Reid My Mind

TR:
Welcome back Reid My Mind Radio Family, as we move forward with our Art of Adjustment season.
As mentioned, I’m doing something a little different with these series of 8 episodes.
Each episode featuring the conversation with my guest, will be followed by a separate episode more personal to me. Based on some aspect of our conversation that resonates with my personal experience of adjusting to becoming Blind.

The purpose?

A challenge to myself and us all to really find the ways we relate to others. I think it could prove to be encouraging.

You know, my guest actually breaks it down.

Krystle:
in order for you to move forward, you have to find within yourself to accept that maybe this is how I’m going to continue on with life, be visually impaired. And that doesn’t mean that I can’t have joy. That doesn’t mean that I’m not going to live a full life. It’s going to be some challenges, of course. But it doesn’t mean that there is no life after it.

TR:
That’s Krystle Allen, from Newark, New Jersey.

Stand up Jersey! (Filtered voice as if on a telephone)

The co- founder of Eyes Like Mine Incorporated.

Krystle:
I am a short five, one and a half Afro Latina female. And I have curly wavy hair to the middle of my back. A nice round face, A rich chocolate brown complexion, a nice smile, dark brown eyes.

I am legally blind.

TR:
In addition to all of that, Krystle is the eldest of seven siblings and a proud aunty.

We’ll get into our conversation, but y’all know I need my intro music!

— Reid My Mind Intro

TR in Conversation with Krystle:
I want to first talk a little bit about adjustment in general, that’s a big part of what this season is all about. So, can you talk a little bit about the early days of your adjustment?

Krystle:
My adjustment to vision loss, it took a while to pack its punch at me.

Before losing my eyesight, I had never met anyone who was visually impaired or anywhere along the spectrum of vision loss.

Once that was given to me in different settings, from a medical perspective to just people I know who had the lived experience I began the process of accepting it.

TR:
I’m a firm believer in the power of people in our adjustment process.
While many different people play a role, there’s just something special about lived experience.

Krystle:
I think my family was going through it a little more than I was at first because they wanted to be there for me. And sometimes they were a little overwhelming with being there for me. But it seemed like they were going through whatever stages of adjustments originally more than I was, because I spent a lot of time with treatment for a year, with my condition in and out of different facilities. I was quiet at first, and very unsure. So, my family was very concerned about me being so quiet, because they didn’t know what I was thinking or how I was feeling about my new lifestyle now.

TR:
Still unsure of what it meant to be legally blind, Krystle, like so many of us experiencing blindness focused on how that would limit the things she’d be able to do.

Krystle:
Little by little, I just kind of tested myself, just because I wanted to try to begin being curious enough. I wanted to just like be the big sister and do the things that older siblings do for the younger siblings. And then I was also being a little selfish.

Music begins: A twisting synth opens up into a calm, mid tempo bounce.

My little brother, because he was turning six and learning his colors. I asked him do you know, red, yellow and green? And he’d say yes.

So when the light turns green, that means we can walk. When it’s yellow, we might have to speed up or slow down, or just stop. And when it’s red, we just gonna stop and he’s like, okay, okay, I was like, you have to hold my hand. He’s like, alright, so I wasn’t using a cane at the time.

TR:
Not unless her little brother’s name is Cain! (Chuckles) But she was a teenager, what do you expect?

Krystle:
And at that time, I was like the in house babysitter even more because my siblings were younger, my mother had to work. My grandmother was working. Everybody was out living their life.
When they needed a babysitter, it was me. So when me and Nick were alone, we would sneak out the house and go to the bodega and get us candy and junk and all the stuff we like, because one thing my family likes to do is give me a little change.

— Sound of change and money.

And then it turned to catching the bus downtown and going into stores to shop for clothes and I always made sure he had his McDonald’s and whatever.

And then one day, my mother found out me and Nick was out.

Sample Exhale… Ooh! You’re in trouble now.

Krystle:
That turned into one day my mom really really needed someone to pick up my other siblings from school and so she realized that I got back home thing, she was like, (in a voice as if imitating her mom) )”Krystle can you go pick up the kids from school?” And I was like, oh, oh now I can go pick them up huh?

TR in Conversation with Krystle:
Chuckles

Krystle:
Being the oldest, I had to do a lot. I learned how to cook at nine years old.

My mother tricked me. She was like, (In a voice as if imitating her mom ) “Oh, you like scrambled eggs, right? (Chuckles) Do you want to try and make some scrambled eggs? So she’s showing me how to do it because I do need to know how to make it. And then all it took was that one time. “All right, Krystle, come make the breakfast for the kids.”

TR in Conversation with Krystle:
Laughs

Krystle:
(Chuckles) Then scrambled eggs turned into baked chicken. But you know, my mom was giving me good tools to set me up for being just independent without having any vision loss.

That was kind of like me stepping into different stages of my independence again, because I was getting my role back as a big sister. I was learning me and my family was learning me as a person who was legally blind.

And then more and more things started happening with my adjustment.

TR :
Eventually losing even more of her sight, Krystle learned to use the white cane.

She used thick markers to start expressing herself in poetry. She began meeting others who shared tips for adapting. She was on her way to figuring it out.

Krystle:
I wasn’t sure of my vision limitations. It just took me so much longer to do things. But I realized that once I did try to see if I could still do what I would do regularly, that it was still achievable. I just had to either use a tool or figure out a different technique.

TR:
One of the things she figured out; Eyes Like Mine.

Krystle:
I worked in the field of different nonprofit non related to blindness in the support capacity. I have always been a part of community development. My dad’s side of the family. They’re very involved in community building in Newark where I live. My dad would pick me up and spend time with me, he would always take me to meetings. And then when I was at the meetings, I began volunteering. From stuffing envelopes to doing telephone banking, to canvassing around communities.

TR:
This exposed her to not only an understanding of activism and leadership but also influential people in the community.

Krystle:
Our current Senator Cory Booker, he was at my 21st birthday party. And he was very instrumental in me getting connected with the New Jersey Commission for the Blind to receive some of my blindness services. And I used to go to his meeting, volunteering, and canvassing and being a part of PSAs as a teenager, before my vision loss, and after my vision loss. So it was kind of like embedded in me.

TR:
Serving the community that is. Maybe it’s from observing other family members or being the oldest of seven, either way Krystle is a natural leader and problem solver.

While going through a breakup she came to a realization.

Krystle:
He’s not even thinking about me right now!

I called my friend, who we both share the same condition that led to our vision loss. And I just asked her, I said, Hey, you want to start a nonprofit organization? And she was like, Yeah I’m with it.

Neither one of us knew what was really going to happen. We didn’t have like a blueprint at first. And we were just thinking like, we’re young. We’re women of color. We’re visually impaired. But it wasn’t a lot of young people that we knew of at that time, in New Jersey, that were doing things to bring awareness.

In 2014, we were able to draft our bylaws and articles of incorporation. And in 2015, we received our 501 C three tax exempt status.

TR:
They began with events like a fashion show where they teamed up with an eye wear company and modeled cool looking shades.

Krystle:
We wanted to kind of like debunk the stigma of Ray Charles glasses. We want to be in style, but we also wanted to bring awareness to people about the importance of protecting their vision, and encourage blind people to feel good about fashion. We didn’t want to remain so event orientated because we really wanted to get to the nitty gritty of things where we can find ourselves connecting with other people’s stories in the blindness community to share their stories and our stories with our community near and far.

TR
That led to other programming including support groups, partnerships with the Lyon’s Club, the Miss Blind Dive Empowerment Pageant and Dancing with the Blind.

Krystle:
And some of these titles and names of programs might sound a little, I guess, funky, to some people, but they are heart feeling, programs and projects.

There were people who doubted us. People who said we should give our idea to other nonprofits under them.

TR in Conversation with Krystle:
Really!

Krystle:
Yep. And if we would have listened to them, we wouldn’t be making it this year to our 10th anniversary.

TR in Conversation with Krystle:
Wow. Well, congratulations on reaching your 10 years.

What was that about, folks telling you to give your ideas to other people?

Krystle:
It could have been many different reasons. Sometimes just the lack of understanding where we were going, what our vision was, everything is not for everyone. I understand that in the field of community development and nonprofit you’ll meet all types of people with different roles and agendas. I have learned that you’ll meet the “Taters”. The spectators, the haters, the speculators, the commentators. You know? (Laughs)

TR in Conversation with Krystle:
Laughing…

Krystle
All of those taters. (Laughing)

TR in Conversation with Krystle:
The Tater Tots! (Laughing)

Krystle:
I just know that we have been very blessed. I’m still very grateful. Because I’ve learned so much. I’ve made mistakes within my nonprofit. But with those mistakes I’ve learned from them, and it’s given me opportunities to really grow as an individual and grow as a leader.

Every leader doesn’t know everything. And is the reason why we need communities to support us so that we can elevate and we can continue to enhance our impact.

Leaders need people not just to serve, but to guide them too.

Audio from a prior Miss Blind Diva Empowerment Pageant:
Co founder Naquela Wright Privo:
“This is about empowerment right? And so I wrote this song to explain my journey with my blindness and where I’m at now. Singing….
No more with the hiding, no more with the jokes, I’m going to face everything I don’t know
It’s time for me to live my life
And I can’t believe I found what I wasn’t looking for”
… continues under TR VVO

TR:
The Eyes Like Mine Miss Blind Diva Empowerment Pageant began first with an open call for nominations of a Blind woman who is a pillar in their community.
Someone who stands out.

