Reid My Mind

Crowd applause
“We’re about to let our hair down. Woo!”

TR:

The episodes I least enjoy producing, are those in response to an injustice, unfairness or something I find plain wrong.

I’m not the type of person who looks for drama.
Reid My Mind Radio family knows I put time into explaining my perspective and I treat people fairly.

Ever since fourth grade, I knew, I have to be cautious about how I respond. My resting face or my angry face, was perceived to be “looking for a problem”. Especially to my white teachers.

Physically responding to being pushed or punched would inevitably classify me as the aggressor.

The challenge is not only to effectively make a case for my position, but also be respectful.

Honestly, saying that bothers me.

Respectful?

The truth is it’s not so much about my behavior. More than often, it’s about how I’m perceived – the aggressor.
There are those who will try and dismiss what I’m saying as the ramblings of an angry Black Blind man.

But that ain’t new!

— A montage of Black athletes speaking out against injustice and the resulting response
Muhammad Ali;: It has been said that I have two alternatives, either go to jail or go to the army, but I will like to say there is another alternative. And that alternative is justice!

News Reporter: Mr. Muhammad Ali has just refused to be inducted into the United States Armed Forces.

Narrator: The reaction was swift and severe. within hours, the Chairman of the New York State Athletic Commission denounced his conduct as detrimental to the interests of boxing, stripping him of his license to fight in New York. Almost every other boxing commission in the United States followed suit.

News Reporter: Overnight San Francisco 49ers quarterback Colin Kaepernick refusing to stand during the national anthem again. (Over singing of the anthem)
This time he took a knee right behind hundreds of service members being honored on military appreciation night. As the crowd and players stand you can see Kaepernick kneeling on the sideline. Teammate Eric Reid joining him.

The crowd booing every time he took a snap.

Fox Commentator: I’m gonna create a new banner, this is a dumb jock alert. (Ding, ding ding!) NBA superstar Lebron James is talking politics again…

Reporter: You spoke out on the Sterling issue. And you were also outspoken on Travon Martin.
Lebron James: Yes!

Fox Commentator: Keep the political commentary to yourself or as someone once said; “Shut up and dribble!”

TR:
It’s the same old story , when Black people call out any form of injustice.
Shut up and dribble. Stay in your place. Just keep your head down and do your work.

Speaking out, well that just leads to some form of punishment or being made an example to discourage anyone else from doing the same.
So they’re stripped of their ability to earn a living. They’re branded as ignorant and made to appear to be a joke.

Do everything, but deal with inequality.

Of course, once society acknowledges the inequity then they praise that outspoken person for their courage
and act as though popular culture always supported their efforts.

Now, I’m in no way comparing myself to these individuals or anyone else for that matter. I’m simply giving you some context for why
these are my least favorite types of episodes to produce.

For Black people especially, truly speaking out can have real repercussions. Some might say backlash.

Woof! What’s the origin of that word?

Yet, sitting by and saying nothing, well that isn’t really an option!

My mother made it clear, none of her children were going to be bullied.
Just watching her move through life, as her child, I learned as she would say, you don’t hold your tongue.
She believed, if you were about what was right and fair, then there’s no need for being shy about what you have to say. That was until she and I disagreed about something, but that’s another story!

I’m Marcy’s son, Thomas Reid. this is Reid My Mind Radio!
— “Here we go again! ” Chuck D, Public Enemy “Bring the Noise”

— Reid My Mind Radio Theme Music
— Turn it up!”

— Broken record effect

You ever feel like a broken record?

— Dream harp sound
— audio from the 2022 episode titled Black Art White Voices
”
Music begins, a pulsating ominous synth that opens up to a dramatic mid-tempo beat.

TR:

What’s up Reid My Mind Radio?

We’re in between seasons but I wanted to share some thoughts with the family.

Truth is, I wish I didn’t feel obligated to share these thoughts on this particular subject.
I’m hoping one day it won’t be necessary.

Several years ago now, I produced this episode that has really sort of attached itself to me.
It’s the Black Panther episode.
The episode I almost threw away. I didn’t think anyone would care.
I published it anyway.

People cared!

I think.

I’m just ready to move past it.
Meaning, I would love to see those who say they understand and support the need for Audio description to be more culturally aware and competent, put it into practice.

but, it’s like…
Audio sample: “Just when I thought I was out, they pull me back in.” From The Godfather.
”

TR:

That was the opening of the 2022 episode titled Black Art White Voices.
I feel like the title says it all, but apparently not enough.

This issue didn’t start in 2022, it’s way before Black Panther in 2018.
In fact, it begins before audio description.

— Collage of audio clips —
— “European institutions like the British Museum and the Love are home to some of the world’s finest art. But some of the treasures on display were stolen during colonial times. Experts believe up to 90 % of African cultural artifacts were taken from the continent.”

— “Cultural theft has been, especially when it comes to Black culture, as American as apple pie.”
— “From the time we were brought over here on slave ships and our very lives were stolen from us.”
— “From white artists that put Black face on” … “Elvis Presley” …
— “Don’t do my thing and not give me my share. So that’s where it becomes theft.”
— Chuck Berry’s song followed by a replica from the Beach Boys.

TR:

The “white washing” of Black art and history is alive and just a part of this country’s fabric.

— “This fight against teaching America’s racist past has now been integrated into the broader Republican cancel culture wokeness moral panic being stoked with Joe Biden in office and since he’s a less appealing target than other recent Democratic presidents for oh gosh who knows what reasons, Mitch McConnell and his party decided the biggest threat to America is white people finding out America’s institutions are racist.”

TR:

Black art and culture isn’t made to be filtered through whiteness.

Non-Blind consumers are free to experience the art in the way it was intended. And so should Blind people.

TR:
Well exactly who are Blind people?

— From Kimberlé Crenshaw’s TED Talk
“Many years ago I began to use the term intersectionality… intersections of race, and gender of heterosexism, transphobia, xenophobia, ableism , all of these social dynamics come together and create challenges that are sometimes quite unique.”

TR:
That’s Professor Kimberlé Crenshaw , the person who first articulated and coined the term intersectionality.
Chances are, most of you are aware of intersectionality. It’s a pretty simple concept that’s often ignored.
Our lives consist of multiple identities and issues.
Recognizing these identities isn’t about ranking one over the other, it’s about acknowledging that we’re impacted differently and need to take this into consideration.

Blind people consist of every identity. (Hopefully that’s not news to you.

Audio description should center Blind people. (Again, I feel like the majority of you agree with this!)

All Blind people, not just those who are white and cisgendered. (Now this may be new for some.)

But, I’m going to move forward working under the assumption that we all agree that:
Blind people intersect with multiple identities. We are;
Black, indigenous, people of color, and white
We’re straight, gay, non-binary, trans
we’re from every socio economic background

I’ll also assume we can agree that we all have a right to experience content as it was intended by its creators.

With that said. let’s get into it.

— audio from “Hair Tales” show intro with Oprah

Tracey Ellis Ross: We created a space for us to gather our stories…

Unknown voice over:
“I never know what my hair will do”
Tracey Ellis Ross: Honoring our identity culture beauty and humanity.

Series of unknown voice overs:
“Braided locs, corn rows, twist out, hot comb, relaxed, any style you want; big, versatile, lush, beautiful, resilient hair. What version of myself do I want to be. You do not need hair to wear a crown. Whoop!
My hair is like laced…. laughs.

Tracey Ellis Ross: I’m Tracey Ellis Ross join me as we celebrate the truth of who we are through the wonderous world of our hair. So my hope is that these conversations we have create more space for belonging, self-actualization and I think there’s so much about our hair that’s community that sort of centers through our hair. And it can feel like it’s just a conversation about hair, but it’s not. Especially not for Black women.

Oprah: It never is.

Tracey Ellis Ross: No!

TR:

If you’ve been flipping the script on audio description with me over the past few years, you should be quite familiar with this idea.
I’m talking about conversations being about more than what they appear to be on the surface.

Black women and their hair is definitely about beauty, but it’s also political,

— Music Begins: “a dark, driving hip hop beat

it’s a reason for multiple generations to gather and share history,
it’s about economics. I’m sure someone can if they haven’t already, tell the story of humanity through Black women and their hair. The Black woman is the mother of us all! (Facts, not opinion)

Hair and the stories that come with them are personal.
Casandra:
Hair is a big deal to me, which is why my locks are past my glutes and reaching the back of my thighs. I have locks. And I’ve had them since I was 16. And I am 33 years old now. So I don’t see myself in any other style other than locs for as long as I can have them on my scalp.

TR:

That’s Casandra Xavier.

Casandra:
I mostly go by the screen name Caspher (spelled out) CASPHER. I am in Boston and grew up in Boston, originally from Florida.
I am identified as deaf blind, mixed combination of vision and hearing loss. AKA deaf blind champion, an African American woman. And I enjoy a good storytelling session. Whether it be on stage or in a small group setting. Great to be here.

TR:

The decision to grow her hair in locs is very personal to Caspher.

Casandra:
When I was younger, I was going through a lot of medical procedures that involved hair cutting. And so I had to wait till I was done with that awful passage of my life of surgeries every now and then to finally say okay, this is the hairstyle that I’ve always wanted.

I Couldn’t stand any other style because that would involve constantly getting your hair pulled on. And contorted into all kinds of styles. I just didn’t like people in my hair all the time.

I’ve always wanted locks.

— Audio collage on not letting people touch your head.

TR:

I don’t know if this is a spiritual thing, a Black thing but I’ve heard this all my life with different explanations.

I hear it mainly from Black people throughout the diaspora as well as LatinEx especially those from the Caribbean really

Casandra:
it’s the whole energy thing.

Where do they come from?
Did they even wash their hands?
What are their hand hygiene like?
Because you with your hair and then touching it. Later on? You’re gonna go lay down in the bed on the pillow with that? Mm hmm.
\end

TR:
If there’s one thing we all should understand, three years after the pandemic, germs are passed through physical contact.

What may be more complicated for some to accept is the idea of transferring negative energy through touch.

Either way, the kindergarten lesson remains true;
Don’t put your f*%#ing hands on people.

Casandra:
I was actually taking my hair down from a style. And when it came out, it was extra curly. So the next day, I had to, like stand as far apart from everybody. Because once they saw those, like locks in the curls hanging down my thigh. Everybody wanted to be hands on.

They would just walk up to me first, touch the hair and then ask afterwards.

So as soon as you catch them coming closer, I’m already moving all the way away. I’m not anywhere near you.

TR in Conversation with Casandra:
Can we be specific about the they and them?

I have an assumption.

Casandra:
The White folks. okay, a lot of black people they know better, so they won’t even.

TR in Conversation with Casandra:
So they just do it. They don’t even ask, Do they ask?

Casandra:
They just touch. This is like the classic line that comes out of their lips. So this is all yours. It’s all natural.

Yes. Absolutely.

And I do have to answer with attitude, because it is my hair since I was 16.
TR:
Then?

Casandra:
They asked me if they can touch my hair. I will say no.

TR:
Hairstyles have different meaning to different people.

Caspher’s mom for example felt locs were bad. And then Caspher’s older brother went an grew his hair in locs.

