sounds like scientifically that there’s probably no because like you said his project. I mean, you could project on anything. .

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

TR in Conversation with Collin:
but it’s kind of fun. I sometimes wonder, is it related to something that I’m feeling is it related to you know, anything about my life? Is this something that I’m not consciously thinking about? I guess scientifically, that’s probably not the case. But, you know, I kind of still like to hold on to it like and wonder.

Collin:
Sounds like a whole line of psychological research that we could get into. Very interesting.

TR in Conversation with Collin:
Has your feeling changed about these. The way you feel today? Was that the same way you felt in the beginning?

Collin:
No, I think at the beginning, it was a bit more of an annoyance. It was almost like a see through a screen that was between me and the outer world that I was still able to see at that point, you know, so I could see mountains and trees and faces of people. And then I would have this sort of display in the foreground, over the top of it have this constant shimmering and flicking and whatnot. So it was a little bit more annoying at that point, because it couldn’t shut off. But now as the rest of my visual field, 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. It’s just feel so familiar. It’s always there. There’s really never a moment when it when it stops.

TR in Conversation with Collin:
If you woke up and they were gone. Would you miss them?

Collin:
I would think oh, I’m in trouble. (Laughing) Right? Am I alive? Yeah, like that might not be a good sign. Would I miss them? I don’t know. That’s an interesting question. Because it would be I imagined, like quite dark. Or maybe not. Maybe everything would appear kind of white or light gray or who knows.

TR in Conversation with Collin:
So you mentioned you are a pyrotechnic in training. So let’s talk a little bit of fireworks. What’s your earliest memory of enjoying fireworks?

Collin:
It’s kind of neat. It’s one of my earlier visual memories. I was about four. And I was living in Portland, Oregon at the time, and they had an aerial fireworks display. This was the first time that I remember ever having seen anything like that, where there were all these colored points of light that were gorgeous, red, and green, and silver and in gold. That’s my first experience. And I was hooked. From that moment on Yeah, I didn’t have much occasion to see them frequently based on where I live. But I do remember, you know, having the experience at Disney Land. And then when I came to back to Vancouver here for my internship work. It just so happened that every summer in Vancouver, there was an event where three nights in the end of July and beginning of August, they would have a 20 to 25 minute Pyro techniques display where the fireworks were all synchronized to music. And they are launched from a couple of barges that are anchored out in the English Bay Harbor here in Vancouver, 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, you know, 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. And then people who were farther away could tune in using their radios. And this was all simulcast then, and so they could see how the music was represented in the form of light during these displays, and it was just fantastic. And I remember the first one I saw, that’s when I returned here in 92. And I was I was, I was blown away. I’d never seen anything so impactful and so huge and so engaging as that because it’s not just the music. It’s not just the light of fireworks, but it’s also that the sound of the firework and the echo of that sound and how it kind of bounces around you. And the sort of immersive quality of the whole experience was was tremendous.

TR in Conversation with Collin:
Have you ever experienced fireworks on television where you don’t hear the actual explosions? You just see the fireworks and the accompanying music. Does that have the same effect on you? Oh, no,

Collin:
no, no, not so much. You know? And it reminds me actually of the little blurb that they had at the end of the you know, the Disney show way way back. Oh, yeah. They’re really young kid, you know, like, yeah, the fireworks going off around the council. It’s pretty to look at that the immersive nature of that multi sensory engagement is something that I really experienced when I’m close, as close as possible both to the firework display and to the music system. Here in Vancouver when these events occur, you know, there’s a one kind of it’s sort of like the quote front and center place, you know, at English Bay where English Bay Beach where You would go down and the crowd is very, very full there. So when the beach is full, you were sitting knee to knee on the beach 10s of 1000s of people all in close proximity, you know, would be very difficult even to walk around on the beach, you know, right prior to the display, because it is so full. People are all there for the same purpose, you know, to kind of experience this particular event. That’s pretty incredible.

TR in Conversation with Collin:
Yeah, so you can smell the gunpowder at that point.