Krystle3:23 AM Friday, February 9, 2024
In a way that made you want to connect with more women who are visually impaired and blind.

We announced her in our first year anniversary at a restaurant called Diamonds in the rough. Jay Z’s mom, Gloria Carter actually was one of the owners.

We were able to welcome Patricia Eboo (Spelling uncertain)as our very first. We crowned her and she gave a speech. We decided, to do a full pageant. And we knew that it would be the only one for blind women in New Jersey. And we just wanted to bring more attention to more dynamic women in the blindness community.

A pageant coach, we had a host, we had a DJ who is blind, Mary Kay, makeovers for our ladies.
Since 2017, we have had a pageant every year, even during the pandemic, where we had two virtual pageants in 2020, and 2021.

TR:
From it’s origin, Miss Blind Diva was never your typical beauty pageant.

Krystle:
We do emphasize the word empowerment because a lot of women who have applied and participated, it may have been their very first time participating in a pageant. And the name came from a nickname I gave myself when I first began college, which was Miss Blind Diva.

TR:
It’s actually sort of two pageants in one.
Miss Blind Diva Empowerment and the Miss Independent YouTube Challenge.
For the latter, contestants submit a video on YouTube that displays their independence.
That could mean so many things for each person.

The winners are determined based on the number of likes.

Krystle:
And then that evolved into getting a crown and sash, a fan page, some small cash, and other different things like photo shoots and interviews, being a part of the public service announcement with a local cable channel to even attending the ultimate women’s expo and meeting Fantasia and Abby from Dance Moms, like it’s really been growing and growing and growing.

TR
Of course Miss Blind Diva also wins prizes.

Krystle
Now she receives $1,000, the title, the crown, different appearances that the organization is that
her fan page. Mondays now at 7pm where you can connect with our title holders, on their fan pages. And they’ll speak about things of interest things related to blindness, things related to them being the title holder.

We’ve had women participate as close as New Jersey, Texas, California, Maryland, Florida, Pennsylvania and as far as Kenya, Russia and Jamaica.

TR:
Is the next Miss Blind Diva part of the Reid My Mind Radio Family?

Krystle:
and we just hope that this year will bring another great experience. It will be the eighth annual Miss Blind Diva Empowerment Pageant , which we will hold on October 4, and fifth and 2024.

TR in Conversation with Krystle:
Are there pageants Like that in other states that you know of?

Krystle
I’m not sure, I don’t like to spill out inaccurate information.
I do know that they have Miss wheelchair New Jersey and Miss wheelchair America. There’s one called Miss amazing for another disability community that I’m not really familiar with. So there’s all kinds of pageants but I haven’t heard of another one that is for blind or visually impaired women. But I know that we were the first in New Jersey,

TR in Conversation with Krystle:
Well, I’m gonna say you’re the first in the States period. That’s what I’m gonna say. Anybody want to correct me bring your receipts? Let’s go!

Krystle
Laughing….Oh my goodness!

TR:
I respect that commitment to accurate information even when marketing.

No need to lie or stretch the truth when you have catchy phrases like….

(TR in Conversation with Krystle: plus)
The first one that I noticed was Going growing and glowing. Is that right?

Krystle:
So it just happened that during one of our witness support groups, I was just kind of sharing a message with the attendees. And I just said, you know, we are looking forward to our 10th year anniversary and we’re counting down to just evolving and expanding and going growing and glowing.

TR:
Her friend and co-founder Naquela Wright, thought that could be a good slogan.

Krystle:
It represents where we are going, how we are growing, and how we show up shining around the world. It just represents a lot of empowerment, not just in women, but in the blindness community. For us to have the visibility that we deserve in all areas.

TR in Conversation with Krystle:
Ok! That’s a whole other G status. I like it.

TR:
Then there’s; Eyes Like Mine Where vision loss doesn’t break us, it builds us.

Krystle:
There is life after blindness. It’s an opportunity for us to just connect with the life that we can still assume, the acceptance of our lifestyle, and the culture of blindness.

in order for you to move forward, you have to find within yourself to accept that maybe this is how I’m going to continue on with life, be visually impaired. And that doesn’t mean that I can’t have joy. That doesn’t mean that I’m not going to live a full life. It’s going to be some challenges, of course. But it doesn’t mean that there is no life after it.

TR in Conversation with Krystle:
That’s a perfect way for you to tell me a little bit more about the support groups that you offer.

Krystle:
Usually, the structure of our support groups are that we have featured speakers, we may play some virtual games. We often make sure that everyone who’s attending can exercise their voice, we want to make sure that it’s a talk with you not a talk at you.

The support groups right now are all virtual.

Every first Thursday of the month at 7pm. On zoom, we will have our women of Power Support Group.

TR:
In addition to the Women’s group there’s a men’s group. And periodically, they come together. I had the honor of being a speaker during one of these joint sessions.

I gotta be honest y’all, I think I lost the fellas that day.

I joked about how their name was something like Gentlemen of Leisure while the women are Women of Empowerment. I suggested they step up their game. It was a joke.

They didn’t like it.

Ok, in hindsight, perhaps it wasn’t a good introduction.
I still think it was funny

Krystle:
I’m listening to you, fellas. I really, really am. I’m trying to do more things that represent the men. And I need men to guide me because I don’t know, your life. And my voice was so light. I’m like, Are they gonna even listen to me? I have some men coming at me. Like, why isn’t there a pageant for the blind men?

TR in Conversation with Krystle:
If that’s the case organize it. See how many people you’re gonna get! (The two laugh….)

TR:
I’m saying, fellas. I don’t know what that would look like but go ahead and put it together.

As with the other programming from Eyes Like Mine, Krystle recognizes the importance of understanding that our conversations and interest go beyond blindness.

Krystle:
We have our leisure moments within the support group. It’s important that we kind of had the diversity and conversation. So that’s why we don’t just speak about blindness. And sometimes there are people who are new to the visually impaired community and some who might be a little more suited. So it’s a mixture of all kinds of people. It’s all adults.

Krystle:
Our support groups are under a network through the New Jersey Commission for the Blind and Visually Impaired. Aspire peer support network where it is over 60 plus, peer led support groups across the state of New Jersey, virtually and in person. And Eyes Like Mine organizes the support under this network, so that more people can connect with information resources, and the overall socialization.

TR:
For those who may not be the type to want to have in person conversations whether virtual or not, Eyes Like Mine has you covered.

Krystle:
So we have a group on Facebook called the Peer Support Hub, a division of Eyes Like Mine And anyone can join it. It’s a private group. So you can request access. And there’s a little over 300 members in It. It’s a space where you can share your thoughts, your images, your videos, if you have events or programs like you have your show Thomas , we want your posts about your interview.
It’s a safe space, it’s a way that people can access more information and meet more people.

I’m gonna do my first live cooking. It’s called crushing it in the kitchen. And I’m gonna be showing my guess, viewers how I use my independent skills to cook in my kitchen.
And it’s also a way for me to be encouraged to cook because I’m living the single life and Uber Eats gets expensive. I can cook, I just hate the process. I just wish that the meal would appear and then you know, and then the dishes would disappear

TR in Conversation with Krystle:
You gotta work on that one. (Laughs )Let me know when you get that going. Yeah.
So what’s on the menu? What you cooking? Not those same scrambled eggs, right? (Laughs)

Krystle:
(Annoyingly)You know what? No!

TR:
Ok, y’all, apparently I have to work on my humor. It was a joke.

But what’s no joke is Krystle, doing her thing.
Krystle
I’m gonna try to make it as regular as I can. It’s a personal thing. But it’s also in conjunction with my organization, because there are a lot of Blind people who are afraid to cook. There’s a lot of people who might just make easy things. Why shouldn’t we expand our idea on being comfortable in the kitchen?

I’m going to try to do a step by step with all of my process, and I’m gonna make mistakes because this is live (chuckles) it’s not scripted and it won’t be edited.

To those who are visually impaired or blind, it will open up their minds to the possibilities that if they don’t feel comfortable cooking right now, there is still hope that they can become comfortable. And it’s okay to make mistakes.

When I do make mistakes they’ll know that okay, it’s alright to make a mistake. You could still finish cooking your meal.

TR in Conversation with Krystle:
That’s a great metaphor for adjusting period.

Music begins: A bright and cool upbeat Hip Hop jam.

TR:
Adjustment doesn’t have to be painful!

Support also looks like Dancing with the Blind.

Open to all age groups, it’s the Eyes Like Mine version of Dancing with the Stars.

Krystle:
But in this instance, our celebrity is the blind, or the visually impaired or the deaf blind. And their partner will be someone who’s sighted. Dancing with the Blind can be coupled in a group of two people or more. Once you find your person or if you need us to find a partner for you, we can do that as well. You can select whatever genre of dance or music that you want to prepare for. They have to pick a team name, they have to have a particular kind of costume, whatever represents their style of dance. It’s judged. And we have vendors who have resources, products and services. We have host, our DJ pumpin’ it up. At the recital competition, whoever wins at the end will go home with $500.

TR:
Even Newark’s Mayor, Ras Baraka, son of the writer, poet and activist Amiri Baraka participated.