Casandra:
It was almost like he went and signed up for the army without telling her.
And she’s like, Oh, so you’re one of the troublemakers now.

And then she realized really quickly now that her son has locks, it’s not all as bad as it seems.

I wanted to get locks, when she was a lot more lenient about it and was like, Okay, you can get it.
Just wait until all your medical procedures are done.

I said once I’m done with all these surgeries and when everything is healed, I want locks. And I meant it. So she let me try out twist for a year. And she’s like, do you still want it? I said absolutely. And that’s when it happened.

— Music Ends

I started growing my locs and I couldn’t be any more happy. I don’t regret My decision at all.

Tracey Ellis Ross: Every kink, curl and coil in a Black woman’s hair has a hair tale…

TR:
And now, let me ask.

Who should voice the audio description for the Hair Tales documentary?
Who should be the filter through which Blind Black women experience their stories?

— Audio Description Narrator: “A title appears, The Hair Tales” Tracey Ellis Ross sits across a table from Oprah. Flowers decorate the room. Photos of Oprah and her family.

TR:

If you watch television and films with audio description, you recognize that voice.

Tansy:
Hi I’m Tansy Alexander. I’m a Caucasian woman. I’m five foot seven, I have Auburn hair. I’m very athletic and active. I do all variety from narration to audio books, to commercials, promos trailers, IVR phone systems. I’ve done pretty much it all.

TR:

That’s from the time she joined me right here on the podcast in 2020.

— Original audio from episode
Tansy:

And if I may broach this subject, I do think that we need to see more inclusiveness on the narrator side.

TR:

Well that’s exactly the point of this episode, these continued series of episodes.

I reached out to Tansy to have a conversation on the podcast.
Here’s my email to her for context.

— Music begins: A slow piano with lots of ambience evoking a purposefully over dramatic melancholy vibe.

— With sounds of typing on a keyboard layered underneath, TR reads his email.

Hello Tansy
I hope you’re doing well.
I wanted to invite you back on the podcast.
I’m producing an episode continuing the conversation on the topic of cultural competency specifically as it relates to the choice of the narrator.
I’ve been vocal about this subject and I’m hoping you would want to share your point of view.
When you first appeared on the podcast you expressed that you agreed with the idea of equitable experiences in AD.
Last year, I referred to the HBO series “Insecure” which you narrated.
I expressed that I didn’t feel you should have been cast in that role as the series is heavily based in Black culture.
In this episode, I discussed the idea that narrators and others in the industry who believe in equity have the power to help
advance the change we want to see in the industry.
That is, turn down roles and or help find other narrators who are of the film’s or project’s culture.
In this current episode I’m producing, once again, you are narrating a series heavily entrenched in Black culture.
Would you be interested in speaking to me about your feelings on this?
You should know, I don’t want this to come across like any sort of personal attack on you, because it isn’t at all.
This is about making the AD consumers experience of film and television as close to what was imagined during its creation.
I look forward to hearing from you.
Best,
t

TR:

That’s me!

I really do believe someone like Tansy who says she’s interested in…
— Tansy “more inclusiveness on the narrator side.”

could really help the AD industry become more equitable in their practice.

But, when listening back to the 2020 episode, the equity she’s seeking doesn’t seem to be about the AD consumer.

— From “2020 Episode
Tansy:

And if I may broach this subject, I do think that we need to see more inclusiveness on the narrator side.

I get plenty of work, but I still think there’s a gender bias in the industry for males to succeed.

It’s the same it’s been for the whole spectrum of Voice Over since I started over twenty years ago, the belief that a male will sell it better. For whatever reason; the voice will cut through or people listen more to a man than a woman. These are stereotypes that probably aren’t true at all. These decisions to use a man or a woman are extraordinarily subjective.

TR:

I get it! Subjective AF!

Tansy:

I used to do a lot of action, landing on the moon, war movies, I’ve done a few last year. I can do a romantic comedy, I can do a children’s thing, I can get in there and get gritty. But all of a sudden they decide oh well for all the Marvel we need to have men.

TR:

That’s what makes her response to my invitation difficult.

Hi Thomas.

How are you doing? I just saw this last night and wanted to think about it before I responded.

I appreciate that you’re take on the casting decisions in audio description.
I am an actress first and foremost, who accepts roles based on casting’s advice.
I work on all genres of projects including Sci-Fi, documentary, rom-com, adventure, animation, horror, etc.

It would seem a better fit for this interview if you interviewed casting directors/project managers for audio description.
In that way, you could outline that you feel like all people who narrate a project should always look like the majority of people in the project, or
at least always be from the group that the project is based on.
Those casting people are the decision makers who could enact that change.

Although I always enjoy a great discussion with you, I have to take a pass this time.
Really appreciate you thinking of me!

Warm regards

Tansy

TR:

Thankfully, I have the audio to pull from last year’s episode that directly responds to Tansy’s point.

— Sample: “Rewind Selecta”

— Original audio from 2022 Black Art White Voices

TR:
AD professionals, you have a choice.
If you’re aware of the inequity and say you want to see the change, well, recognize your power.

Narrators!

I find it really hard to believe that you don’t recognize when you’re not right for the project. Rather than finding a way to personally justify that with yourself, why not use your influence to suggest that someone else is hired for the position? Perhaps it’s someone you know and recommend, but in general, speaking up about the subject, being an ally, well that’s powerful.

— Sample: “You will not replace us” Chants of Alt Right Mob.
TR:

Is this call for equitable representation threatening?

When it comes to the voice of the narrator on films that are culturally specific, we’re talking about a small piece of the pie. The total number of films and television shows that are focused on BIPOC stories is still a fraction of the total films made today.

White narrators get plenty of work. I don’t see any reason for them to feel threatened by these comments.

This issue is just one part of a much bigger problem.
It goes beyond films like Black Panther or In the Heights. Shows like Insecure. It goes beyond the voice. It’s about the visibility of Black and other people of color

That’s seeing and acknowledging color on screen and stage. It’s recognizing that Blind and Low Vision includes people of color.
— Reverse Dream Harp bringing back to present

TR:

Let’s be clear, I’ve come across other shows with insensitive casting; Abbott Elementary, Reasonable Doubt and others.
But this isn’t about individual shows.
It’s not about my individual point of view,
it’s not about one narrator.
This is about centering the Blind community in audio description.

(The full community!)

— Law and Order scene change sound

TR:

When I finally decided I had to speak about this here on the podcast, I knew I needed to hear from Black women.
I’m Black, but I’m also a bald man!
I like to think it’s still by choice but let’s be real, my options are limited when it comes to my crown.

Hair tales isn’t something I would probably choose to watch on my own.
However, I could see where I’d watch this with my daughters.
I’d enjoy sitting back and listening to their comments as they agree or disagree with one of the experts or explains something to me about a particular hairstyle.

today’s conversation is specific to the audio description.

audio description should always center Blind people.

I needed to hear from Black Blind women.

So I put the word out that I was seeking input on this topic.
to be clear, I was looking for opinion not a specific point of view.
If someone wanted to speak in favor of color Blind casting for AD narrators, cool, bring it.

I didn’t get much in the way of feedback. I shouldn’t be surprised.

I’ve come to recognize phases we go through as consumers of audio description. I’ll use my own experience as an example.

— Music Begins: An upbeat dance track…

Phase 1: Shock

“What? I can experience movies again?”

Phase 2: Denial
“I don’t know, this is probably going to suck. How will this work, someone explaining what’s happening? Augh! I don’t know.”

Phase 3: Bliss, Over Appreciation

How was the movie?

Oh my goodness! It was so good, it had audio description!
I can’t say anything bad about this film because it has audio description.
— Fades down while talking continues

Phase 4: Back on Earth

How was the movie?

Two thumbs down! I’ll never get those 90 minutes back.
— Fades down while talking continues

No longer are you easily entertained. Access alone isn’t cutting it.

Phase 5: Critical

How was the movie?

There was this one scene that stands out to me. The production is incredible.
— Fades out to an enthusiastic monolog…

TR:
Considering the fact that AD honestly hasn’t been that accessible for that long, I imagine there are a lot of people in the early phases.

— “It’s a man’s world”… James Brown

Let’s be honest, I have some privileges in this world.
I’m a straight cisgendered man. I don’t have all the privilege afforded to my white brethren, but I do recognize those within my reach.

— Roland Martin Clip:

Roland Martin: Recent study shows the most abused group on social media, Black women and women of color.
Jennifer Farmer: So what we’re seeing is pervasive attack. If you’re a Black woman and have a social media account, if you’ve been on Twitter, chances are you already experienced abuse. Eighty-four percent of the tweets that go to Black women contain some type of abusive or harassing message. The other thing that we’re finding is that if you have the courage to state your opinion, you’re also going to be attacked.

TR in Conversation with Casandra:
On that note, if you ever get any sort of pushback from this episode, please let me know.
I don’t want none of that going on.
Casandra:
you know, it’s fine.
I’ve had people give me pushback for certain things that I put on Tik Tok.
I have like, nearly 9000 followers on there. Honestly, people are gonna have their opinions
I don’t care.

TR in Conversation with Casandra: 22:45
Okay, there you go.

TR:
No one should have to deal with harassment, bullying or threats for their opinion. Especially when we’re talking about fairness and equity.

I’m more than willing to listen to contrary opinions but I’m not interested in racist nonsense.

If you have anything to say, please send it my way.
ReidMyMindRadio@gmail.com

— Sample: Sesame Street “Ok all you cats and kitties, it’s time for a little addition. Can you dig it! Here we go. Now! Adding is putting together! Mm.”

TR:
Factoring all of this into consideration, perhaps it helps explain the lack of public engagement and critical feedback on audio description.

— Sample “You got the mic… use it!” Ice Cube

I’m sure there are many Blind people who for them, this isn’t a concern.
Yes, they consume and enjoy audio description. Maybe they’re in that Bliss phase – just so happy to have access.
I don’t fault them for that because I understand the history of not having access to content.

Some people may think this is just a Black issue. A POC issue.
Meanwhile though, all AD consumers are affected.
The white washing of content denies all AD consumers access to a more authentic experience.
And isn’t that what we want?

(I guess it depends on how we define, we!)

— Music Begins: A bright, chill Hip Hop beat.

I want to send big shout outs to;
* Casandra Xavier AKA Caspher.
You can find her on Tick Tock.

Casandra:

At Caspher 31 CASPHER 31
On Instagram Cassandra dot Xavier(Spells out)
For those that can see. You want to look for the profile picture of a black lady wearing a crop top sweater standing next to a boxing bag, flexing her muscles.

TR:
Uh oh!

To all my sisters who shared my request for input as well as some others who talked to me for this episode. Your voices may have not made it into the final edit, but you were in my mind throughout the production.

— Airhorn!

You know you’re all official members of the Reid My Mind Radio family!

You too Tansy! Family can disagree, but I believe in leaving a place at the table to have a conversation.

You know, you too can be Reid My Mind Radio Fam!;
Subscribe or Follow Reid My Mind Radio wherever you get podcasts.
We have transcripts and more at ReidMyMind.com
Just remember, 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:

Greetings Reid My Mind Radio Family!
Today, I’m bringing you a bonus episode.
As I mentioned in the first episode of the Flipping the Script series,
What We See, I’m sharing slightly edited versions of the full conversations I had with
the three guests; Carmen Papalia, Collin van Uchelen and Andrew Slater.

