Reid My Mind

TR:

What’s up Reid My Mind Radio family.
Thanks for joining me this week.

In thinking about this episode, I decided to open the vault.

— Sound of a large vault door opening/ closing

— Music begins; a joyful fun mid tempo groove.

This podcast has been in existence since 2014 so yes, I’m referring to the archives as the vault because I think there’s value in what’s going on 9 years of episodes.

In 2015 when all of the episodes were really being produced for Gatewave Radio, I produced a couple of episodes on audio description. One was about Marvel’s Daredevil and what many believed was a bad move by Netflix in releasing the series without providing access for Blind viewers in the form of audio description.

We learned later that behind the scenes, even before the release of Daredevil, there were conversations taking place that helped lead to the success we enjoy today.

Less than ten years later, the future of AD doesn’t feel as bright as it did back then.

Who do we turn to? What do we do?

Sometimes it feels like “NO ONE WILL SAVE US”!
That’s up next, but first let me protect the archive and close the vault!

— Sound of vault closing as the kick drum of the intro music.

— Reid My Mind Theme Music

TR
Today’s conversation, ultimately is about advocacy.
And we know this isn’t new.
It feels like so much of what we as disabled people want;
access to employment, art & culture, transportation… you name it, requires a significant amount of advocacy.

This is Flipping the Script so we’re specifically talking about audio description,
but personally I feel there’s lessons that go beyond AD and apply to us all no matter the specific disability.

One form of advocacy is making space for the conversation.
That’s not a one time thing. It requires re-visiting and hopefully bringing in new people and new ideas.

Sometimes, we have to challenge the ideas that are put forth.

Like when in conversation with other Blind people on the subject of improving and increasing audio description, someone inevitably says something like;

TR in Conversation with Michael:
Why can’t audio description be more like captions?

What’s your response to that idea that oh the Deaf community has it all together captions are great, blind people need to learn from that to get audio description, to meet that same sort of level?

Michael:
Yes. That’s a great question. I think, first of all, it’s one oppressed group talking badly about another. I think an oppressed group is doing better than they are, which, unfortunately, is one of the hallmarks of oppression in general. So when jealous of someone else with a disability, then that’s part of the problem. Secondly, I don’t think captions are as commonplace as they should be. I really do try and advocate for both captions and audio description. And both of them just need advocacy throughout.

TR:
That’s Michael McNeely.

Michael:
I live in Toronto, Canada. I work as a lawyer for the Department of Justice. I’m also a filmmaker and a film critic. I provide film criticism for AMI TV, which is a new station in Canada.
I have about 6000 listeners for my film criticism. And I have also released a film today. It’s called advocacy Club.

TR in Conversation with Michael:
Tell me about it.

Michael:
It’s a documentary about my former work place which is called Canadian Helen Keller Center. It’s also located in Toronto. It’s a training center for people who are Deafblind. And it’s a residential center.

I was an advocacy instructor. And now I’m just a lawyer on consult.

I was helping clients with any issues that they had with regard to just standing up for themselves, or advocating.

It’s about why these people need to stand up for the issues that they keep having in their lives, and how we became closer together as a result.

TR:

According to the film’s web page, Michael is the first Deafblind person to direct a film. You can learn more about the film at AdvocacyClubFilm.com.

TR in Conversation with Michael:
Tell me a little bit about your relationship to disability. I don’t get too much into the diagnoses and all that, but whatever you want to share around your relationship with disability.

Michael:
I don’t even remember my diagnosis. I just remember that my geneticist is really excited about me, because she seems to have discovered a new disease. I told her to name it after me.

As far as I know, I’ve always been disabled my whole life. This is who I am. This is what you get. I’m actually fascinated by how other people perceive my disability.

So sometimes people think that being deafblind is the saddest thing in the world. I don’t think it’s the saddest thing in the world. There’s a lot of things that I do have privilege. And I’m happy to use my privilege for the common good.

TR:

If only more people thought about their privilege that way. That’s another story, but for now back to the question, are captions really the north star for access?

(Michael:)
So in Canada, we have movie theaters that are mostly run by Cineplex, I would say they have a monopoly set up that uses the CaptiView machine, which is a device that you can put into your cupholder and watch captions that way. Not all movies work with this.
So it really depends on institutional knowledge, as well as the movie has been made compatible with the technology. Unfortunately, for a lot of people with vision challenges, the CaptiView device, would not be accessible to them, since it’s quite small. So you have to be able to read the words in the caption of your machine to gain any benefit from it. Let’s talk about open captions.

TR:

Open captions don’t require any specialized technology, they’re on screen for anyone to see.

(Michael:)

Just like when you go to the gym, people can’t hear the TV. So you read the caption.

I think open captions will change the dialogue of captioning in general. Because you should be able to see a caption anytime you watch a movie.

TR:
That visibility normalizes access.
No longer is it hidden away and others will be able to report when captions aren’t working properly or even available.

Similar to many of our experiences with AD, captions aren’t always available. Sometimes it’s the technology, other times it’s a film that was delivered without them all together; in theater and at home.

TR in Conversation with Michael:
How about the streaming captions?
Michael:
Good question. So I’ve been buying a lot of different subscriptions to streaming services, and I cancel them.
If I remember, within a trial subscription period, but I try and do that just to see how good the caption is, and how reliable it is. I think Disney plus is pretty good at that Netflix is doing captioning very well. Amazon sometimes does not have things captioned. But I emailed the customer service. I’ve asked them to put captions in. Sometimes they listen, sometimes they haven’t. I try and make an argument that if I pay for a subscription service, than I’m paying for 100% accessibility.

TR:
I don’t think it’s a coincidence that Amazon’s subscription service is tied to Prime. Nor do I think it’s a coincidence that Michael has experienced a lack of captions on the platform.

For many disabled people however, cancelling a service like Hulu is much easier than cancelling their Prime account.

The latter makes purchasing all sorts of products accessible and extremely convenient. And I don’t doubt that they are fully aware of this.

We discussed access in movie theaters , at home on television and streaming… film festivals?

(Michael:)

Some are better, and some are worse. I’ve actually filed a human rights complaint against the film festival that was not attempting to be accessible.

You just want to know how much of the content is accessible. So if you can say 100% of the films have closed captioned in 30% have audio description now might be a good way to advertise before buying tickets for it.

One of the recommendations I’ve made was can film festivals to provide discounted passes for people with disabilities, not just because people with disabilities t to make less money, but also because the content is less accessible. So for example, if the Toronto International Film Festival has 300 movies, but only 200 of those movies are accessible , I suppose then should only be paying for those 200 movies instead of a full market price.

TR:

Advocating with our dollars as well as our voices. I support it!

I’m starting to think that ubiquitous captions aren’t actually a thing.
And even though captions which are indeed more widely available in comparison to audio description, similar to AD, it doesn’t guarantee quality.

Yes, quality and consistency isn’t now. But I know it’s not the captionist fault.

I have great respect for the Captionists.
I’ve seen them work in person, especially in the court system. They probably don’t have time to think about the content. They just have time to type in as fast as they can.

TR:

It’s not about blaming one party. Every role in the process plays a part. Executives set the standard by creating a climate of inclusion. Insisting that access is a part of the culture from the beginning. Making sure to include the community to determine what’s good access.
Choosing not to procure services solely by price and paying attention to quality.

As Michael said, we can use the power of our dollars by not supporting services offering poor quality. And sometimes that just means walking away altogether.

Michael:
I stopped watching reality TV, and I stopped watching news, because the captions wasn’t doing it for me.

Michael:

One of the things with watching live entertainment is that the captioning doesn’t keep up.
I was watching the news. And I was reading in the caption that a serial killer was on the loose and had killed a few people. When I looked at the TV I was interested in what the segment was about. It was a senior quilting festival so I thought maybe there was a serial killer loose at the seniors quilting festival.

I haven’t been able to watch the news since.

TR in Conversation with Michael:
Wow. Wow.So the captions were that bad, frequently?

Michael:
it’s better to watch a documentary. Because you know that there’s been Yes. post production done with it.

TR in Conversation with Michael:
What about automated captions?

Michael:
Oh my goodness. We use the automated captioning on Zoom. And I can tell you that it never gets it right. It is one of the most distracting things I could ever imagine. It comes up with the most ridiculous things that I’ve never said or would ever say.
For example, it said something about a whale’s anatomy. I wasn’t even talking about whales or anatomy.

TR:

One of the problems around automated captions is context. Even when it does properly transcribe what someone is saying, it doesn’t include the speakers name.

Michael:

So that can be hard sometimes. As a lawyer, I need to know who I’m speaking to sometimes.

as you probably noticed, I have an accent, I have a deaf accent. So sometimes the captioning doesn’t understand my accent. And it can be insulting. Because it reminds me that I have an accent, it reminds me that I have speech problems. So it’s one of those things that makes me feel like I’m taking a step backwards.

On another note, if you’re asking someone who’s deaf or hearing impaired to try and interpret the caption you’re asking them to make themselves tired before 10am.

if I play , let’s guess the word Thomas said, the game gets pretty old, there’s no prize. I don’t know if I win or not.

TR:

I feel similarly about watching content without AD.

I can try to follow along as best I can but I won’t know unless I’m in conversation with someone who had full access or research online. Not really the way I personally like to watch movies.

My choice? Well crafted culturally competent description written with love that centers the Blind community. And the best way to make that happen?

Michael:
Making the film at the beginning with an awareness of descriptive audio.

Let’s say I was going to make a slasher film. And what I did to ensure that my audience understands what’s happening, I’m probably going to put in some pauses, I’m going to put in some reflective periods, I’m going to not have that action happen all at once. It’s never going to be a bit longer movie, but it’s going to be more accessible. And it’s going to make the point that everyone can enjoy this kind of film. We don’t expect blind people to go see this slasher movie, but perhaps they can if it was accessible for them.

TR:

That’s audio description not only as access, but something we promote here quite often; seeing audio description as a creative tool rather than a mandated requirement.

Michael:
When you’re talking about compliance, it’s already too late to actually make much of a difference.

If you’re talking about compliance, it sounds like you’re leaving it to the last minute. it just comes off as not caring enough about people with disabilities. It’s just checking off something. It’s just doing something that a computer does, by itself. It’s not actually useful unless you go in and check it yourself.

TR:
See how the lines just got blurred?

This is true for both audio description and captions.

We talk about the opportunity to be more creative with AD and have seen a range of examples of that. Opportunities exist for captions as well. For example, color coded fonts to represent different people or emotion. However, some of the creative ideas like moving the captions off the bottom third break access.

Michael:
Because if you don’t know where the words are on the screen, then it’s not really helping anybody.

Imagination is unlimited. But one of the challenges is, how can you be creative and accessible in the center?

