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

TR:

Happy New Year Reid My Mind Radio Family!
I’ve missed Y’all.

I know that may sound weird because I don’t personally know everyone who listens and or or reads the podcast.
Yeh, I said reads, shout out to all of those who consume the podcast transcripts.
Access is dope.

Even though I don’t personally know everyone consuming the podcast, knowing that you do rock with Reid My Mind Radio means we share something.
There’s an exchange of energy taking place.

When I get close to shutting the doors on this thing, something keeps me motivated to rock on!
Y’all are a big part of that.
Thank you!

Twenty twenty four will make 10 years that I’ve been producing audio as Reid My Mind Radio.
It’s also twenty years of becoming Blind.
It’s why I knew I needed to spend some time focusing on what I personally think is the best thing about this podcast – the people.
I want to produce more of the episodes that really dive into our experiences.

I want to focus on adjustment and how art can aid in the process.
I sort of see adjusting as an art form.
There’s no one way to do it.
However, there’s so much creativity involved that I thought it’s worth exploring.

Ten years of podcasting, twenty years of adjusting to blindness … oh and here’s the big one,
Music begins: “Five, Ten, Fifteen Twenty…” The Presidents

TR:

The one I’m the most proud of, y’all ready… thirty years as a husband to my wife Marlett.

— Reid My Mind Radio Intro Music

TR:
Five years ago, I did something I could have never imagined doing when I was a young kid.

In fact, even as an adult, I would have never thought it would be something I’d do.

In 2019, I celebrated 15 years of being Blind!

“Hold Up, Hold Up. Hold up! Say What? “The voice of a small child.

TR:

Celebrating life, my family, clarity of blindness.
(Laughs)
When have you heard that phrase before? Clarity of blindness?
It’s true.

Five years ago and still today, I’m aware that my response to becoming Blind could have been the beginning of a lifetime of running.
Running from blindness that is.
A never ending marathon of doing everything possible to try and escape it.
That sounds exhausting.
But there’s lots of people needlessly sweating, breathing hard attempting to get away.

Meanwhile, it’s always there whether they acknowledge it or not.

But this isn’t really about them.
Well, not really.

This podcast has allowed me to paint profiles of people I find compelling.
It’s also one of the ways I explore aspects of disability.
My way of not running but rather embracing disability in a way that makes sense for me.

This season, I’m challenging myself to create a sort of self-portrait.
That’s not to say I’m doing a whole season on my personal experiences even though some suggested they’d be interested in that.

Over the years of speaking with various people on and off the podcast about disability, I realized that although we differ demographically, we can see some aspect of ourselves in each other.
More than often we share the emotions that come out of similar experiences.
Sometimes, we may see things in others that we don’t like or fear in ourselves.

In this season called The Art of Adjustment, I’m speaking with four individuals all with their own stories of adjustment.
Every episode this season, featuring a guest, will be followed up with a continuation of this self-portrait episode.
To be honest, I have no idea what that will be.
I’m not producing the self-portraits in that straight forward way.
Rather, I’m confident that the experience of adjusting to disability inevitably connects us and
therefore I’m sure there will be elements of our conversation that run parallel to my life.

As I record this episode, I’m thinking I’ll use sound bytes of a guest in the self-portrait episode or maybe it’s something else.
I really don’t know, we’ll find out together.

For the record, this is not about motivation or inspiration.
I’m not someone interested in motivational speaking.
In fact, I don’t really even know what that means.