First up, Carmen Papalia.

Before we get into this conversation, I want to note
I’ve heard from a few that you enjoyed the conversation around hallucinations for various reasons.
I’d love to hear from more of you so as a reminder,
you can always reach out to me via ReidMyMindRadio at gmail.com.
One of the best ways to support this podcast is to tell a friend, a stranger or even an enemy.
I bet if you share the podcast with an enemy, they will immediately be eternally grateful to you and no longer an enemy but rather a dedicated friend for life.

That may or may not be the case, but you should still tell as many people as you can to check out the podcast.

Remember it’s available everywhere you find podcasts

The trick is spelling it properly…
say it with me….
R to the E I D!
— Sample: “D, and that’s me in the place to be”, Slick Rick

TR:
Like my last name. But first, you know how we do!
— Reid My Mind Radio Theme Music

Carmen:
My name is Carmen Papalia. I’m a non visual social practice artist with chronic and episodic pain. I am calling in from the stolen land of the Musqueam, Squamish and Tsleil-Waututh people, where I was born and live as an uninvited guest. I’m on land that’s colonially known as East Vancouver. I’m white with an olive complexion, I have black hair, I have a beard. Today I’m wearing a green will cap, a pullover sweatshirt that’s gray with I think green white LED ring that says MIT on it. I was just at MIT, giving a talk as part of a conference called altered access through the list Center at MIT.

TR in Conversation with Carmen:
Can you give me a little bit of description of your at of your work in general,

Carmen:
I started making work maybe in 2009. And that was even before I thought of myself as an artist, what I was doing, then I think I’m still doing now. It was at that time performances that I was doing to better understand my own position as a disabled person. I started just doing these, what I called experiments at the time, when I started using a white cane and when I started describing myself as disabled, to better understand how those terms and how the white cane positioned me also like what that meant in terms of my position in my community and how that changed. Now I make socially engaged artwork that addresses my own access, and then also how people who are disabled have agency and decision making power in the context of institutions. I do a lot of fun sort of performance work, where some of which I’m like, replacing my cane with different things and then trying to navigate a public space, usually an unfamiliar place. So one of my performances is called mobility device, and I replaced my cane with a marching band that I use to navigate the city. I also have replaced my cane with a megaphone in the past, instead of using the cane, use the megaphone to identify myself hail support from passers by. More recently, I’ve been like doing large scale installation work and curating. I just had a show at the Vancouver art gallery that I curated with a bunch of guest artists. I made this like large scale like 20 foot tall installation, that was a gathering place for folks in the disability community. That piece in particular was meant as a space where people could sit with material from the disability filibuster against Bill C seven, which was the medical assistance and dying act and Canada that was passed in 2021. That’s sort of an organization that I co founded with a friend Mia Susan Amir, who’s a Vancouver based theatre producer. This organization addresses leadership in the arts for folks in the disability community, with a priority on the access and opportunity for ultimately marginalized and BIPOC folks within the disability community.

TR in Conversation with Carmen:
You sound like you were still struggling saying that you’re an artist. What were you doing before 2009?

Carmen:
(Laughs)
Well, I so I got my English degree. Before that. And yeah, I guess I saw I only started studying, like art that like the kind of art that I’m making. Now, in grad school. When I, I went to Portland, I moved to Portland, Oregon, and went to Portland State University for grad school and studied art and social practice. Before that, I was studying English and Vancouver, and poetry. And before that, I was an animator. I was like an illustrator, and did like character design. This was when I had more vision. So straight out of high school, I took like two years of animation. And that was my path to become like a character animator, or do set designer character design for animation.

TR in Conversation with Carmen:
So you were an artist then? Did you feel you were an artist at that point? (Laughing)

Carmen:
(Laughs) I don’t know. I probably said I was an artist back then. I was more into the craft of illustrating, that’s something I don’t do as much now. It’s a different artistic practice that I do miss, I guess. Like I really started claiming it and saying like, I’m an artist when my career became viable. And I was like, oh, okay, the floor is not going to collapse beneath me. I can maybe make rent make my you know, pay my bills doing this.

TR in Conversation with Carmen:
Yeah. I kind of latched on to that when I heard it, because I don’t think I’m an artist, but I’ve been struggling over the last whatever years and just kind of referring to myself as a creative person. So to hear you say that it’s like wow. It sounds like you’ve been doing art for a big portion of your life. I’m real curious about how you would go into the performance. Like that was your initial thing. What made you say? I’ll try this?

Carmen:
I think it was specifically because when I started using a cane, the people in my life told me like, oh, there’s a lot of people looking at you and looking at us now, because you have this lightning rod, you’re carrying lightning rod for attention, and not that I’ve ever been struck by lightning and holding a cane. First, I was very uncomfortable that a lot of people were looking at me. But eventually I just started to think of them as like an audience. I just was like, Okay, if people are already looking at me, what is the message that I want to send them? Maybe at that point, I was just wearing snarky T shirts, sending messages that way. I eventually I started modifying my cane. My first modification was I was using a rolling ball tip on my cane. I mean, it’s smaller than a ball for billiards. I had my girlfriend at the time, paint an eyeball on it, cover it with resin. I would just like kind of drag this I started modifying the cane because I wasn’t comfortable using the standard issue cane because I felt like it was attached to the institution that I got it from where I wasn’t quite aligned politically with the institution that I was seeking service as I eventually made a 15 foot cane just to talk about how I felt like the cane was like a cumbersome symbol. Around the time I started using a cane. A lot of people would just like mistake it for 100 different things, or hiking stick or pool cue tripod wept in of some kind of

TR in Conversation with Carmen:
golf clubs, I got that one before.

You had sort of the guts, kind of to go forward with the performance…When I first became blind, and I was told that everybody staring us might be out my family. I had decided, yes, well shoot, why don’t we get sponsorship? Maybe I can where we can wrap our car in something. I said we all wear some sort of clothing saying sponsored by

Carmen:
when I started using a cane there’s this like skateboard company that was really popular called Blind. And I remember wearing their T shirts. Because the Grim Reaper with the word blind on it. That’s a good idea. Like yeah, sponsorship, I think there’s probably an opportunity there.

TR in Conversation with Carmen:
Talk to me about your idea of working non visually, you’re specific about what non visual means.

Carmen:
I don’t call myself blind. I don’t use that word to describe myself. I think it’s because of a very specific reason. Maybe I blame this on being a creative writing student. I was writing about my new access to the world. I just looked for synonyms for the word blind and just to like, you know, kind of unpack this term. And all of the words that came up refer to this lack of awareness, limited understanding, ignorant in perceptive, senseless, I made this like simile list poem. I just thought like, culturally, this word means uninformed. Seeing is believing like, we’ll no it when we see it. This association between knowing and seeing, it really is something that has been embedded in culture for centuries, I really wanted to subvert that a bit and just explain to people that no, I’m someone who uses their non visual senses. I’m someone who has prioritize the access that I have through my non visual senses in my life and relationships. And that’s what’s meaningful to me. If we didn’t live in a visual culture, I wouldn’t have to use that term non visual, I think anybody really should just be accepted for the way they learn whatever the orientation of their body or senses or whatever their behavior is, I guess it was at a time where I was trying to like, trouble like common perceptions around blindness. Blindness is often equated to like complete darkness. To, which is not the case. I have, I would say like an extra visual experience as someone who’s non visual. What I’m talking about right now is my visual hallucinations, something that I don’t often share about but I think a lot of other friends who are blind or low vision and visually impaired, like really can relate to as well. We don’t see pitch blackness, many of us what we see is very bright and like stimulating and I would say like, for me beautiful and spectacular.

TR in Conversation with Carmen:
I want to talk about that. But I got to ask you a question. The way you describe the word blind. I’ve heard folks talk about disability in the same way. But you use disabled?

Carmen:
I do.

TR in Conversation with Carmen:
Is there a difference?

Carmen:
Yeah. Okay, so for me, the word disabled is like I use it because I’m signaling my politics. I kind of get behind this idea that disability is socially constructed. The things that are barriers for me are social, cultural and political conditions, their cultural bias, discrimination, the fact that it’s harder for people like me to find meaningful, accessible employment, the fact that people like me have a hard time finding medical care that works for them. These are the things that are barriers, the condition of my body is a fact I can’t change the condition of my body. I also have like two degenerative conditions. So I really can’t change the condition of my body, it will continue to change. But what I can do is live in a community where the kind of care that I need is understood,

TR in Conversation with Carmen:
You’ve probably met a lot of folks who don’t use the word blind, but it’s really about them sort of running away from blindness. Yeah, you didn’t do that you took on a non visual way, you really leaning into that whole non visual, yeah,

Carmen:
I don’t think that I lost my sight either. Something opened up for me, when I started putting value in the non visual, my world opened up. That’s what I’m continuing to explore in my work in my writing and through the various relationships that I have with other people who want to be part of that world to some of those people are blind and low vision. But some aren’t. I do this project of performance where I and I’ve been doing this since 2010. It’s my first like, exhibited artwork. It’s a walking tour, where I take groups, my largest group has been 90 participants, they all line up behind me link arms and shut their eyes, and I take them on an hour long walk through a city on a route that I’ve mapped, and that I’m familiar with. The whole point of the walk is to exercise our non visual senses, something that we don’t dedicate time or intention to, I don’t really think of it as like, Oh, this is simulating my experience of blindness can show people how it feels to live in a visual culture as someone who’s non visual just by asking them to shut their eyes for an hour. But really, I can invite them into non visual space practice using their non visual senses. That walking tour is really about the support network that coalesces when, like a group of people come together around the same activity, the ways that we care for each other when we need to, you can imagine this group of 50 people inching across a busy street in New York, and

TR in Conversation with Carmen:
holding up traffic.

Carmen:
And sometimes we do get people honking at us because it’s as much about the ways we navigate that it is how we manage navigating public space with their eyes closed.

TR in Conversation with Carmen:
With this podcast, I’m always thinking about those who are new to blindness, new to disability, I know that somebody new is like, I don’t know about all of that. I don’t know if I can, you know, escape the visual world? And out of that. Is there an example of something that someone could sort of try on their own to even test the non visual way? Something that would give them a little bit of joy?

Carmen:
Yeah, yeah, the thing that I did was learn to be an active listener. So I was an undergrad student at the time. And I took this course in acoustic communications. And a lot of our assignments were about just going into public spaces and listening for a period of time and writing a sound journal about what we heard every sound event and quality of sound that we heard. And you can just learn that through practice. And this is how that whole field of study emerged to it was really about like a group of researchers that were going out to document the soundscape. And I mean, that word didn’t exist. Or it was soundscape came out of this whole research. But really, it was just going outside and listening and continuing that practice. I think you learn a lot about what is there just because you’re focusing and making space for it. And that’s how I really started to love this new perspective, say, finding places in the city that I liked being in because I liked the way they sounded. And that’s just one example. I think you can do things with your tactile sense to some of the times that I feel like I love being me the most is when I’m in my neighborhood, maybe beautiful kind of warm summer evening and I’m using my cane. Usually when I want to be in my body, I shut my eyes when I’m walking, just being able to explore our surroundings for me just through what I can hear and feel. I feel very free, I think it’s because I’ve made the choice to value that space. That’s the space that I want to know better. And I can do that in these ways. And I’m

TR in Conversation with Carmen:
going to assume you don’t compare in your head, in your mind, one experience to the visual experience.