TR in Conversation with Michael:
I also heard about the lack of description of all things sound in captions, would you say there’s like a need for improvement there? So for example, when music plays how descriptive are they about the music that’s in the background? Do you get that at all?

Michael:
If there’s a fight scene, and the caption says birds chirping in the background, I’m like, who cares? Unless the bird is actually involved in this fight.

I’ve seen captions that when there’s a person walking on the street, it says street sounds. When the person driving, it says driving sounds. Obviously this person’s driving, and obviously that’s making sounds so give me some new information about that.

It’s that classic philosophical question. How do I describe blue to you as a person who is completely blind? How would you describe sound to me?
Not every person is the same.

TR in Conversation with Michael:
Right. Depending on what the film is, when he’s talking about describing blue, is the color blue important? Or is it more about the feeling?
Is this relating to the Blues as in sadness, or is this something else?

Michael:
100% I’ve just been learning about the color aspects of filmmaking. If you want someone to feel relaxed then they use lots of greens and blues. If you want someone to feel angry or violent you’d probably use red. That kind of thing.

TR in Conversation with Michael:
So, what would you like to see more from caption writers?

Michael:
Let the caption writers introduce themselves at the beginning and provide a contact.

I think that’s always something that made me feel better when I was at court , because I knew it was Joanne that was doing the captioning. And Mark , that was doing the captioning. And it was a human being.

TR:
It’s not surprising that those companies producing solid AD t to include their company name and both writer and narrator in the credits. One has to wonder why this isn’t standard practice for both AD and captions.

Michael:
I think it’s about accountability, providing the service.

I think we just get this tendency where people with disabilities are supposed to just accepts what’s given to them, just because we don’t have anything better.

We assume that everything we receive is okay, everything that we receive, gives us the equal playing field, it gives us better advantages than other people in life. That’s definitely Because there’s a lack of transparency and communication about the accommodations that have been delivered.

TR:
Michael even suggested a feedback form where folks could comment on the quality of the captions.

I talked about something similar for AD during one of our BCAD Chats.
That’s Blind Centered Audio Description Chats which you can find in this podcasts feed or head over to ReidMyMind.com.

Shout out to my fellow BCAD Chat partners Nefertiti Matos Olivares and Cheryl Green.

I have some pretty good ideas around how such a feedback form, well really a full website could function. Providing not only a means for feedback but community as well.
Anyone wanting to finance such a project, hit me up at ReidMyMindRadio@gmail.com.

Now that we heard from someone quite familiar with captions, do you think that’s the bar we as advocates for audio description should be striving to reach?

Think about that while I bring on our next guests

— Music begins, a bright mid-tempo beat!
Eric
Hi, my name is Eric Wickstrom. I am the director of audio description for international digital center. pronouns are he him?

Rhys
Hi, my name is Rhys Lloyd. I’m the studio head for Descriptive Video Works. My pronouns are he him.

TR:
When anyone asks me for examples of quality audio description tracks for networks and streaming platforms, IDC and DVW are the two I tell people to check out.

Are their others? Yes. But they don’t check off the boxes that these two do.
Let’s keep it real! IDC helped kick off the inclusion and hiring of Blind narrators. Their not the first, but to my knowledge they’ve done the most. If I’m wrong, please educate me – ReidMyMindRadio@gmail.com.

DVW also is doing the same and employs Blind QC.

I asked each of them to bring three to five issues that most threaten the future of AD and some thoughts as to what we can do about them.

That’s next in part two of this episode of Flipping the Script on Audio Description I’m calling;
“NO ONE WILL SAVE US”

Big shout out to my guest, Michael McNeely , for shedding a little light on captions.

Make sure you tune back in for part two of this conversation.
The best way to do that;
Follow or subscribe to Reid My Mind Radio wherever you get podcasts.
There’s transcripts and more over at ReidMyMind.com.
Remember, you got to spell it!
That’s 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!

Hide the transcript

TR:
What’s up Reid My Mind Radio family?
Can you believe the summer is almost done?

Usually that would also mean we’d be wrapping up the Flipping the Script season. Not this year.

Today, I’m bringing you the final FTS bonus episode.
As a reminder, each of the bonus conversations were used in the What We See episode where
I linked discussions about visual hallucinations, trust and Blind participation in audio description. Hopefully you checked that out and you dug where I’m coming from.
I decided to share these semi raw conversations because the three gentlemen Carmen Papalia, Collin van Uchelen and Andrew Slater had lots of good information and ideas to offer.
Semi raw because I did just a bit of cooking or editing to make it a bit easier to digest.
But these episodes aren’t representative of what we usually do here at Reid My Mind Radio.
Meaning, there’s no narration or analysis, sound design or music.

Today’s episode features Andrew Slater.

By the way, shout out to Andrew who was recently featured in a Washington Post article following his
public request on Tick Tock for audio description of the Alabama brawl.
The result proves to be some awesome examples of creative description.

I’ll link you to the article over at this episode’s blog post at ReidMyMind.com.

Since we’re in the middle of celebrating 50 years of Hip Hop, I’ll drop another little reference for those who know…

Now, Reid My Mind Radio is this podcast’s name
[]
Andrew Slater is his…
I’m T.Reid It’s like that and that’s the way it is!

Reid My Mind Radio Intro

Andrew 00:00
My name is Andy Slater. I am a sound designer, composer and accessibility person professionally. My pronouns are he him, I’m a middle aged white man with dirty blonde hair, a full red beard with some gray. Right now I’m wearing a red t shirt with white lettering that says I am not Daredevil. One of my favorite personal traits is that my left eye turns inward. So I see double a lot and I’ve got big bushy wizard eyebrows.

TR in Conversation with Andrew: 00:32
Two things. Number one, love the t shirt. Just letting everybody know. Do they stop you and ask you, “Excuse me?”

Andrew 00:40
Just point to the shirt.

TR in Conversation with Andrew: 00:45
Laughs….

So Sandy blonde hair and red beard? I’ve never heard that.

Andrew 00:49
Yeah, yeah, it’s uh, I mean, when I was a kid, I was strawberry blonde, I believe was the term which is kind of a reddish blonde, and then my hair got more brown, but I’m a ginger from like, the ears down. You got the salt and pepper beard. But mine’s like, salt and cayenne.

TR in Conversation with Andrew: 01:11
Laughs…

You know, I don’t get too much into this. But briefly, tell me a little bit about your relationship with disability,

Andrew 01:16
oh, gosh, well, my relationship with disability, I like a lot of visually impaired people that maybe their sight has, has gone downhill gradually took a while to not necessarily, I don’t know, admit or accept my disability, but to realize that I was disabled. You know, I realized when I was a kid, I couldn’t see. But I didn’t really know what any of that meant, you know, it was the 80s. Right? It kind of wasn’t until I was a full time cane user, which was about 2009 When I started just never leaving the house without it. And kind of fighting with that stigma, having the white cane and people messing with me telling me that I’m not blind or, you know, faking it and that kind of thing. And realizing that I’m not going to be able to avoid or ignore this. So I started becoming more of an advocate for myself. And still not even necessarily knowing anything about people with other disabilities other than blindness in my own relationship to the lived experience of other people that I’ve met. And I’d say like, about 2014 15, or something. I met some people local to Chicago, that are involved in Bodies of Work, which is like a disability arts culture sort of organization that does a lot of arts events, and, you know, some support, and they work with through the University of Illinois Chicago Disability Center there. And I met somebody named Carrie Sandor and Sandy Yee, who are both disabled scholars, and artists and stuff. And they were like, You got to come and meet some of our folks. And so I met a whole bunch of really cool, sort of rowdy radical disabled people and was like, these are my people, I can swear and drink and be just myself and say, you know, screw this and screw this person and all that other kind of stuff and just learned about ableism and then the, the aesthetics behind being a Crip. And that sort of thing, which, you know, made me realize, you know, what, man, Andy, you are who you are, just keep doing that. Since then, I’ve been a loudmouth for myself and others really big on access for everybody. I collaborate a lot with people with disabilities different than mine. And then, of course, you know, other blind visually impaired folks. So now, I, you know, could have said 20 something years ago, I’m 48. Now, maybe yeah, 20 maybe even earlier, I would have been praying for a cure every day. And now it’s like, I’ll wait. I’m happy with my life. I have a career doing what I do. And it’s a lot of it is based around my lived experience. My own disability knowledge and being cured isn’t as important as it once was.

TR in Conversation with Andrew: 04:13
Awesome. That was a great answer. You know, every time I hear someone who has the, what I’m gonna call now the luxury of being around a Disability Cultural Center. Yeah, I’m just like, always fascinated, man, because I’ve never been in that space. Like physically. I’m involved with disability culture online, but it’s like, wow, that just sounds fantastic to be able to just be in that space physically.

Andrew 04:41
Chicago’s got a we have a bunch of different resources in groups. I mean, even like, the Chicago the Mayor’s Office of People with disabilities have some real radical cool people in they’re not just like, people that pity who their clients are and like the mayor’s are office isn’t like that. And there’s also a place called Access Living, which is not at all like that either Bodies of Work and like the Chicago disability art scene here is just, it’s just so dope. Everybody here is so supportive, not one person would have, like a gallery show or a performance or anything, like a reading or something that wasn’t accessible. Nobody does an art show that doesn’t have image description. Nobody does a performance or theater that doesn’t have audio description, or ASL or CART. Often, there’s like sensory chill rooms. You know, we all got each other’s back. And I think it has to do with a lot of people that like, we’re involved in that sort of like, disability rights and advocacy in art and stuff, like in the 70s and 80s. But you got to city, not up in the mountains. Yeah, got a lot more people. Were going to places much more mobile. But yeah, these kinds of spaces, you know, I’ve run across them, like, even internationally. And usually, it’s like, you got the cool people in there. You go into like, a blindness convention. It’s cool. But the biggest problem is that there’s an agenda and there’s no chill time. These spaces are, are wonderful. And even, like, virtually, but like, having that personal local connection is like, this is real important. Yeah. And it’s total, it’s a total privilege. You’re right, total privilege.

TR in Conversation with Andrew: 06:23
Tell me a little bit about your work, how you came to work with sound and, and everything that you do.

