Reid My Mind

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]

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— Sample: (“D! And that’s me in the place to be.” Slick Rick)
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— Reid My Mind Radio outro
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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.

Just remember, that’s R to the E I… D!
to the D DNS
— “D! And that’s me in the place to be”, Slick Rick

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Music begins
THOMAS: Welcome to the Blind-Centered Audio Description Chats. These are the edited recordings of the Blind-Centered Audio Description Live Chats!
CHERYL: The live is the most fun part! We get together, we start with a question, and then we invite up anybody from the audience who wants to come and chat with us, agree, disagree, shed light on something that we hadn’t thought about before, which is Nefertiti’s favorite. [electric whoosh]
NEFERTITI: I’m Nefertiti Matos Olivares, and I’m a bilingual professional voiceover artist who specializes in audio description narration! I’m also a fervent cultural access advocate and a community organizer.
CHERYL: I’m Cheryl Green, an access artist, audio describer and captioner.
THOMAS: And I’m Thomas Reid, host and producer Reid My Mind Radio, voice artist, audio description narrator, consultant, and advocate.
Hey, Nef, why don’t you tell people how they could join the live recording?
NEFERTITI: That’s really simple. Just follow us on social media to keep up with important details, such as dates, times, and what platform will be using. On Twitter, I’m @NefMatOli. Cheryl?
CHERYL: I’m @WhoAmIToStopIt.
THOMAS: I’m @TSRied, you know, R to the E I D.

EDITORS Note:
THOMAS: The following is the second half of a two part conversation from April 5, 2023.
We’re calling it, Becoming Critical. In part two, we speak with John Stark, a Blind film critic who reviews films both with and without AD, in order to highlight the need for audio description.
And now, let’s jump into this latest Blind Centered Audio Description Chat!

[smartphone selection beeps]
CHERYL: Recording now!

THOMAS: Tell me about your first experience with movies in general, not audio description, movies in general.
JOHN: I mean, I’ve been watching movies my entire life. I’ve always loved movies in sort of like an obsessive way. I remember as a little kid, I actually used to cut, back in the day when they used to put the ads in the papers and they had little posters of the movies, I used to actually cut those out. I was like five or six, and I collected them. [laughing] So, just like obsessed with movies! But I don’t know. I’ve always wanted to watch movies. I think Jurassic Park was kind of maybe the big turning point for me. I’ve never really wanted to make movies. I started reviewing as a critic. I used to live in a small town, and our small-town newspaper didn’t have a critic, so I actually convinced them to let me write for them in middle school. So, that was kind of cool. I got to write for a couple years until they ended up picking up a movie critic out of syndication and decided they didn’t want a, you know, 13-year-old writing reviews for them anymore. I guess they didn’t like the fact that I gave Power Rangers four stars.
But yeah, I used to be able to see, so I enjoyed a lot of films that way. And I eventually grew and started doing stuff online. And I’ve tried to bounce around on sites, trying to review wherever I can, eventually getting, you know, getting it all together to have my own site and post my own reviews and then my own YouTube channel. But I do have a degree in Cinema Studies; it’s what I went to school for. And then around 2017, I found out that I was losing my vision, and it went pretty fast. So, I kinda stopped for a little while ‘cause nobody told me right away about an audio description! And as soon as I found out about it, I dove like head first. And I was like, “Oh, what is this amazing thing?!”
THOMAS: How did you find out about it? How did you find out about AD?
JOHN: To be totally honest, when I went blind, when I started joining all these Facebook groups, at first, nobody was talking about it. I would try to talk about movies and television shows, like, “Hey, what do you guys watch?” And pretty much everybody was watching reruns, you know, of stuff that they were familiar with. But eventually one day, I don’t know, somebody just mentioned audio description. They were like, “Hey, do you know about this?” And I was like, “What?! Tell me how do I turn this on? Where is this amazing feature?!”
THOMAS: [chuckles]
JOHN: And I really, I mean, I knew it existed ‘cause I had worked in movie theaters, but I didn’t know that it existed in the, at least in the proliferation and like, how to turn it on and that it was on all these apps, and I could have it on my phone, and I could have it on my Roku. I just, I just didn’t know. And as soon as I did, I haven’t stopped.
THOMAS: So, what was your—
JOHN: I felt like I had to catch up on everything.
THOMAS: Yeah.
JOHN: So, I feel like I’ve just been watching non-stop.
THOMAS: Do you remember your first experience with AD?
JOHN: Oh. I don’t. I wanna say it might’ve been when, like, a new season of Stranger Things was coming out.
THOMAS: Oh, really?
JOHN: Probably like, around when Season Three of Stranger Things, I think, hit.
THOMAS: Ah!
JOHN: ‘Cause I think I went back ‘cause I didn’t get a chance to watch Season Two. And I remember I had to watch Season Two before Season Three. That’s about the time that I remember hearing about it.
THOMAS: Okay.
JOHN: Yeah, and that’s probably the best memory I have because Stranger Things is such a visual show that I was so happy to have that audio description and feel like I, you know, I knew this world, and I knew the crazy special effects and everything that were going on, and it was great. And, yeah, I just, I would get disappointed after that every time a film didn’t have audio description. And when new things came out, and I couldn’t understand them, I was like, “Why? How do I tell somebody that this is unacceptable? You know, why doesn’t this film have audio description?” So, I joined the community, this audio description community, and just started listening, paying attention and calling and arguing with streaming services to try to get audio description on titles and fighting with them. And I just wanted to sort of help those out there who don’t know about audio description to try to help other blind people find titles that work for them, to talk about titles that don’t have audio description. And is it sort of watchable if you have to watch it? Is it not watchable? Like, what level of it is it, and why is it that way? Why can’t we follow this?
THOMAS: With the audio description specifically, how long did it take you to sort of get your own determination of what is good audio description and what is bad audio description?
JOHN: A lot of different things for a lot of different companies. And ‘cause everybody kinda does things differently.
THOMAS: Mmhmm.
JOHN: And for me watching, you have to watch every genre, too, because it’s different for genres. I think there’s, there are different expectations with everything. I notice with a lot of TV sitcoms that really just kind of nobody stops talking, the audio description is very light. Whereas there are other programs where almost nobody’s talking, so the audio description narration fills in a lot. I mean, you get everything. You get costumes, you get hair, you get people’s facial reactions because there’s nothing there to, you know, to talk over, to accidentally. I understand you don’t trample the dialogue. It’s comparing them. It’s seeing who does it differently. It’s hearing conversations.
I remember when I started reviewing, I went pretty hard on how I felt about Chip N’ Dale Rescue Rangers and that audio description because I thought it was pointless. It didn’t do what it was supposed to do, which is bridge the gap for blind and visually impaired users because it didn’t include basically every single cameo that they had in the film. There’s YouTube videos going over like 300+ cameos in that film of other animated characters. And it was like the audio description went out of its way, even on characters where it did reference, it described what they looked like instead of saying what characters they were. So, you had to guess based on the description. And meanwhile, if I was able to see, I would’ve instantly recognized all these characters as all the sighted people did! So, come to find out that was actually Disney requested that. So, I don’t understand why Disney requested that. I don’t know why they wanted us to have half the experience, but that was definitely a moment for me where I was learning from the community as I was reviewing.
THOMAS: Mm.
JOHN: And I try to pay attention. I try to come to meetings like this and learn as much as I can so that that way, I know what it is I’m criticizing, like, what the parameters are, what’s possible for audio description, and so that I’m not demanding something that is impossible or cannot be done. And I think I’m doing that? But I don’t really know.
THOMAS: It takes a while for folks to get used to listening to films with audio description and get their own bearings on what is good and what is bad. Take us through your process in critiquing a film. How do you do that with the AD? ‘Cause you do with and without AD, is that correct?