Carmen:
No, not really. I receive a lot of description of art in my job. So like as an artist, and I think I have like a really great situation that I’ve set up for myself where like, usually when I’m going to art gallery, and artists or curators describing things for me, which is nice, or like a describer, someone that I enjoy their approach. It’s usually pretty good description that I’m getting, but I don’t equate it. I don’t know, it’s complicated for me, because I think in some ways, the description is the artwork. But it’s also an entry point to it. It creates something, some relationship flexibility, where I can understand these words, as the thing itself, we really are just interpreting through our physical senses, usually, anyways, we’re subjective. If you’re inspecting something visually, you’re interpreting that and then reporting to whoever about it. That’s the same thing that’s happening when someone’s describing what they’re seeing to me. And, and I’m, I’m adopting it as a version of truth. It’s hard to explain, but I do think there’s some magic in describing something. There’s been times where people have described artworks to me and sent me like a description email. I’m like, I feel like I received an artwork. Oh, wow. Like we didn’t even have to like steal this from the collection. If I can send it to someone else now.

TR in Conversation with Carmen:
Description is the art. That’s it right there.

Carmen:
Totally.

TR in Conversation with Carmen:
Let’s get into what you call your apparitions. hallucinations. Could you describe them first for me? Give me an example of what you see.

Carmen:
What I’m seeing right now are… they’re sparkly, or twinkly, it’s like water, they’re vibrant. They’re colors like blue, and purple, and green with highlights of orange and yellow, and red. Sometimes there’s objects, there’s different layers to so like I just described the layer that’s occupies my entire visual field. But there’s also these visual events that happen to on a different layer. Some of those have been happening to I’m describing, they take shape, like distinct shapes, usually. And some of them are like what I call a backward see, it kind of swirls around to my visual field. Sometimes it’ll patrol I guess. I’ve been writing descriptions of the various hallucinations that I see the see one, one of the ways that I’ve described it and the way it moves is as a patrolling manta ray, it kind of just like swims across my visual field, and then goes back and forth, and back and forth. And then sometimes I see this one hallucination, maybe like three times a day. And it’s a spiral it just like spins, maybe for like, I don’t know, five seconds, and then it kind of like just flies away. I have so many different kinds of hallucinations, though. And like I’m always seeing them. And they have gotten more amplified over time. When I was young, they weren’t as vibrant or prominent in my visual field. I remember them just being this like fuzzy vibration that I noticed some times when I was looking at a wall. Now it’s just very engaging and animated. I’m at a loss for words, sometimes. There’s a lot of similes and metaphors. But there’s not enough words to describe what I’m seeing. And I do call them apparitions playful spirits, especially this spiral like this is this is like a guy that I like seeing a couple times a day. I enjoy them. I really do. Especially when I get to like talk to other people about them. And they’re like, oh, yeah, I see that too. And hey, did you notice this? And then I’m like, oh, yeah, I did. And then like you kind of develop your vocabulary. Develop your understanding of it. Yeah, I’m fascinated with it.

TR in Conversation with Carmen:
You mentioned objects. Were those what you described or is that something different?

Carmen:
Yeah, that’s one kind of hallucination that I experienced. That watery sparkliness is like one layer and then on top of that, are the objects that I’m calling. Yeah, yeah. So sometimes the quality of my vision right now, everything blends into everything else and unless it’s like high contrast, right now I’m looking at my window. It’s light out. I can tell that there’s a brightness and it’s kind of like a Big blobby shape, I can tell that there’s more brightness there than in the rest of the room. But the rest of the room like I know, my, my desk is in front of me, and there’s things on my desk. But it just everything is blending into everything else. The layer of hallucination is kind of a filter over, whatever I’m picking up in terms of light and shade perception.

TR in Conversation with Carmen:
Was that annoying in the beginning?

Carmen:
I feel like it started happening more and more when I had already realized or like accepted that I didn’t have functional vision. Like I didn’t have usable vision. I felt like I started using a cane before I needed it. But then, eventually, I was like, I can’t use my eyes anymore. My vision is unreliable. So how much should I rely on it? Yeah, like it was really a choice. I stopped using my contacts. And I was like, What’s the point of using contacts, I’m just getting the smallest fragments of vision. They’re not super usable. I don’t want to hang on to this. I was also having like headaches and migraines because of it. So I kind of just transitioned, it almost relates to my closing my eyes when I’m using my cane sometimes it’s like I just wanted to focus on the other information.

TR in Conversation with Carmen:
Were you sort of fearful of talking about these for, you know, how people would judge you ?

Carmen:
know, I mean, I think the first person I probably told was my family, because like the condition is hereditary. So my brother has the same condition. And he also sees these kinds of playful aberrations, or at least has some effects similar to what I have. We talked about it. And then I think it wasn’t until like I moved to Portland and went to grad school that I met another person with RP. She said that she enjoyed these hallucinations. And I was like, Oh, me, too. And then years and years later, I met Colin, who, we started working with each other. And I guess I didn’t even know like about the term Charles Bonnet syndrome. Colin was offering terms that he heard from other people. The first thing he told me was scintillating, Photopsia, and I was like, well, that’s a mouthful. I had to like practice it, because it was such a twister. Leading made sense to me. I’m like, Yeah, there’s definitely some scintillation happening here. And then we just started talking about it more and more. And I learned that he had his own words for what he was seeing. And then I met other people like Andy, who had his own words for what he was seeing. And some of the things we saw were the same. And that just like really was affirming and exciting. I was reading up about Charles Bonnet syndrome, the history of it, it being like something that grew out of like this psychiatrist documenting the hallucinations that his grandfather was having during vivid vision loss from a sighted perspective, and just through his grandfather, like describing them. And I was like, wow, I want to describe my own. Everyone that I know who has this condition has their own way of describing it. And I learned, you know, like what I call backward see, and he calls a Cheeto. And with hives, like, that makes a lot of sense. And, you know, I can not think of it as a Cheeto now, but I also think of it as a glow worm too, because that’s what Colin calls it. Yeah, it looks like all of those things. And it’s, it’s this impossible, kind of like color you might see at the center of a firework. I think I didn’t really know how to describe it before I started talking to Colin about in talking to Andy about it.

TR in Conversation with Carmen:
Usually when I read about Charles Bonnet, the images are pretty scary. Most people report that this scary, like they’re reported as little monster creatures.

Carmen:
I have had hallucinations that have taken the shape of people before and figures. I haven’t thought of them as scary because I don’t know. Like, I know what they are. I mean, I, I still feel like there’s something about like, the visual and imagination that is also activated when I’m having these two. So like, I’m still learning like, what, what affects this condition or these hallucinations? What makes them more vibrant? Does it happen when I’m more tired or? I mean, I know it definitely happens more when I have cannabis that really amplifies hallucinations, depending on what I’m using, like I want to learn the conventions of the kind that I experienced. I don’t know if it’s Charles Bonnet, I haven’t talked to my doctor about this. I feel like I’m really into like exploring this with other folks. That Hey, experience it.

TR in Conversation with Carmen:
I totally get that. And definitely no judgment on the doctor because my doctor told me it was soon after I had a surgery to remove the eye. Somewhat soon after that, I started noticing it and I was like, wow, what is what is this? And so I told him about it and he was the one who told me Oh, that’s, that’s Charles Bonnet Syndrome. And then I was reading on I was like, this doesn’t sound like what I have. Mine is like a bunch of shapes. Sometimes they’re connected. Sometimes they’re not or they’re connected in certain ways. Like Finley, Colin describes something like islands, I just say these random shapes, and they’re on top of a solid black. All these shapes and colors are sort of on top of that. You can’t necessarily see any depth. But you know, I say they’re on top of it, because that’s what it seems like to me. They’re constantly morphing. But I don’t have any movement with them. It’s more like a morphing. I do sit there sometimes just really kind of focusing on it. And then it’s changed. But you don’t see the movement in it. It’s kind of hard to describe, but it’s changed. You know, when they’ll do like in PowerPoint, they do like a wipe or a dissolve and then something else just appears and it’s almost like that, but it’s really fast dissolve, so you don’t see it happening. That’s kind of the best way I can describe that. Yes, it’s absolutely tied to how I feel. If I right now took like a little quick 20 minute nap. When I wake up from that 20 minute nap. Ah, it’s so beautiful because it’s so vivid. Really? Yeah. Because the black. The black in the background is like just vivid black, it’s beautiful. And then all of these colors are just so. So vivid, goes from the haziness. And then it just boom, it’s just bright. And it’s just it’s just really nice, you know, but again, no movement. Yes, it is the cannabis can help get some movement because I experienced I was like, Okay, I’m gonna try some edibles. The edibles would bring out these sort of really bright, almost flashing, maybe a couple of pixels because it’s very it can be very pixelated what I’m seeing to this, this, I can see the pixels right? There will be like these little lights and then they’ll film the flash and then the flash. I’m like, oh shit, they’re flashing like, this is really cool. Like, I enjoy that, that. And then the other thing that I know if I’m tired, I’ll start and focusing on green. Even if green is nowhere near I’ll do that. Oh, wait, there’s the green. And so like in my house, if we’re sitting down watching the TV, my girls would say Daddy, do you see any green? Because they know that when I see green, I’m going to sleep. That’s really, so yeah, that’s like a little bit of mine. But do you focus in on? Like, sometimes I try to. I think it’s called like the Rorschach inkblot thing. Oh, yeah. Do you try to find sort of what you’re seeing in these do you sort of project like, what am I seeing in this? What is this?

Carmen:
I don’t try to interpret it necessarily like, oh, is this an omen thing or but I do really enjoy seeing it move. And so for me like it’s, I’ve described it before like an animated oil painting from space. It definitely has like an underwater quality to it to bioluminescent oil in water, maybe with some food coloring in it or something like that. It’s quite animated and dynamic for me. With cannabis though there are different varieties of cannabis that make my hallucinations take on different things. I guess this is something I’m trying to explore with my brother right now who grows cannabis for me. I also have pretty severe pain condition. I grew up spending a lot of time in hospital. It’s a pretty painful condition. It’s degenerative as well with bone pain. But what has worked for me, especially as a replacement for narcotics has been cannabis, as well as some other medications. Right now. That’s one of my main medicines is cannabis and especially what my brother is able to grow for me as my caregiver grower. This is a volunteer role through Health Canada, where we register for a growing license. He produces a certain amount for me and we make concentrates out of it and various products that I use. While it helps me with my pain. It also like engages me with my hallucinations. He’s developing a breeding program for cannabis. So we might land on and develop a staple variety that the whole point would be to activate my hallucination. Last summer we had this outdoor organic grown we grew this variety called LSD. I guess there are a handful of strains that are purported to have psych della effects are like extra psychedelic effects. One of those has the name LSD. It’s from Barney’s farm in the Netherlands. So we got some seeds, we grew some plants, it also happens to be a good strain for pain. It’s a pretty heavy hitting strain, even just vaping it, I experience intense colors. My hallucinations take on very vibrant, colorful quality. And now we have this stock of flour that I’ve been making concentrates with. And so I’ll dose myself with coconut oil. And I kind of experiment on myself in terms of like what this does to my hallucinations. And I’ve had like some amazing effects. Like you’re seeing coming back from like a nap or from sleep, I see like kaleidoscopic, shifting patterns. It just really amazing. The plan is that me and my brother going to mash up two strains that are purported to be psychedelic, and then kind of from that develop our own strain once we highlight what is the trait that is really affecting here? Because you know, there are many, many strains that don’t have this effect on my hallucination. Certain ones do. And I just saw something that just one of those manta rays.