The event, which sounds amazing, concludes with a group choreographed dance.

Krystle:
Our champions from 2023, Their team name was called Hot muffins.
It was a couple of people, one who was newly visually impaired, the young lady her name is muffin. And her partner His name is Chris. They did a Latin fusion to Taki Taki the song that features Cardi B. It was really fly how they did their dance.

Muffin is very new to the visually impaired community. So it was just such a emotional victory for her when she won.

So we’re looking forward to bringing it back. This is also going to be with the support of the Newark Arts Council who selected Dancing with the Blind at their art start many grants application. This is our first time bringing it back to Newark since the pandemic,

TR in Conversation with Krystle:
okay, I love it. I don’t know if I want to take that money, but I’m gonna have to think about it. (Laughs)

Krystle:
Yes! C’mon Thomas.

TR in Conversation with Krystle:
So it has to be two people, I can’t just come in by myself and just do the Wop? I can’t just Wop it out.

Krystle:
WHAT? No. No. Mm, no, not at all. (Laughs)

TR
Y’all are lucky. I don’t play when it comes to the Wop.

Krystle along with her dance partner Tony who is also Blind teamed up for some salsa dancing.
! (Filtered voice)

TR:
Eyes Like Mine, Miss Blind Diva Empowerment, Miss Independent, Support Groups; all of these programs focus on providing for others.

Krystle:
This may I will be entering a milestone birthday year. I will be 40 And I realized that I do a lot for other people. And it’s very rewarding to me, because that’s just in my spirit. But I need to start doing more things for myself personally.

So one of those things, is challenging myself to have different experiences.

I was born and raised in Newark New Jersey. And this is where my organization was founded also. So I just wanted to do something that represented my city. And that kind of had a correlation to some of my interests, which is fashion and connecting with people. So I entered the Miss Newark USA pageant.

TR:
The goal of Miss Newark USA, created in 2018, is to spread awareness of pageantry, with workshops, etiquette classes, modeling classes, and amazing experiences to enhance careers.

Krystle:
Directed and organized by Alicia Marie blanks. And her mother, Miss candy a mother and daughter duo, women of color. So that was even more empowering for me to participate in it.

TR:
Like other pageants, Miss Newark USA consists of different competitions including congeniality, fashion and talent

Krystle:
I sang the song “Vivir Mi Vida” by Marc Anthony, which means living my life, I thought it was a very great song to represent who I am, because I am just doing that living my life. And just being curious enough about what goes on in life to attach myself to different things.

And then when it was time to announce who will be crowned Miss Newark USA 2023 They announced my name and I was so excited.

Tr in Conversation with Krystle:
Mimics the air horn!

Krystle:
(Chuckles) I’ll say I’ve had other wins in life, but I never won any competition outside of a spelling bee in third grade.

TR in Conversation with Krystle:
Especially for people adjusting to disability, whatever that is, I think winds are really important.

Tell me about some of the wins that you had throughout your life.

Krystle:
My dad was diagnosed with leukemia in February of 2021. And then my mom was diagnosed with breast cancer in March of 2021.

And by November 2021 , they both were declared a clean bill of health. That was a big win for me, because I still have them.

It has kind of transform me in a way where I’m trying to really appreciate life , for what it is.

I can wake up everyday and I get to talk to my parents, laugh with them, get annoyed with them, learn from them.

Getting to see my organization reach 10 years. I’m a woman of color with her own nonprofit for representing blindness.

I had people doubt my leadership, and people doubt my leadership to this day, which is fine. I’m glad that I don’t get easily discouraged.

it was a big support network that I have with volunteers, family, friends, friends of friends. People who are just getting to know me, they’re getting to know the organization and just having the chance to have someone believe in you.

TR:
Now, I can’t top that but I think there’s one more win.
Miss Newark, the original Miss Blind Diva, you, Miss Krystle Allen are an official member of the Reid My Mind Radio family!

— Air horn

Krystle:
Thank you. Thank you for inviting me and giving me the opportunity to share my message on your platform. I really appreciate you. it’s great to see blind black men doing their thing.

TR in Conversation with Krystle:
There it is! Yeh, and winning dance competitions too.

Krystle:
Ooh! You spoke it, you spoke

TR in Conversation with Krystle:
I gets busy.

TR:
For the record, I can do more than the Wop.
I can do the Smurf, the Baseball, the Running Man, the Caveman, The Pee Wee Herman, Electric boogie.
I’m not allowed to break dance any more though.

“Lawd if you’re listening. HELP!” Dave Chapelle “Half Baked”

Music begins: A chill, mid tempo groove.

TR:
Dancing is one thing, but Krystle, Eyes Like Mine are truly doing their thing for the community.

Krystle:
We are in partnership with the Source of Knowledge Bookstore, which is the oldest African American bookstore in New Jersey, Vistas Education and the United Way of greater Newark. And we have done about 80 installments of Braille overlaying African American children books, books like “Chocolate Me” by Taye Diggs, “If Kids Run the World”, “The 1619 Project” and a host of other books in our library to encourage access to grow literacy, and just overall literacy for children to build their vocabulary and gain knowledge.

TR:
recruitment for the 2024 Miss Blind Diva Empowerment Pageant begins on March 1.
The application is available now on their website.

Krystle:
EyesLikeMine.org

TR:
That’s where you can learn more about Dancing with the Blind and all of the activities and events from Eyes Like Mine.

Krystle:
The Peer Support Hub, a division of eyes like mine Inc, on Instagram, Facebook, Twitter or X, YouTube our handle is @EyesLikeMine and our general email address events at EyesLikeMine.org

TR:
Reid My Mind Radio Family, let’s send Krystle and the whole Eyes Like Mine crew some love.
Welcome her to the family, let her know you support what she’s doing and just send her some energy to continue to be determined and not get dissuaded by the taters.

Next up according to the plan for this season, I’m continuing my Self-Portrait.
In the next episode, we’ll hear more from Krystle but I’ll show you how it relates to my own experience.

For example

TR in Conversation with Krystle:
Is there anything that you would want to tell a young crystal now if you could go back when you first got diagnosed?

Krystle:
I would say to myself it’s okay, it’s gonna be okay.
It’s okay to feel what I’m feeling.

TR:
This struck me. It made me think of something specific from my early blindness days.
I’ll talk about it during the self portrait…

— phone ringing

along with a very special guest.

But until then, please, continue to help us get out the word about
all of the incredible people featured here on the podcast.
Tell someone you know who can benefit and enjoy what we’re serving up
that they can find it themselves wherever they get podcasts.
Explain that we have transcripts and more at ReidMyMind.com.
Go ahead and tell them that’s R to the E I D…

— Sample(“D! And that’s me in the place to be. Slick Rick)

Like my last name.

— Reid My Mind Radio Outro
Peace!

Sample: “Doctor said I need a backeotomy!” Dave Chapelle, “Half Baked”

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

TR:

Music begins, a pulsating ominous synth that opens up to a dramatic mid-tempo beat.

TR:

What’s up Reid My Mind Radio?

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

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

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

People cared!

I think.

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

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

— Reid My Mind Radio Intro Music

Sounds of a thunder and rain storm.

TR:

I don’t believe in conspiracy theories.

— Thunder clap

At least that’s how I felt before the phone call.

A day, I’ll never forget.
It was a Thursday.
Damn, it could’ve been Friday.
Either way… I don’t normally answer calls from unknown numbers.
Yet, this one evening, my cell phone rang and Voice Over told me to answer the phone.
Yo! That freaked me out.

Then, I realized after answering the phone that I heard it wrong.
The caller id really said Ann Sur Fonne. I think it’s French.

Wherever she’s from, she called to tell me a bit about the AD Illuminati.

— Thunder clap!

Well, sort of…

This mysterious phone call came on the same day my daughter Riana and I finally had the chance to sit together and watch Judas and the Black Messiah.

It’s a film that explores the FBI’s murder of Fred Hampton. The 21 year old Chairman of the Illinois Black Panther Party who was in the midst of uniting black and other organizations focusing on advancing rights and opportunities for Black, brown and other marginalized people.

The movie was first released in February 21 both in theaters and on HBOMax. I’m not certain about the theater release, but I do know that HBO Max did not yet provide audio description. My daughter refused to watch the film until it had AD and she could watch with her Dad. That’s me y’all!

It wasn’t until sometime during the summer of 2021 that the film received an audio description track on HBO.

Almost a year since its release, January 1, 2022, Riana and I sat down to watch the film.

As far as the movie goes, the two stars, Daniel Kaluuya and Lakeith Stanfield, playing Chairman Fred Hampton and the sell out under cover Bill O’Neil respectively, were both amazing.

It’s never easy to just watch a movie like this as if it were just a story. It’s not. It’s a reminder of a not so distant history a sobering acknowledgment that those in power won’t hesitate to kill when their way of life is threatened.

History shows, that’s often, when Black people are seeking their freedom, standing up for their rights and when there’s a hint of creating a unified front that challenges the establishment.

In 2018, I published an episode that focused on my response to the audio description in Marvel’s Black panther. If you never heard that, I’ll provide a link and hope you’ll take a listen. In summary, I discuss my reaction to the selected narrator. The episode actually goes into much more, but that’s often what’s recalled. I refer to the narrator as the voice of the colonizer – a British white man.