JOHN: Yeah, I do with and without. ‘Cause I tried to call out a film. I actually had that really interesting experience where I worked with a producer—we can talk about that later—of an Oscar-nominated short where her film didn’t have AD, and she saw my review. And then we ended up getting the film AD.
THOMAS: Yeah.
JOHN: So, that was a cool experience for me. But in general, first of all, the question is, can I understand it?
THOMAS: Yeah.
JOHN: Did the audio description, was I lost? Could I not follow the film? Most of the time, the answer to that question is yes. Most of the time I am able to follow. It gets a little bit trickier the more you get into like, action, sci-fi, and horror, because there’s a lot of things happening. And I think especially with horror films I’ve seen, that’s probably where the audio description gets the most tricky because I’ve seen audio description that leans away from horror and gore and doesn’t describe it. Which sort of defeats the purpose of the genre.
THOMAS: [chuckles]
JOHN: But then again, I go back to the thing about contracts, and I don’t know whether or not the studio is saying, “Please don’t describe this.” So, and sometimes things are described sort of generically, and you don’t really get the scare of the scene. It’s really hard to be scared anyway. I mean, I used to be kind of a baby about horror movies. Now I find myself watching anything because it’s like, well, if I don’t, if I can’t see it, good luck scaring me. And so far, that’s proven to be largely true. I can be grossed out a little bit, definitely. But jump scares and everything have a completely [laughing] different effect when you can’t see the thing that’s lunging out at you on screen, and it’s just like sound or something. Just, I don’t know, for some reason it’s not as scary. But yeah, it’s stuff like that. Is it effective for the genre? Did I understand? Did a character die, and they forgot to tell me about it? [laughing] You know, did I miss something?
THOMAS: Hmm.
JOHN: Was somebody referred to as the wrong thing? When I get to review a film that I did see visually, and then now I’m watching it again as a blind person, that’s when it gets really interesting. ‘Cause then I’m like, okay, I actually got to see this, and now I’m blind. What’s my experience like now?
THOMAS: Yeah.
JOHN: Those are interesting comparisons for me because I do know what I’m missing. With audio description, I have to guess what I’m missing. And sometimes I don’t even know. Like recently with Tetris, there’s a scene that’s like an 8-bit car chase scene that just is kind of described as a regular car chase scene. But when I heard another critic describe it, it sounds like I totally did not get that scene described to me the way that at least they’re describing it in their review. So, that happens a lot. I don’t actually know what I’m missing, so it’s hard sometimes to grade it. And then I come back around. I’m like, I, you know, I don’t know. Did I miss something that I didn’t know that I missed?! So, it’s very tricky. And I hope to continue to get better at it and continue to pick up and just further the audio description discussion, so.
THOMAS: So, how do you do that on a film that doesn’t have AD?
JOHN: By pointing out why the film doesn’t work and why it’s unintelligible and why someone would need audio description. Sometimes it’s led to somebody pointing out to me that there is audio description available. It’s just nobody’s using it.
THOMAS: Mm.
JOHN: I know William Michael Redman reached out to me because I reviewed Crimes of the Future, which I rented when iTunes had it 99 cents on sale. And then later on, Hulu had, it still didn’t have audio description! So, I saw two different versions of it. And he’s like, “I recorded audio description for this. I don’t know why nobody’s using it!”
THOMAS: Yeah.
JOHN: But it’s a body horror film, and there’s almost no, there’s almost no dialogue in it. So, it’s pointless, and it’s impossible to watch. It’s a waste of time for blind people. But I did sit through the whole thing to let people know, like, “Yeah, I sat through this, and this is what you’re gonna get. You’re gonna get about three scenes of dialogue and just kind of some sound effects.” Skinamarink was an experience. I mean, that film by law should be required [laughs] to have audio— It’s impossible. It has almost no spoken words in the entire film. It’s all just sounds. So, it’s a very weird experience, and there’s no score. [laughing] It’s a very weird experience.
THOMAS: Oh, my gosh.
JOHN: And so, a lotta times I stopped. At first, I was using, I was using the lack of audio description in my grading, which I didn’t feel like actually represented the film. So, I just started grading those films as being unwatchable.
THOMAS: Yeah.
JOHN: Like, it doesn’t get a letter grade anymore. It just, I just say it’s unwatchable, and I move on.
THOMAS: Oh, I think that’s an F. That’s should be an F. [laughs]
JOHN: I mean, basically it equates to an F. But I also am acknowledging that this might be the best film ever made.
THOMAS: Yeah.
JOHN: I just have no idea because this film is not accessible to me.
THOMAS: Wow. And so, talk about describe watching a film like that with no AD. I’m like, “Dude, what are you doing?! [laughs] Why are you, why are you, why are you doing that to yourself? Why are you?” You know. So, why? Why are you doing that to yourself?
JOHN: To show people. I actually, on my YouTube channel, I filmed myself watching RRR, which Netflix had decided to offer only with English dubbing and no audio description.
THOMAS: Hmm.
JOHN: And so, I basically filmed myself watching it and then uploaded it, just talking about like, can I understand anything what’s going on? And I would talk about, like, as things are happening, I’m like, “This is what I think is happening. I’ve got no idea because there’s no audio description here. Oh, this song sounds really cool. I don’t know what they’re doing on screen, but…” you know, stuff like that. If somebody’s not doing it and pointing it out, then everybody will think that everything’s okay, that we’re just okay, that because nobody’s complaining, nobody’s saying anything. You know, these streaming services, they hire customer service agents to just kind of placate us and move along. I mean, I’ve complained to Paramount+ about some things. I complained about Showtime audio description on their service when it launched, and it still doesn’t have audio description for known, for titles that have audio description. And it’s owned by the same parent company.
THOMAS: Mmhmm.
JOHN: So, I’m trying to bring attention and focus in whatever way I possibly can. And if it’s me suffering through things to be able to point out like, “Yes, I tried it your way. Your way doesn’t work, you know. You have to do it this way. You have to get the audio description because I’m paying the same amount as everybody else for all my subscriptions. But I’m actually, like, a bunch of these titles are not accessible to me. They’re completely unintelligible without audio description.” So, I’m fighting complacency within the streaming service, so I will watch anything if I think it might stir the pot. But like I said, I don’t know. I don’t have a huge following. Everything nowadays is based on your social just footprint. And if I had a million followers, I feel like there would be audio description on Showtime! Because there would be a series of videos of me calling out Paramount+ until they actually did it, so.
THOMAS: Are you on Twitter?
JOHN: I am on Twitter. I’m MacTheMovieGuy, yeah. I don’t use Twitter as much as I do YouTube, but I have the ability to tweet. It’s, I feel like people are leaving Twitter, so I don’t really know what to do [laughing] with Twitter!
THOMAS: No, but the reason I ask about Twitter is because I think, like, I’ve personally had some really good experiences with HBO, Amazon, I think Paramount also, when you get at them, right there on Twitter, right in public. Because you could just @ them. You could, if I were you, I would be @-ing them every single video, you know. But even when you just have your customer request stuff, like, put it out there in the open for the world to see. It doesn’t mean that the world is going to see that, but it means that the world can see that.
JOHN: Oh, I’ve done that a couple of times.
THOMAS: Okay.
JOHN: I just don’t do it all the time. Because I, again, I don’t know how effective Twitter is anymore, and I was just worried. I just don’t know if anybody is—
THOMAS: Yeah, I don’t know either. But I would still put it out there.
JOHN: —listening on Twitter anymore.
THOMAS: I would still put it out there.
JOHN: Yeah, I will.
THOMAS: Yeah, yeah. Especially all your videos because, What’s interesting is that there are people doing the same work, right, but doing it differently, whether that be, you know, making those phone calls, whether that be advocating the governmental environment, you know, the whole CVAA, all of that type of thing. But to show your experience is pretty good. People write about their experiences, all of that. But yeah, that’s an interesting, it’s another level, and that’s fantastic. I like that.
How do you choose the movies that you decide to film yourself watching?