Andrew 06:28
I was like, 15, or 16, right. And I got a Tascam, four to seven, like multitrack cassette recorder. And I was in this really horrible industrial punk band. I was like singing and my parents wanted to buy me an instrument, for whatever reason. And I was like, I want this tape deck. And I got that and I started messing around with like, doing sound collage stuff and more like what I found out to be like, you know, music con Cret, sort of like, using a bunch of like, found and appropriated sounds I took from like, sound effects records and audio books and TV, I used to draw and paint a lot when I was a kid. And when my, my vision in high school started getting to the point where I could no longer do what I wanted to do, I got discouraged, but then I realized, like, oh, I can just make some weird sound art stuff, you know, without really known what that was. And so I started doing that. Eventually, it was time for me to get up out of Milford, Connecticut and move away and go to college. And so I moved to Chicago to go to the school, the Art Institute, because I had a sound department and learned all about audio, more so on the creative side than the vocational side at the time, you know, like using a lot of like analog synthesizers, and early samplers and learning on reel to reels and going through like a dat all the way up to Pro Tools. And then you know, a whole bunch of other stuff. I realized now that my work was, you know, informed by my visual impairment but not about it. And I dropped out of college and I went back like a decade later to get that degree, and kind of picked up where I left off, but started thinking more about like my disability because my vision had gotten I guess worse. It started also thinking more vocationally than creative, like paying more attention on how to maybe go and record a band in a way that was more organized and more professional than whatever I was doing with my dirty four track and some basement, right. And I started getting more into sound design for like filming videos, collaborating with some other, you know, with some artists, friends of mine and doing stuff, recording a band that I’m in, started experimenting with, like, you know, what, how do you make a psychedelic funk band sound the way that it should? By yourself without really knowing what the hell you’re doing? And I figured that out, right? And that was like, oh, yeah, music is cool. As long as I have like, complete control over it. At that time, I was just doing what I wanted to do. And then having a really hard time navigating Pro Tools, which I use, you know, zooming in a lot magnified, and never even like, tried to use it with the screen reader because I wasn’t even trained in that. And eventually I did. I got training from this program called IC music on how to use Pro Tools with VoiceOver. And my workflow was like super fast, I get all this stuff done. And I started realizing that I no longer have headaches from zooming in all the time. I can just get all this stuff done so quickly and started thinking you know what, I really need to consider this more as a career and not just weird Andy stuff. I started doing a lot of field recordings with my cane, going from one place to the next using these sounds, activate acoustic spaces and just do these kinds of weird collage sort of things composed from these sources and then realizing that I don’t know anybody else that does this. You know, I don’t know any other blind folks that use their cane sort of like as a sound maker or an instrument or even just to kind of end up using like the acoustic space at As an instrument itself, and since I realized that Shure microphones makes an app that’s accessible on iOS, it’s when I started doing field recordings again, you know, all that digital stuff, like all the early zooms, and everything like that, where everything was digital, and I could no longer see that little box and menu dive and stuff. You know, I was kind of like, you know what, I got the Shure MV88 plugged in into the phone, walked all over the world with it and made these recordings and thought I was, you know, I was happy doing that. I’m doing really, you know, crappy jobs, but getting social security at the same time, then I kind of found out about like, Ambisonics, unlike immersive spatial audio, stuff for like VR, and extended reality and all that other stuff, I decided I wanted to go and get a degree at Northwestern. And so I went and did that in the sound arts and industries school with a focus on the sort of like immersive, more media arts sort of stuff that is a medium itself that’s still growing and progressing. And then wanting to work in that finding out all of these like access barriers, finding workarounds and such. But then realizing that it would be really cool if I learned this and then got in the industry. And as all this tech and all these, like, you know, this Metaverse or whatever they want to call it. Now, as that grows, I want you to like want access to kind of grow parallel with it. So in my current job, my job job not like my personal private commissions and stuff, I work for a company called fair worlds. And I do you know, sound design stuff, whether it’s from like, user interface, like UI, like bleep blurb, sort of dunk, dunk kind of things, like you press the button, and it makes that sound kind of thing to compose and music to sound effects to you. VoiceOver and dialogue, editing and all this stuff for our apps and videos and whatever the projects may be. And then also working a lot on like spatial audio and applying these to the apps where if it’s gameplay, and the audio spatialized, it’s kind of easier for a blind or visually impaired person to play these games based on where the sound is, you know, all those kinds of things, being able to work within the industry where we have clients, and we have some of the companies that we work with, using their software, beta testing their software and stuff, having the ear of those people in those companies on how important access is like, you know, you could make your thing accessible. And all you got to do is this, having those conversations and some sometimes they go somewhere, sometimes we just got to show them like No, no, here, you know, it’s really, really kind of easy, you just really need to know what you’re talking about. And trying to get in there as a as a creator. And then also, as a consumer of like, this is accessible tech and these sort of things being both, like you know, trying to play video games, but then also trying to make the video games kind of gives me a this perspective that not a whole lot of other people have. But then some of the other stuff I do is like for my own art commissions, I’ll do stuff for performance and gallery, I exhibit a lot. And then I’m also doing like accessibility audits for some websites and museums and stuff. And then I’ll also work on creating like access content, like image description and audio description for like film and museums and, and that kind of thing. So it’s like, that is also still a big part of like my art practice. My art is now like, becoming access for somebody else’s project, but then also also for other people’s products. Our last project, this app that’s launching next week called Space Time adventure towards like, it’s specific to the Seattle Center. It’s about like the 1962 World’s Fair. My sound designs are all vintage retro sci fi like using the Theremin and then all these robot sounds and all this like really fun sort of stuff, and, you know, cool jazz and surf music and stuff, all the stuff that I used to do in the 90s at school or even as a kid. I’m now getting paid, paid to do this. I was always a kid was like, making these sounds just because, you know, undiagnosed ADHD and such. But now I get paid to do that. It’s really important. And it’s really cool. And it’s like, Man, how did I do this? Oh, a lot of it has to do the fact that I decided to go to grad school against my, well, at the time, I was like, this is going to cost an arm and leg. I don’t know. It’s gonna be really bad. This is going to break me. But I went and you know, the place I work for now is where I had my internship in 2020. So I’ve been there for like three years and the house is wonderful. And I wish that more blind folks have these kinds of opportunities and I think they’re there I think we just need to get that tech right to where it is and then get people that like education and training like like it I see music. I learned Reaper too all the key commands conflict with my Pro Tools. My memory, so I just like, I know how Reaper works. But you know, you know, I chose Pro Tools, but, you know, it’s like the Reaper community is huge. And and these are things that, you know, I think if we you know, we get more and more these sorts of tools into blind people’s hands and, you know, get them to be the creators because you know, I mean, I don’t want to say we’re the experts in sound, but I would trust a blind person with sound more than I would a sighted person. And I’m biased, but I truly believe that. So I’d love to see more people get these kinds of jobs. That way, I don’t have to take everything that’s offered to me, because I’m afraid it’ll never get done. If I don’t

TR in Conversation with Andrew: 15:44
tell me about your your first experience with audio description first, as a consumer.

Andrew 15:49
You know, I was thinking about that the other day, like, what was the first film that I ever saw in the theater, and I don’t remember now, but I do remember my first experience was, like Christmas time, I want to say maybe 20 years ago, maybe even longer than that. The Foundation Fighting Blindness used to show It’s A Wonderful Life with open audio description, on TV, whatever channel and I always thought that was wild, I thought that was great. At the time, I could see well enough where I didn’t think that I needed the audio description, but I paid a lot of attention to it. It was an old movie where the sound was at this big Boombastic. Michael Bay mess, the audio description didn’t really mess with the sound of the film, and it kind of like elevated over but still mixed in kind of thing. And I really took to that. And I think that one of the first films I saw in the theater had to have been, I want to say 14 years ago, whatever it may have been, the movie theater made me give them like my ID or something like that. And I was like, Oh, this is cool. I’m digging this in those early years. And I mean, I guess still to this day, you still got to always double check with the theater, like, does this thing work? Do you have the right one, give me two Behling the listening experience hasn’t really changed much other than I think the quality of the audio descriptions better, I still have to cover an ear sometimes to in order to like hear the description. But I can go and do that stuff with my family. You know, um, it might have been something like, Captain America movie or something like that. That’s why I was loving going into the Marvel and then Disney movies and stuff like that, because it’s like, I know that their audio descriptions on point, like Pixar, they really kind of champion that stuff early on the stuffs on point. And it’s always gonna be there. So okay, brand loyalty to, you know, corporate overlords. There we go. It’s like I love apple and Disney and Marvel and such because I feel invited and I can use it. And then, you know, I kind of got into these opportunities with working with other artists are navigating, like, Hey, Andy, how do I how do I do this? For my own work? But the time I didn’t really know how, what if there was a book of what to do and what not to do. So I just started being like, I don’t know, this is art, let’s be weird. You know, you can be subjective man, like, make it another art piece and play a parallel or whatever, keep experimenting, the ACB audio description project, really great examples there, love that database and stuff. But I’ve also come across people citing that as the end all be all, you know, and it’s like, yeah, it’s to the point, it just totally depends on what the project is. My favorite experiences is watching like, The Video Game Awards, or the Game Awards, or whatever that thing was called, like, two years ago. And they had to describe stream, which was live and the woman reading it or narrating it was just having a blast. Here’s the animation of Mario and like, Mario is on a turtle. Oh, and then laser, you know, like that kind of stuff. But then they had like a category for most accessible game. And I think that’s when the last of us to like pretty much won everything, but the fact that they have that, that was kind of an audio description joy for me. You know, that was like the next level of oh my god, audio descriptions, you know, the movies. And then here’s the game that’s accessible. It’s a little too damn hard. And I got I’m like, you know, read a book on how to play it. But here’s the Game Awards, taking this thing seriously. And, you know, and then trying to get gamer culture involved in it was like, you know, a real cool step.

TR in Conversation with Andrew: 19:38
You mentioned that you were soda invited to start thinking about it from the perspective of a creator creating audio description. Can you talk a little bit about the roles that you fill in the process of creating ad?