TR in Conversation with Carmen:
(Laughs)
Oh. If someone who does not have these, if they were to partake in that strand, are we saying that they would see these things?

Carmen:
I haven’t found anyone yet. I have given a bunch of the oil to people that I know. And only people who have this condition have said that it has an effect on them. I haven’t found someone who is sighted who’s experienced this. I do have like two people. Now, hopefully, there’s going to be more in the future that I can share with two people with the same eye condition, though. I haven’t been just like, you know, kind of putting the wide net out there and saying like, Hey, does anyone one want to try it?

TR in Conversation with Carmen:
I’m sure you’d get a lot of takers. Okay, I have my very, very, very nice scientific approach to this. And so I’ve been thinking about like, is this something internal trying to communicate with me? Am I suppose to gain some meaning, I see the relationship between me and things that are going on. Like I said, when I’m tired. Seasonally, what I see is different. As we get into the warm weather, the colors are different, the colors are fruity. And so my red is strawberry red, yellow orange is more of a mango. I don’t think I’m making it up.

Carmen:
No, I really love your associations to those colors. It’s frustrating, like when you ask like, Were you worried to tell anybody about this? I’m past that. I’m just like, I’m not making this up. This is my experience. I’m happy to learn more about it. And I think it’s lovely that seasonally, you are seeing these different qualities, and also just that they’re associated with the time of harvest for fruit. That’s really beautiful. I just wanted to like affirm you, because you’re like,

TR in Conversation with Carmen:
No, no, I appreciate. You know what it comes down to, when you’re in a gallery, someone gives you a description of something, you trust what they say, I feel like it’s hard for people to probably trust what I’m saying. Because they have no experience with it, they can’t verify it. A bigger thing about this is that with audio description, we as blind people trust what we’re told. And when blind people are trying to be involved in audio description and be involved in this field. I don’t feel we’re trusted. We’re always questioned trying to get in as a narrative, most definitely trying to get in as a writer. Now there has to be this approval. There’s this process now that folks are talking about sighted folks talking about in terms of certifying and making sure people quote unquote, meet a standard to be able to do this. I think about these things. And when I talk to people, I’m feeling that same thing. I’m not going to stop talking about it. If you don’t believe me, well, f*%! you.

Carmen:
F*%! certification. Yeah. What is this about where we’re not trusted in describing the things that we’re experiencing? I think it has to do with dominant cultures privileging of visual experience, and the fact that the non visual doesn’t hold much value. I don’t know why we think that vision isn’t subjective. I think it’s just as subjective as describing the sound of something. For example, we’re all going to make our own associations to what we’re seeing and what we’re hearing and feeling when I am in a position where I’m not being trusted. And I’m sharing In my truth that really triggers me. I mean, this comes from me having medical trauma and being in hospital and needing medicine, and maybe there’s an obstructive nurse or physician, so me not being trusted, when you’re really putting yourself out there in terms of what you’re experiencing or what you need. I just question that and why it’s happening. Still, ableism is embedded in our culture. I think that this space, what you’re experiencing what me Colin and Andy are experiencing as it’s a place that I want to spend more time in, I think it’s improved my life, just saying that I’m a non visual learner, and, and that I’m a non visual artist, and getting to spend time in the non visual and understand my world on those terms. If I didn’t have the ability to do that I would be really depressed. I don’t know what I do. And I have that through art. I have it through community and disability culture. I guess that’s what I wanted. When I heard you say, I don’t know if they believe me wanting to affirm you. Because like, there’s so many ways that we’re invalidated as disabled people, questioning the knowledge that we have, because of our unique perspective or point of view, or embodied, or sensory reality, questioning the validity of that. It took a long time for me to say that I love being in this body. I just think that we need to tell each other that Yes. I want to know more about what you’re experiencing, from your point of view. And what does that mean? How does that change mine? Especially if you’re considering and in relation to dominant culture? Free me like this non visual position, it changes everything, but allows us to question why we value and privilege the visual as dominant culture does. That just really struck like a chord with me, I think it’s one of the most valuable things that we have is like what we can learn through our unique point of view.

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

Where in the beginning, I found it very distracting. It was really distracting for me. There are times when the predominant color is white, and it’s so bright, and it hurts, I have to really focus, I have to squeeze the muscle that remains and to try to get it to move. But now it’s… what would you say if you woke up and they were gone? If you didn’t have them anymore? What would your reaction be?

Carmen:
I’d have a sense of loss, probably I would be like where are my spirits where are my friends. It’s a new relationship that I have with my body. It’s something that I’m seeing all the time. It provides me comfort sometimes laying in bed in a dark room late at night, and I’m watching it, it’s dancing for me. It’s occupying my mind, and it’s engaging, and it goes really well with music. Oh, I think it would be sad if it was missing. That’s the other thing. Like when I had to see the ophthalmologist like throughout my life, it was always like, okay, in five years, there’s going to be a surgery, there’s going to be Q or something. Something’s every five years and then you kind of realized like when you’re a teenager that like, it’s not going to happen. I don’t want a relationship to my body or the world around me that doesn’t let me question what I get to question through what I have now.

TR in Conversation with Carmen:
Yeah. Tell me about the music. You just said it goes well with music.

Carmen:
One night I woke up maybe it was three in the morning or something. And I just I still had my headphones on. I guess like I had put Moog Music onto a synthesizer music on Spotify and randomly this album came on. I think it’s Dominique Dumont slept in sound artists, they made this soundtrack for a 1930 silent film, I woke up to this soundtrack. And it was very much a soundtrack for what I was seeing in terms of my hallucinations. It was beautiful. I can send us here but

TR in Conversation with Carmen:
yeah, please, please do.

TR:
Come on over to this episodes blog post on ReidMyMind.com and i’ll link you to the tracks available on Youtube.

TR in Conversation with Carmen:
The only connection is when I’m working with audio. That could be another time where things become clearer. There’s some clarity that happens and like I could be adjusting EQ and sometimes I start to say, Okay, I’m gonna go based on what I see. And so I’m adjusting. I’m like, Okay, this is this feels right now because this is, this is becoming clearer.

Carmen:
That’s great. Yeah, it’s

TR in Conversation with Carmen:
Wow. This is a lot of fun, because I’m telling you I tell I tell my family about it. My immediate family, my wife and my daughters, I don’t think I’ve ventured out and told anyone outside of my home about I mean, I mentioned that Oh, I got Charles Bonnet. I know I have. But that’s it. I don’t I don’t get to go into

Carmen:
another condition. Or other, right? Yeah, you tell family, the people closest to you? Because like they’re the most likely to you believe you and like and yeah. And yeah, I think I think that’s, I love how it’s functional for you in a certain way to even as a system for telling what time of year it is, I love that. It’s like your calendar, it serves a function within your audio production, it tells you when you’re tired. I think this is something that’s connected to disability art, and just disability experience in general. And a practice that like productively engages with disability, we are always in some way trying to make meaning of these experiences. Because what dominant culture is telling us is that there’s no value in that or you have to take this pill, procedure, etc. To get rid of that the people who want to explore what it means to live non visually or live as someone you know, even with pain, I actually think my pain experience is generative to like it allows me to make long term trusting relationships with people that are based in care. I share a lot with people, I open up a lot with folks. And because of it. Of course, there’s terrible parts to it too. But I think it gives me a lot. I think these hallucinations do as well.

TR in Conversation with Carmen:
That’s awesome. And helpful. I ask you about the weed in terms of other people like, Would you want other people to sort of be able to see what you say, is that sort of the end goal? Or is it just about inducing that and enhancing it for you and others who share this with you?

Carmen:
Yeah, that’s where it starts, for me and other people who experience it too. If it was only for me, it would be enough, but I want to share it with more people, I want to share it with other people who experience it, too. And I guess for visual people too. If I could create a new psychedelic, that I can share with people that can have the Inspire them or be beneficial in their lives, these hallucinations have a presence, they definitely make me feel less alone sometimes. And that’s an experience as someone with pain. And as someone who just has a sensory disability to that loneliness, it’s a very common experience within the disability community, because it’s hard for us to find each other literally. Sometimes, we’re separated in impairment groups, separated from dominant non disabled culture. I think if it helps people address that isolation in any way, it could be good to share with anybody, I want to like make art from it. And I want to start with people like you, Colin and Andy, see what these hallucinations can, how they can maybe encourage us towards new,

TR in Conversation with Carmen:
Say your work with the weed produces, where anyone will sort of experience what you experienced, what would you call your strand.

Carmen:
My brother and I this project that we have where we are developing this variety, it’s called impaired. We’ve been invited into a show in Zurich, this fall, where we’re developing an accessible grow room as part of the show, we have just been exploring different strain names for the this train, my brother actually came up with one that I think is hilarious, and I would love to use it. He said tripping hazard

TR in Conversation with Carmen:
(Laughing)

Carmen:
he’s also low vision. So like, perfect.

TR in Conversation with Carmen:
(Laughing ) Nice. Wait so accessible. grow room.

Carmen:
So because my brother’s low vision, like there’s certain systems that he set up for himself different ways that he does things that are accessible to him, and he’s applied some of those to the design of our grow room. And so we’re just going to, like kind of go further on, you know, with that, that concept and produce a grow room that’s functional, it may not have things growing in it. But it’s going to be sort of a replica of the one that my brother designed and, and kind of with maybe more features when it comes to accessibility features for its Folks who are low vision and folks who have pain as well, so, and a lot, a lot of what we do with impaired to is really about like, I guess like people having the agency to produce their own medicine and especially people who are disabled? Yeah.

TR in Conversation with Carmen:
Wow. That’s, that’s, that’s fantastic. Yeah, it’s funny because there’s these, again, with the connection of what this episode is about. It’s like, you know, blind people getting involved in description, you know, it’s also about or it could be about, you know, financial maintaining themselves, right. And that comes out of Blind people working with description, and what you’re doing right now comes out of you describing your hallucinations.

Carmen:
And I’ll just say, like, my brother is, is an engineer. He’s like a heavy civil engineer working on like, logic. He’s a project manager in that field. And, you know, he, he is he is a anomaly within his field. And, and I think I, you know, there’s, there’s a lot of blind, low vision and non visual artists out there, too. But I think, you know, even trying to find a space where, like, what, you know, what space am I going to occupy given that this is a visual tradition? Yeah, you know, I think, yeah, I think I think there’s something to what we’re doing with this impaired project that is a response to, to that, you know, and maybe even a question that my brother’s asking with regard to his own field. Yeah, yeah. Wow. That’s fantastic.