JOHN: Every once in a while, it’s just totally random, but I usually try to review new titles. I need to allow myself the grace to not review literally every new title because I, last year I reviewed, I reviewed 295 titles that were released in 2022.
THOMAS: Huh.
JOHN: And there were some titles I wasn’t even interested in, and they were poorly made, and there were these like, crappy things that are thrown together that had audio description, you know. [laughs] And so, I reviewed them. I was like, “Oh, well, you put audio description on this film with nobody in the cast I’ve ever heard of. I’ll watch your random freebie rom-com. Sure!”
THOMAS: [chuckles]
JOHN: So, and a lot of them ended up being predictably bad. So, I’m trying not to review these films that I don’t think anybody cares about.
THOMAS: Hmm.
JOHN: But yeah, I wanna review things as soon as they at least hit streaming and they’re accessible to everybody. I could go to theaters. As somebody who worked for four major movie theater chains when I could see, I know that they do not train those managers very well in actually figuring out how to fix AD. And the whole thing about paying for the Uber to go out there to find out the audio description doesn’t work. I just know too many times when I was working in movie theaters, our audio description wasn’t working, and I never knew any of the projectionists who knew anything to do other than turn it off and turn it back on, unplug it and plug back it in!
THOMAS: Yeah.
JOHN: So, it’s gotta be incredibly frustrating. I had no idea how frustrating it was until I’m now on the other side of it. But nobody ever trained us. So, I see people all the time posting how frustrating it is to go to theaters. And it’s like, I can’t. I just don’t have that kind of time and money in my life to spend that money to Uber out to a theater to find out that the movie doesn’t even have audio description, so I can’t even review it.
THOMAS: Again, that’s an example of, you know, yeah, choose your fight, right? Because that literally, I know for me, it took about three years for this one theater that my wife and I would constantly go to, to actually start to get it right. It took about three years. Now, we were always comped, [laughs] you know? But still, it took about three years. So, it’s, yeah, it’s crazy. Tell me about—
JOHN: You always get passes, yeah.
THOMAS: Yeah, yeah, yeah. We had lots of passes.
JOHN: Yeah.
NEFERTITI: And may I just say, passes are great except that when you came back, I’m sure it still wasn’t fixed. So, what good, really, are those passes?
JOHN: Well, the theater’s not giving you passes for the Uber either.
NEFERTITI: Right. Right.
JOHN: So, if you’re having transportation issues, it doesn’t compensate you for that.
NEFERTITI: Or gas money, you know?
JOHN: Exactly. Whatever it is.
NEFERTITI: Yeah. I’ve never been a fan of like, “Oh, we got comp tickets!” What good are they, really, ultimately?
THOMAS: Well, it could be good. It could be good. For me, it was good. [chuckles] Family of four? Yeah, I was able to go with just my wife. We’ll get a, they’ll end up giving us four passes, and then we go to watch something with the kids, you know. But it was, it was also, part of that was—and I’m not saying this works for everybody—but it’s just like again, you choose your battles, but that takes them seeing you there in a relationship because we started to talk to the manager. And again, this is just one of those things where once they know you, once it’s not a, “Oh, there goes that, here comes somebody,” you know. But now they know you. You know what I mean? They start to make a change. I’m not saying that everybody needs to do that, but that is one way is to go. When you go in there, ask for a manager, introduce yourself to that person. Because they’re probably gonna be there the next time. And so, that’s who you should be talking to. You bypass the little, you know, the college, the high school kid who’s working behind the counter. Bypass that guy. [laughs]
NEFERTITI: You build the relationship. And that is something that I am a fan of.
THOMAS: Yes. Yes.
NEFERTITI: I do like relationship building, and like, look, put this, put this human being who this lack of access is affecting, like, this is a real-world example. This isn’t some abstract thing. So, I definitely like that part. Yeah.
THOMAS: I wanna hear about, John, your experience where calling out a film ended up doing something happened there. Tell us about that.
JOHN: Yeah. I reviewed, ‘cause definitely, when I’m saying I review things that I think people are interested in, I review, I try to review as many Oscar nominees as possible, and that included the shorts when they were available on streaming. So, when My Year of Dicks was available on Hulu, I reviewed it. It did not have audio description, predictably, because Hulu doesn’t, [chuckles] you know, Hulu be Hulu. And so, I had to do my review based on how I was able to understand it based on the lack of accessibility. And it wasn’t great. It wasn’t completely unintelligible ‘cause it has dialogue, but there was a lot in there that just didn’t make sense and didn’t come together.
And I actually had the writer of the film reach out to me on Instagram, and she immediately tried to fix it for me. They hadn’t even, they didn’t even really think about audio description or know what it was. And suddenly, I had educated them. And she actually sat down at her computer and tried to do what I would call homegrown audio description, just at a laptop, which kind of sounded a little bit like director’s commentary, [laughs] almost.
THOMAS: Yeah.
JOHN: But because she didn’t know the ins and outs of audio description. So, it was essentially what she gave me, which wasn’t even complete, it was just like the first 10 minutes of the thing, talked over dialogue. And so, I explained to her, I was like, “This isn’t really audio description. This is why. Plus, I can’t really use this because no one else can use this. This is just in a Dropbox you sent to me. So, it’s not, I mean, I appreciate it. You’re going out of your way to do this, but it’s not like I could rereview the film based on [laughs] homegrown audio description you put in a Dropbox.”
THOMAS: Yeah.
JOHN: And so, she was really interested in trying to fix the problem permanently. And I was posting about this at the same time in that Facebook audio description group. And I had a producer on there that reached out to me and said, “Hey, can you connect me with the person that you’ve been talking to from My Year of Dicks? We would like to provide the audio description for that film free of charge.” Which I’m assuming they were doing so because they were a company I hadn’t really heard of, and they figured, hey, it’s an Oscar-nominated short. Maybe more people will know who we are, and it’s great publicity for us, so—
THOMAS: Can you name the company? What company was it?
JOHN: Oh! Off the top of my head? No, I can’t.
THOMAS: Okay.
JOHN: And I would have to go look up the producer’s name because I did not remember. I haven’t talked to her since she provided audio description.
THOMAS: Okay.
JOHN: But it’s on Vimeo, and it was uploaded onto Vimeo. There’s a, it’s, you didn’t have to turn the audio description on. It’s just a static, it’s like open audio description is what they ended up creating and uploading for the film. And they managed to get that out a little bit before the Oscars. They sent it to me. I shared it with the group. I’ve tried to share it out with other people, and I did do a second-look YouTube review of the film with audio description where I did give it a higher grade the second time around because it had audio description. I predictably was missing some things that the audio description made more clear for me. So, it was, yeah, all in all, it was, it was great. And it was nice to hear something from a content creator that said, “Hey, we should, we need to fix this. You know, how do we fix this? How do we make our title accessible?”
For something as small as an Oscar-nominated short, because honestly, I mean, I know film and shorts do not, they have a half-life of about five seconds. Once the Oscars are passed, nobody looks these things up again. Nobody’s gonna go back and try to find the Oscar-nominated short from 2004 that didn’t win the Oscar. They’re used, often, for those directors to get feature gigs, to get hired by bigger companies, generally, is where those directors come from. I don’t know that anybody is, in a couple years, is even gonna look up My Year of Dicks, but hopefully, until there’s another Oscars and it gets moved out of the limelight, people will go over to Vimeo and watch the audio description track, so.
THOMAS: But do you think something came of that interaction with the writer? ‘Cause you said it was the writer. It wasn’t the director. It was the writer of the film, right? Correct?
JOHN: Oh, absolutely. Absolutely.
THOMAS: Okay.
JOHN: I think it’s somebody who now is aware.
THOMAS: Mmhmm.
JOHN: And I think she made her team aware.
THOMAS: Mmhmm.