Andrew 19:52
My roles originally just started kind of as a collaborator or an advisor on projects. I wasn’t comfortable With maybe recording my voice, I’d work with other people to write stuff down. Since my vision is impaired, sometimes it’s a boundary. Sometimes it’s not. There’s a guy locally named Victor Cole, who does a lot of like audio descriptions for local performances and like award ceremonies and all these other cool stuff that the Chicago disabled arts community employ him to do that, started talking to him about his process, and like picking up on that, and then realizing that my role as a blind person to create this is probably going to be different than how Victor approaches it. Which is cool, because that means you have like more voices and more opportunities to give different perspectives of stuff. And so there’s some like, performance artists and dancers and choreographers and stuff locally that were like, you know, we want to do this live. But we also want to, like pre record some stuff, mess with the stereo sound for AD and kind of move the AD around in like an open audio description sort of situation, which I think is cool, because I wish I could control where I wanted to place the ad when I’m listening to it right in the stereo field, and then doing sound design within the AD. So kind of going from that direction of making sure that the people that I work with understand that access from the get go is the way to do it, especially when you’re coming around with like audio description, right? It’s like, think about the amount of space that you can take up and how much you can maybe need to cram in there with the ad, as long as it’s either on your mind or even just part of the script or something like that, then it’ll just be so much easier to complete, as opposed to like, oh, no, we got an audio describe this thing. Now, here, you got three days kind of thing. And I’ve been in those situations. But I’ve also been in situations where I’ve had a very long time to kind of digest and work and stuff. So first started off as me being like an advisor, and then you know, like a collaborator and then helping produce an edit, and mix AD tracks, maybe early as like 2017 or something like that I started, you know, doing this kind of stuff. But at the end of last year, I got the opportunity to write and record the audio description for feature. And that was a film called the Tuba Thieves. By Allison Oh, Daniel, who was a deaf hard hearing director. And that thing debuted at Sundance. And so that was really cool. A great experience, because 95% of the film, the dialogue is ASL. So like my wife, and I, my wife is autistic, and I’m visually impaired. And we wrote the AD and I narrated it, I was able to hire these three disabled voice actors to read basically the subtitles in the captions, and kind of, you know, bring them into this where they had done some some of this work on before. And they’re all actors and performers and stuff. But never for something that was essentially, I don’t know, everybody is disabled on this on this thing. So it’s like, yeah, you know, we brought, you know, we’re, we’re all showing up as we as we should. And so what was cool about this film is that this film is, like, the sound itself was so incredibly descriptive, and all very referential, and all sounds that I think, you know, so many of us would, would get that, you know, the, the actual audio description that I read and recorded, was real minimal. And there’s a lot of silence in the film. So I kind of shut up, you know, it was like, it’s like, oh, I have to make these decisions. Now. 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 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, you know, make a huge mess out of it. And I’m happy with how how it worked out. It was really cool. Knowing that as it travels around on tour, it’s playing in theaters that offer audio description, and all the promotional stuff that I see for it says, you know, audio description is also available and also has open captions. So it’s really this kind of like, cool thing where it’s like, hey, here it is. We’re all here, right? People asked me if I’ll work on their films, and it’s like, it’s so time consuming, as you may know, especially if you’re asked to do everything, the literacy of this sort of like audio description, these other access points. A lot of the times people come to me not knowing enough, and it’s like, do we want to sit here and have a four hour meeting of me explaining what it is that you need to do? Or do you want me to do at all because you still don’t understand what it is I need to do. And then when it comes to like, compensation, it gets kind of hairy. You know, but I mean, there are a lot of people that really want this filming. Viewers, especially disabled filmmakers, but for whatever reason people are afraid to do it. It’s funny when I see, you know, other disabled artists and filmmakers and stuff, afraid to do this, because they don’t want to mess it up. It’s like, look, I understand that, but we have the same, you know, lived experiences on a lot of situations, right? And just think about it like that. It’s like, experiment with it. It’s it’s common sense. I honestly think just, you just got to watch like, you know, a handful of different, you know, films with audio description to really get what you want to do. I don’t want to have to explain it a million different times. I know I sound crabby, like crabby old man over it. But it’s time consuming. And, you know, you want me as a consultant or an artist, or what, because there’s a different pay rate. Yeah. You know, you know, and it’s very true, absolutely. Sound like capitalist about it. But you know, it is kind of
TR in Conversation with Andrew: 26:08
it’s your time.

Andrew:
It’s my time,

TR in Conversation with Andrew: 26:08
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 26:17
Yeah.

TR in Conversation with Andrew: 26:08
Okay. Cool.

Andrew:Yeah, yeah, we watched the movie. And then we kind of went, we didn’t have a script for this. So we kind of, we watched it, we took notes, you know, put it on the timecode. And that sort of thing. Yeah. And I don’t know if this is a process that other people do. But you know, we just got, we sat down here. And you know, 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 movie is slow, we take notes of what’s on screen, we’d go off some of the notes that the producer gave us, I would just kind of reword it, you know, or edit it. So it was more interesting to kind of match the energy, especially the energy of these captions, these captions were out of control, awesome, and weird and abstract at time, I didn’t want to be just normal sort of insights as interpretations as to what was going on on screen. But then also using like, my own artifacts of my vision, also where it’s like, I got tunnel vision. So I can see like, what’s up on the right side of the screen. I could focus on some weird thing here. And then Tressa would point out what else was going on? You know, and it’s a cool film it has people talking about when Prince and the revolution played Gallaudet University to have like a whole hundreds of Deaf folks.
TR in Conversation with Andrew: 26:08
Oh, wow.

Andrew:
Yeah. And there’s like, there’s these photos, because there was no film. You know, nothing but like photos of it, being able to describe these photos. Like this one, I think it’s black and white. I don’t know, you know, it’s from like, it’s from the Purple Reign tour. On the left is the band rocking out. And you can see that Prince has his like white Stratocaster up high and he’s just jamming and you know, he’s wearing purple even though it’s black and white. And then to the right is like, it’s like hundreds of deaf people all signing I love you, you know, with the with the index, the pinky in the thumb up. And like, being able to see that spend time just like even zooming in and like pausing the film and then zooming in. Like that photo and another one of prints where he’s, you know, given I love you sign with this, stand next to this kid, this huge grin on Prince’s face where you just like, Man, I got like, all emotional How do I describe this, because this is just beautiful. And it’s like a still photo on screen for five seconds. And that’s something that I realized, like, this is really, this is got to be really, really tough for people. When you have like this wonderful photo that you want to spend a lot of attention on that you got, like, five seconds. Yeah.
TR in Conversation with Andrew: 28:58
You know what’s crazy? I have a Purple Rain shirt on right now. (Laughs)

Andrew 29:03
Laughing…

That’s not crazy. That makes a lot of sense, you know, it’s like, of course…

I don’t really know the process of people, you know, like down the line where you have, you know, a sighted person, kind of write it and take notes. And then I know blind folks like Robert Kingett, who like takes those notes and kind of writes it. And then somebody else like reads that or edits, like whatever that chain of events is, I just kind of was doing it intuitively thinking like, you know, this works. This works for this application of a weird art movie. And that’s the thing is a weird art movie. And then you have these other elements. It’s like, I have to be serious because this is some serious shit. And I don’t know how people that do that sort of thing more often than I do professionally. Like, I don’t know, I don’t know how that works. You know, I don’t know if the studio is like, Nah, don’t pay attention to that. But you need to pay attention to this or if people are just given you know, blank check to go and create it however they want.

TR in Conversation with Andrew: 29:58
No, yeah. I think that first I mean, there’s a combination, right? There’s the the decisions that they’re making, and it’s following the plot. And but it’s somebody’s it’s somebody’s decision. I think what changes is that is the approach, right? So you were mindful of the, the tone of the film, right? And following the aesthetic of the film and all of that. And I don’t think, especially if we talk about mainstream aging, right, it’s just about the film. And I’m not saying anything bad. I mean, there’s, you know, there’s, there’s levels to this, right, the good ones are, they’re putting in some time and figuring out what the plot is. But I think some of them that I’ve spoken to, at least, you know, really do similar to you wanting to describe that Prince pitcher is often those times where they’re like, Man, I wanted to spend a little more time on this, but yeah, you know, it’s sort of a side thing, and we just can’t do it. Yeah.

Andrew 30:48
And, you know, I mean, when you got a broader, you know, mainstream audience, you can’t get super weird, right? I mean, you can, but one of my favorite audio description moments is Deadpool movie, which has a character Blind Al. She’s not played by a blind person. She’s played by Leslie Uggams, who is a wonderful actor. So Deadpool, so he’s a jerk. And it’s a really raunchy film. And so he goes to Blind Als house, she’s talking and while she’s talking and not clearly not seeing him, he lists up a trapdoor on the floor. And there’s three items in there. One is a, like a pill bottle, and other is a bag of coke. And another is a gun, Deadpool opens up the hatch, and there’s a, you know, a bag that says dead pulls cocaine, and then there’s a gun. And then there’s a pill bottle that says “The cure for blindness”, he takes the gun and the coke out shuts the door, and I’m laughing my ass off and the film, and my wife did not know that. That’s what you know that that pill bottle said, the Z sort of things where it’s like, I’m glad for the comedy that that was, you know, that was that was put in there, right? And that’s when I realized like, oh, not everybody gets these details. Yeah, there’s another show. My flag means death, which is a funny movie, or a funny show about, you know, pirates and stuff. There’s a character called Calico Jack. And there’s a seagull named illite that they call Olivia. And he’s like, floating away in the water. And he’s talking to Olivia, and he says something stupid. And then, you know, the audio description, says Olivia. Olivia gives him the side eye as like that seagulls not giving them the side eye. But that was a great use of, you know, nailing down the tone of that thing. And I want I want more of that.

TR in Conversation with Andrew: 32:34
When you creating AD and you work with a filmmaker, what role does trust play? In your process? I think of this as with AD, like, as blind people, we’re forced, in a way, you know, we have to trust, we have to trust that this Narrator This, this writer is giving us the information that that we need. As blind people, we trust that our technology is giving us that information that we need, right? Yeah, but I feel like as creators, especially around audio description, we’re not given trust. I don’t feel like it overall, we’re questioned when it comes to blind folks doing AD, we’re very much questioned. We see that right now. There was this whole certification, this whole thing about blind writers like figuring out if we are allowed to do this. I mean, that’s the way I’m gonna interpret it. Yeah.

Andrew 33:25
Let’s say like, in my situation, working on the Tuba Thieves with with my wife, right? We were there was no NDA, right? We actually got complete trust. And I’ll talk about that a little bit. But it’s like, say you gotta sign an NDA. People are like, Why don’t want this, you know, this other person that’s going to help you this like sighted person to help you work on this. We don’t want them to leak these secrets, either. It’s like, well have them sign an NDA. Have somebody within your studio work with the blind writer? It’s just another case of like, they don’t trust us to do something for us. That’s wack, you know. And it’s like, they don’t trust us to the point where you’re going to be underbid to somebody that knows how to type, you know, like somebody that can do like the the text to speech thing. Or somebody who’s a voiceover artists or actor or whatever, and gets all these commercial gigs and stuff and just kind of like, oh, yeah, no, I can do I can totally do right audio description. It’s just what’s on the screen, with no training, you know, it’s like you, you still need to know how to address this. The fact that this medium of the industry isn’t yet, I guess, run by us, the people I know involved are, you know, it’s, it’s probably just, you know, it’s just a different side of things because I know, I know them all from being blind. And they, you know, they’re not just like, here’s a gift. It’s like, Hey, I made this in community and collaboration with blind people. If I’m sighted there were blind people involved in this where A lot of the times he feels like it’s, 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. I don’t like that attitude. I feel like people don’t trust us with anything. When people don’t trust that I can cross the street. People are like, don’t even trust that I can tie my shoes. You know? Like, like, wait a minute, let me ask you sighted people. 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. But that’s, that’s the answer people give me. Um, but you know, it’s like, so what was cool with working with 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 creative and not some rope, sort of boring ass thing. And so like we got that trust, because the person who hired us was cool. I don’t think I could say that somebody from Paramount, or whatever would sit down, meet me and be like, yeah, no, you know what you’re doing. I trust that you’ll get it done. Because studio people are used to given notes, right? And they want to have control over everything. And it’s just like, man, just just let us do this. We’ll get it done. 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 a sellout move. Or just cynical, like, you know, I was under the gun, I had to get this done in a day. And it’s like, yeah, well, you could also say, No, you need more than a day, a job as a job. But it’s also kind of like, we all have our convictions. And all the people I know that work in AD, just like, will keep that in mind. When you’re doing work, like who comes to you who in like the studio chain, or the production chain hires the audio describers,

TR in Conversation with Andrew: 37:06
there’s usually an AD director, usually, that will probably be the title. That’s the person who’s sort of making the decisions. They’re serving as a project manager at that point. And so they’re assigning it to a writer, they’re assigning it to a narrator, etc., etc. For blind narrators, it’s still that level of trust, because not everybody wants to work with blind narrators. And some of them use the excuse that they have specific software that they use, for example, where maybe you have to dial in and whether it be to download the script, or whether it be to use the recording something I think you can record, right there even remotely or something like that. But whatever they say the software isn’t accessible. And so you know, we know that’s not the only way to get something done, right? Because these other places where you don’t use a software, you email me a script, I send you a link to the file that I just produced for you. It’s not a big deal. That’s excuses.