TR in Conversation with Carmen:
So, where can people kind of stay up to date with the with everything you do?

Carmen:
CarmenPapalia.com may be updated soon. You can send an email to info at impaired project.com. Our show in Zurich. It’s part of a show called inter dependencies. And it’s going to go up at the beginning of October. This year.

TR in Conversation with Carmen:
Carmen, this was fantastic. Yeah, I appreciate this man.

Carmen:
Totally. Thank you, Thomas. So fun talking to you. You’re awesome!

— Reid My Mind Radio Outro
Peace!

Hide the transcript

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!

[Airhorn]

As always, I hope you’re enjoying the podcast.
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Make sure you’re subscribed or following the podcast.
We have transcripts and more at ReidMyMind.com
Just in case what I’m saying sounds a little blurry,
let me make it clear….
that’s R to the E I D!
— Sample: (“D! And that’s me in the place to be.” Slick Rick)
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— Reid My Mind Radio outro
Peace!

Hide the transcript

[Music begins, spacey sounding ambient music]

TR:

Picture a solid, black, background.

A full vibrant, glossy black.

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

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

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

Nothing and black are not the same.

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

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

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

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

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

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

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

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

— Reid My Mind Theme Music

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

## Charles Bonnet Syndrome

TR:

So what is Charles Bonnet syndrome?

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

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

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

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

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

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

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

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

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

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

— Sound of an object tossed and smashed.

Damn, medical jargon is heavy!

## Describing Hallucinations

— Music begins, ambient spacey vibe.

TR:

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

Here’s where it gets a bit tricky!

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

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

— Long pause

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

Carmen:

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

I almost feel like I’m at a loss for words sometimes, there’s a lot of similes and metaphors, but there’s not enough words to describe what I’m seeing.

I do call them apparitions and playful spirits.

TR:
Carmen Papalia from Vancouver Canada.

Carmen:

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

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

I’m always seeing them and they have gotten more amplified over time.

When I was young, they weren’t as vibrant or prominent in my visual field.

it’s just very engaging and animated.

TR:

(Excitedly)
His hallucinations move!

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

More on these apparitions, hallucinations, visions?

Collin:

Scintillating Photopsia.

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

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

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

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

TR:

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

Collin:

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

TR:

That’s Collin van Uchelen.

Collin:

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

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

Collin:

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

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

Collin:

yes. very much.

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

TR:

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

## Early Apparitions

TR:

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

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

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

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

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

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

Collin:

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

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

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

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

TR:

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

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

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

TR:

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

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

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

Carmen:

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

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

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

TR:

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

Collin:

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

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

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

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

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

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

Carmen:

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

It’s an Walking Tour, where I take groups, my largest group has been 90 participants, they all line up behind me link arms and shut their eyes, and I take them on an hour long walk through a city or on a route that I’ve mapped, and that I’m familiar with.

The whole point of the walk is to exercise our non-visual senses, something that we don’t really dedicate time or intention to.

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

Carmen:

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

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

— Sounds from a Vancouver Fireworks event.

Collin:

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

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

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

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

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

TR:

That’s sight and sound.
What else?

Collin:

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

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

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

— Music fades out

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

Wow. Yeah. And do you feel that?

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

TR:

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

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

Collin:

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

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

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

TR:

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

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

Collin:

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

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

TR:

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

He discovered alternatives to just the visuals.

Collin:

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

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

TR:

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

Collin:

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

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

TR:

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

TR in Conversation with Carmen:

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

Carmen:

No.

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

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

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

I think in some ways the description is the artwork

TR:

That’s it! The description is the art.

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

TR in Conversation with Andrew:

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

Andrew:

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

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

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

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

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

Andrew:

My pronouns are he him.

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

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

Andrew: 00:56
Point to the shirt.

(Fading out, the two laugh together)

TR:

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

Andrew:

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

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

TR:

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

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

TR in Conversation with Andrew:

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

Andrew:

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

TR:

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

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

Andrew:

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

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

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

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

## What am I supposed to do with this?

TR:

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

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

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

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

TR in Conversation with Collin:

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

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

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

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

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

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

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

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

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

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

## Trust & Faith

TR in Conversation with Carmen:

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

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

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

Wow, this is a lot of fun. I tell my family about it. My immediate family. My wife and my daughters, I don’t think I’ve ventured out and told anyone outside of my home about I mean, I mentioned that Oh, I got Charles Bonnet. That’s it.

Carmen:

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

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

And even as a system for telling what time of year it is. I love that it’s like your calendar, it serves a function within your audio production. It tells you when you’re tired.

This is something that’s connected to disability art, just disability experience in general a practice that productively engages with disability.
We are always in some way trying to make meaning of these experiences because what dominant culture is telling us is that there’s no value in that or you have to take this pill, procedure etc. To get rid of that.

the people who want to explore what it means to live non-visually or even with pain, I actually think my pain experience is generative to like it allows me to make long term trusting relationships with people that are based in care.

I open up a lot with folks and because of it, and, of course, there’s terrible parts to it too, but I think it gives me a lot.
I think these hallucinations do as well.

TR in Conversation with Carmen:

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

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

Carmen:

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

I don’t know why we think that vision isn’t subjective.
It’s just as subjective as describing the sound of something, for example, we’re all going to make our own associations to what we’re seeing and what we’re hearing and feeling.

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

TR in Conversation with Andrew:

What role does trust play in your process?

Andrew:

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

That’s whack.

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

TR:

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

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

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

Andrew:

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

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

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

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

TR:

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

These are my words.

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

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

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

Andrew:

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

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

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

Collin:

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

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

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

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

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

TR:

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

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

TR in Conversation with Collin:

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

Collin:

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

TR:

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

Collin:

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

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

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

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

TR:

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

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

TR:

Laughing fades out.

TR in Conversation with Collin:

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

Collin:

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

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

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

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

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

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

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

TR:

So what’s your choice;

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

TR:

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

Andrew:

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

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

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

It’s totally visually centered for that.

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

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

TR:

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

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

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

It goes beyond audio description…

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

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

Damn! Can I kick it?

## Engaging with our Hallucinations

TR:

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

— Music Begins, an ambient, lulling track.

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

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

Lying there, patiently waiting to see what was next…

(Heavy breathing as if asleep.)

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

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

Carmen:

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

I grew up spending a lot of time in hospital.

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

Especially what my brother is able to grow for me as my caregiver grower.
This is like a volunteer role through Health Canada, where we’ve registered for a growing license.
He produces a certain amount for me and we make concentrates out of it and various products that I use.
While it helps me with my pain, it also engages me with my hallucinations.

TR:

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

Carmen:

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

I see like, kaleidoscopic, kind of shifting patterns.

Me and my brother going to mash up two strains that are purported to be psychedelic, and then kind of from that develop our own strain. Once we highlight what is the trait that is really affecting here? Because, there are many strains that don’t have this effect on my hallucinations. Certain ones do.

And I just saw something, one of those manta rays

## Where are All My Friends?

TR:

Why not engage in what we’re experiencing?

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

TR:

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

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

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

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

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

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

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

I think it would be sad if it was missing.

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

TR:

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

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

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

And!

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

TR:

Man, don’t talk to me about real.

## Contact
# Contacts

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

TR:

Shout out to ;
Carmen Papalia

Carmen:

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

Collin van Uchelen, reach him at BurningTears.ca

Andrew Slater

Andrew:

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

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

— Airhorn

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

TR:

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

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

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

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

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

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

Carmen from Pigeonhole episode:

Let’s just keep the conversation going.

TR:

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

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

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

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

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

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

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

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

Hide the transcript

[sound of a person walking outdoors, then a car opening, keys going into the ignition, and a car starting]

Thomas:

I worry about the women in my life. As best as I possibly can,
[slow ominous ambient beat begins to fade in]
I encourage them to be security minded and always be aware of their surroundings. Especially when alone.
Follow what to me sounds like good advice, such as, try not to have a need to get gas at night, especially at an isolated station.
Always be on full alert, when in mall or store parking lots.
Whether the various stories that circulate are true or not, I encourage my ladies to be mindful. Be on the alert, if there’s a van parked next to you.
Don’t stop to pick up what appears to be money on the ground. It can be a trap. Yeah, even if it’s $100 bill.
These suggestions just don’t apply to women. But the fact is that human trafficking, sexual trafficking does predominantly affect women.
I thought we should talk about it here on the podcast.
If conversations referring to physical or emotional violence or triggering, perhaps you want to skip this episode, and go back in the archive for something lighter.
However, this episode is specifically about the importance of being educated as a means of prevention.
This is not about sensationalizing or trying to shock the audience. I’ve been mindful and intentional about what is included
I’m Thomas Reid, welcome back to read my mind radio.
[the car stops, keys are taken out, and a person closes the door as they begin to walk]

Reid My Mind Radio Intro music

Sounds of an indoor cafe or restaurant.

Adrienne
I was 40, I believe at the time and I ended up being at this cafe meeting a friend to talk about work in business. I was dressed professionally, you could definitely tell I was an older person, not a teenager.
And when I was getting ready to leave, a person actually approached me. He had like a white crisp t-shirt on with jeans and a baseball cap.
He said, “Hey, you have a pretty smile.”
I said, “Oh, thank you”.
And he said, “I have a movie studio. And I think you would be great. You should give me a call sometime.”
And I thought “okay, cool.” So he gave me his business card. But then I looked down at his business card, what I was looking at was images of dollar bills in the background. And I thought “that is so tacky.”

TR in Conversation with Adrienne:
Still a little curious when arriving home, she pulled out that card and checked out the website.

Adrienne 03:29
This is I don’t know about nine years ago, the website I entered took me all of a sudden to a Myspace page.
I thought, “Okay, this is obviously very shady, very tacky. Obviously, I’m not contacting this person.” And so I ended up throwing the business card away.

TR:
Six months later, she’s invited to hear a presentation from a lawyer on the topic of sex trafficking.

Adrienne:
She was basically giving the profile of pimps and on the PowerPoint presentation she was sharing.
All of a sudden, I see dollar bills in the background. She said they have images like these. But then she also followed that up by saying and they recruit on Myspace,
I thought, “oh my god, I was talking with a person who could potentially be a pimp and or trafficker.”
That experience, especially now that I’m working in this industry to prevent it and to fight it is to say to parents don’t think that this won’t happen to your child, because I’ve had some that say, oh, no, this would never happen to them.
The fact is, it could it is a possibility. When I speak with youth on this matter, I say even I as an adult woman have to be careful.

TR:
My guest today is Adrian Livingston, Director of anti sex trafficking initiatives with World venture.

Adrienne:
I am a light skinned African American woman with green eyes, brown hair, in dreads about shoulder length.

TR:
Those scenarios where we need to be on high alert, described at the top of the episode, while important to be aware of, they aren’t the typical techniques used by traffickers.

Adrienne 05:06
I think mainstream media has really glamorized that trafficking is kidnapping, there’s a movie Taken.