Collin:
Sometimes you can, you can smell the smoke. Yeah, it depends on the direction of the wind, you know, and, but it’s really, it’s, it’s kind of that that Sonic engagement. And, and I tell you, there’s another part of this that that I think is really interesting, because it’s it’s a feeling sensation to. And that’s, it’s about what I call resonance. And I think it’s these are these moments when the artistry of what I’m beholding or witnessing touches me in a way that it just gives me goosebumps. If I can tell you just a bit of a story about how this occurred to me once here that just really got me to pay attention. I was at English Bay I was with a close friend and fireworks describer, Brad and you know, with 200,000 people on the beach all around you. You know, there’s a lot of chatter and conversation that goes on during these firework shows. But there was a moment when the music was kind of quiet. And the fireworks are kind of quiet to kind of muffled, sizzling sound and muffled kind of the the sound of the shell breaks as they were breaking in the air. And the crowd grew entirely silent. I had this feeling like that something amazing was going on. And nobody was saying a word. And so I leaned over to my friend Brad and I whisper and I said, Brad , like what’s happening? And he leaned back into me, and he said, it’s burning tears. It’s thousands of burning tears just slowly dripping down from the sky. Ma Yeah. Do you feel that? Yeah, yeah, yeah. So that that feeling I have, and I have it now just saying the story again, of that, that kind of tingles that went cascading through, through my spine, you know, and over the surface of my body. It’s that kind of experience that I love. That’s the kind of experience that I have often in, in the moments of tremendous beauty in like 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 because I think there’s something out there that is touching something inside of me. And I feel this kind of moment of connection and communion with it. And I think these experiences are heightened when we’re in the presence of other people who are witnessing the same or experiencing the same kind of moment together with us. And I think there’s this kind of transpersonal energy field that’s created by it. For me, I love it. So I will seek out experiences where this is likely to occur, going to performance, so one of my favorite musical, you know, groups or go into the fireworks or whatever, you know, communal shared, singing, you know, choir, that kind of thing. It’s about feeling a, it’s a feeling we, that gets activated in us. And so it’s, it’s not just the what’s happening out there. It’s about sort of our, my own sort of connection to it that I love in so I think that’s one of the big drivers. For me, one of the reasons that I love this art form is I often get that feeling.

TR in Conversation with Collin:
Wow. You know, it’s funny, because I think that answers this next question in a way, what led you to believe that you can enjoy fireworks without sight? And so the fact that you can feel it? And you still get that feeling? Sounds like it but yeah, what led you initially, to think that

Collin:
I was involved with an organization here in Vancouver called Vocal Eye Descriptive Arts, and they describe artistic and cultural events usually like performance art, to make it more accessible to people from the blind and low vision community. Primary for them was describing theatrical performances, which would be great because folks with sight loss would be in the audience and have a little headset on and would hear audio description of the action that was occurring on stage that was important, but that they might not be able to see with a describer, you know, near event as the action unfolded. So I approached the executive director, Steph Kirkland, and I said, Hey, Stef, would you be willing to come down and describe the fireworks and she was up to the challenge and she’s, you know, 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. And so I would coach describers, who were going to describe for me what the different shapes and names were of specific effect types. There’s one that’s called the chrysanthemum. And 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, if you’ve ever seen one of those, there are other effects that are more like a shooting star, you know, with a long trail of sparkling light. And these are called comets, and some are called willows, because they look a little bit like a weeping willow tree, or a palm tree. And so each of these characteristic effects has a unique label and or term that kind of refers to the form or shape that the firework takes in the sky, you know, albeit quite briefly. So coming back to Stef, so she came down to the beach to work with me, and she was describing the effects. And she was using the vocabulary that, you know, we both understood and describing the color and the changes of color, and these things are all very dynamic, right and changing quite quickly over the course of a display. I often use a metaphor, it’s like describing a flower bouquet, where the flowers are constantly changing size and form and shape and color and arrangement. It’s impossibly difficult to do in words, but just even focusing on one flower, or one particular kind of arrangement is is worth it if you’re losing your eyesight. And I think for me, I was yearning to stay connected with this art form that I so appreciated, but was losing touch with just because of the ongoing demise of my eyesight. And so there was this one moment on that that evening that Steph was describing kind of a little cluster or clump of stars that seemed to be slowly 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. And we spoke about that. And she too, had a comprehension of that. It’s just through that physical gesture of the movement that there was some potential to explore. And so over the course of the next year, she explored that, you know, in collaboration with me, and that was the genesis of the description technique that subsequently became known as finger works for fireworks. And they would use their fingertips to trace out the trajectory of the fireworks patterns on our back, and then use words to describe the characteristic colors changes and colors, or particularly interesting patterns and shapes, the words would kind of fill in the space between the gestures, between the two of them, hearing the words, feeling the tactile description on my back, and then hearing the effects of the fireworks themselves in the sky. Coupled with the music, the soundtrack for it, it was a really nice way it kind of started to reconnect me with the art form, in ways that were helping to compensate for my sight loss. They didn’t replace vision. Yeah, I would prefer to see it. But it was a way to stay connected. And so that’s become a foundation for my continued exploration in what I call cross sensory translation. It’s like how can we translate something from the visual modality into non visual modality so that we kind of stay connected with it and maybe brings a new perspective on it and new way of engaging with it as someone who’s such as myself, who is now blind,