Andrew 38:03
Sighted people are so narrow minded, where it’s like, it’s like, Yo, if this was a disabled person, they’d be like, Yo, you know how to adapt, you know, that workaround? Right? It’s like, I know, you can’t see that street sign up there. But you know, how to get around whatever’s going on here. And maybe it’ll take you next day, maybe you’ll get it done sooner than any other, you know, and those folks in those positions don’t have don’t understand those aesthetics. Right. They don’t understand that way life. Yeah. And that’s just that just kind of hurts.

TR in Conversation with Andrew: 38:34
Can you talk about, like, your thoughts about sort of experiencing the world, non visually, but and when I say non visually, I’m not coming from the place where I’m trying not to use the word blind or anything like that.

Andrew:
Right. Right. Right. Right.
TR in Conversation with Andrew: 38:34
Right. I’m coming from that place where specifically, you’re not censoring vision. So for example, like the piece that you did, where you specifically had the image description, and, and there was no image at all. That was like not censoring their vision.
Andrew:
Right. Right.
TR in Conversation with Andrew: 38:34
That was just totally saying, This is how I experienced it. This is how you’re gonna experience it.

Andrew 39:13
Oh, yeah, yeah, exactly. Yeah. I mean, it’s just kind of like, look, if I tell you that this is what’s going on, this is what’s going on. That piece is like I wrote down a description for a painting that doesn’t exist, it was just something that was in my head, a lot of blind people may not be able to, you know, I talk about color and stuff like that. But you know, some folks may not have reference points to it, and that sort of thing. But it’s like that kind of work is meant for a sighted audience. Talking in their terms, using color is basically like an access move. So that sighted people can be engaged in the image description for you know, the invisible ink, they can see like, yeah, you can you can kind of have fun and do weird stuff when you’re describing things. So it’s totally like visually centered for that. But then when I do this Questions of some of my sound work, it’s never visual. But did this recording what I did texture, smell, touch, vibration, you know, an emotional sort of stuff with a lot of metaphor, because, you know, that’s how you got talked about sound some time, but I still think visually sometimes and describe things with sight in mind and image in mind. But that’s mostly just for communication. We’ve all trained ourselves to, you know, use sound for you know, navigating, and, you know, cooking and you know, whatever our daily life is, I rely on and trust my ears, obviously, more so than I do my vision. I have all these like weird, like artifacts and like flashes and like hallucinations and stuff like that. I don’t care anymore. I used to care that I bump into stuff, I’ll go to the bar that I know where everybody knows me, and I’ll know that they’ll tap me on the shoulder or say my name when it’s time to order, right? And if I go someplace, and I’m ignored, then, you know, I’m ignored. I’ll do what I what I can, but it’s like, I try not to rely on my vision. Even though sometimes I do have my eyes open. And I might be seeing something, but it doesn’t always process right. So it gets kind of like psychedelic and weird or these Oh, there’s lights in that corner of the room. But I kind of see a blob, I kind of see that still doesn’t help me with the perception of where that corner is. Or if that’s a person or a Christmas tree or, you know, can of dog food. I go Mr. Magoo style kind of thing and just like bumble around sometimes and figure it out, knowing that this is normal for me, a sighted person might be, you know, watching me like what is this crazy blind person doing? They’re going to break everything. I better make sure that they don’t knock something over. When in reality, it’s I’m pretty nimble, like I’m a big dude. But I’m pretty nimble. Like the only time I bump into stuff is that my house because I’m overconfident. Like, listen to my phone, I’m cracking open soda, and then also telling the Echo to play, you know, Run DMC, and then I’ll walk into the wall. I hate feeling like I’m on display. Yeah, you know, to the public, but at the same time, it’s like if I hid, if I didn’t do anything, I’d have no joy in life. You know, like, there’s no shame in the cane. No shame in me, you know, doing what I got to if I come off with having a chip on my shoulder. That’s not a chip on my shoulder. That’s just my reaction to ableism

TR in Conversation with Andrew: 42:32
when you were describing, like how this painting didn’t exist, sort of reminds me of talking about these hallucinations, so not necessarily that blob well that could be the Christmas tree or the really big can of dog food by the way. (Laughing)

Andrew 42:46
Real big, like Costco like

TR in Conversation with Andrew: 42:51
you experience hallucinations as well. Talk to me about what you see.

Andrew 42:55
Okay, and I’m gonna preface this with yesterday was 4 20Oh, and I live I live in a state where it’s legal. Carmen visited Chicago a couple of weeks ago and he gave me these THC capsules that he made with a strain called LSD and he was he was like this he’s like this to me inhibits some of the hallucinations I have a times when they may not be happening because you know like we both have RP and sometimes you know our eyes aren’t doing all of this like right now my eyes are doing some things so the scribe that he gave me this weed these edibles because he’s working on he’s working on some stuff where he’s trying to to create a strain that kind of emulates the hallucinations that he gets him and his brother’s brother also has RP and went to band practice and you know had one of these you know, Carmen edibles as little capsules. And it cleared my vision up. issues I was having. Yeah, I was like, Oh, well, okay. It gave me like this. This like kind of awareness of the space of the room and sometimes like feels like my field of vision is widened. And I’m like really confident or like get up like, oh, I don’t have my cane. But I’m outside now what happened right? I don’t necessarily like taking edibles because they will totally obliterate what I am seeing and not in a fun way. stuff. Like when I’m exposed to a lot of light, you know, like it’s my pupils are dilated. So get the sort of a lot of after image you walk into like a camera flash right for me that will stick around forever, like at the strobes, right? These these sort of strobe flash are sort of things and then everything is kind of like a I’ll say like an electric Deep Purple, or some weird kind of green like neon but kinda like the echo from Ghostbusters and stuff and I’ll get these other things that I’ve seen like my whole life. aren’t that they’re, they’re kind of gray, purple, green, whatever this weird thing that’s like the shape of like a Cheeto Puff like a sea kind of thing. And they move from one eye to the next. And when I close my eyes, I still see them. And it’s kind of like, how’s it going through both eyes is this is something where my brain is shooting off, you know, like, I don’t know, weird electric shocks into my eyes, I have no idea. I don’t consider them like interruptive anymore as I did when I was a kid. When I was a kid, I was really, really, really night blind right now it’s kind of flipped, where I’m totally photophobia like light. I hate it. I hate the bright light and like a gremlin or something like, when I was a kid, I think it’s something where your color preceptors or your light preceptors can’t do what they’re doing. So I would get these weird visions that kind of look like fireworks or something like that, right? Like when you rub your eyes real hard. People experience those kind of colors or like flashes or fireworks sort of explosive sort of like weird shapes and stuff. Those just kind of pop up for me, and it’s cool. But if I’m trying to do something, where I am needing to use my vision, this just misses me off. They do kind of become a hindrance. And I know that Carmen invites them. He likes them. But for me, sometimes it’s a reminder of, oh, well, you know, that thing you were gonna do? Now you’re gonna be distracted. And you might as well not do it, because it’s totally distracting. But sometimes they’re cool. I like doing mushrooms. Do those every once in a while and I do a lot of writing. I’ve done a lot of like sound descriptive work, writing about what I hear in my own work. And then some other artists have commissioned me. And with that, it’s like, have these different hallucinations. I don’t know if they’re different. I don’t know if it’s something where I’m having the same kind of effects that I always have. But psychedelics start to make the move and take shape and dance around and all this kind of stuff and, and that’s cool. You’re not a narc, right?

TR in Conversation with Andrew: 38:34
Laughs….

Andrew:
If you’re a narc, you got to tell me like, yeah, I find it really, really cool. And it really kind of like makes it so like, oh, I can I can actually enjoy this. Yeah. So these are just like I said, like artifacts of like my retina probably imploding. But sometimes back to the giant dog food that’s like my brain trying to process what I’m looking at. But sometimes they’ll just be stuff that I think I see that isn’t there. And that’s kind of new, like within the probably the past 10 years. I don’t know if it’s the Charles Bonnett stuff. I don’t know if it’s shadow people. I don’t know if it’s like there’s a tear in that space time, whatever. But sometimes there’s stuff that’s there. And sometimes it’s not. I’m into it, because I don’t know what it is. Yeah,

TR in Conversation with Andrew: 47:56
so you question, do you have to question a lot or you know when, ok, I need to question this. Well, obviously a big ol’ can of dog food, like that you’re gonna (laughing) know. (Laughs….)

Andrew 48:05
Yeah, I’m just gonna put that in my bag to go home with it. Like, this is my Yes. Sometimes. I’m like, if I’m by myself. A lot of times I won’t question it. And then you know, it’s like, like, let’s say it’s a street at night and under a streetlamp. There’s something whether it’s like looks like it might be a box, or person and it’s not moving. But I’ll just assume, well, it’s supposed to be there, whatever. Maybe that’s my neighbor. And then I’ll like walk five, five feet up. And yo, that thing isn’t there anymore? Was my brain trying to say that it was there when there really wasn’t, you know, or am I being hunted? You read all the Oliver Sacks in the world, and he’ll explain it as plain as possible. But I still don’t know if it’s my brain or if it’s my eyes. It’s cool. But it’s also disarming at times. But you know, I’m I’m a strong dude. I guess. I’ve never experienced any paranormal anything. You know, so like, I don’t I don’t know if that’s if that’s real, real or not. But yeah, so know if it’s a lost memory.