Clip from Saturday Night Live:
“My name is Matt Foley. And I am a motivational speaker.
(Laughs from audience)
Now let’s get started by letting me give you a little bit of a scenario of what my life is all about.
First off I am 35 years old . I am divorced and I live in a van down by the river.
(Applause and laughs from audience)
Now you kids are probably saying to yourselves (yelling) hey I’m going to go out and get the world by the tail and wrap it around and pull it down and put it in my pocket. Well I’m here to tell you that you’re probably gonna find out as you go out there that you’re not going to amount to jack squat.”
(Laughs and applause from audience fades out)

TR:
I know there are lots of people with that in their linked in profile and claim to inspire, but what exactly do they do?
Ableism just totally messed up the word inspirational for me. I know many of you know exactly what I’m talking about.
You’ve probably been called inspirational for taking a walk, shopping, brushing your own teeth.
Inspiring for actually doing something, perhaps? Maybe it’s just my own issue.

I do want this podcast to encourage those adjusting to disability.
Even though circumstances and details are different, I think those adjusting to any situation can be encouraged.
But, my main concern are those with disabilities.

There’s an alternative to running away from disability.
Stop, turn around and confront it head on.
See what’s there.

I’m not here to tell anyone how to be Blind, how to be disabled.
But I am here to tell you that there’s real value in examining what it means to you.

So I’ll examine in real time

In this season, I’m speaking with those who in their own way have a variety of outlets that allow them to embrace and explore their disability to determine what it means to them.

Whether through artistic endeavors like writing or film making, social entrepreneurship, sports and more, all of my guest joining me this season have so much to offer the world, their communities and you.

?- Music Begins: a heavy synth opens into a driving drum beat.

For those new to disability, no matter what that is, my wish is to be a part of you regaining your ability to imagine your future.

Recently a Reid My Mind Radio Family member reminded me of a time in my life when I couldn’t see myself in the future.
I may have mentioned it here before.
I compare it to being in a hallway with no doors.
Before blindness that hallway for me had lots of doors.
Each was an opportunity, a place for me to explore if I so chose.
Even the doors that were closed were in my mind never locked.
Being in that hallway, stuck with no doors or opportunities was I guess my feeling despair.
It was awful.
I don’t want that for you.
I don’t feel that way anymore and you won’t either.

rock with me and the rest of the Reid My Mind Radio family and I know one day you’ll realize your doors have returned.

In this season, I’m going to bring you what you’re used to from this podcast ; compelling people impacted by all degrees of blindness and disability in general.
Then in a continuous episode I’m calling my self-portrait, I’ll tie some aspect of the conversation with my awesome guests to my 20 years of blindness

If you know of anyone you think can benefit or appreciate what we’re doing here on R double M Radio, please let them know.
We’ll be back publishing episodes at 8 PM on the second and fourth Tuesday of the month
Tell them they should come rock with Reid My Mind Radio available wherever you get podcasts.
We have transcripts and more at ReidMyMind.com
Just remember, that’s R to the E I D!
— Sample: (“D! And that’s me in the place to be.
” Slick Rick)
Like my last name!
— Reid My Mind Radio outro
Peace!

Hide the transcript

[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:

Audio: City soundscape merges into a nightclub atmosphere.

TR as on stage Host:

Greetings & Salutations brothers and sisters!
My name is Thomas Reid.

— Applause

Thank you, thank you very much!

Allow me to welcome you all to the Reid My Mind Lounge.!

— Jazz Music Begins

That’s right; today’s episode deserves an appropriate atmosphere.
I want you to sit back and really feel this one.
This was inspired. And y’all know I don’t use that word lightly.

Mr. Charles Curtis Blackwell is an artist. A visual artist, a writer, poet and definitely a story teller.

Where I come from, what he has to share, we call science or gems. Either way, he’s dropping it!
My hope is that you pick it up!

It all drops after the intro!

Audio: Reid My Mind Radio Theme

TR:

Influence!

Music – Rahsan Roland Kirk, Volunteer Slavery

CC:
Have you ever heard of Rahsaan Roland Kirk?

Jazz horn player. He was more than that. Originally from Columbus but he wound up in Newark. He was totally Blind. He played three saxophones at the same time. He had them hooked together. He influenced a lot of Jazz musicians with this thing called circular breathing. In one nostril and out of the other. Their still blowing. You think they’re holding the note.