TR in Conversation with Collin:
with the finger works, would a describer reflect intensity with the weight of their fingers on your hand? Or are you getting intensity from the sound of the explosions,

Collin:
the sound of the explosion doesn’t necessarily map on to the intensity of how bright the effect is, you know, and unless it’s like what’s called a salute, which is just like a big bang, you know, like those are the and those often occur at the finale of the show. But with the intensity of the touch of your fingers. Yes, you can convey that the brilliance, the brightness of it.

I once had a pianist, a classic, coldly trained professional pianist, do this kind of description with me. She was married to one of the pirate technicians who was helped setting up the display at this mall. moment, I didn’t have a describer with me and I said, Hey, Jen, would you be willing to do this? And she said, Well, how and so what let your fingers be the conduit of the energy of the light. And she was great at it. Even without using words, she was able to convey, convey so much of the character and the color and the emotion of that display, based on her touch and the elegance with which he was able to use her fingers in their movement, and that the delicacy of the touch at moments that were really kind of delicate in terms of the the effects, you can convey so much in that way. Yeah, that’s a good question.

TR in Conversation with Collin:
The way you sort of approach this, you tell me, it doesn’t sound like you were ever seeking a replacement. It sounds like you were clear that you were not going to replace that. But there was something that you were looking for to gain from the fireworks.

Collin:
It was reaching for anything to to enable me to stay connected with the art form. And so that that morphed over time, you know, so it just started with friends who are giving sort of the verbal description, you know, and at that time, I was still able to see the colors, but couldn’t really distinguish some of the shapes of the dimmer a fact teaching the vocabulary, and then kind of that description got more and more involved than bringing, you know, Vocal Eye on, the tactile gestures. And then, when Brett had that phrase, burning, tears dripping down, that just really opened up the window to kind of also comprehend what is possible with evocative description, you know, that’s almost like poetic in that way, that can still sort of activate my own sense of my own resonance with the art, it was always sort of reaching for and then doing work to kind of CO create the access tools that were necessary for me to continue my engagement with this artform and I’m continuing to do it to this day.

TR in Conversation with Collin:
How important would you say that is this whole thing was in terms of your adjustment to blindness?

Collin:
Well, it’s, I, 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. And rather than me like 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, Hey, would you trace that out on on the surface of my skin, and it’s through those kind of moments that are really quite generative. Little did I know, where it would lead that one experience where that could possibly go, and that it would have interest for other people too, in terms of my own adjustment to blindness, I think this is one of the ways that works for me. and blindness is terribly inconvenient. And I wouldn’t wish it upon anyone, it slows me down it, there’s a lot of stuff I don’t do and can’t do and I don’t want to spend the time to do. But this is one of the things where you know, I still have that, that desire that I’m going to work at this, you know, and I’m going to do whatever I can to stay connected with this art form.

TR in Conversation with Collin:
I’m hanging on to that word agency. (Overly exaggerated and sarcastic) )What in the world Collin makes you think you can move from being a consumer of fireworks, you know, just enjoying them into actually creating them? What gives you the nerve to do that?

Collin:
(Laughing) That was actually a really nice question. And in what I’m doing is really quite unreasonable. I am a Pyro technician, 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 that the technical details of the art form, and I’m not doing it because I’m blind or like, Hey, I’m blind, like, you know, like, I’m gonna do something crazy. I’m doing it because it’s just, it’s a natural reflection of my curiosity, in interest in this particular field, and I just keep learning more and it was really at the beginning of the Torah COVID lockdowns that a chunk of time freed up in my life that it was no longer you know, getting dressed and going to the office and with transit and this that and the other thing, you know, it’s like, oh, my gosh, I have a little bit of time. And there was an encounter with a an artist at one of these events at English Bay when fireworks were being described with this technique and Carmen Papalia. He said, calling you you should really do Something with your interest in Fireworks is because he said what you’re doing here is amazing. And 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, you know, 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. And so I, I do that with my own describers. Now to like, if I’m with fireworks, and they’re giving me too much words, that’s okay, you know, less less words, or slow down on what you’re doing in terms of your tactile gestures, simplified, but just show me one thing, clearly, I want to be a little bit in the driver’s seat about how that description works. And I think it’s that same kind of desire, that is informing my own training within the pyrotechnics, as an art form. So I’m learning and I’m seeking out to work with people who are experienced and who understand way more. And the more I learned, the more I realize how little I actually know about the complexity of this. It’s a combination of physics and mathematics and chemistry. And then there’s a little bit of artistic creativity and in the fall tend, in all this, you know, to be combined in the tablet synchronized to music, and be Arial and all the random factors that affect it, such as the wind and humidity, and, you know, whatever else might be on the go the variability from one shell to the next. It’s just incredible that any of this works, let alone to have it work in such a way that gives the viewer goosebumps is just astounding, and I want to learn how to do that. And I want to learn to be part of that. And I want to co create that. And of course, I can’t do what I can’t do. And I’m not trying to do what’s impossible. But I’m trying to do what’s within my realm of possibility where I do have some agency on designing something. And so that’s my current ambition is to design a pyro musical display, from my standpoint, as someone who has sight loss is ridiculous, but but I’m loving it.