[scene from Taken plays]
If you’re looking for ransom, I can tell you, I don’t have money. But what I do have a very particular set of skills, Skills I have acquired over a very long career, skills that make me a nightmare for people like you. If you let my daughter go, now, that’ll be the end of it. I will not look for you, I will not pursue you. But if you don’t, I will look for you, I will find you. And I will kill you.

Kidnapper:
Good luck. [phone hangs up]

TR:
Well, kidnappings do occur, traffickers have much more subtle techniques to lure their potential victims. As we’ll see, that actually means the special set of skills required to save these women are more easily attained than those used by Liam Neeson in the film.
[piano r&b track plays]
First, though, let’s get familiar with some of the techniques which present their own challenges to recognize, like boyfriend.

Adrienne
where you have someone who you think is interested in you wanting to be your boyfriend. But you don’t realize that while they are wining and dining you, paying for you to get your nails done or buying your new clothes, he’s actually grooming you.
And especially if it’s a person who may have low self-esteem or just really likes this guy and does not want to lose them.
And because he’s been giving them these gifts, he might then say, you know, I’ve been contributing, I’ve been giving you all these gifts, and you need to now contribute.
You need to go do this for me.

TR in Conversation with Adrienne: 06:55
That showering of gifts and attention is not only alluring, but such as a common desire perpetuated in our culture.

Adrienne 07:01
I think when people think of trafficking, you think, Oh, it has to be happening over there somewhere else. They have to be transported somewhere. Yes, that happens. But you can actually be trafficked and exploited in your own city,

TR in Conversation with Adrienne: 07:13
a young girl was trafficked while living at home with her parents.

Adrienne 07:17
She had a person pick her up at 2am go out and traffic her and then bring her back home 5am. Her parents had no idea what’s happening.

TR in Conversation with Adrienne: 07:25
Her dad was a cop. It’s hard to believe that such a thing is possible. But we need to understand that traffickers are well versed in manipulation, and blackmail, and an understanding of the law.

Adrienne 07:37
Gangs are actually selling I’ll say individuals, because again, it can happen to girls and boys. It’s harder to prosecute. If a person is picked up for prostitution, compared to drugs or arms.

TR in Conversation with Adrienne: 07:50
We’re talking about the differences between the sale of goods and services ownership of the “product” in this case, a human being remains with the trafficker or the pimp.

Adrienne 08:00
You can have one girl that makes you residual income. And it’s harder to prosecute, even if that girl gets picked up for prostitution, it will be harder for law enforcement to prosecute, because you can’t lock up evidence that’s human.
But if they get picked up for selling drugs or arms, it’s easier for law enforcement to prosecute, you can lock the evidence away because it’s drugs, guns, arms, etc.

TR in Conversation with Adrienne: 08:29
Another technique used by traffickers is blackmail, or demanding payment or another benefit from someone in return for not revealing compromising or damaging information about them. Consider Adrian’s story of being invited to a photoshoot. Traffickers use drugs to control these women. And let’s just say take all sorts of pictures.

Adrienne 08:48
And if you don’t want those pictures released, then you must do what I say. And that means you’re going to go make me money in this form of selling your body for sex, and you’re going to bring me my quota, which is an amount that they have to bring home nightly or daily. It could be $300, could be $2,000. But they have to bring it home. Otherwise, there could be a real fear of punishment.

TR in Conversation with Adrienne: 09:10
The majority of those being prostituted are cohurst. For some, the entry point is poverty, as in this is the only option available to feed their children.

Adrienne 09:18
I do get pushback like oh, there are some people that want to do it. I’m like, You know what, there are some that do but I’m working for the 90% that don’t.
I’m working for those that don’t have a voice. I’m working for those that if they could prevent it if they could do something else that they would.
This is one industry where seven years you can be dead whether it’s from homicide from your pimp or trafficker to a buyer disease, pregnancy, so much trauma.
They actually have studies that demonstrate that those who have been prostituted have PTSD. There’s a book called The Body Keeps the Score. You’ve had those that have come out of prostitution and are survivors but it’s still hard for them to be intimate with their partner because of the trauma the experience because they had to have sex with so many individuals a day.

TR in Conversation with Adrienne: 10:00
Now that we are aware of some of the tactics used by traffickers to find their victims, which remember can include men as well as women. What groups are most vulnerable.

Adrienne 10:11
Youth is definitely one of them. You have those that may already come from a background that’s broken. You also have immigrant refugee population, you have someone whose sheltered, their parents have sheltered them so much from what’s happening, that they could be easily lured. Those that are in the foster care system. That’s already the child that has left their family for whatever reason that’s broken going into a broken system.

TR: 10:40
We know that all of these vulnerable demographic segments also include disability. Consider this story from the National Human Trafficking Hotline,
Ominous ambient music begins

Adrienne 10:48
This person who had a developmental disability was recruited from a recreational and vocational training center. So their trafficker posed as a boyfriend.
This person basically was planted in this vocational recreational center, and made the victim believe that the counselors, their friends, their family members, these people in her life did not want her to be an independent adult.
And this trafficker, quote unquote boyfriend, used her fear of being treated as a child against her that caused her to be isolated.

TR in Conversation with Adrienne: 11:22
That’s just one of many tricks used to control a potential victim, keeping you away from those who truly have your best interest at hand, and can spot the manipulation

Adrienne 11:32
In that time that he was with her basically convinced her to get engaged in commercial sex from their home.
People with disabilities, they may be desensitized to touch because of isolation, a part of the isolation or sheltering, they may have a lack of informed sexual education. They may not even know what constitutes as a crime or constitutes as someone not touching them appropriately. What are their rights? They don’t know.

TR in Conversation with Adrienne: 12:03
Think about all of the misinformation around disability, the discrimination face, the ableism that’s just a part of our culture. How multiple marginalized identities can greatly increase the level of vulnerability and exposure to abuse and the increased likelihood of not being believed.

Adrienne 12:21
They know that sometimes this person who has a disability, if they tell their friends and their family that these things that they may question are happening, their friends or family may not believe them. You basically help this person, this perpetrator, this trafficker, this pimp, be able to exploit this individual with a developmental disability.

TR: 12:44
We see that when factoring in race, social and economic status, law enforcement is less likely to believe, but they even go as far as to criminalize survivors of sex trafficking.
According to the FBI, 50% of minors arrested for prostitution in the US are black, suggesting that black miners are overrepresented in trafficking survivor populations, and or that law enforcement disproportionately targets black child sex trafficking survivors.
Consider the case of Cyntoia Brown, born with a cognitive disability fetal alcohol spectrum disorder. She was abused by 32 people by the time she was 16.
Running away from an abusive relationship, she was approached by a man who was seeking a prostitute. While with the man in his bed, she feared for her life, she shot and killed him. Yet, prosecutors painted her as a murderer out to rob without any consideration of her full situation.

[clip from Netflix Documentary, “Murder to Mercy: The Cyntoia Brown Story]
Today in 2017, Cyntoia Brown would be classified as a sex slave, a little child manipulated, who didn’t stand a chance against the men who used her. But that wasn’t the case in 2004.

Adrienne 13:50
We as a culture, have to treat all humans as humans, we have to allow all humans, all individuals to have a voice. And we have to believe them and not second guess them.

TR: 14:04
Protect by educating as opposed to sheltering, teaching appropriate behavior and setting expectations for how we should all be treated.

Adrienne 14:12
Whether it’s a mental, physical, intellectual disability, they just may not know for whatever reason, if part of it is lack of information or having their voice heard. We really need to assess ourselves from friends, families, culture, to make sure that these individuals have what they need to get the care that they need, and support that they need.
The common age of entry into being trafficked not the only age, but a common age is 12 to 16 years old.

TR: 14:44
That’s middle school, and high school. We’re talking about a $150 billion industry.

Adrienne 14:51
This is a 2014 statistic from the International Labor Organization, human trafficking, which incorporates all types of trafficking. So sex trafficking gangs, labor trafficking, organ trafficking. So two thirds of that 99 billion came in from this issue that we’re talking about today of sex trafficking.
Sex trafficking is the second largest international criminal industry behind drugs. So it goes drugs, human trafficking, and then guns and arms.

TR: 15:21
It’s an international business that preys on vulnerable populations. Therefore, it’s safe to assume that countries with large rates of poverty are highly affected.

Adrienne 15:29
I lived in the Dominican Republic, when I lived there, I definitely did not know about this whole issue of sex trafficking and exploitation. But I recall, now that I’ve learned about it, hearing always, oh, the women, they are being wined and dined by these German men that come over the Sugar Daddy. Basically, scenario, these girls are being trafficked and exploited. Because they are in poverty, they didn’t have an another way to make money, they don’t have an education. That was how they were able to survive.

TR: 15:58
The blatant and honest truth of it all, is there’s one constant that can predict where you’ll find some version of sexual trafficking,

Adrienne 16:05
Wherever there are men, this definitely is there.

TR in Conversation with Adrienne: 16:09
And those interested in trafficking, are trained to exploit whatever they can to get what they want.

Adrienne 16:17
Basically, pimps say, once I get a girl to have sex, I’ve got her understanding that when one has sex, there is a hormone in your body that’s released called the bonding hormone, oxytocin, you’re literally bonding to that person, especially if you like them. He knows that once he does that, he can ask her to do anything, it can be, go give my friend a blowjob things that she may or may not know that money is being exchanged.
Next thing you know, because you don’t want to lose your quote, unquote, boyfriend, all of a sudden, you’re in this industry of being trafficked. There are some that don’t realize that they’re actually being trafficked and exploited.

TR: 16:58
The term pimp has changed over the years, away from his true definition of someone manipulating a woman by force or psychologically to something synonymous with glamor, or improvement.

[clip from MTV Pimp My Ride]
I’m 24. And this is my ride. So please, and TV, please MTV, please. Pimp my ride!
Check out your brand new ride.

TR in Conversation with Adrienne: 17:25
Damn and I can’t even sit here and act like I don’t rock out to some of the music.

[Big pimpin’ by Jay Z plays in the background]

That’s my jam!

But damn over 40% of those lured into sex trafficking, are said to come through pimps.

Adrienne 17:38
With pimping culture, you have someone that is treating a person as a commodity as an animal.
our culture doesn’t really consider that this pimp can actually harm this person. You have the finesse pimp, but then you have a gorilla pimp, someone who’s just going to rule with a heavy hand.
Imagine you being the person that’s the victim, having a gun held to your head caught. So you really are fearful for your life.
So when you think and understand the word pimp, why do we have Pimp My Ride? Pimp my pancake, all these things that refer to pimp as a positive thing when really innately it’s negative?

TR: 18:19
Pimp psychology is even promoted as a means of pickup or finding women,

[Pimp speaking] 18:23
Most of the people who approached me, like in the pimp game, they’re not asking how to be pimps, they mostly come to me about how to approach women.
What do you think I say to a woman in 30 seconds to make her want to sell her body on a corner from me for 12 hours is certain power and language and this you use, but when I teach guys this, I don’t teach them so that they can go out and do that. I teach them so that you can be the guy at the bar. I said, I’m five foot seven. And I don’t think I’m the most handsome man in the world. Watch me leave with all the women in this party. And it won’t take me five minutes.