I caught him live before I lost my eyesight.

Kind of influenced me years later. I says ok well just do whatever.

Somebody said hey man how you do that? I’ve done some crazy stuff with the poetry. I just said hey man; I’m kind of like Rahsaan Roland Kirk you just got to get crazy on stage. Just go ahead you know get wild, you know (laughs)!

Music Begins… Jazz Track 9 from Charles Curtis Blackwell In Color

I liked Jazz at an early age. They crammed classical down our throats going from 6th grade to 7th grade. It was Mozart, Bach, Beethoven you know, so I got turned off. I tried to flunk the test. Wound up in music anyway. (Laughs) next semester I transferred back to art.

I was doing art before 5th grade. I remember the instructor she pointed out this drawing that I did. It had the whole class’s attention.

maybe because art it just came easy. I didn’t know I was taking it for granted.

Audio: Historic Radio News Broadcast

“the Supreme Court ruled in 1954, that pupils cannot be segregated by law on the basis of race.”

CC:

I was in a busing program. They bused us to this high school from this neighborhood in Sacramento. I was in 9th grade; I think I was around 13 or 14. They didn’t want us there.

The first day we got there, there were white folks with pickets. The end of the school year it turned into a racial riot; 14 people arrested one in the hospital and another one that was supposed to be in the hospital, he was Black, they arrested him instead, they didn’t send him to the hospital. One of the most scary days of my life. I was small man and I was scared man, these cats could fight.

My folks continued to make me go to the school. I didn’t really want to go. And it seemed like it wasn’t a day past some racial remark, I don’t know if you want me to mention those names on here you know. It really messed with me.

There was one incident. They had a policy; you could put the gloves on and have a boxing thing. Oh cool!

This guy kept messing with me. Shoving me into lockers, kicking me, but he always had his buddies with him. His name was Souza. He was a distance runner, He was up for championship.

This went from year to the next year. So I’m from the neighborhood, right. This year we had the same PE class. I told the coach I want to put the gloves on. The first coach his name was McFadden, he was ok. He spoke to me and said ok, we’ll call him in. I trusted McFadden. The other coach, he was a new coach. I didn’t know about him because he wasn’t there the day of the riot. The day of the riot the teachers, they weren’t breaking up the fights, they were yelling you damn Niggers! (Pause) These were teachers. You couldn’t trust nobody.

Coach called him.

Man I’m busy tucking my shirt in, tightening up my tennis shoes, I’m getting ready you know.

They say yegh Charles says that you’ve been harassing him, you did this and you did that.

No, no, no I didn’t!

The new coach he was sitting there, he jumped up and said you a such and such liar I saw you do it. Man, I was knocked off my feet.

They turned to Souza and said what is you ready? He says no, no I don’t want to…

I’m getting teed off. He don’t want to box with me. They say well do you want to apologize to Blackwell (laughs…). I ain’t want no apology. (Laughs…)
The dude apologized, the coach says ok Charles can you accept his apology. I did but I didn’t really want to. (Laughs….)

Audio: Sound of white school busing protests.

All this racism stuff and busing program stuff, I had poor self-esteem.

I was like a D student. My idea was like finish high school, get a job as a janitor and you know bang, that was it. I didn’t have no big aspirations.

I got into reading.

Audio: School bell ringing

We had to write like a newspaper article. And the way I learned how to write was from reading the San Francisco Chronicle. They had real good writers at that time. And so that’s how I kind of picked up on expository writing from reading the newspaper. I wrote an article for this class and you didn’t write this. Someone else wrote it. You know, this is not your style of writing, you didn’t write this. I got a low grade. I said eh whatever. Sometimes they give you a low grade realizing oh wow, what they’re really telling you is you got raw brute talent.