TR in Conversation with Collin:
This might sound like a weird question, but I’ll relate it, who gave you or who can give you permission to do this?

Collin:
Yeah, who gave me permission to do this? I tell you how this came about. First of all, no one gave me permission, per se, I do do the proper certification to understand safety and legal considerations. And that was a chunk of work to make that happen. But 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, it was at this moment that, you know, I spoke with Carmen, he said you want to do something with your interest in pyrotechnics. And I was, you know, looking for somebody who had a bit of a proper Vocabulary List of fireworks effects that went along with, you know, images of what those look like that I could use for training purposes. And I managed to be referred to Bill and I spoke with them. And we had this conversation and I said this is what I’m looking for, you know, for what I’m doing with description of fireworks, you know, to make them more accessible as viewers to people who are blind. And then at the end of the conversation like, oh, by the way, I just thought I should mention, you know that I have this like crazy ambition that one day, I want to design a firework display of my own to a pyro musical to my favorite song. He heard that and I felt like oh, god, he’s gonna hang up on me or laugh or whatever. And he said, Well, do you want to fail at that? And I thought, Well, no, no, no, no, no, I don’t know, I actually kind of think it’d be really cool to do. And he said, Well, Collin, then you have to do it. Because if you don’t do it, you will most certainly fail. And you told me you don’t want to fail. So there’s one option, and that’s to do it. And he said, and I suggest you do it now. And it was one of those moments that just gave me goosebumps, you know, and it just my heart started to panic. And I started to kind of get sweaty and I thought like, and I just knew like, he’s right. You know, like, he’s right. If I’m going to do anything with this crazy dream, which have been floating around my head for years, you know, like, oh, one day wouldn’t it be cool if ya da da da da, in the meantime I’m going blind and it’s this kind of lovely fantasy, kind of a bucket list type of thing but never really, really seriously thought, yeah, I can actually didn’t really believe in myself that I could do this. Yeah. And I think it was him that kind of kick started me into seeing. Okay, well, what would it take to make this happen? And so I wrote some grant proposals with the assistance from people who knew way more about the arts field. And as Carmen told me, he said Collin you’re an artist. And your biggest problem is that you don’t know that, you know, and I kept thinking, Yeah, I thought I was a psychologist. And he said, You need to just embrace your artistic side. And he said, and I think you can go somewhere with this. And so I wrote some grant proposals, and lo and behold, they were funded. And each step of the way that I talk, doing the next kind of unreasonably ambitious thing, the door would open up for me, and step by step, person by person, contact by contact, communication, but communication, I’ve just been led forward, going deeper and deeper into the heart of the very thing that I want to have come together in my life. I’m in the midst of it now. And it’s, it’s just amazing. And it still feels completely unreasonable to be doing what I’m doing. I’m not doing anything unsafe, but it’s just like having that agency about, okay, what can I imagine in terms of translating music into light? And then the challenges? How can I translate that to my sighted coworkers, who will be working with me who are going to help me navigate what specific firework effect would create that kind of a pattern of stars or that kind of feeling or that color of sparkle without, you know, delay and or the length of time it stays visible in the sky? And that’s where I’m relying on on people who have that kind of wisdom of experience and knowledge to work with.

TR in Conversation with Collin:
You mentioned you had to get some sort of certification in terms of safety. Outside of that, is there any other certification any other governing body that’s getting in your way of trying to do what you’re doing?

Collin:
No, no, the reason I did it, it for my own knowledge and credibility.