JOHN: I don’t think, I don’t think this was a conversation that she had, like, just by herself, you know, without anybody else. I think she likely contacted, I don’t know, like, the producer, director, whatever of the team and said, “Hey, I wanna, I wanna do this. I wanna get audio description on our film. Can we allow this to happen?” ‘Cause somebody had to okay it being uploaded to Vimeo, so it wasn’t, you know, there wasn’t a copyright claim. So, yeah, I think a couple more people are aware. And if more people can be aware, you know, I mean, that’s what I did with just, I have 118 subscribers on YouTube, and I did that. So, if I have, you know, 118,000 someday, I don’t know who’s gonna see my YouTube video and who I’ll be able to reach. So, start small, and I’m just gonna keep doing this until I make effective change, so.
THOMAS: Why is this so important to you?
JOHN: Because film is. Because it’s what it—
THOMAS: Why?
JOHN: Because it’s, it’s everything that I do. I mean, I have, I…. I have, [chuckles], I’ve, everything I’ve done has been around movies. I’ve reviewed movies online on various websites. Even when I was a kid, I reviewed movies for a newspaper. I have been watching movies. I had a huge, massive VHS collection. I even did like the illegal thing where I dubbed movies that I rented so that I could try to increase my VHS collection back in the day. I have a massive DVD collection. I used to even play some of the games. There’s a whole bunch of games for people who love movies. There’s like Hollywood Stock Exchange existed for a long time. I used to play a game called Hollywood The Game where you kind of wrote a screenplay and produced like a fake version of your movie and released it into the box office to see how it did, stuff like that. Box office challenges, the stuff to predict box office. I’ve talked to people who run other websites or their movie websites. I worked for Movie Gallery while they still existed, and people still rented movies, actually, in a store. I was a store manager for them in addition to the fact that I worked for four different movie theater chains where I was also a theater manager, so. Then I went to film school!
THOMAS: So, John, let me ask you—
JOHN: I haven’t done anything else!
THOMAS: So, let me ask you the question a little differently then. Why should anybody else care?
JOHN: What do you mean by anybody else? Like, anybody but me?
THOMAS: Anybody. Yeah, I mean, you telling me why—
JOHN: It’s like anybody care about me or anybody care about film or audio description? Anybody else care about film?
THOMAS: Why should anybody else care about audio description? You’re telling me, because of you and your background—and I respect that. I get that—but, you know, a lot of people would be like, “Okay, that’s you. That’s your problem.”
JOHN: The weird thing is that I think a lot of people don’t know about it. I’ve had personal interactions with people where since then, I’ve told them about audio description and turned it on, and it’s like their mind is blown. Actually, I work in a school, and I had a student that came in who was also visually impaired. And I was like, “Dude, do you watch movies with audio description?” He was like, “No, what is that?” And I explained it to him. And I had him, I turned it on, on one of my apps that I just had. Like, I pulled up Netflix, just pulled up a movie and just played it. And he was like, “Wow, that’s really cool that you can actually follow the action.” It was like an action thing that I pulled up to get the most effect out of the audio description.
THOMAS: Mmhmm.
JOHN: Yeah, you can actually hear it. And I think if people realize what it is that they’re getting, that they’ll use it to watch those films that they consider unwatchable and the TV shows that they consider unwatchable. Because I saw so many conversations from people who believe that action movies and horror movies and sci-fi movies are unwatchable and they just, like, they won’t watch them anymore. They only watch things or listen to things that they’ve seen. They won’t watch anything new. But it’s like they want to. If you go blind right now, and you’re halfway through the Marvel Cinematic Universe, you know, you wanna keep watching the Marvel Cinematic Universe. But there’s a lot of visual stuff that happens in that. So, if nobody tells you about audio description, then maybe you just stop watch-, you stop doing the thing that you love. And I think blind people give up enough things when they transition that this, if there’s something here that can help you do the thing that you were already enjoying, that can help you to continue to watch the TV show you were already watching, why not, you know?
THOMAS: Mmhmm.
JOHN: I think, I think it’s just a matter of introducing people to it and getting them, and normalizing it. If you normalize it, then I think people will accept it. I know people who use audio description who aren’t even blind. I had a guy tell me that he uses audio description when he goes jogging so he can catch up [chuckling] on his TV series! You know, like, instead of listening to music or audio books, he jogs to Abbott Elementary with audio description!
THOMAS: Mmhmm.
JOHN: It’s like, okay, you do you.
NEFERTITI: I love that. I love that. Yeah.
JOHN: Yeah. I had another friend tell me he uses audio description because he likes to multi-task, and so he doesn’t have to pay attention to his TV. He can turn on the audio description, and it runs in the background, and he doesn’t actually have to look at the TV. He can catch up on whatever while doing other things. So, it’s interesting that sighted people I know use it too, so.
NEFERTITI: Mmhmm.
THOMAS: That exchange you had with the student, that would’ve been a fantastic video. That would be a really good video.
JOHN: I gotta ask the student if that’s okay.
THOMAS: No, yeah. I know. Yeah, yeah, yeah. But if that’s something you could, if you could show somebody else, another kid, a young person like that, an older person, somebody who hasn’t been exposed to it, capturing that, that could be pretty interesting. Not to say that what you’re doing is not because it is. I’m just saying I would just add that. But something to think about.
NEFERTITI: I think so, too. Yeah.
JOHN: I would say I almost had that opportunity in a weird way. And I have to very, I have to tread very lightly on this because I signed an NDA, but I think if I never say the company, I think I’ll be fine on this. But I would say that somebody caught me and offered me a contract to do just what you’re talking about. But I think it fell through. I was contacted to do essentially instructional videos because they saw me doing what I was doing, and they realized I was blind, and they wanted me to show how to use their product for other blind people. They thought a blind person doing the blind thing would be. Unfortunately, I think that ended up not happening. Which is unfortunate because I would’ve loved to do that. But I came really close to doing exactly what you’re saying, basically, and teaching people how to turn this stuff on and use it, so.
NEFERTITI: Yeah, I think examples like that are really impactful when other people come across like, wow, that person seemed really effected, you know, in a positive way. I think that can be hugely influential for those out there watching. But John, what would you say to people who, and I’ve heard from a number of folks interested in this conversation tonight because they’re interested in getting into this. So, my question is, I guess, a two-parter. One, do you think that there could be impact if the number of critics, blind critics specifically, critiquing audio description in particular, would that be helpful for raising awareness? Is that something you would like to see? And then how could they get started? What would you recommend? How do you recommend they begin?
JOHN: I would say absolutely. Actually, I’ve had this conversation with Alex Howard, who’s, he’s in that group. He’s doing The Dark Room podcast.
NEFERTITI: Mmhmm.
JOHN: And we talked about trying to figure out, we’re trying to figure out a way how to start essentially what is the equivalent of a critics guild, but a critics guild for either, you know, some kind of like disabled critics guild or blind and visually impaired, like, or maybe d/Deaf and blind, some kind of combination, so that that way it brings attention to all of that, so that we can all connect and be stronger together and show people how many of us there are. I think they think we’re some sort of weird minority, you know, like, I don’t know, albinoism or something. Just like, “Oh, I’ve never met anybody who’s like that before!” So, they, we need to provide this service.
NEFERTITI: Mmhmm.
JOHN: Like it’s just some weird unicorn thing, like, “Oh, there’s a blind person that watches TV?!”
NEFERTITI: [laughs] Yeah.
JOHN: I guess. I don’t know. So, yeah. I mean, if we’re all out there talking about it and posting about it and getting on the socials and, you know, if you wanna, if you wanna do a YouTube, do YouTube. If you wanna do a TikTok, do a TikTok. If you wanna do Instagrams, do Instagrams. There’s a website called Letterbox. You can post stuff there. I don’t do Letterbox because there’s only just so many social media [laughing] things I can possibly handle!