Unlike Marvel’s Black Panther, Judas and the Black Messiah doesn’t originate or belong to the MCU or the Marvel Comic Universe. This story is real. It belongs to us, this is the Black People’s Black Panthers.

I found it pretty ironic that , once again a film featuring a Black Panther is described by a British sounding white man.

— A mix of movie scenes with a dramatic “No” Including “Back to the Future” and “Independence Day”.

I always feel obligated to say, I have nothing against this person as an individual, he’s probably a nice guy.

Truth is, I really don’t have to. This isn’t about one person. It’s about an entire community of people being overlooked.

Anyone choosing to focus on individuals should really ask themselves if they’re really trying to deflect and avoid the real conversation.

— Cell Phone ringing

Not long after my daughter and I finished our post film review and conversation, my cell phone rang.

Yeah, that’s really the ring tone I use. I guess I’m nostalgic for telephones with actual bells on them.

Voice Over saying Ann Sur Fonne!

So I just had to pick it up.

TR in Conversation Flashback::
Hello? (Says hesitantly)

Ann:
What did you think of the AD?

TR in Conversation Flashback:
Excuse me?

Ann:
What did you think of the AD?

TR in Conversation Flashback:
Who’s this?

Ann:
I’m sorry Thomas, this is Ann Sur Fonne, you don’t know me… (Continues talking but fades down to an unintelligible murmur, with narration taking over)

TR:

She went on to explain she’s been listening, watching and reading the things that I and others have been talking about audio description and the need for more inclusion and proper representation of voices in all films especially those that are culturally specific.

She wouldn’t say exactly what power she had but she said she’s on the inside and wants to see change.

Ann:
Have you heard of the AD Illuminati?

TR in Conversation Flashback:
I have but always just thought that was a joke. I thought it referred to [beep]

Ann:
Thomas, whatever you do you can’t say those names out loud or use on your podcast. Your life is in danger if you do.

TR in Conversation Flashback:
What the heck! It’s audio description.

Ann:
Thomas, you said it before and made a damn t-shirt, it’s about more than entertainment.

TR:
Ann talked a bit more. Each time I tried to get more information or even some hint of why using Black voices in films about Black people is an issue, she’d just talk about how much she likes the podcast.

Ann:
I really like your podcast.

TR in Conversation Flashback:
Oh, thank you! Continues talking but fades out and narration over takes it.

TR:

I really need to work on not being easily distracted.

I did get to ask her if there’s any specific connection to Black Panther? I mean

I can’t tell you is all she’d say. Continue to be aware, pay attention and look beyond what you see. I reminded her I’m Blind. We laughed.

Ann:
But seriously, continue to be observant. There are things happening and people claiming they care and want to see change. But as you know now, the AD Illuminati is real and right now, their goals don’t align with yours.

TR in Conversation Flashback:
What exactly are their goals?

Ann:
Nice try Tomas, but I’m already risking my life calling you. I’ll be in touch when I can. Whenever you hear your phone say Ann Sur Fonne make sure you answer. No matter the time of day or night.
Goodbye.

TR:

And that was it, she was gone.

I didn’t mention this to anyone for a day or so because I was just shook.
I finally decided to tell my wife. She just stared at me. I took my phone out to show her my call history.

There was no record of the call.

“I didn’t dream it! I didn’t dream it!” I muttered to myself as I walked off to be alone.

Classic Radio Announcer:
“We interrupt this program for a special news announcement”

Hi, I’m Cheryl Green
And I’m Thomas Reid

Cheryl: That… wait, you don’t look like Cheryl Green.

Thomas: What do you mean?

Cheryl: Well, I mean Cheryl she’s got hair on her head, kinda curly medium length brown hair and she’s got black framed glasses and olive skin.

Thomas: Ok, now that you say that, you don’t sound like Thomas Reid. I think he’s a brown skin Black man with a shaven head and where’s shades and has a full beard and might be wearing like a Wu Tang Clan t-shirt or something like that.

Cheryl: But, we’re both disabled podcasters.

Thomas: Do you think we should say podcasters with disabilities?
Cheryl: – Oh oh, you know, let’s do a podcast about that.
Thomas: Mm! Good idea!

Cheryl: Actually, Thomas and I are working on a project that’s all about disabled podcasts…
It’s called… Oh wait, well, we don’t actually have a name just yet so we’re calling it… oh wait, we don’t actually have the name yet. What should we call it?

Thomas: We should call it, project, project!

Cheryl: Yeh, I love it! Project, Project or like I don’t know, PODAccess.

Thomas: Ok, we’ll go with PodAccess, for now.
With funding from the Disability Visibility Project we’re creating a space for disabled podcasters or
content creators to
Connect with each other, maybe be discovered by audiences interested in your content or share skills and resources

Cheryl: So we want to hear from you…
Current or former Deaf or Disabled podcasters, Deaf or Disabled people interested in starting a podcast or consumers of content about disability or Deafness.

Thomas: We’ve created a survey, that should only take about 20 minutes to complete and we’d really love your feedback.

Cheryl: You can find the survey at https://bit.ly/PODAccess
On that survey you can sign up to receive more information about
Project Project as it develops.

Thomas: Again, fill out the survey at http://bit.ly/PODAccess

Cheryl: Ah, nice job Cheryl!
Thomas: Ah, , you too Thomas! (Laughs)

Classic Radio Announcer: Now back to our show.

TR:
I needed something light to take my mind off this for a while.

I decided to watch the final season of Insecure also on HBO Max.

— Music begins, an anxious melody that continues of a mid-tempo Hip Hop beat. Hip hop

HBO did not provide description for their shows until 2021.

prior to this final season, Blind folks interested in watching Insecure with audio description would need to find an alternative way of accessing the series. Allegedly available somewhere.

If you’re not familiar with issa rae’s Insecure, according to her the show “examines “the complexities of ‘Blackness’ and the reality that you can’t escape being Black.”

While the show is a “black show” it’s characters and subject is universal and relatable.

Sort of like what people with disabilities like to think about disabled content. But you know many non-disabled hear that word and are like oh, that’s not for me!

Similarly, white disabled can hear black and disabled and say, oh boy that’s not for me.

Anyway! Humanity, right?

Insecure is a well done series. Young black people just living their lives searching and figuring out who they are and where they want to go. From Black law firms to the streets , all sorts of Black.

Well, guess what wasn’t Black?
That’s right! The audio description narrator.

And here’s where it gets tricky for me personally. I like and know the narrator. She’s been on the podcast y’all. That makes her Reid My Mind Radio Family!

Let’s be clear, I’m not trying to put people on blast or shame someone for their decisions. To return to the Godfather for a second…
“It’s not personal Sonny, It’s strictly business.”

That being the case, I won’t drop manes, but feel free to look it up. In fact, go ahead and watch the show, it’s entertaining and I support Black content creators.

I really wanted to call Ann Sur Fonne. I wanted to ask her what could be done about this. Does this at all relate to the AD Illuminati?

No need. I’m sure she’d be vague or even worse tell me how much she likes the podcast to distract me.

I really do need to stop falling for that one.

She did encourage me to continue to speak on it and suggested I do the same for others.

So that’s what I’m doing.

Is there really an AD Illuminati?

Is all of this part of some conspiracy?

I believe that those in charge are doing what they know. I recognize that it’s not malicious or done with bad intentions. Folks have jobs to do and deadlines to meet and all sorts of limited resources.

This has been the way it’s been done for years. It goes back to the early decision makers in audio description. They did great things, but they also bear responsibility for where we are today. They chose to not see color. They chose not to seek out culturally appropriate voices. They taught and some still teach the newbies. Has the curriculum been updated or is it the same ol’ thing. You know, that good Ol’ AD!?

I know for many, this isn’t a big deal, in comparison to other issues of injustice or representation. But I disagree! I think it’s just another one. One that will never grab the attention of the mainstream.
It’s black and disabled.

What they don’t see are the core elements that make up the other injustices;
White supremacy
Systemic racism
Ableism, It’s for the Blind so they’ll be happy with whatever we give them.

Ouch!

Yes, hard to hear? Well, it’s not easy to say.

Music begins, an optimistic, bouncy Hip Hop groove.

I offered some possible solutions in the Black Panther episode from 2018.

One worth repeating is seeing the selection of narrator as a casting choice and therefore a responsibility of the director and production team.

If content creators were more aware and involved in the audio description process, I don’t believe we’d have as many of these issues.

I don’t think Issa Rae is aware of the voice providing audio description narration for her show.

, when asked on the red carpet of an award show who she was rooting for, famously and unapologetically proclaimed;

Issa Rae: “Everybody Black. I am. Betting on Black tonight!”

Here’s another consideration for addressing this issue. Individual responsibility.

It’s not just the narrator, audio description is a team sport. No matter where you fall within the audio description life cycle, you play a role.

As I am aware of the process today, broadcasters who commission the AD track have the majority of the power. They are the true shot callers. They dictate what they want the script to look like and the type of voice they want to hear.

AD Directors, Managers, decision makers in general, it’s time to retire the excuses;
“we don’t have anyone on our team.”
“We had such a tight deadline to produce this track”
“We don’t know where to find qualified talent”
All of these excuses just represent the problem. It’s time for you to expand your network, recruit talent and be aware and prepared.