Adrienne 18:51
Is that power and control dynamic? I can control this person. Look, they’ll do what I say.

TR: 18:57
Chances are high that anyone with a physical disability has experienced some level of someone trying to exert control over their body.

Adrienne 19:05
And not ever thinking, “Can I get the permission to touch this person?” I think our culture just sees someone and automatically wants to be like, Oh, let me just help you without even asking and getting your permission. Like wait a minute, don’t do that.

TR: 19:19
And when it comes to disabled women, this unfortunately occurs much too often enough to warrant what amounts to a social media campaign to bring awareness to the problem. Shout out to Dr. Amy Cavanaugh, in the UK, @blondehistorian on Twitter who started #JustAskDontGrab, bringing awareness to this issue of being touched without a person’s consent.

Adrienne 19:41
I think that’s one of those things, to have to educate to give them words if they’re like, you know, I just don’t know what to say to this person or to say no, you could say “oh, don’t touch me.”

TR: 19:52
Empowering people with disabilities through education and awareness, are ways of taking back control. But yeah, So, how often do we hear about this topic through a disability lens? What organizations are out there?

Adrienne 20:05
I was able to find information from Polaris Project, that is one. Then they list the National Human Trafficking and Disabilities working group.

TR: 20:15
NDRN or the National Disability Rights Network, National Center for ending abuse of people with disabilities, are some others. I’ll include a few resources on this episode’s blog posts, At reidmymind.com. The point of the scenario from at the top of the episode is that we have instincts that we have to tap into.

Adrienne 20:34
If there’s something that’s fishy, there are sensations that are going on your body like butterflies in your stomach, listen to that. So if it’s like a flyer on your car, leave it there. You don’t need to pick it up right then and there drive off because it could be someone that’s waiting for you to do that.

TR in Conversation with Adrienne: 20:50
That gut intuition or feeling that something is off isn’t just about preventing physical harm.

Adrienne 20:55
If you can prevent it from happening, you are preventing a lifetime of trauma, making sure that that person whether child or adult is then educated on what does it look like?
What does it look like when someone is trying to manipulate you?
They need to understand and see what does even isolation look like? Having someone say, Okay, this secret is between you and I. Now, sometimes secrets can be good. It’s like keeping a secret from someone having a surprise party.
But other times, it’s a secret because they know if you were to tell they would get in trouble.
Having them understand their rights, having them understand what is not appropriate touch. And when it comes to a point where oh, what this person has done is wrong. And you need to report that making sure that should someone report something happening, that they are listened to and not dismissed for their disability, having them being educated on sex education, boundaries, healthy and unhealthy relationship characteristics, not just sexually, that’s anyone whether it’s a caregiver whether it’s a friend, whether it’s a family member, having them understand the power and control dynamics, there’s a power and control will that talks about emotional abuse, financial, sexual, physical.

TR: 22:16
How about a little description…

[rewinding sounds that turn into a hip hop beat]

Adrienne 22:21
It’s kind of like the center of the wheel and then the different spokes shooting out and then it’s surrounded by the tire. Power Control is the very center of the wheel.

TR: 22:30
See, image descriptions aren’t just for the web, and audiobooks. The specific segments of the wheel will the spokes help drive power and control. I’ll mention the category and Adrian will explain further. First, coercion and threats

Adrienne 22:45
Threatens to harm the victim or family threatens to expose or shamed the victim threatens to report to police or immigration.

TR:
Intimidation

Adrienne:
Harms other victims children’s or pets, emotional abuse, humiliates in front of others calls names, plays mind games.

TR: 23:02
We talked a bit about this one, but it’s really important. Isolation

Adrienne 23:06
Keeps confined, accompanies to public places, creates distrust of police and others.

TR:
Denying, blaming, and minimizing.

Adrienne:
Makes light of abuse or exploitation and denies that anything illegal or exploitative is occurring.

TR:
Sexual Abuse

Adrienne:
Uses sexual assault as punishment or means of control forces victim to have sex multiple times a day with strangers.

TR:
Physical abuse.

Adrienne:

Shoves slaps, hits, punches, kicks, strangles, burns, brands, tattoos, so much in the physical abuse.

TR:
Using privilege

Adrienne:
Treats victim like a servant uses gender, age or nationality to suggest superiority.

TR:
Economic abuse

Adrienne:
Creates debt that can never be repaid, takes money earned, prohibits access to finances and limits resources to the small allowance, all of this to give as examples of how someone is trying to maintain power and control over you.

TR in Conversation with Adrienne: 24:05
Wow, these are all equal size.

Adrienne 24:07
Exactly. Now, they don’t give any of them weight in the sense of what’s more or less, and they don’t name everything. So for example, there is crazy making an example that I know is you know, because basically, you have items and ornaments on your banister or say above your fireplace. If you have one.
And you know you set it there but then you go to bed you wake up in the morning, you go back down and it’s move and you’re like Wait, I didn’t move that and you ask your partner did you move it? He’s like, No, I didn’t move it.
You have different things like that happening where they’re making you really feel like you are crazy.

TR in Conversation with Adrienne:
Is that also gaslighting?

Adrienne:
Yep, gaslighting domestic violence is a part of this too. Oftentimes, the same things are used to hold power control over someone in sex trafficking very same in domestic violence. So when I am teaching, I’m trying to help prevent both from happening.

TR: 25:01
Adrienne herself had an experience where now very ex-boyfriend planted spyware on her phone. It enabled him to listen in on conversations, and even track her location.

Adrienne 25:11
He tried to do the crazy making. He tried to intimidate me. He tried to isolate me, thankfully, intimidation, the isolation, that didn’t work.
But I know now what that sounds like, because he’s the one that used it with me. And this is what I actually share with young girls. When they’re trying to isolate you it doesn’t sound like they’re trying to isolate you what it sounds like, and what he actually used was “oh your friends and family, they don’t get me. Can you and I just hang out tonight?” That doesn’t sound so bad.
But you keep saying that message over and over in different ways all of a sudden, and you’re like, oh, yeah, we can do that. All of a sudden, he started to pull you away. But thankfully for me, I said, Okay, well, you don’t have to hang out with them. I’ll see you later!

TR: 25:48
She saw signs from feedback she received from her best friend. And, you know, I have to give a shout out to her dad. Because yes, dads can tell too y’all.

Adrienne 25:58
For those that have fathers, and not everyone has one. I do understand that. And that even those that do may not have healthy fathers. But mine is and when mine met him. He later told me he’s like, “Yeah, I don’t like him. I don’t trust him. He couldn’t look me in my eyes.” As a man he saw something I didn’t.

TR: 26:21
That’s perception, We know when someone is uncomfortable in our presence, especially when we’re used to being “othered”.

Adrienne 26:32
I think growing up and not having a thumb, that gives me a different kind of experience. Not having a thumb has not disabled me in any way. But what it has done is I see other people’s reactions. So when I see someone and they shake my hand or they do something and then they realize I don’t have a thumb. I definitely see it on their face. They’re like, Oh, I’m so sorry. I don’t consider it a disability. I’m actually glad I was born this way that has allowed me to see the world differently. Don’t pity me. This is the life I have. This is the only life I know. I’m blessed. That’s my story. That’s all I can say.

TR: 27:12
Actually, she could say much more.

Adrienne 27:15
A really good friend Susanna Mars introduced me to audio description last year, I have been trained to audio describe live shows. And also I’ve gone through another training to be able to describe TV or film.

TR: 27:30
While she’s writing and narrating. We can kind of tell she’s someone who knows how to use her voice.

Adrienne 27:35
I would say my focus right now is narrating.

[a clip begins from a film]

Man 1: Want to take them home? Three thousand each
What’s going on here?

TR: 27:48
As we know this power in films.

[clip continues]
What’s been happening?

Adrienne 27:51
to you promise you can stop these men promise.

TR in Conversation with Adrienne: 27:56
Another reason why access is so important. In fact, it was a spontaneous decision to watch a film called The whistleblower that inspired Adrian to get involved.

Adrienne 28:06
I like Rachel vices an actress and I was at the red box. And like all that, I didn’t realize that it was based on true events.

TR in Conversation with Adrienne: 28:14
Specifically, the experiences of Katherine bulk of back in Nebraska cop who served as a peacekeeper in post war Bosnia. And out of the UN, covering up a sex trafficking scandal,

Adrienne 28:26
she was seeing that there were girls that were being trafficked and exploited, she tried to alert the United Nations to what was going on. Unfortunately, she found that some of her very colleagues were not only participating in the sex acts, but they were also alerting the traffickers when rates would occur so they could move the girls. What made me so mad is that she actually got let go as a peacekeeper from the United Nations, but her colleagues had not those that should be the protectors were the very perpetrators and help other perpetrators get away with what they were doing. The United Nations, you as a system were allowing this to happen. Oh, I was so mad. Then I started researching because I thought I want to get involved. Then I saw oh, wait a minute. It’s happening here in my own backyard in Portland, Oregon. You just have to understand the context.

TR in Conversation with Adrienne: 29:21
She started to talk to other people learning more and figuring out how to get involved

Adrienne 29:25
that led to a conversation with World venture that ultimately led me into having this job. Once

TR in Conversation with Adrienne: 29:31
again. That’s director of anti sex trafficking initiatives with World venture where she continues to educate

Adrienne 29:38
one curriculum that I’m really working to grow and to help equip youth leaders of middle and high school girls and it is with a biblical framework is our girl empowerment curriculum. That’s both a sex trafficking and domestic violence prevention curriculum. You can find more information about that on my website, justice, hope, freedom. dot com. Facebook is also justice, hope, freedom. And then on Instagram at JH F ministry.

TR in Conversation with Adrienne: 30:11
I’ll never forget this one afternoon. It was during my initial return home from the hospital after becoming blind. I was taking a nap when I heard the screams of my daughter and my nieces and my driveway. I was startled, jumped out of my bed to see what was going on. It was just playing a screaming like little girls do. I had a hard time though at that moment because I couldn’t figure out what I would do if something were actually wrong. I couldn’t jump in the car and track down the perpetrator, you know, be a superhero. That’s not to say that blind people can’t defend themselves. But it is to say that from my conversation with Adrian, the true power is being informed. Being educated. Protection doesn’t come from sheltering. If you’re a parent of a disabled child, a teacher school administrator, consider the potential danger you may inadvertently put that child in by keeping them uninformed. Rather, why not find the appropriate and accessible ways of including that child in conversations about sex, consent, and the realities of people that will not hesitate to take advantage of them. You may want to take a strong look at your concept of protection. Ask yourself if ableism has anything to do with your decision to deny that child access to information. And while I’m on that topic of denying access to information, Miss Adrienne Livingston. Not only do I appreciate your willingness to come share your expertise on the podcast, but I feel pretty certain that we will all benefit from this knowledge and perspective. We hope to hear from you again. Perhaps as the voice describing some content on one of the streaming networks. Well maybe back here on the podcast, you need to know you are an official member of the Reid My Mind Radio Family.

And you know you too can be a part of the family by making sure you subscribe or follow wherever you get podcasts. We have transcripts and more at ReidMyMind.com.

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