TR in Conversation with Andrew: 49:19
It sounds like you do sometimes think a little bit more about them as opposed to just okay, this is just something medical happening with my eye. Like when my child has been a for example, and I know it’s not because somebody ruins it for me and gives me the medical explanation but I’m like, wow, I should I be looking at these shapes and these things that I’m saying and really thinking about it. How does this relate to my mood right now? Wait, is this some sort of internal communication and I talking to myself through these images, like am I trying to tell myself you know, it’s I get into it. It’s like, and it’s quite enjoyable. Again, mine is Charles Bonnett , and I never heard anyone who has that. The experience of Charles Bonnett is usually it’s those people usually report little monsters type images.

Andrew 50:06
Yeah, terrible.

TR in Conversation with Andrew: 50:09
Yeah. That was like waking up from a bad dream. I could wake up gradually, and then I’ll see a face. And it’s usually like a creepy looking. It’s not a real face, right. But it’s like a creepy looking animation or something like that. And then it might be like you described sort of neon ish electrified. And it’s just, and then I just stare at it. And then it goes away.

Andrew 50:31
You ever had sleep paralysis? Oh, no. Yeah, when I was a kid, it was, it was kind of bad. And I would experience something very similar to that. But I think it was, you know, in a dark space where like, the color receptors or whatever things would swirl around, you know, and then like, maybe there’d be a shadow of a tree. And I would just be like, sleep paralysis, but I’d be seeing this stuff. I mean, that sounds a lot like the situation where if you wake up from a bad dream, and there’s like, this, you know, image that you see that, you know, looks like a face to you. And you were dreaming about maybe falling through the ice. But then there’s like this face, it’s like, Are you being faced with this being that’s controlling your mind? I mean, there’s like, so when you start thinking like that, I mean, cuz, you know, thinking scientifically, on what all that means is, yeah, yeah, whatever. But you think holistically or like how your body’s reaction is, maybe it is your mood, maybe it’s your body communicating to, you know, like, how the hell the science? No,

TR in Conversation with Andrew: 51:35
no, I definitely think there’s a relationship. I know, there’s a relationship between my body and what I see. Because when I’m tired, it’s hazy, it’s very blurry. And when I’m, wake right up, I’m like, if I took a little 20 minute cat nap, it just starts to get just really clear and vivid. It’s like, Okay, I’m ready to go now. I’m good.

Andrew 51:53
Yeah, when I’m tired. I mean, that’s the kind of stuff that you know, my, everything’s hazy. And, you know, it’s, it’s, I started thinking, like, it’s just like a visual migraine. I heard people talk about those. So I started taking, like, prescription strength, aspirin or ibuprofen, or whatever, and it cleared it. So I’m like, wait, maybe this is a migraine? Or maybe I just convinced myself. It’s really psychedelic. It’s also disarming, but then at the same time, sometimes you feel like you have control over it. And you can change it. Yeah. And I can’t explain it. Other than that, you know, it’s like, you know, so many of us have these experiences, and they’re all different. But like, are they based in memory? Are they based in like, the degradation of your, you know, the cells in your eye or your brain? Or, you know, the substance that you may have ingested? Who knows, but, I mean, it’s definitely something that would scare the hell out of somebody who’s never experienced that to wake up and say that someday?

TR in Conversation with Andrew: 53:06
Do you have synesthesia by any chance?

Andrew 53:08
I do. That’s another thing that I never really get to talk about. The only person I ever talked to about synesthesia was this woman I went to school with their reaction was numbers, they would get these hallucinations or visions of different numbers. And with me, it doesn’t happen as often, which I’m bummed about. You just see colors, or you sense movement, and all these things based on sound in music, like when I hear something, there’s a color. In my head, I don’t necessarily see an image all the time. Sometimes I do. But it’s like, I was listening to Underdog by Sly and the Family Stone earlier. And it’s like, every time the horns hit that was like a yellow, like a fire yellow with like an orange bass. And then that drum came in. And it was kind of like, headlight white, pulsing on that beat and that sort of thing. So like these kind of like Sonic qualities, and these tambours to me, sometimes relate to color. And I don’t even know if it’s the right color, because I do have some colorblindness, but I’ve done stuff when I used to work in the studio, especially when I was recording my band, I’d be in this room for hours, and sometimes other people would be in there sometimes not. And I’d listen to stuff like what does this mix need? This guitar needs to look more like a paper bag. I need that Brown, I need paper bag Brown. And like, you know, that’s what’s in my head. And so I’d mess with it like with the EQ, or whatever kind of processing until I felt like that color was attached to that sound. It’s how I started thinking and it was like a wonder if I knew how to blend color and I understood color more if that would affect how I mix or listen. It’s pretty cool. It’s really wild. So

TR in Conversation with Andrew: 54:48
when you were looking for the paper brown bag, you were just sort of changing EQs you were playing with different ones or do you know to go to certain places?

Andrew 54:54
At that point, it was I was just messing with EQ and I was using the EQ on the eye On the board like the parametric EQ, I was trying to do it physically because this place had some outboard stuff. But sometimes you know if I’m like mixing something I’m putting like, like a reverb on it. That’s color coordinated. As far as I’m concerned, like space, whether it’s like real space or it’s like, you know, synthetic space like a reverb, there’s color, I was working on something earlier. And I was like, eating an ice cream sandwich. And I was listening to the reverb chain. And I was like, this seems cold because, you know, sometimes you have these other sort of like, emotions to music, or, you know, sensory reactions. I finished a sandwich it no longer seemed cold. But then it was, it was like, thinking about it as like a strawberry in a pool of lavender is what I heard this reverb chain of just this like Drum and Bass silly thing that I was doing. And I started thinking about maybe I gotta figure out what colors go with strawberry lavender, and then try to mix the rest of it. So it looks in my mind like that. And if that would be at all interesting, you know, it’s like, Pharrell did a record. That was all based on his synesthesia. I don’t know if it was a Neptune’s record or if it was,

TR in Conversation with Andrew: 56:10
I think Kanye is also supposed to have synesthesia.

Andrew 56:13
Yeah, and you know, weirdos, you know, that happens. A lot of times people don’t even know what it is. Yeah, you know, you can always you can have any kind of like sensory, like experience like referential to anything. But then when it’s like, you start getting deep and thinking about and studying it, it’s like this is actually kind of kind of magic. And really fun. I wish that there was a more natural way to kind of activate my synesthesia, but it seems now it’s really, I mean, maybe I need to eat more of these ice cream sandwiches, but sometimes it seems….

TR in Conversation with Andrew: 38:34
Talk to Carmen. Talk to Carmen to make you a strain. (Laughs)

Andrew:
? Yeah. get some, get some some that LSD hash oil or whatever, in my sandwich. Good lord. Like in 2013. I was doing a lot of sound work and mixing based around that because it was really active at the time. And I don’t know if it’s something where I just not allowing myself to do it. So overworked and stressed about stuff, like maybe that’s the thing, maybe I need to just chill and I can let my body communicate the way it wants to. Yeah. And like Andy has some have some fun here. Just listen, listen to this, as a case record and just listen to the color.

TR in Conversation with Andrew: 57:25
That’s funny that you chose that you said Isaac Hayes, because we were doing I do some classes with Cheryl. And we did this thing where I wanted folks to describe so we you know, we talk about audio description in a creative way. And so I said, Well, I want y’all to describe a song. Right? And so I used Isaac Hayes, because I love it. It always works for me, “Hung Up On My Baby.” And the Ghetto Boys use it or whatever. They’re so different. And that was part of why I chose that song because that same riff, the interpretation when you hear it in the Ghetto Boys, it doesn’t give you that same feeling. As “Hung Up On My Baby”.

Andrew 58:01
Their . Narratives are so much more descriptive than what was going on at Stax. Yeah,

TR in Conversation with Andrew: 58:06
I wish I had those colors because I always try to match it with what I’m seeing. And I don’t, I don’t find any sort of relationship except for the clarity. That’s the only thing that the relationship for me is that clarity.

Andrew 58:18
Clarity is something that I mean, that’s definitely something to strive for. You know, it’s like you got clarity. I mean, damn, I wish

TR in Conversation with Andrew: 58:31
Where can folks, check out what you’re doing and stay in contact with you.
Andrew 58:35
Yeah, my Instagram Tik Tok website, YouTube, everything like that.
ThisIsAndySlater.
TR in Conversation with Andrew: 58:42
You’re on Tick Tock huh, what are you doing on Tick Tock?

Andrew:
Being an asshole!

TR in Conversation with Andrew: 58:42
Laughs….

Andrew 58:45
I had a viral video like last year like million something like maybe three or four

TR in Conversation with Andrew: 58:55
Oh, yeah. See, I don’t do tick tock. What are you doing?

Andrew 58:59
It was it was footage of a guy in the in the street in the middle of the night telling me it wasn’t blind. I shouldn’t be using grabbed it. And yeah, and so it started a huge discourse of people thinking that you know, the whole thing of like, how do you use tick tock if you if you can’t, you know, like all that stuff where they all came out of the woodwork. It’s like you’ll Google is free. My life is not a q&a.

I’ll put up fun videos of like, you know, me messing with like access stuff or just like me walking around and videotaping my cane on different surfaces and making sound.

TR:

I love that, “Making sounds on surfaces”.

Salute to Andrew Slater, I appreciate you bro!
Remember, we’ll be back in September and it’s always the second and fourth Tuesday of the month when we’re publishing episodes.

Aight!
Reid My Mind Radio Outro
Peace!

Hide the transcript

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.

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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.
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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!
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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

NOMorePasses!

TR:

In 2020 I was invited to participate in a panel conversation with other Black disabled creators.

The panel was a part of the Superfest Disability Film Festival.
— Filtered voice – You know the best disability film festival out here!

The feature film that year was a documentary about a Black Blind artist, poet and writer my friend, Mr. Charles Curtis Blackwell.
If you haven’t listened to that episode, I highly recommend it.
It’s a little different from what I usually do here on the podcast.

Prior to the panel, the documentary was shown. It included “audio description”.
Can you tell by the way I annunciated audio description that I put that in quotes?
— Filtered voice – That’s because it didn’t even deserve the title.

I’m not going into the specifics of what made it awful other than,
it was obviously done on the fly and with no consideration for Blind viewers.
It was done because someone was told they had to have AD in order to have their film shown.
It’s an example of when the compliance approach to AD goes wrong.

I don’t place any blame at all on those responsible for Superfest. Rather the blame lies solely with the person responsible for creating that AD track.

Unfortunately!
— Filtered voice – or Maybe fortunately?
The recording of this specific panel is lost. It no longer exist!
If it were you would hear my rant about the awful audio description.

Oh well! I’ll sum it up for you.

Any film being made about Blind people or a Blind or low vision person that doesn’t include audio description is
— Filtered voice – Say it, say it!
exploitive.