I’ve seen people find qualified voice talent … open your networks, they’re out here.

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

Narrators!

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

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

Is this call for equitable representation threatening?

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

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

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

That’s seeing and acknowledging color on screen and stage. It’s recognizing that Blind and Low Vision includes people of color.

Writers!

If you’re assigned to a project, recognize your limitations and ask for help, seek the proper input or suggest that you’re not right for the job.

We don’t need color blind writers.

No silly, I’m not talking about those who can’t see red green or blue, but rather black and brown.

It’s one thing to see Black and brown people when we’re in the majority. At that point, I guess you can’t help it, right?

What about the other films that have a so called diverse cast and include BIPOC characters. The lack of audio description erases them from the Blind consumers screen; rendering people of color invisible.

For Black people and others of color, striving to be seen, heard and in general represented takes place in all aspects of life. What we experience in audio description isn’t unique, it’s a part of that systemic problem that persists throughout society. We can’t wait for it to be resolved outside of audio description and then trickle down. Why not do what we can to address these underlying issues that we’ve all inherited. At the very least acknowledge their existence and commit to doing better.

That’s what this episode is all about today. Doing better…

Music begins, a dramatic piano riff leads into a strong steady beat.

I reached out to some people who I know feel strongly about this issue. Audio description providers who already commit to this idea fully. The Social Audio Description Team who I featured here on the podcast last year.

Together, we’re drafting a pledge that we will invite everyone to sign. That is, everyone who believes in making audio description a representative, equitable and fair space. Those who want to truly see the world in all of its beautiful identities, shapes, sizes, abilities, ….

Do I think a pledge will resolve this? Not necessarily. Right now, I’m interested in eliminating the excuses. We’re in 2022, if you’re not interested in the proper representation of people of color then be firm in your stance and say that.

Don’t tell the community you’re for something while your actions say otherwise.

If you’re in support, raise your volume. I’m talking to consumers as well as AD professionals.

— From Judas and the Black Messiah:
“The whole neighborhood came out. Pushers, grannies, Crowns”
Fred Hampton:
Anywhere there’s people, there’s power”

TR:

I’m hoping to have this pledge published shortly and plan to report back to you. I’ll definitely link to the pledge from ReidMyMind .com and share on my social media pages; Facebook and Instagram @ReidMyMindRadio and
Twitter that’s @tsreid.

Join me in pledging to make audio description or our little microcosm of the world into an example of what we want this place to be. We can’t wait for the rest of them.

In the meantime, according to Ann Sur Fonne, she’s been putting me in position to meet people who want to see audio description recognized for the art it is. People ready and willing to help make AD better for all. People you’re going to meet in this upcoming season of Flipping the Script on Audio Description.
We’re talking:
AD in the lab; Creative approach or Compliance – do we have to choose?
Blind AD professionals, stand up, ya better recognize!
Get some AD to describe this outfit… Blind people are fly too!
And get ready, I’m bringing you La Professora…

The Flipping the Script on Audio Description season kicks-off Tuesday, June 14, 2022.

Come rock with Reid My Mind Radio wherever you get podcasts.
We have transcripts and more at ReidMyMind.com
Just remember, that’s R to the E I D!
(“D! And that’s me in the place to be.” Slick Rick)
Ann Sur Fonne:
“Oh, like your last name Thomas!”

— Reid My Mind Radio outro
Peace!

Hide the transcript

TR:

Reid My Mind Radio Family!

Before we get into this latest episode, I need your help.
I want to take Reid My Mind Radio to the next level,
that’s making it a sustainable venture.
But I need to know more about you, the listener.
I’d really appreciate if you could take a few moments to fill out
a quick survey. Just go to ReidMyMind.com and hit the link that says , hmm, what should I call it?… Survey!

— Pulsating Swoosh Transition sound

Welcome, to another installment of Reid My Mind Radio. i’m your host Thomas Reid and thank you for joining me.

In this second to last installment of the Flipping the Script on Audio Description series, we’re discussing topics related to sex.
— Music begins, a slow, sentuous R&B track…

I’m not saying it’s X rated, but I am saying its for the Blind, the grown and yes, (– An orgasmic “Yes” from “When Harry Met Sally”) the sexy!

You don’t actually have to be Blind or even consider yourself sexy, but I do want you to know that in this episode, we say some words, discuss and suggest some things.

— A woman’s orgasmic moan. From “When Harry Met Sally”

Let’s get it on!
— Reid My Mind Theme Music

— A scene from Fifty Shades of Gray where a man is undressing a woman… being described

TR in Conversation with Pratik:
I think it was December of 2020. Do you remember?

Pratik:

I kind of generally remember the, the gist of what I was tweeting out. I remember watching a Netflix show. And there were a couple of sex scenes in it. And the narrator of the audio described content, basically used the same phrase again and again. They kiss passionately, they kiss passionately, they kiss passionately

Even though from the context you can tell that there was some other things going on. And I found that to be a bit stale.

TR:

This is Pratik Patel.

Pratik:

I am a 43 year old Asian cisgender Male. I have someone medium length, dark hair, brown skin. I’m five, eight. And on the thin side these days.

I own a small business that deals with digital accessibility in different products, websites, applications, as well as working with companies and in different organizations on integrating people with disabilities in their employment contexts.

TR:

Access, employment, hell yes, that’s grown and sexy!

Sex scenes in film and television have become way more prevalent especially with providers like HBO, Netflix and others who
are pushing the boundaries of what is acceptable on screen.
So what does that mean for Audio Description consumers?

Pratik:
I found a significant gap in what should be conveyed while describing a sex scene, and what was conveyed while describing a sex scene perhaps because it was the narrator not being comfortable. Or rather, the idea that disabled people or Blind people don’t really need description, even though, that may not be stated outright, it’s an idea that can still persist in people’s minds.

TR:

Hey, come in close, I have a secret to share with you. Blind people, Disabled people are sexual.
But, let’s take our time here and explore that gap.

Pratik:

I was looking at a review of a movie that I had just watched basic instinct 2, it had come out in 2005 2006. It had descriptions in the UK, and that was how I first encountered it.

It has quite a bit of sexual content in it.

There’s this scene between the main female character Catherine, played by Sharon Stone. And the main male character was a psychiatrist providing her therapy.

In one of the scenes, she is speaking to her therapist, and she knows that the therapist is attracted to her.

TR:

A highly sexual being, Stone’s character that is, is dressed in a short skirt.

— Audio from scene in Basic Instinct 2:
AD Narrator:
“She glances over her shoulder with a smoldering predatory expression, then drags the chair into the middle of the room. She straddles the chair with the with the back in front of her and hoists her dress up revealing her thighs.”

Sharon Stone Character:

“When you think about fucking me and I know you do…”

TR in Conversation with Pratik: 10:12
So she’s sitting with her legs open.

Pratik:10:16
Yes.

She has this entire monologue with a therapist. And in the background, you hear a sound, a rhythmic sound.

— Sample from the scene plays in the background.

And at the end of the scene, the narrator says…

— From Basic Instinct 2 AD Narrator:
“Suddenly, she stops touching herself.”

Pratik:

In some ways, the US version is even worse, because it doesn’t even tell you that she was touching herself.

In some cases, when the scene is moving really fast, and there isn’t enough time between dialog, I can understand that you leave out some information.
But it’s not the case in this and other shows or movies that I’ve seen. There’s plenty of gap.

TR in Conversation with Pratik:
no pun intended with the gap. Sorry.

(TR & Pratik share a silly laugh)

TR:

Ok, I never said I was grown!

Maybe you have experienced watching a film with a sighted person who can easily point out these gaps.
That’s the difference between what’s taking place on screen and what’s being described.

Pratik:

It brings up multiple points not only not having that information, but the context the artistic expression of that scene, you know, sometimes sex is sex is sex, but other times especially in movies like that sex is used for effect right? And not describing that is a bit of a travesty. I think.

— Music begins, a slow, sentuous Hip Hop groove

TR:

Let’s flip this, and explore from another angle.

Bojana:

I feel so often, when I’m reading alt text there isn’t much joy or delight. When there could be.

I have started to use Alt Text as Poetry as a lens to look at everything else that I’m engaging in.

TR:

That’s artis , Bojana Coklyat.
One half of Alt Text as Poetry,
who focus on getting people to think creatively when it comes to descriptions and access in general.

Fellow artist Shannon Finnegan makes up the other half of this dynamic duo.

Shannon:

We talk a lot about this idea of attention to language and just being aware and intentional about what the tone of the writing is, or what words are you using, jargon or slang.
Thinking about how that tone relates to the tone of the material or the image?
Trying out different things and learning from each other and not defaulting to one way of writing.

Some people have an association with poetry as super flowery language or kind of inaccessible. We don’t mean poetry in that sense. Access is at the core.
It’s more about bringing an intentional and creative mindset to it rather than writing a sonnet.

TR:

Shout out to Reid My Mind Radio alumni and family member, Cathy Kudlick who pointed me to Alt Text as Poetry.

The two each bring valuable perspective to this subject.
Bojana herself is a person living with low vision.

Bojana:

I am also a project manager at the museum of Art and Culture Access Consortium.
I am a white woman with short brown hair cut into a bob. I’m wearing a black cardigan. A red shirt with white polka dots behind me is a boring tan wall.
I use she her pronouns.