TR in Conversation with Collin:
Right now in audio description. There are people out here who really frown upon, and who doubt the abilities of blind people to participate in audio description, in many ways. But the most obvious and the most thing that gets a lot of conversation is about blind folks who want to write audio discretion. And they question their abilities. And they question the fact that they have accommodations. And part of those accommodations are specifically you need someone to give you some of that initial description. And then they form sentences instruction all that time. But the main point around that is that there’s a big restriction on right now it’s we’re talking about audio description, but this same thing happened for blind folks who, who teach O & M (Orientation & Mobility) instruction, people doubting our abilities.
Collin:
That’s right.

TR in Conversation with Collin:
And that’s what it comes down to. Any thoughts on that?

Collin:
Many, many, because I do think that that doubt, in our own ability and our own agency, to make choices about how we want to engage with the world around us what we want to teach what we want to do how we want to have access to information or experiences in our life. Yeah, I think we’re often looked to as sort of an independent position or role, I still experience it today. If I go somewhere, and I’m with a sighted person, the handler, the ticket taker, the gate agent, whatever, whoever they talk with, they talk with a sighted person, even if it’s about me and my own access needs, I think people just default to talking with an able bodied person, because we’re they’re accustomed to us needing to be managed and handled and taken care of in some way to keep us safe or out of trouble or whatever it might be that they think. I think that’s a large part of the context. And I think some people just aren’t even aware of how much they do that on a day to day basis. And I think they may even believe that they’re being respectful, you know, by talking to the person with eyesight about our needs, you know, so it was not to, quote offend us, or whatever it might be that they’re imagining. For me. I think with the work I’ve done both with the initial description work, and with a subsequent development of my own interest in the pyrotechnical arts, it really was about charging forward and doing something that I thought worked for me fundamentally, and it has the added benefit of networking for some of my peers as well. Even with the description work that I do with Vocal Eye Descriptive Arts here in Vancouver and the Finger Works for Fireworks technique, when there was interest in it from The media, they would always go immediately to Vocal Eye about sort of as the source as the genesis for this word. And I was the one who said, Hey, how about describing fireworks? Hey, how about tracing this out on my arm. And so how quickly we forget about that kind of narrative in the surface of other people helping the blind to see and not to discount the huge benefit and import and and gift that that is that there are people who will describe for me and with my peers and for my peers and, and you know, bend over backwards to open up experiences and possibilities to us that we would otherwise miss. I think it’s lovely. I do. And I think that there are ways that we, ourselves also can have agency in navigating what that can look like. For me. I just started to develop what I was doing. And with fireworks, I started to experiment with how can these things be represented in tactile three dimensional models? And I found volunteer to work with and say, Okay, I have a blocked Styrofoam here, we have a bunch of pipe cleaners and these little sticks and plants and whatever to represent shapes are different fireworks, and what can we do to represent the shape of effects so that they work for me, and that might work for other people in terms of telling people how to recognize one firework from another? I think it comes down to agency, you know? Yeah. And that sometimes we just have to do it and, and people will like, Hey, wait, wait, you can’t go there. Watch me go. Here I go.

TR in Conversation with Collin:
Yeah, we go. How can folks watch you go? How can we stay in touch and stay in tune with what you’re doing and learn more and follow along and all of that,

Collin:
while I do a tremendous amount on my own, one of the things I haven’t really well developed, is any kind of a presence on social media or the like, my hope is one day that will come together.

The display I’m working on will be called awaken in light. Awaken is the name of the piece of music. It’s by the progressive rock group, “Yes”, written in 1977 in light comes about because of their representation of this music in the form of light. It’s not going to be your ordinary, short, top 40 piece of music. It’s a long song. It’s complex, has many different movements and many emotions to it. I would say when this is taken shape, it’ll be awakened in light as what you’ll need to look for.

I do have a website which is called Burning tears dot C A

This is a website where we talk about the power of words to describe dynamic art, such as fireworks in my exploration of it and a project that I’ve been working on over the past year and a half

TR:

Thanks for listening!

Remember, there’s lots of episodes in the archive. Personally, I think anyone new to disability, especially blindness or low vision, will really appreciate you letting them know about this podcast. So if you’re a real friend or family, you need to stop everything and let them know how they can follow the show.

Reid My Mind Radio is available wherever you get podcasts.
Transcripts and more are at ReidMyMind.com.
Just be sure you let them know;
that’s R to the E I D!
— Sample: “D… and that’s me in the place to be!”

Like my last name.

— 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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