NEFERTITI: [laughs]
JOHN: But yeah, there are plenty of places to post and share your reviews and your content, and you just have to start somewhere. Start maybe with a film that you like. Don’t put yourself with the challenge of reviewing something you’ve never seen before. Pick something that you like, that you know you like, that has audio description, and convince people why you like that thing. And then start about, and then start there and explain why the audio description matters to you with that film, why it’s helped you. And then just grow from there and just keep it going and keep talking. And don’t let anybody tell you to stop talking. Because the more noise we make, the louder we are, the more audio description we’ll get, so.
NEFERTITI: [applauds] Yes. Yes. I’m clapping. I love this answer. As someone who is part of a collective, right, of professionals, we’re all professionals in our own right, and we come together and we’re doing and making audio description, creating audio description and spreading the word about it, and, you know, just maintaining this quality of excellence, commitment to the audio description we create. I’m a big believer in people coming together, and like you said, you know, collect our voices. The louder we are, the more we’ll be heard, the further the message. So, if people would like to get in touch with you, how can they do that? If they want to explore this idea with you and join, you know, whatever ends up coming of your collaboration with others?
JOHN: Oh. Well, like I said, I’m on Instagram. It’s @MacTheMovieGuy. I’m on Twitter @MacTheMovieGuy. I am on Facebook as John Stark. If you send me a request, and you let me know why, like, send me a message also on Messenger and say, “Hey, I’m in the audio description community,” then I’ll know you’re not like a weird spambot.
NEFERTITI: Mmhmm, mmhmm.
JOHN: So, don’t just send me a weird friend request out of nowhere! But I’ll accept it if it’s for audio description. And I mean, I’m on YouTube. YouTube.com/MacTheMovieGuy. My website is MacTheMovieGuy.com. Any one of those ways, just reach out if you wanna talk about audio description in movies or anything.
NEFERTITI: Excellent. So, you have a number, a number of ways of getting in touch with John so that you can add your voice to what I personally think, and I think we all agree, is a pretty critical thing that you’re doing.
JOHN: I think I’m here because right now, I’m a unicorn, and I, as awesome as it would be to continue to be recognized for what it is that I’m doing, I would much, you know, I would also be okay with being a horse. You know what I’m saying? Something that you see a lot more common.
NEFERTITI: Mmhmm.
JOHN: So, if there were more blind film critics that were talking about audio description, I don’t mind that. It’s there are a lot of people out there on the Internet talking about movies, and there need to be more of us that are blind and that are talking about the accessibility. So, I know why I’m here. It’s because I’m a unicorn! And if I’m not, then that’s fine too. So, it means that more, that I started a fire and it caught on, so.
NEFERTITI: Absolutely. Yeah. Cheryl?
CHERYL: Well, I want to give Unicorn John Stark such huge thanks. We’re so appreciative. So, everybody, Mac the Movie Guy. 732 videos on your YouTube!
NEFERTITI: Wow.
CHERYL: If somebody wants to see how it is that you critique a film, and it’s not just like, “I liked this.” It is so detailed. You go into so much about character, acting, directing, plot, audio description. That’s the place to go on YouTube to watch 732 reviews.
JOHN: They’re not all reviews. Some of them are talking about the Oscars. I did try to bring people in with Oscar talk, so.
CHERYL: Excellent.
JOHN: Most of them are reviews, though.
NEFERTITI: So, about that, what did you think about the Oscars audio description?
THOMAS: [chuckles]
JOHN: I liked the Oscar Audio Description. I feel like there was something weird about the red carpet, but I can’t remember what it was. But the actual show was great. And I know [laughs] you did it. Yeah. Yeah. Yeah, the Oscars was, the show was great. I can’t remember what it was about the audio description for the red carpet though.
NEFERTITI: Maybe that there was hardly any because it was just talk, talk, talk, talk, talk, talk, talk, talk, talk. So, maybe like?
JOHN: That might’ve been it. I don’t know. You know, I don’t care about red carpet! I just was on it because I didn’t have anything else to do. So, it doesn’t really stick out in my memory. All I remember was was Hugh Grant just had that weird walk-off moment. But that’s it. Yeah. If you’d asked me a couple weeks ago, I might’ve remembered. I don’t know.
NEFERTITI: Well, you know what? You don’t have to remember because we can all go to MackTheMovieGuy.com and check out your review there.
JOHN: [laughs] Yeah.
NEFERTITI: So, do that, people. And, you know, full disclosure, I was one of the people narrating that, so that was a shameless question on my part. But thank you.
JOHN: Yeah, I knew. That’s why I said ‘cause I knew you did it.
NEFERTITI: [laughs] Yes! I appreciate that we got a good review from you. That means a lot.
JOHN: Yeah.
THOMAS: Cool. Cool. Well, thank you, John. This was good.
JOHN: Thanks, guys. Thank you so much for having me.
NEFERTITI: This was fantastic. Yeah.
JOHN: Yeah. If you don’t wanna set up your own thing, just throw me some follows or something and likes or something. Increasing my social media presence will end up increasing my voice in the long run.
NEFERTITI: Absolutely. Not everybody has to be advocate. Not everybody has to be a critic. But I do think it’s important that we support each other and we promote one another, right? Uplift. So, yeah.
JOHN: Absolutely.
NEFERTITI: Follow John everywhere. I certainly will. I’m really happy to get to know you a little better during this event. So, everybody, thank you for listening, whether live or on the replay through the Reid My Mind Radio podcast. We really appreciate you being here. And yeah, how do we close? I don’t even remember anymore. I’m so enthused by this conversation.
THOMAS: So am I. [laughs]
NEFERTITI: All right! See ya!
THOMAS: Peace, y’all.
NEFERTITI: Except not really, ‘cause I’m blind.
THOMAS: [chuckles]
NEFERTITI: Peace.

Music begins…
THOMAS: Cool. Well, that concludes this week’s conversation. Why don’t y’all keep the conversation going on social media.
CHERYL: Use #ADFUBU, for us by us, #DescribeEverything, and #AudioDescription.
NEFERTITI: And hey, you know we’re out here, right? Mmhmm! Gathered and galvanized y’all. If you haven’t joined us yet, what are you waiting for?! You can find us in the LinkedIn Audio Description group and the AD Twitter community. We know that your participation will only make these spaces better.
Music fades out!

Hide the transcript

Music begins
THOMAS: Welcome to the Blind-Centered Audio Description Chats. These are the edited recordings of the Blind-Centered Audio Description Live Chats!
CHERYL: The live is the most fun part! We get together, we start with a question, and then we invite up anybody from the audience who wants to come and chat with us, agree, disagree, shed light on something that we hadn’t thought about before, which is Nefertiti’s favorite. [electric whoosh]
NEFERTITI: I’m Nefertiti Matos Olivares, and I’m a bilingual professional voiceover artist who specializes in audio description narration! I’m also a fervent cultural access advocate and a community organizer.
CHERYL: I’m Cheryl Green, an access artist, audio describer and captioner.
THOMAS: And I’m Thomas Reid, host and producer Reid My Mind Radio, voice artist, audio description narrator, consultant, and advocate.
SCOTT B: Hi, I’m Scott Blanks. I’m a passionate advocate for the highest quality audio description in all of the arts. I’m the co-founder of the LinkedIn Audio Description Group and the Twitter AD community.
SCOTT N: Scott Nixon here. I’m an audio description consumer and advocate, hoping to be an audio description narrator very, very soon. [electronic whoosh]
THOMAS: Hey, Nef, why don’t you tell people how they could join the live recording?
NEFERTITI: That’s really simple. Just follow us on social media to keep up with important details, such as dates, times, and what platform will be using. On Twitter, I’m @NefMatOli. Cheryl?
CHERYL: I’m @WhoAmIToStopIt.
THOMAS: I’m @TSRied, you know, R to the E I D.
NEFERTITI: How about you, Scott?
SCOTT B: I’m @BlindConfucius. That’s Blind Confucius.