TR in Conversation with Bojana/Shannon: 01:17
Shannon?

Shannon:

I am disabled, but my disability is physical. So it mostly affects my kind of walking and movement. I’m sighted which I think is important to clarify in the context of Alt Text as Poetry that I approach this material in terms of cross disability solidarity.
I am a white person with short hair. I’m in my studio. So I’m in the middle of a big art project. So I’m dressed for comfort.
I use they them pronouns.

TR in Conversation with Bojana/Shannon:
You two superheroes, Tell me about the origin story of Alt Text as Poetry?

Bojana:

I love it. So can we make some outfits? I want some outfits.

TR in Conversation with Bojana/Shannon:

Yeh, you should. And you have to describe them! (laughs)
Bojana:

Oh, yes, exactly. And they have to be tactile…

I was working on my master’s focusing on disability studies and art administration. Kevin Gotkin was trying to organize something around disability nightlife. So I went to that event. Me and Shannon, chit chatted a little bit. And we connected from there.

Shannon:

I was a resident at a place called IBEAM, that focuses on like, artists thinking about technology, and had just started formulating this idea of Alt Text as Poetry and felt like Bojana had a lot to add to the project.

We kind of came to this idea of Alt Text as Poetry, in contrast to the compliance oriented way of thinking about access generally, and certainly alt text that feels very dry and perfunctory and kind of like minimum effort and really doesn’t feel engaging or truly welcoming.
— Music ends

We started talking about this project as a way of creating time and space for conversation about text and image description. Not coming to it with like, Oh, we know all the answers about how to write the best image description, but much more like, wow, there’s a lot of questions and a lot of interesting things that come up in this process. And it would really be great to hear from other people.

Bojana:
I don’t have anything as exciting as like, you know, being exposed to gamma radiation and giving us Alt Text powers.

TR:

Well, we’ll see some of that power in description. Whether alt text or AD.

For now, Bojana shares some of her experience with what she describes as a sexy , romantic period drama, Bridgerton.

Bojana:

They never mentioned nudity. The love scenes they never really described very sexily.

I think it was like the final movie moment where the Duke and I can’t remember his love interest name, but they’re finally together in bed. And like, we’ve been waiting for this for how many episodes …
The audio describer is like , and the Duke is thrusting, repeatedly. Staying thrusting. And it was like the most detached, non sexy description of two people who have been so intensely attracted to each other. And I will never forget it.

Pratik:
I find that describers aren’t always conveying the context when it comes to describing sex scenes.

I’m sure you’ve heard of the 50 Shades of Grey trilogy. Terrible movie by the way, and terrible set of books. The only one I saw was the first one. I saw the UK version, I didn’t compare it to the US. But mostly the describer does a fantastic job of conveying the information of the movie, the context, and the sex scenes. But I found that the narrator was a bit shy. It felt like she was cringing when describing the scenes.

TR:

I could imagine the narrators comfort level could affect some Blind consumers.

Pratik, who was involved with early advocacy for the CVAA,
recognizes the difference between the quality of the movie and that of the audio description.

But what other aspects impact a viewer?

TR in Conversation with Pratik:

Let’s say it was really good description, would it make a difference for you to get that description from a man or a woman?
Pratik:

That’s a good question. I don’t think so. The accent does make a difference though.

For me, I find the UK accent to be highly sexy, especially female UK accents.

TR in Conversation with Pratik:

What about the texture of the voice? You know, tone?

Pratik:

The tone, ? Yeah.
TR in Conversation with Pratik:

So it does make a difference. So you wouldn’t want Roseanne Barr? (Laughs…)

Pratik:

No. Okay. Some people might find that sexy.
TR in Conversation with Pratik:

Woooo!!
Okay, no judgment!
Pratik:

When we talk about quality, I’m talking more about the content itself. Not the person delivering it. That’s highly subjective.

TR:

This is consistent with what we say, the most important piece of audio description is the writing.

Pratik:

What do you include in the kind of detail of two naked people that could get you the same context, that can give you the same information that’s being conveyed to the sighted people.

TR:
Shannon has some thoughts on this.

Shannon:

What’s wild to me is I have experienced very sexy descriptions in books. Right now I’ve been listening to the audio book, Red, White and Royal Blue, which is like a romance novel. And it’s extremely sexy.

Going back to the bridgerton example. It was a book that was adapted into a TV show and I haven’t read the books, but I was actually thinking recently it would be interesting to do that.

I’m sure there’s licensing and copyright issues around why maybe some of that language couldn’t be brought into the audio description, but how cool if that could be mixed in?

TR:

So we do have examples of language to fill the gap!

Shannon:

It’s just somehow that’s not when it comes to it as an access practice. There’s a different frame or something. I think for me, it also pushes up against this thing of like, a kind of infantilization of disabled people that always feels very dehumanizing to me.
Bojana:

Just remembering something in a book by Georgina Klieg, in “More Than Meets the Eye: What Blindness Brings to Art.” She was talking about a movie, I can’t remember what it was called.

TR:

The book is available on BARD and I’ll link to it on Bookshare on this episode’s blog post.
The movie is “The Sessions” and during a love scene, Helen Hunt’s character takes off her clothes.

Bojana:
I think it says she takes off her clothes, but does not describe her naked body at all, when other things have been described.

I think it’s the infantilization. And also the stigma attached that, oh, why would Blind people be interested in that. They’re not thinking about sex. That’s not something we should be talking about, maybe it could be offensive.

I think sighted people assume that human beings can only take in information through their eyes, and ears, and they forget about the other senses, and how important those are.

There’s real value in not only recognizing the ways we take in information but also all the ways we communicate.

Shannon:

Podcasts or books or literature or hearing from a friend about something they saw on vacation or things like that, like description is really all around us. And somehow all of that creative energy isn’t always getting there when it’s specifically around access.

— Music begins, a bass heavy, pulsating groove

Pratik:

When we talk about sexuality, there’s such variation in people’s preferences in terms of what they practice and in terms of what they’re attracted to, that it’s hard for us to say, this is what we should describe first. But I think the best way for us to look at and the best way for us to think about it is to look at different communities, sex positive communities, and to advocate for getting more description from individuals who posted and just different groups. For example, I know that a lot of kink communities tend to be pretty aware of disability issues. And when you point it out, they’ll start to think about how to make those spaces accessible.

Danielle:

Hi. I’m Danielle Montour. I am 24. I work primarily in accessibility and sex education. I’m getting into the kink education space as well.

TR:

Danielle and I share something in common.

Danielle:

I was born with bilateral retinoblastoma. I do not have any eyes anymore.

Let’s see, image description.

So right now I’m probably a little bit lighter than olive. So I have a warmer undertone type of skin. I am relatively petite. But I have a curvy build. I have hazel eyes, I have hair that goes almost to my waist, but it’s about to be cut by the end of the week. So it’s only going to be a little bit above my shoulders.

I am wearing a very, very bright smile. And my hazel eyes are kind of crinkled up the corners because my smiles are often big enough that my eyes do that.

TR:

Warm undertones, eyes that crinkle up on the sides,
she began exploring visual concepts through conversations with sighted friends who happened to be artist.
Learning the importance of detail.

Danielle:

What does my hair look like? What facial features are most noticeable? What do you see when you look at me first?

Does something I’m wearing bring out particular features.

I’ve tried to think of all the different pieces of information that sighted folks would get. And honestly, my image descriptions can be a paragraph long sometimes because I’m just trying to put all of the information that I would have possibly wanted to know about the picture. And if I want to know I’m sure somebody else might want to know, and if they don’t, they can just keep going.

TR:
Sharing these descriptions can be infectious.

Bojana:
So I make sure I have it in alt text and in the caption, so everybody can see the image description.

Sometimes I’ll see my friends start to right image descriptions.

Whoa, where’d you learn that?
I learned that from you.

At least people on my Instagram or my Facebook feed start to see examples of it and kind of reflect it back.

Shannon:

Some friends and colleagues, john Harmon and Molly Joyce did a dance and music performance and they had a director of audio description. It was Andy Slater, who’s a Blind artist and writer.

Putting someone who’s blind or low vision, in charge of that creative process makes a lot of sense in terms of setting the tone, and kind of making the plan and thinking about what the approach to it is going to be.

— Music ends – smakcs into…
— Audio from Radical Visibility Collective

TR:
Marginalized communities are producing progressive examples of audio description
weaved into performances. And even keeping it grown and sexy.

Shannon:
actually, I thought of a really good example. The performance by radical visibility collective. It’s put on by three people, it’s also related to queer and crip nightlife and, and the audio description is in music, and it is so fun. It really has that feeling of a dance party of the kind of ways that people are showing off on the dance floor. For me that was a kind of experience where I was like, Oh, right, okay, like this can be really fun, really sexy, very much in the same feeling of the performance in general.

TR:
Earlier in our conversation, Bojana mentioned an accessible Cabaret on a barge in Brooklyn.
I was intrigued and had to ask for more because parties and night life, that can be sexy!

— Audio from Radical Visibility Collective ends and smacks into…
— Music begins, a thumping club dance track…

Bojana:

I’m really glad you asked.

There was music, poetry being read, everything there was done with access. So everybody was wearing a mask.
There were non alcoholic beverages available. It was a very like relaxed environment.