If the protagonist or the main subject of the film can’t independently consume the content, that’s wrong.
It tells me that this person or those like them aren’t even considered as consumers,
rather just subjects to be put on display for someone’s entertainment

The recording may be gone, but I do recall putting film makers on alert.
Anyone, using Blind people as props in their films, videos or any visual content and not making that accessible via audio description, image descriptions, well you gets no more passes.
— Filtered voice – Don’t even try to correct my English)

I’ve accepted excuses in the past based on ignorance. “I had no idea about audio description.”
I get it, it’s true. How could someone know what they don’t know.

But come on, if your subject matter is in anyway related to blindness and you haven’t even considered how Blind people will consume your content;
#NoMorePasses
I think it’s worth calling it out when we see it.
That doesn’t have to be publicly, but it needs to be discussed.
— Filtered voice: No more passes y’all!

But 2020 feels like ages ago.
Today, I have a much better version of this story.
That’s a film featuring a Blind person that not only includes access but
they pay special attention to describing the unseen!

So it’s the second episode of the Flipping the Script 2023 season.
— Sample: “Another one!”, DJ Calid

I’m Thomas Reid. Welcome to Reid My Mind Radio. Let’s get it!

Audio: Reid My Mind Theme Music

Meet Set & Pedro

Set:

My name is Set Hernandez. I use they them pronouns. I am a filmmaker, community organizer. And more recently, I am the director, producer of unseen, which is a feature length documentary.

I am person with olive complexion. black rimmed glasses, black hair, black beard, round face. Today, I’m wearing a striped shirt with light blue and gray.

The film follows my friend Pedro .

Pedro:

My preferred pronouns are he him, they them. I’m a social worker.

I am five nine. My skin is light brown, and I am bald. And I wear glasses.

Set:

… as he navigates the uncertainties of life being an undocumented immigrant who also happens to be blind.

The Meeting

TR in conversation with Set:

Pedro was your friend, were you guys friends before the film?

Set:

We met because I’m also an undocumented immigrant.

I’ve been doing community organizing since I was 18. I was involved in this program that was providing professional development opportunities for undocumented young adults.

Pedro:

Dream summer.

Set:

Pedro was part of this cohort that we had that year to do work around this area of healthcare and Immigrant Justice.

TR:

Part of Set’s role in communications for the organization included pitching stories to the press
and making YouTube videos about the work the cohorts were doing.

Set became more interested in Pedro’s story as his stood out from others.

Set:

that was the only person who we knew to have a disability in the program at the time.

I’ve come to realize how the experience of having a disability and being undocumented, are very much not discussed, often in the rhetoric of the immigrant rights movement that I have been a part of.

There’s often like this erasure, and maybe even like ableism in the narrative of the immigrant rights movement.
This idea that to prove your worthiness to become a citizen, you’re hardworking, taxpaying and all that stuff.
it kind of values a person based on their economic output, as opposed to their full humanity.
my intention really, was to uplift this experience of the intersection of disability and immigration, which hasn’t really been discussed much in the community in the movement that I’ve been a part of.

— Music begins: A bouncy, “Afro beats” influenced track.

The Idea

TR in Conversation with Set:
How did you approach Pedro with the idea?
“Hey, I want to follow you around.”
(Set & TR laugh)

Set:

I remember, I was driving home, and I got to my apartment building in the garage. And that’s when I was talking to Pedro about first reaching out to him for filming.
This was I think, maybe may or April 2016, when Barack Obama was still president. It feels like eons ago.

TR:

In this particular case, the spotlight comes with additional risks.

Set:

Each undocumented person weighs risks for themselves individually.

Pedro:

Back then, I was going through a really rough patch. I was barely in the middle of my undergrad and I thought I didn’t have anything to lose.

Set:

Within the experience of being undocumented, it’s almost like every moment is risky.

When I first applied for DACA years ago, Deferred Action for Childhood Arrivals,
there was this idea that once you submit the information for DACA, it can give you benefits, but also, you’re pretty much telling the government that you’ve been here and documented, Here’s my address, here’s my information and I’m going to move forward with this application. If this program gets rescinded, then the government has your information.

Do I take this risk? Do I try to live my life and try to access the benefits that this program can offer me?

TR:

The greater the risk, the greater the return.

Set:

We were able to get DACA, because of the organizing of undocumented youth.

A lot of the tactics that we use was to tell our story. Eleven million undocumented people at the time – we’re like this statistic with no identity in many ways, coming out of the shadows and standing in our truth really acknowledging our experience and our inherent dignity as human beings in this country, who are part of our communities.

that act of telling your story is pretty much putting a spotlight on you.

I’ve been in the shadow all this time now I’m going to come out. What’s the risk that it has for me to tell my story? And what are also the prospective opportunities that I can gain from this.

There are risks in making a film explicitly about undocumented person. There’s individual risks, but also there’s a benefit for our community, and maybe ourselves that we kind of have to take into consideration.

Pedro:

I don’t consider myself an activist.

I have a great respect for activist doing all the grassroots work. It takes a lot of work, and it takes a big toll on your mental health. So because of my frail mental health, I honestly don’t think that I would be able to do it. I feel that I work best when I’m behind the stage.
Even in my line of work, I don’t really like to do group work. I do mostly working one on one with a client. And that’s what I do best. I like to have a more controlled environment.

TR:

Personally, I’m a card carrying member of the control freak club.
But there’s some real value in letting go.

Pedro:

I have been tricked into the idea of surrendering.
Back then I was very resistant of what was going on, not knowing that I didn’t have any control over my life. Because of my disability, my immigration status, my mental health. It put me in a position that I wanted to have control over everything. Because it felt very uncertain.

if I didn’t have control, my life was gonna spin out of control.
My life was gonna get into a rabbit hole. But the more control that I wanted to have in my life, the more that I was getting into that rabbit hole. So it became very counterintuitive.

When I started exploring the idea of surrendering. Just letting life flow and being okay with it, accepting that things are how they are and that life is not fair. But the fact that life is not fair, doesn’t mean that life is miserable, or life has to be bad.

I have come to terms with it. Somehow I got into this for a reason. And let’s make the best out of it.

— Music ends with track playing in reverse.

TR:

File that one under gems as we return to the film, Unseen.

Set:

Set:
unseen is a film about desire, wanting something really bad. And that you think that when you get that thing you really want it would solve all of your problems. But when you finally get it, you realize that actually doesn’t solve any of your problems. And if anything, there’s more problems that you have to confront.

The film traces Pedro’s story as he follows his journey to become a social worker, hoping that doing so would allow him to support his family and also provide services for his community that is so lacking, especially in the immigrant and disability community where he’s coming from.

Pedro:

I did ask him, okay, we’re gonna do this, but how am I going to see it? How am I going to experience it?
And that’s when he was talking all about accessibility.

TR in Conversation with Set:

Yeah, so from the beginning, you recognize that you wanted Pedro to actually be a consumer of this film?

Set:

Oh, my gosh, like, of course,.

TR:

Compare that to the story I shared in the intro.

Set:

Maybe part of it is like coming from being undocumented, being queer person of color. I feel like sometimes, we get spoken to, or people speak on our behalf instead of letting us speak for ourselves.

Pedro:

That’s when I introduced him to audio description.

I was telling him about the Netflix films and how now the originals from Netflix have audio description.
He started getting really into it, and started exposing himself into different projects, or talking to different people, film makers.

He started learning a lot because the goal was to make it as accessible as possible.

His main concern is like, I want you to have the full experience of the film. I want you to be able to fully access the film and make it so you can enjoy it and not be just guessing, like what’s going on right now?

Set on Access

Set:

I’m very much a believer in I don’t know what’s best for you.

Pedro actually, was in many ways my teacher and mentor also around so many things, accessibility, mental health, emotions, like beyond accessibility.

Pedro is truly one of the people that have taught me a lot about life and his friendship has really been so important to me.

TR:

That relationship comes through in the film as well as
in the attention to detail in the implementation of the access.

Set:

Toni Morrison, she has this interview with Charlie Rose, where he was asking her if she’d ever consider writing about white people, I think that was the framing of it.
Toni Morrison said, it’s like, our lives have no meaning without the white gaze.

I feel like you can apply that to the experience of many communities.

The stories of undocumented people have no meaning without the gaze of citizens.

The stories of people with disabilities have no meaning without the gaze of the non disabled.

TR:

Assigning value only when it reaches a standard set by a dominant group.
As opposed to being a full participant in telling your story.

For marginalized groups, historically, that just hasn’t been the case.

Set:

People in places of power speaking on behalf of other folks.

In documentary filmmaking, I think it often happens that way.

The people who have a lot of resources are often people who are not from our communities.
To be honest, white filmmakers telling stories of people of color and like non disabled people telling the stories of people with disabilities.

I’m very much a person who likes really honoring, and preserving relationships and friendships.

I have a lot of people in my life that I love and cherish.
I wouldn’t want to cause any harm to Pedro.

At the end of the day, Pedro, this is yours. This is your life story.
How can I amplify the experiences that you have? Making sure that it’s as enjoyable for you when we finally get to experience it with an audience?

— Transition: Swoosh

Set:

I may be undocumented queer person of color having experienced all these marginalization’s, but being a non disabled person, there’s also certain considerations that have to be mindful of that Pedro experiences all the time

— Transition: Film Slate

Filmmakers have this idea that they’re going to change the world with their films, especially if it’s about a social justice issue, or a person who’s like navigating really difficult experiences in life. But how can you expect your film to change the world? If you’re like hurting the person you’re featuring in the film?

— Transition: Digital descending as in failure!

I feel like it’s important for every human being to just always be mindful that we are all humans. We’re all gonna make mistakes.

TR in Conversation with Set:

Sometimes it feels like folks, they lose their sense of humanity, because they don’t see other people as human.

If everyone can relate on that level, yeah, things would be a whole lot different.

What were some of your early expectations around audio description before even starting? What were you thinking about it?

Set:

Originally my idea was we’re gonna make this film and it’s gonna be so accessible in this really artistically exciting way and it’s gonna be amazing.

Ultimately, I like trying to reinvent things, but sometimes the wheels there already. don’t reinvent the wheel.

As a person who’s not usually an AD user, a non blind individual, I feel like, it’s not necessarily my place to reinvent that we’ll because I don’t even use description all that often. Who am I to say that I know better than 80 users?

this is the first feature I’m working on. I’m realizing that when you’re a director
part of the trick of directing, is recognizing when you don’t know that you don’t know everything.

TR:
Set sought out some assistance.

— Music begins: An up tempo, bright Hip Hop beat.

Set:

Bringing producers and collaborators that really understand and follow their guidance around these aspects of the project.

There’s many mentors like yourself, Cheryl green, a captioner from the film, accessibility co producer with you for the film.

Cheryl taught me that there’s no one size fits all for accessibility. Choice, having options, that can make things accessible.

Everyone has different access needs.

I’m also learning that sometimes people have conflicting access needs.

it’s really important to understand my own limitations, my own learning curves.