SCOTT N: And you can catch me on my social media, Twitter only. That’s @MisterBrokenEyes, Capital M r Capital Broken Capital E y e s.
[smartphone selection beeps]
CHERYL: Recording now!

Editors Insert
THOMAS: Greetings! Before we jump into this edited version of our live Blind Centered Audio Description Chat from April 5, 2023,
we wanted to let you know that we’re editing this discussion into two episodes.
The next episode will feature a Blind film critic who reviews films both with and without AD, in order to highlight the need for audio description.
Here’s Cheryl kicking off our discussion!
CHERYL: We were inspired to talk about what does it mean to critique or even analyze or assess or publicly or privately give your opinion about a film and about the audio description, because there seemed to be some feelings of barriers about who’s allowed to share their opinion, especially if they say, “I didn’t like something.” Who’s gatekeeping that? And who’s doing the gaslighting when someone does present their opinion, and someone else says, “No, that’s clearly wrong.” So, those were some of the things that came up. And I know Thomas, you wanted to talk about some of the ways that you do critique or comment on films.
THOMAS: Yeah. And so, even before that, I kinda wanted to go back in. ‘Cause something I’ve been thinking about is based on this conversation that we have several times, not necessarily here, but folks, we have these conversations in many different formats. And so, it’s like, you know, we often want to hear from other people, right? Other blind folks, other folks with low vision, other AD users specifically now, and sometimes we don’t really hear back. And I started thinking about that. Like, why is that? Why aren’t we hearing back from the community as much as we may like to? You know, that could be on the, for the purposes of advocacy. And by advocacy, I’m talking about all aspects of that: reaching out to AD producers, reaching out to the streaming companies, broadcasters. Even back when we were trying to get the CVAA passed, you know, reaching out to your representatives, all of that stuff. And we always wanna hear from people.
And so, specifically now, thinking about the process of talking about AD from the user experience, why don’t we hear back from them? And I think there’s a lot of things that we have to remember. Number one, AD, even today in 2023, is relatively new within the last maybe five years, maybe even a little bit more than that, maybe less than that. But five years, I think, is probably the most amount of consumption of AD that we’ve had in probably in our history. So, whether that be five years, ten years, it’s probably definitely within that last year since the CVAA has been passed. And so, in that sense, watching films with audio description is a new experience.
And I know me personally, when I started watching films with audio description, I was excited about every single film that came out because I had access. So, it wasn’t so much that I was watching this movie to critique the audio description. At that point, to be honest with you, there was many films, there were many films that I was watching that I wasn’t even critiquing the film. I was just freakin’ happy to be able to watch this film and enjoy it. And I think that is probably the same for a lot of people. Anytime someone would ask me about a film, I would always say, “Hey, look. I’m gonna tell you that I’m gonna rate this film high already because I had access.” Like, I was already giving one thumb up. [laughs] You know what I’m saying? I was already giving one thumb up just because it had audio description. And I feel like there’s probably a lot of people like that, and I don’t think there’s anything wrong with that. I really don’t.
I think it’s gonna take some time for the community to become more critical about audio description, and I think it’s gonna take more time for the community to become more critical about all aspects of that, right? So, the writing, we always talk about the writing. And we know some of it is better than others. But then also the film itself, right? Being more critical about what you’re watching. Because, you know, we have to do both. We’re watching the film, and audio description is that filter. So, we’re processing all of that at one time. And that in itself, you know, can be a lot of work, and not everybody comes to audio description to do that work. Most people wanna watch television and films and whatnot as their form of entertainment, you know, just to chill. And so, we might be expecting more from the casual AD user than we should, right? ‘Cause most of us who talk about AD who are really caring about it, most of us who show up here, who, you know, who advocate for it, we’re not the regular AD user. And so, I just wanna, me personally, be mindful of that because I don’t wanna see a situation where we’re sort of blaming and putting all this extra stuff on the community, like we go, “Aw, you gotta get out there, and you have to!” And it’s true. We do. We do need to do that. But when we talk about, “You gotta get out there, and you gotta voice your opinion on the audio description,” well, you know, that’s public speaking. Whether it be in writing, whether it be on a forum like this, that’s public speaking. And we already know that’s something that’s scary to a lot of people.
And then you add on to that it’s being critical. And we know this is a subjective thing, whether it be the audio description, whether it be the film. These are people’s opinions. And you know how we get. Just think if you’re one of those people who argue about sports and stuff like that, it’s just anytime that it differs, you can get into an argument, you know. Someone could come and say, “I really enjoyed this audio description. I liked the narrator. I thought it was great. They did a great job.” And then you get someone coming out and telling them, “Well, I don’t know what you’re listening to. That sucked! And let me tell you why it sucked.” Damn. That’s kind of, ugh, you know? [laughs] Who wants to give their opinion after that? Who wants to get into that fight? So, these are things we have to think about. And, you know, eventually, I think we’re gonna see a lot more of us being critical about AD and about films, but I think it’s gonna take some time. So, I wanna throw that out there for some food for thought. I don’t know. Maybe that’s a…. I don’t know if it’s a steak. Maybe it’s a little Chicken McNugget. I don’t know what kinda food that is.
NEFERTITI: [laughs]
THOMAS: Maybe it’s just a snack. I don’t know. Whatever. But if anybody wants to talk about that, Cheryl, Nefertiti, if y’all still there. Maybe I lost connection, and I’m talking to myself. [laughs]
NEFERTITI: Oh, no, we’re here. We’re here.
THOMAS: So, what do you think?
NEFERTITI: I guess I’ll chomp down on the snack a little bit.
THOMAS: Yeah, chomp.
NEFERTITI: I’ll just quickly say, you’re absolutely right that there is more than a handful, I think, of us, but definitely a certain number of us who are very vocal and who do stick our necks out there. I’m one of these people who critiqued something recently, rightly so. These were verifiable mistakes and things that were happening. And, you know, I was accused of not uplifting other talent and all this stuff. And that’s not, was not at all my intention. But when you play favorites, right, and you have your favorites—we all do. I certainly do—and somebody points out a flaw or something like that, there are some people who might take offense to that and let their opinion, out there. So, what do they say? “Opinions are like mmhmms. Everybody’s got one?”
THOMAS: [chuckles]
NEFERTITI: Accusing me of not uplifting other talent? That’s just, that was… That was incorrect. And I don’t think anybody else saw what I said like that, but that person did. So, does that mean that that person is incorrect? Yeah, I and others think so, but it’s still their opinion. So, Thomas, when you say, you know, somebody was like, “Oh, I think this is great,” and somebody came back like, “I don’t know what you were listening to. It sucked,” I think both opinions are valid.
THOMAS: Mmhmm.
NEFERTITI: You know? But just it doesn’t have to get personal. It doesn’t. You know, if the person that just said, “Oh, that’s interesting ‘cause I’ve listened to the same thing, and I thought it was terrible for this and that reason,” then that would’ve been perfectly fine.
THOMAS: Yeah.
NEFERTITI: I think it gets murky and nasty when you make it personal. Like, “I don’t know what you were listening to!” You know, like, there’s no need for that. So, maybe a little decorum, a little bit of manners could go a long way. But I think everybody’s opinion is valid.
THOMAS: Absolutely.
NEFERTITI: And I think it’s super important that for those of us who are advocating and who are not afraid to say possibly controversial stuff, one, we have to have thick skin, right? And two, not everybody’s going to always agree with us. Feelings might get hurt, you know, for sensitive types out there. You have to expect with anything that when you put yourself out there, there might be a little blowback from people who don’t necessarily agree with you. And that’s okay. I think a lot of good discourse can come from that. Different perspectives can come from that. I always say that I love to hear from people who don’t agree with us.
THOMAS: Mmhmm, mmhmm.
NEFERTITI: ‘Cause it might teach us something. It might give us something to think about.