It was just a way of being together in a space that would not just like, oh, it had a ramp or like a no barrier to entry. But there’s also the attitudes. So often you can go into a place that might be, quote unquote accessible as far as like the built environment, but you get there and you feel like, Oh, this person is acting a certain kind of way, because I’m disabled, and they’re not.

Shannon:

Our friend and colleague Kevin Gotkin has been doing a lot of research and planning around disability nightlife and also planning remote parties that happened over zoom, where there’s a DJ set, and there’s audio description available.

There’s sound description, so thinking about captioning, but also thinking about someone who’s describing the feel of the song that’s on.

TR:

So what are the implications of all this sexy access?

Danielle:

It kind of puts out a statement that our access matters. And it really kind of changed my perspective and thinking.

Now I’m kind of someone who is always going on and on about image descriptions and the art that can be involved in image descriptions.

I’m always asking blind people, why are you not describing your images at all, they will post images with no description.

It’s just a conversation that we have to continue having. And just recognizing that a lot of folks are where I was several years ago, in terms of audio description.

TR:

Danielle learned how she could benefit from accessing this visual information.

Danielle:

I started being able to kind of understand, like the facial expressions and kind of the silent things that were happening with the mood of the room

I just ended up finding that I had so much access to things. I didn’t realize that I could ask people about the colors of the decorations in the room, or how exactly somebody space looked, or how their face would pinch before they felt really ill. I didn’t know.

It kind of started setting me on equal footing with my sighted peers who had access to all these things for so long

TR:

Access to things like sexy advertisements that can let’s say arouse one’s interest.

Bojana:

As a person with low vision, who never has driven and never will,, I don’t think about how cars look, I don’t think about the design of cars.

I read this description of this one car, feline, like a panther about to strike. I was fascinated because the picture was right there. And they weren’t writing this description for access, they were writing this description to enhance the image or in order to draw people in.

— Sound of a Bugatti engine roaring like a feline…

I looked at the other descriptions of cars, and it wasn’t anywhere near as delicious.

I want to go to a car museum now. Like, let me touch your cars.

TR:

Imagine if online descriptions of clothes, shoes and other products were as sexy or captivating. Cha ching!

The need for access to sexual related content actually has implications that begin earlier in life.

TR in Conversation with Pratik:
What was your experience? If you care to talk about with sex education growing up? Was that something that you felt was accessible to you?

Pratik:
No. It wasn’t accessible.

I had a couple of good teachers in high school who were good enough to describe the content, but it still wasn’t enough.

And the book we were using for sex ed wasn’t brailled In fact, I think there are a bunch of copy pages. They played a couple of videos not accessible. You know, the typical banana video but I think the most difficult thing about that course was Male and female anatomy and what discussions that were around different anatomical parts.

I found that part to be missing in my education. It wasn’t until later in life when I started exploring that I figured things out. That’s a major problem in our current education system. blind students don’t have enough information.

Danielle:

I did not learn a lot in my sex education in school, I learned a lot from books. I got one when I was eight, and one when I was 10.
I was the one telling people what pelvic exams were when I was eight, because they were in a book that I read. It’s called, it’s perfectly normal and it was in Braille. I think the NBP,national Braille press, Brailed it.
Pratik:35:58
The male teacher was not comfortable having that conversation. I had a female teacher who did a health and wellness course, that was somewhat different than your normal health course with sex ed attached to it. She was a student teacher, young hip teacher, she was far more comfortable talking about sex. Not only generally to students, but she actually spent some time with me. Outside the course, with the itinerant teacher, working with me to talk about some sex ed issues.

And it only happened because I was persistent enough to ask questions. Not all students are comfortable enough to do that.

Danielle:

I didn’t get to learn a lot about 3d example of anatomy until I was out of my own house, even then, I only knew mine, until I started my phase of getting around and experiencing other bodies. And that’s when I learned a lot about what penises and vaginas look like.

I think it’s really healthy for people to have an idea of what different vaginas and penises look like, even as children because sighted kids get to see it.

I don’t think that we have to single out blind kids by giving them really super extended image descriptions or models that the sighted kids don’t get, I think we can actually give everybody access to those models and let everybody experience them.

And that sets the stage for really important access expectations for everything else later on, too, because kids are really good at learning that stuff. It’s the adults who are shitty at it.

Pratik:38:25

I don’t think we should be shy as a community using sex toys to demonstrate different things to blind students. There are some realistic models available.

TR in Conversation with Pratik: 38:57
Wow. If the male teacher was just nervous about having a conversation with you? (Laughing….)

Pratik:
(…Laughing) I can just imagine,.

Communities and parents have a role to play in this as well. And oftentimes, I think that’s where a lot of suppression comes in. Parents don’t see their children as having desires. Wanting sex. But I think the more we accept that disabled people are sexual beings, the better it is.

Danielle:
It’s called blind positive sex ed, the community group that I work in. They talk a lot about making realistic models.

Right now it’s more about genitalia. So different states of vaginas and penises, a flaccid penis, circumcised uncircumcised . Vaginally, we have some where it has been subjected to genital mutilation. All of these different things that we really have to think about.

That’s the beauty of models, just like the audio and image descriptions they can convey so many different points.

TR:

Points that go beyond the individual.

Danielle:
I work a lot in talking about consent, and consent in terms of sexuality and kink. All of these things I learned because I’ve had so many descriptions being thrown at me that I get to enjoy the art, but the person who described it does not belong to me and I have no ownership of them or their time.

I think conversations around sexuality and just sex and just all the raunchy things like everything, literally everything, talk about what a money shot is talk about what it looks like when somebody squirts talk about all these things because sighted people have access to that stuff, if they want it, blind folks don’t.

TR:

Of course, it’s more than access.
Danielle:

I think particularly in blind communities, access to this information is so new that there’s not a lot of examples of us conducting ourselves with respect in these ways. I might be the first rather sensual image description that a blind person has ever seen. Meanwhile, most sighted people I know, have seen 10s, hundreds 1000s of sensual pictures. And they’ve had a lot more practice having to try or not try to conduct themselves with some decorum whenever they see those pictures. So I think that’s all part of consent education, and what we talk about when we start opening up equal access to a lot of this information.

My intention is not to lambaste the blind community and be like, they’re all terrible for this and nobody else because like, we all know, sighted folks are just as bad with consent.

boundaries, boundaries, boundaries.

Bojana:
People don’t understand boundaries, they think it’s out there and it’s there, right? Or their privilege to just comment on whatever they want to comment on.
People feel more anonymous online and they can do these things.

It’s hard to say where the boundary should be for people who are commenting.

If somebody wants to write a sexy and grown description, they should have that. Absolutely.
I think like anything with the internet you kind of curate it.

Try something out you see if that works and maybe you get a response you don’t want you kind of try to peel it back and edit yourself.

I’m thinking about how I describe myself
if there’s a picture of me and maybe it has some cleavage I’m probably won’t for that very reason. I don’t want to signal something.
I don’t know

TR in Conversation with Bojana/Shannon: 54:39
So you would leave it out of the description? You’re censoring blind people. (Laughing…)

Bojana:
Oh, no. Strike that Thomas!

I feel like I’m reinforcing the sexiness of it. Just by writing it by noting it by marking it.
Shannon:
This gets to such an important topic in image description, there is always this prioritization and filtering, that happens, because you’re never gonna describe every single thing.
So you’re choosing certain things. There can be a mismatch, where it’s the thing that’s most important to me about sharing the photo, there may be something that really stands out to someone else about it, but I might gloss over that.

This also comes up against some issues around consent and description.

You’re describing an image of yourself, you get to make a choice about what parts of your body and how you want to name them and what you feel comfortable doing and what you feel you don’t. Certainly if you’re describing someone else, thinking about consent and that situation. If you know them, checking in with them about how they want to be described, or researching online about language they used to describe themselves.

I think especially for marginalized people, there is a potential for harm there.
Going back to boundaries or crossing a boundary and that of course, is this like Delicate Balance with like, not withholding information or like hiding something or not naming it because of a describers discomfort or unease. But also, being aware that there can be like power imbalances like talking about someone’s cleavage may make them feel vulnerable in a way that they shouldn’t have to be. Right.

TR in Conversation with Bojana/Shannon: 1:00:27
Bojana when you said strike that Thomas we use, were you serious?

Bojana:
No. I’m just joking, joking around.

TR in Conversation with Bojana/Shannon:

I thought so. But I just want to make sure.

Bojana:
thanks for checking.
TR in Conversation with Bojana/Shannon:
Yeah, absolutely. Get your consent. Cool.
(“consent” echoes for emphasis and transition)

TR:
sex education, understanding how to fit in society,
I’m telling you, Alt text, , Audio Description is more than entertainment. That access goes deep.

Danielle:
I never , in my image descriptions describe myself as an indigenous white woman. I don’t know what that means.
Often my skin tone is not the same shade year round. At its widest point, it is an olive tone. At its darkest. It’s many, many, many shades darker.

Sometimes I’ll notice when my skin gets darker, how I’m treated. Sometimes it’s just like, who talks to me when I’m in public. White women in general really will approach me a lot. I noticed that they start avoiding me the darker my skin gets. When I’ve gone to other places like Florida I will have folks start speaking Spanish to me thinking I am Latina.

TR:

Body and facial features are tied to identity. The implications aren’t just how we’re viewed in society.