I should also share another mentor in this project, Matt Lauderbach.

TR:

In addition to AD and captions, there are several parts of the film that are in Spanish and include English subtitles.
Rather than having one voice read each, multiple voices were used to easily distinguish between characters.
Human voices along with an authentic Spanish speaking human narrator, Reid My Mind Radio Family member Nefertiti Matos Olivares.

As with any film project, description is constrained by the available time that doesn’t overlap with any dialog or informative sound design or music.

Often Blind and low vision AD viewers don’t learn of the visual aesthetics of a film.
In Unseen, the majority of the film is blurry.

Set:

The idea was how do we invite people to watch a movie by listening as opposed to by leaning into all the visual information that cinema usually does.

Also, Pedro is a social worker he spends a lot of his time listening to people what is it like for us to spend the next 90 minutes of our lives listening to this person who’s spent so much of his time listening to others.

We realized that blurriness can also imply uncertainty of life, the visual aesthetic had more thematic implications, but since the get go the idea was never to simulate blindness.

The intention might not have been that, but the impact is that.
I’m curious how that landed on you. It would be also great to know your perspective.

TR in Conversation with Set: 36:52
I had that concern. I was like, ah, the simulation thing.

TR:

If you’re interested in my take on simulations, check out the episode titled ,
Live Inspiration Porn – I Got Duped, from March 2020.
I share an experience I had where I observed a bunch of sighted folks “walk in our shoes”.
But as far as Unseen is concerned.

TR in Conversation with Set:

I thought it was more about undocumented, that Pedro is living this sort of life of being unseen.

From my understanding, Pedro is the only one who’s actually kind of in focus.
that’s a statement in itself. It’s like, you are the center of this talk. Like you’re flipping the script on this.

TR:

This and other information is passed to the AD viewer through the delivery of a pre show.
In the case of Unseen, it’s a prepended addition to the film and AD that
AD writer, Cheryl Green refers to as an on ramp.
Sort of gently taking you into the film.
— Pre-show Sample

Pedro:

details make a big difference …

little things,

since it’s a bilingual film, some of the characters having different voices, makes it more understandable
little details that may not seem important for other people make the experience enriching?

It is an art because you have to describe something in such a rich way for a person to paint a picture in their mind.

TR:

The thing about images and yes, audio description, it’s subjective.

Pedro:

I guess it’s all about perception. for instance

the scene with the traffic? how said make it seem that it was like I was about to get run over?

TR:

Oo! I just knew this scene was going to come up somehow in our conversation.

— Clip from Unseen:

Sounds of heavy traffic – cars quickly driving by and the sound of Pedro’s white cane sweeping back and forth.
Set: “Friend, you want to move closer to the left?”… Ok, so?
Pedro: “Uh, no!”
Set: Inaudible mumble. Uh, ok. Are you ok?”
Pedro: “Yeh, I’m ok”
Set: “Ok.. stick to your left. Don’t get run over!”
Pedro: “According to me, I’m still in uh, the curb, no?”
Set: “You’re still on the curb, yeh! Nah, I’m just like ahh! Fast cars!”
— Scene fades out.

TR:

Set’s concern while probably not warranted is something many of us have experienced.
It comes from a good place but can have repercussions.

Pedro:
It made me doubt for a second, I actually had to double check with my cane how close I was from the curve.
I was right. I was not that close to it.

TR:

When it comes to orientation and mobility we have to have trust in ourselves, as Pedro did.

When consuming AD, we’re trusting in someone else’s perspective.

While AD paints images from a pallet of words, it inherently leaves out those who speak other languages.
Which is a missed opportunity especially when television and movies can often bridge all sorts of gaps.

— Sample audio from a Tela novella.

Pedro:

Novellas in a way, it’s an excuse to just spend time with your family, especially with the older folks. It’s just one of those activities that allow you to spend time with your family.

In order to strike a conversation with my older folks, during the commercials. Okay, tell me what’s going on?

The accessibility is not there. And I highly doubt that is going to be there anytime soon. Because The stigma with disabilities the Spanish media are not putting our interests in mind.

TR:

Let’s be clear, that stigma, ableism, well we know exist in every community.
Pedro recognizes and acknowledges the work of the Spanish speaking disabled community pushing back.

Pedro:

It takes a minute to change people’s minds and to help them see a different perspective.

TR in Conversation with Set:
What conversations do you
really want to start with this?
It seems like there’s multiple

Set:

love, love this question. Yes, there are multiple

When we think about social issue films, the idea of impact that we have in mind is this macro socio political impact, we’re going to change laws, we’re going to transform society, we’re going to make it more just and equal.

We want to make sure that this film contributes to really bringing together the disability and Immigrant Justice Movement in the US to begin with maybe also in other places.

Historically, in the immigrant rights movement, we don’t really uplift the experiences and the needs of people with disabilities. And likewise, in the disability justice community, there’s not often a recognition that sometimes a person doesn’t have documentation, and something like the ADA might not benefit them, so how do we uplift these realities?

Pedro:

The first step is just to start talking about it.

The three issues can be very uncomfortable issues for many groups, immigration, mental health, disabilities,

Having an excuse to start conversation about those topics. Actually challenge the previous views about those topics.

If we can start a conversation and start opening up our ears and our hearts and our eyes more into those topics, and just explore them for what they are just part of life, part of an identity of a person. But it’s not the whole person, we would have done our job.

Set:

But in the course of making the film, I’m realizing that it also had a very personal impact on the people who are involved in the film, so many of our team who understand their experiences to be so similar to Pedro’s , whether they’re other undocumented individuals or their people with disabilities, finding a story that’s so much about the roundedness of a human being not just about the issues that they’re facing.

it’s like a healing oriented goal. And that’s not to say that the other goals around socio political aspects of the story no longer exist, because they’re very much still there.

TR in Conversation with Set:
Is there something that you would want to share about how this personally impacted you ? I mean, this is years of your life?

Set:

For the longest time, I was thinking so much about organizing, the world around me, the injustice that everyone faces, I minimize the pain and the struggles. I don’t know how I’m feeling emotionally.

Set:

I think being in touch with my humanity, allowed me to also understand the things that Pedro talks to, in the film, his own inner demons that he’s struggling with. Depression, worries, fears. Those are things that I feel also as a human being, but for the longest time I suppress them, because I was like, There’s bigger problems in life, why am I worried about my own tiny world.

I’m realizing, I have to open up myself to my own humanity, so that I can also understand the humanity of the person whose story I am trying to uplift with his film.

If I can feel it in this way, if other people from our community can feel it this way, how cool would it be for everybody to be reminded that what you’re going through as an individual, you don’t have to minimize it you are enough, what you’re going through is valid.

the film is also a story of love.
people have been so kind to us in making this film.
And it just gives me so much encouragement.

There’s so many filmmakers who are struggling to make their film. And of all these filmmakers how come our project gets to experience this love?

in our communities, there’s so many people who experience so much inequity every day, how come we’re the ones that get to have these resources?
Our project is just as worthy as everybody else’s.

— Music begins: A melancholy groove.

TR in Conversation with Set: 1:10:55
What would you like to say is the answer to that question? Why this movie?

Set: 1:11:19

(Exhales!)

Why this movie? That’s a good question.

There are so many serendipitous moments that happen in life. And sometimes, we just kind of have to take that opportunity and embrace it.

One of my mentors Sabaah Folayan with firelight media, she said, we only live once, when ancestors, community, choose us for a certain thing, we just gotta seize it.

That question of why me, there’s got to be a series of logical reasons as to why me.

Maybe sometimes I got to stop rationalizing. Maybe sometimes I just got to accept things for what they are.

TR in Conversation with Set:

I would like to think that it’s a combination of that energy. And yes, this was something you were supposed to do and the part that you’re doing is that you stayed the course and did the work and so therefore you’re rewarded. That’s what I would like to think.

Set:

my desire to be the best person that I can be every day is so that I can reciprocate the love that I’ve received from people like my family.

There’s so many people who go through the day, wondering if someone cares about them. And

maybe that’s why I want to do my best to do right by Pedro. He and his family has made me feel so much affirmation.

And in the course of telling this story with them, that the least I can do is to do right by them.

— Music fades out.

TR:

Unfortunately, our experiences with audio description, don’t always leave us believing that others care to do right by us.

That could mean;
– the listening devices in the theater that seem to never actually work
– movies and television shows released without audio description altogether
– Sitting in a classroom and the instructor announces they’re going to play a video and there’s no AD.

Pedro came to believe this was just the norm. But today, he finds himself constantly confronting that stigma.
And when the result is access, audio description for example, the results are quite different.

Pedro:

You feel that you are starting to belong more and you connect more with your You are a part of the gang. You’re no longer the outsider.

— Music begins: An inspirational opening synth leads into a funky up tempo groove.

TR:

Belonging, connecting, no longer an outsider… finally being seen.

As of early June, 2023 Unseen is steadily being accepted to film festivals including
Hot Docs in Toronto, L A Asian Pacific Film Festival and more.
And it was announced that it will also be a part of the PBS documentary series POV.

Set:

they are including us for season 36 for a national broadcast in the US and US territories for the film.

Every screening that we have, we’re making it explicitly named, that ad and Captions are available so that if you are an ad user, you’re not wondering, is this going to be accessible for me? We’re making sure that venues are accessible for wheelchair users, ASL interpreters cart and also bilingual interpretation if need be.

One of the mentors for the project was saying this film, in essence, is an invitation for folks who don’t often think of the film festival or the theater as a space for them.

this film is really an invitation for everybody, like hey come!

we’re making this theater like as accessible for you as possible, but also the recognition that accessibility is not a one size fits all. So please do give us feedback if there are things that we can continue to improve.

TR in Conversation with Set:

Congratulations set.

Set:

Thank you so much. Congratulations to all of us.

Thank you for making the audio descriptions. That sound mixing of the ad casting the ad voices everything like this so grateful for your collaboration.

I’m reflecting on when we first met. Over zoom.
This was 2020

TR in Conversation with Set:
was 2020. Yeah,

Set:
Three years later? Oh my God!

(The two laugh))

TR:

You know you want to checkout the Unseen!

Set:

@watch unseen film is our handle and all social media or you can also follow us on our website and seen that film.com To keep posted about screenings and other upcoming opportunities as we get distribution for the film.

TR:

What a difference a few years can make.

Contrasting the film I mentioned at the opening of this episode and Unseen,
I don’t think the differences has anything to do with time.

Some say, it’s an awareness of accessibility.

I think Set actually hit on the fundamental difference;

Set:

“I’m realizing, I have to open up myself to my own humanity, so that I can also understand the humanity of the person whose story I am trying to uplift with his film.”

TR:

Big shout out to both Set & Pedro.
The latest additions to the Reid My Mind Radio family!

Oh, I’m mean, official!

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