THOMAS: Yeah. That’s your favorite. [laughs]
NEFERTITI: It is. That is my favorite thing. I agree with you. Some people just wanna watch a film and lose their mind in that film and then forget about it. Not everybody’s an advocate. Not everybody is outspoken. But I do think that we do need more people to be comfortable with being critical, not just this, “I’m grateful that it exists at all! So, let me not say anything bad about it, because what if they take it away?!” No, I strongly disagree with that.
THOMAS: Mmhmm, mmhmm.
NEFERTITI: I think audio description is here. It’s not going anywhere. It’s here. And I think the more en masse we present, the more unified we present as a community, the more seriously we’ll be taken and the further we will move the needle. I’m not afraid of it going away or, like, having repercussions that because we speak up so much, you know, it’s gonna be— I don’t believe that’s true. I don’t believe that will happen.
THOMAS: Yeah. Yeah. No, absolutely. I 100% agree with you. For my own, and for a lot of other people I’m sure, when I say I was just happy to have access, I was not coming from the perspective of, okay, I’m gonna give this thumbs up or whatever, because I’m scared it’s gonna get taken away. No, not at all. It’s just about, you know, you have to remember that for grown folks, you know, and even some of the younger folks, this is, these last few years are almost like this sort of Renaissance in terms of what they have access to, in terms of film.
NEFERTITI: Yes!
THOMAS: And to expect folks to be able to just be really critical, we might be expecting too much. And I think what you said about the venue in terms of where they voice it, you know, if you’re doing that in social media, if you’re doing that in a closed, which I’ve noticed, too, is that in a closed sort of forum like a Facebook audio descriptions list or something like that, right, or an email list, there’s probably gonna be more of that taking place because it’s a somewhat controlled environment. There are rules around there, right? We invite people to come in here, and when they step in here, we’re not gonna take any nonsense. We’re gonna keep everybody, “Hey, no. We wanna hear from you if you have a difference of opinion. We’re gonna respect that.” So, this is a controlled environment.
NEFERTITI: Mmhmm.
THOMAS: But if you’re thinking about— ‘Cause I often wonder, like, I don’t see as much on an open forum like Twitter, where I think it is important to have it because that’s when other folks are gonna see it.
NEFERTITI: Yes.
THOMAS: But I’m realizing that might not be a safe space for people. People don’t feel that that’s a safe space. I gotta understand that and remember that. Yeah, that’s true. That might be true for people. So, but I still think it’s important for folks like you, whomever else, you know, say what you gotta say. But yes, be respectful. But, you know, you can’t control it. And like you said, if you put it out there, just expect that something’s gonna come back. Something’s gonna come back. There’s all the other -isms that come into play where people think they can just say something to somebody, and they wouldn’t say that to someone else.
NEFERTITI: Mmhmm!
THOMAS: And so, unfortunately, you might get more. You might get more than I would get because I think people might check themselves.
NEFERTITI: Oh, yeah. As a brown, blind woman.
THOMAS: That’s a good thing to do. That’s a good thing to do, by the way. Check yourself if you’re gonna come to me. I’m just letting you know.
NEFERTITI: [huge laugh]
THOMAS: I’m just letting you know!
NEFERTITI: Check yourself before you wreck yourself, okay?
THOMAS: Yeah, exactly. Yeah.
NEFERTITI: [chuckles] Yeah, no. It’s absolutely true. Like, as an outspoken brown, blind woman, you know, like, yeah, some people just, some people attack just because, you know?
THOMAS: Yeah.
NEFERTITI: Just because. So, I do expect it, and I’m thick-skinned. Some things do get under my skin, but guess what? You’ll never see it. I won’t show it to you. I might talk to Thomas. I might talk to Cheryl. I might talk to my partner. I might scream into my pillow.
THOMAS: [chuckles]
NEFERTITI: But that’s not like the kind of thing to give these sorts of people the ammunition to keep on, you know, attacking you. But also, because if you’re sure of what you’re saying and you stand behind it, I think that’s very brave of people to do.
THOMAS: Mmhmm.
NEFERTITI: And I think it’s really important that we just don’t accept the status quo. If there’s a show that you really like that clearly did not go through QC, what’s wrong with saying, “Hey, this is not okay. This is why blind QC is so important.” And QC for that matter, for some of the quality that’s being put out there these days. Any QC would be an improvement over this. Some people would take a lot of offense to that, right? You know, I think it’s important that we let these things be known, that it’s being noticed, that there is a community out here watching this content and paying attention. And if you’re not doing something right, you’re not doing, you know, putting in the care that it deserves, then if you get shamed, I think that’s okay. Maybe it’ll motivate them to do better next time, you know? We deserve that. At the very least, we deserve to have care in the access that we, you know, literally paid for, right? A lot of these streaming services, we’re paying for this stuff just to get a crappy…. I’m sorry I get so speechless with this stuff because it’s so infuriating to me.
THOMAS: What’s your experience with film before AD? Did you get personal audio description at home? What was your? I never asked you that. If you wanna share here.
NEFERTITI: Yeah, absolutely. You know, it’s interesting because these days when I watch something that I’m really into…. In fact, let me give you a real-world experience or, yeah, an example. So, my partner and I really like Family Guy.
THOMAS: [chuckles]
NEFERTITI: And we’ve been going through the seasons. There’s like 20-some-odd seasons. Season Nine is not described anywhere that we could find, and we tried. We tried recently to watch an episode from that season, and we had no idea what was going on! There was so much music with very little sound effects, very little dialogue that we were like, “Well, if this is the first episode of this 20-odd-episode season, you know, we’re just gonna have to go without because there’s no way that we can follow along.” And it got me to thinking, how were we watching stuff before audio description? And so, he and I had this whole conversation about we really don’t know how we got on without audio description before audio description! I think we just made do. I love the show The Golden Girls. Absolutely love that show. I started watching that show when I was nine years old, and it was only recently that it got some description. I’m realizing, based on the description, that so many of the scenes I thought I knew what was going on, I was completely wrong!
THOMAS: Mm.
NEFERTITI: My brain filled things in, and I was wrong so much of the time. But how do I know that? Because I now have description. I spent years thinking the wrong things were happening in the show. They made sense in my brain.
THOMAS: Yeah.
NEFERTITI: But it’s not what actually was happening.
THOMAS: How do you know that what you’re being described, what’s being described is correct?
NEFERTITI: Honestly?
THOMAS: Yeah.
NEFERTITI: You don’t. You have to trust and have faith—
THOMAS: Aha! [laughs]
NEFERTITI: —that you’re being told, giving, being given accurate information.
THOMAS: Uh-huh.
NEFERTITI: For example, let’s say in a scene, right, I thought one of the characters was, I don’t know, stirring some pasta in a pot. Turns out that actually, she was, like, I don’t know, serving a dish at the table, right? So, not a huge difference. It was still in a kitchen. It was still an action of some kind, but it was different. So, from my making up oh, she must be stirring the pasta in the pot ‘cause they’re talking about food to the describer not telling me, you know, “She stands at the table and serves from a platter,” I have to trust that that’s true ‘cause I’m assuming that nobody’s gonna lie about something visual simply because they’re saying it presumably to a person who can’t see it for themselves. But, yeah, the truth is that I don’t know.
THOMAS: That’s right. You don’t know. And you just said it, and I’m so glad you said it: trust and faith. Because that’s exactly what it is. Now, factor in when we ask folks to give us their opinion, and you’re nervous that someone else might tell you the opposite or disagree with you. And then sometimes, you know, it comes down to, well, damn, how do I know? Even your opinion is based on this audio description, is based on trust and faith. And then when you’re arguing with somebody or even when you’re just discussing something, maybe this, has this ever happened to you? You might be discussing a film or television show with someone who’s sighted, and then your interpretation of what happened was off?
NEFERTITI: Yes. Yes.
THOMAS: So, why in the world would you want to talk about films or anything in public again? So, you see the fact that we have to do that, and we’re using our trust and faith, right? And we already have all of these other things sort of, you know, again, with the idea that you’re somewhat new to film in a way, for a lot of people.