Danielle:
As a disabled person, my body was always public property for people to make remarks on. In the summer, it got so much worse, and people would make so many jokes about my skin, and what I looked like, and my body shape and everything. And I thought, for the longest time I thought it was because I was showing more skin, and that I was just genuinely ugly. I did not realize that my skin was getting darker and darker and darker, the longer I spent outside.

Because I was on my mom’s side, primarily white, my father’s side wasn’t really in the picture all that much. I am by far the darkest in my family. There were just a lot of jokes made about that, even in passing, whether it was by my family members, or just by people around me. They would always make remarks about how dark I was.

It’s a whole big thing that I’m still working through, honestly, in terms of my racial identity.

Shannon:
I went to this audio description workshop that was put on by a UK organization called Whiplash. And they were talking a little bit about how self description can fall a little bit heavier on marginalized people, marginalized in various ways.

I felt that a little bit around gender identity, I’ve had like a shifting understanding of my gender and it’s hard to put that into words or to kind of like process that or update that in real time. It also has been really helpful to think about what my gender presentation is versus how my gender feels.

— Music Begins, A sexy , smooth melodic Hip Hop track
TR:

Alt Text as poetry offers some great resources for those interested in stepping up their description game, including workshops.
Shannon:

We basically get together with small groups of people, talk to them about what alt text is and talk about this idea of Alt Text as Poetry and then practice together.

And then we’ve also created a workbook, a self guided version of the workshop. And we also now have a blog as part of the project called alt text study club, where we gather interesting examples of alt text, again, in that spirit of learning from other people and thinking about different approaches or ways of writing.

Bojana:

One of the things in the workshops that I love, is just when people have the chance to share.
Maybe we’re talking all about the same image. And people have so many different perspectives.
Just giving people a chance to share and learn from each other, I think is just one of the more beneficial parts of the workshop.

People sometimes get so caught up in writing text correctly and perfectly, instead of just doing the best they can and having some fun with it and adding a creative flair. I think that’s something that we also talk about and encourage.

TR:

So whether we’re talking about describing love scenes in film, subjective images that we deem sexy like
those featuring the curves of a woman’s body to those of a stylish sports car, having fun and being creative is a great place to start. Who knows where it will take you.

Bojana:
Thomas, if all of a sudden, all my decisions get a lot sexier. She’s talking about cleavage and… (Laughing)

TR in Conversation with Bojana/Shannon: 57:00
Just point them to this episode. (Laughing…)

Bojana:

That’s the Grown & Sexy episode.

TR:

Big shout out to my grown and sexy guests;
Alt Text as Poetry, that’s the dynamic duo of :
Bojana, who you can find on Twitter, Facebook and Instagram

Bojana:
at bojana Coklyat. That’s B as in boy, O J A N AC O K L Y A T as in Tom.

TR:
Shannon!
Shannon:
at Shan S H A N and then my last name, Finnegan F I N E G A N. So that’s for both Instagram and Twitter.

TR:

Danielle

Danielle:
I’m Danielle Montour on Facebook. I think i’s still Can’tC4Shit on Instagram
Can’t, letter C, number 4, shit…

TR:
You’re funny for that one Danielle!

And Pratik Patel is on Twitter @PPatel

Pratik:
Spelling it out… PPatel

TR:
I need you all to understand, you are each official members of the Reid My Mind Radio family!
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Subscribe wherever you get podcasts and join the family.
We have transcripts and more at ReidMyMind.com.
I’ll let you in on a family thing…
That’s R to the E I D…
— Sample “D! And that’s me in the place to be!” Slick Rick

TR:
Like my last name!
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TR:
Your listening to Reid My Mind Radio.
Chances are, you know that already because you pressed play!
Duh!
This is where we examine this art form that in its basic essence, is making visual content accessible to those of us who are blind or have low vision.
But in actuality it goes way beyond that.
Today, we look at the power of one.
I know it’s the loneliest number and all, but really that’s only when it chooses to stay by itself.
This experience directly led her to her second book of photographs titled, “I AM More Than My Hair”.
It tells the stories of women who are bald.
Yet, according to Alyscia, the most common cause is stress.
And that can occur earlier than we may expect.
As part of both a marketing and fundraising effort, Alyscia recorded footage of some of the women included in the book.
She applied to Docs in progress – a nonprofit organization that fosters a creative and supportive community for documentary filmmakers.
— Music begins, a slow jazzy piano Hip Hop groove
That required her to contact some of the women featured in the book and arrange to capture their stories on camera.
I am bald, My skin is Mocha. leaning towards chocolate, and about five, seven. I normally wear certain shades. And I love interesting earrings. And so I normally have those on as well. I’ve got on a black dress. It’s sleeveless.
Her first experience began with Bustin’ Loose,
A film starring Richard Pryor and Cicely Tyson.
The description Marguerite says was horrible.
— Richard Pryor saying…
so it kind of took a backseat for me for a while. But the thing that really got me with audio description was I like to go to plays and conferences and music shows and that kind of thing.
TR:
We didn’t get into that for the purposes of this particular discussion, but that to me sounds like a case of a lack of cultural competence.
— Music ends
What is more of a part of this discussion is her response.
When Alyscia was looking for women who were bald to participate in her book,
she put the word out and heard back from a friend who told her about Marguerite.
Marguerite wanted Alyscia to understand that while she herself is blind she doesn’t represent everyone.
I’m always encouraging people to go to places where there are lots of other people that may look like me, because we’re multifaceted. We’re not all the same, just like sighted people we’re not all the same we are of all manner of variables and we’re diverse and in so many things so don’t just think you really understand what’s going on with blind people cause you’ve met me.
About two months following that meeting, Alyscia premiered her documentary at a theater.
Marguerite was there.
She realized the impact of the visuals based on the audience response…
Check out the Reid My Mind Radio family connection y’all!
That documentarian was none other than 2019 Reid My Mind Radio alumni Day Al-Mohammed.
— Music Begins – an up tempo energetic, inspirational Hip Hop beat
That’s my good friend and another 2019 Reid My Mind Radio alumni,
Cheryl Green, Captioner and Audio Description Writer and Narrator extraordinaire.
It’ goes beyond Audio Description and captions in the documentary.
Alyscia created an accessible exhibit on display at Sandy Spring Museum in Maryland.
My hope for this was having the exhibit and also having a panel discussion with Cheryl and marguerite, Judy and three other women was that this will be an example of how museums and artists can incorporate accessibility in their work and into their venues.
One of the main challenges from the perspective of the museums and venues is often funding.
Unfortunately, we know that sometimes museums and other venues and businesses want to see a return on investment.
But it’s not as simple as build it and they will come.
this can’t be a onetime thing.
it’s like now that you know How could you not do anything about it because now you’re aware of it. It’s in your space.
Did you get any feedback from non-disabled people?
— Music ends.
I’m sorry y’all, but sometimes I really do just have to laugh.
Spending time and energy advocating for something can be challenging.
I was more interested in her getting a sense of, of blind people, and that we are asking for opportunities to be able to relate to our world, just like sighted people are, and that she as an artist and a creative person would do whatever she would do with it. And that would be good enough.
Marguerite: 26:36
Just interact ting on different levels, and asking people to recognize, I’m here in this space, and I want to participate.
And sometimes, because people don’t know, you got to be in there, in their mix to get your conversation in there.
Marguerite herself is an artist. She is quite thoughtful and makes some deep connections between the More than My Hair project and well,
life for example.
Marguerite: 30:51
People tend to want to treat you like you’re less then because you don’t have the same access to vision that other people had. But
As an African American?
Most of us realize that we’ve grown up in a country that has not been kind or fair to any of us. And even if we don’t have the words to speak about, it’s a heavy burden, to exist and grow in this society. And when you know that the majority of the power structure is literally walking around with disdain for us, because of the color of our skin. You can put on a happy face and move around. And that’s fine. But I think that it’s deeper than a happy face, I think that there are some natural laws of the universe, that are, are at work all the time. And it would be beneficial to get in touch with what they are, and try to work your life from there. Because if you go with the laws that this country is offering, it’s telling a story, and I’m just given a message that’s not healthy. And it’s not about wellbeing, especially for my community and for me.
Totally unrelated to that project, she’s also working on a new project in the horror genre and says she’s making sure to build in the space for Audio Description.
She’s continuing to give panel discussions on how to make art accessible based on her experience.
Whether you’re a consumer who can help someone learn about access,
a creator who can make your content inclusive or
you’re someone who can provide the funding,
we all play a part.
— “One” Sample from Public Enemy Number One, Public Enemy
— Music begins, an upbeat bright Hip Hop funk groove
The I’m More than My Hair, accessible exhibit will be on display through September 5, 2021. Unfortunately, Covid restrictions have probably been a factor in the lack of feedback from the Disabled community, but Alyscia is hopeful that the restrictions being lifted will help bring out more people.
She’s currently seeking distribution for I Am More Than My Hair the documentary,
which at some point will stream online.
This is just one example of what we know to be true.
When creators learn that their content is not accessible to an audience, chances are pretty high that they will want to do something about that.
Well at least the cool ones!
— Sample – “What the hell are you waiting for” from “Encore” by Jay Z
— Sample (“D! And that’s me in the place to be” Slick Rick)
— Reid My Mind Radio Outro

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