NEFERTITI: Mmhmm.
THOMAS: I don’t necessarily consider myself new to film. I was watching before I lost my sight, but I watch differently now.
NEFERTITI: Right.
THOMAS: And so, sometimes, I’m, I still might be really hesitant, or I’ll do, before I talk about it, I confirm. I might confirm things with other people. “Hey, is this correct? Is this what you see? Is it?” You know what I’m saying? I might do some of that to make sure to have things right. But yeah, that’s another part of it. Trust and faith is the way we experience content.
NEFERTITI: Uh-huh.
CHERYL: And Thomas, I think there’s also a trust issue—I’m gonna come from the sighted audio describer perspective—I think there’s a trust issue, too, where there are some audio describers who inherently don’t trust the opinion of the blind consumer.
NEFERTITI: Mm!
CHERYL: I’m not sure why or where that comes from. It could be, you know, “I don’t trust anybody unless they’ve gone to this institution and are credentialed or certified.” I don’t know what it is, but I have, it’s not universal, but I’ve noticed some people have a bias toward, “Well, I’m trained, so my opinion of what was good or bad audio description is more valid and better informed and more useful than opinions of the AD consumer.” And I think that’s a real problem. And I think that on the non-blind side, we need to check that bias, notice that bias, and do something about it, and really say if the end user is the person whose opinion matters most, then that’s who we should always be asking. So, you’ve talked about some barriers people may face to wanting to give a critique, and I think this is another one that’s real important. Not that somebody’s gonna take your audio description away, but that you’ll be discredited or ignored or talked about behind your back about, well, you know, “What does Thomas know? He’s blind! He doesn’t know what good audio description is.” And that is a bias that I think for any sighted people here listening to this or listening to the recording, stop and ask yourself if you might have that. Because you won’t know until you stop and ask yourself. And it’s something that I think really needs to be addressed in the community of people who provide audio description.
THOMAS: Mm. Absolutely.
NEFERTITI: 100%.
THOMAS: Absolutely. And [big sigh] if that person, right, so, if a user of AD has a good experience, they walk away from that film, that television show thinking, “Wow, I enjoyed that.” And then they hear someone telling them, “No, that was bad! You shouldn’t have enjoyed that,” that really is…that’s awful. [laughs] That’s awful. And it kind of goes against…. [sighs] Like, I’m all for better AD, that it meets certain criteria. But I also know that this stuff is subjective, right? And so, I’m not talking about the AD that breaks the quote-unquote “rules.” Like, the AD that’s telling you that the phone is ringing when you hear the phone ringing. I’m not necessarily talking about that. But it feels like, you know, the name of what we do here is Blind-Centered Audio Description Chats. And that scenario that you gave, Cheryl, is totally not centering a blind person, right? It’s centering the person who’s providing the service. [laughs]
NEFERTITI: Mm, mmhmm.
THOMAS: And I say that on purpose. The person who’s providing the service. The service provider. Mm! The person with the certification. Yeah, that’s interesting.
NEFERTITI: Well, I’m one of these people. And here we go with a controversial opinion. Just ‘cause you may have a letter or three or ten behind your name doesn’t mean that you’re necessarily the smartest or the most, mm, appropriate person in the room to speak on whatever. I understand that those, we put so much stock in, you know, yeah, certification. And, you know, those things are supposed to say, “Hey, yeah, this is what qualifies me to be here and say these things.” Just like at the top of our gatherings here, we say, “Hey, I’m Nefertiti Matos. I do this, then the third. I’m Thomas Reid. I’m Cheryl Green.” And you know, to let you know, hey, we’re here. We do this. Hopefully we know what we’re talking about, and yet we don’t have letters behind our names. And I think we’re some of the smartest people, most with it people out here. And yes, that is an opinion, and I’m totally biased.
SCOTT: Hi, everybody. I’m Scott, consumer of audio description and dabble in quality control in the field as well and have a day job in a non-profit blindness organization. So, it’s so interesting, Thomas. You were talking about how things changed. I was thinking back to in the early aughts, in the early 2000s, I would look for, and sometimes be successful finding, scripts online, like a complete movie script. And that was the closest I could get to audio description for some films, and I was thrilled with that experience. And I look back on it now and all the time that I spent searching those things out and still knowing that my access was not the same, you know, it just, it proves the point that we are beings in motion and that we’re constantly, hopefully, changing to some extent, learning, getting better, and looking for better.
There was also recently a discussion—it’s still going on, actually, I would say—in an email forum about audio description about synthetic speech versus human. And I had to kind of check myself because one of my initial reactions was frustration with people who just said, “I’ll be okay with something rather than nothing.” Because I think we’re all at different points on the journey, right? And there are people who have been used to a certain thing for so long that change can be challenging. But I also feel that it’s really important to continue to advocate. And I think we can advocate and show by example, and people will start to catch on to that. And I think it’s also a point that in that same conversation that was happening on an email forum this week, there were a number of people asking like, “What can I do? What can I do to get more involved?” And even that, I think, is a huge improvement. I think that the Renaissance, like you called it, Thomas, that’s a good word of what’s been happening in the last six years, five, six years, we are seeing a little bit of a wave building of people wanting to get more involved either professionally or even just to advocate. So, we keep setting the example, and I think we’re going to see good things coming.
THOMAS: You know, what Scott was talking about, it was really interesting, though. That’s amazing. Like, you’re going and searching for a script of the movie.
SCOTT: Mmhmm.
THOMAS: What made you do that? What was it about that particular movie that made you just need to know about what’s going on?
SCOTT: Honestly, I think I did it with most of the movies I was watching, and I was watching fewer movies. I mean, listen, at the time, 2005 versus now, let’s say, to me in my mind, there are a lot more things to watch now.
THOMAS: Yeah.
SCOTT: I don’t think it’s arguable that that’s the case. So, I would do it by default with everything.
THOMAS: Mm.
SCOTT: How did I start? I don’t remember. I just remember that like, I was trying to find any way I could to get to know more about the movie.
THOMAS: Mmhmm. But was there a specific reason in terms of that movie that?
SCOTT: No, I did it with a bunch of movies.
THOMAS: You did it with a bunch of movies, okay.
SCOTT: I probably, I don’t know, I would say my success rate was like, 15 or 20%.
THOMAS: Oh, wow.
SCOTT: Why were there complete scripts online? That’s a great question, too. I have no idea. That was maybe something that shouldn’t have been happening. But it was great ‘cause you got the scene setting and the scene transitions, the camera angles, and everything.
THOMAS: Right, right.
SCOTT: So, it was a form of audio description.
THOMAS: Mmhmm.
SCOTT: But [laughs] would I do it now? Probably not.
THOMAS: Yeah. Aha, yeah. That story, Scott, reminds me of like, you know what they say about water.
SCOTT: Yeah.
THOMAS: You know, water’s gonna, water’s gonna get through. You’re gonna find what it is that you’re looking for. You’re gonna find a way, which is audio description.
SCOTT: Yeah.
THOMAS: I mean, you know, the fact that blind people wanted access, and we find a way, we’re gonna find a way. Like, that, that is the thing, man.
SCOTT: Yeah.
THOMAS: Yeah.
SCOTT: Water will take its shape, find its way.
THOMAS: That’s right. That’s right.
NEFERTITI: I love that.
THOMAS: I’m gonna have to look up some scripts.

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THOMAS: Cool. Well, that concludes this week’s conversation. Why don’t y’all keep the conversation going on social media.
CHERYL: Use #ADFUBU, for us by us, #DescribeEverything, and #AudioDescription.
NEFERTITI: And hey, you know we’re out here, right? Mmhmm! Gathered and galvanized y’all. If you haven’t joined us yet, what are you waiting for?! You can find us in the LinkedIn Audio Description group and the AD Twitter community. We know that your participation will only make these spaces better.
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