Music transition…

I used to sell the paper it was called the Sacramento Observer, it was a Black newspaper. William Lee, he was over the paper. So I called the paper and spoke to him and I said what if I write a story about these Black students graduating from this busing program. It wasn’t me it was the class ahead of me. They were graduating. He said yeh, write it and get it to us we’ll run it. I said ok. Paper comes out I open up the paper looked inside, looked on the back of the paper I said wow that’s funny they said they were going to run the article. So I called the newspaper, Secretary answered. I said yeh, this is Charles Blackwell, she says yes! I wrote this article they said they were going to run the article in the newspaper, she says yes. I said well I looked inside the paper and I didn’t see then I looked on the back of the paper and I didn’t see it. She said well did you look on the front page? (Laughing) I was knocked off my feet man! I never would have thought they would put the article on the front page. That was poor self-esteem. man I was just flabbergasted, I sold extra copies. I would go door to door selling the paper man, you know. (Laughs…)

Music Transition

I got to college my whole world started changing.

I was an art major. I was trained to do sketches. Funny, I was talking to you earlier about Rahsaan Roland Kirk. So I had a copy of Down Beat Magazine. We had to turn in a final drawing. Kind of like a shadow of the person you know it’s like super imposed, almost like shading. I did it with my 20/20 eyesight just looking at it and doing it. And the instructor said you used the Opaque projector that’s not right. I said no I didn’t use no Opaque projector; I just did it from a magazine. He downgraded me but he was telling me that’s how good my eyesight was.

TR:

Loss!

Audio: Sound of ocean waves continues with van driving…

CC:

I was staying in Santa Cruz for a little while. I was with some friends so we get in the van and go to the ocean. Stop at one place and we’d go further up. The waves were coming in. So they get out and they go down.

I’m in the van, I’m reading this book. A little while later I get out. I go down but I’m going the wrong way. I’m thinking this is the path. I made the mistake of allowing the terrain to half way carry me. There was this big rock, I was going fast and I said well I’ll just go jump and go over the rock. I was assuming it would be a slant. There was a cliff. I didn’t know.

— brief silence

Temporarily paralyzed on one side, concussion, internal bleeding. Broke one small bone. It was my finger. I don’t know how that happened.

Ah man, I just knew I was going to die.

By the grace of God here I am.

I was in the hospital for like a week, seven eight days, something like that. I don’t know man, next thing I know I’m up and going and I returned to my place in Santa Cruz. A few days later I headed back to Sacramento trying to regroup.

I got back in college a few months later.

Finished that semester. Christmas time man, we partied like crazy. I went to every party there was and the next thing you know I met this girl; I was in love man I wanted to get married.

Music – Cymbal crescendo followed by a cymbal crash and flute begins…
Track 6 from Charles Curtis Blackwell, In Color
The unspeakable artist
Yearning, in and out of the room
If we sit in a dark room too long
We will meet the who
In the form of a tormented scream
Examining who we really are

Cymbal crash

CC:

I’m driving, I left college and I’m headed home and I remember I’m at this intersection and the horns are honking behind me and I had to turn. I barely made it.

Audio continues from Track 6 from Charles Curtis Blackwell, In Color

Cymbal crash

And has fearless as we may be to ourselves
Those ghostly cries are all of us laid out in the dark

CC:

They’re doing all these tests, morning to night.
They call it an Edema – it’s where I hit and the fluid went to a state of rest and when it returned back into motion it left my macular pale. Macular Degeneration.

Audio continues from Track 6 from Charles Curtis Blackwell, In Color

But if we stay in a dark room for so long we could see all the colors of the rainbow
Which reside on the other side where tombstones, grave sights pilferage and sorrows dwell.

CC:

They told me there’s nothing we can do. it all comes down to God. That was the end man, I just gave up.

I just dropped out of college. I didn’t go sign out or nothing.

Audio from Track 6 from Charles Curtis Blackwell, In Color.

Magenta unwrapped, indigo unveiled and cobalt for all those chance given up when the soul gave chase to something of an eastern religion.
For residing in a dark room for so long can cause one to worship the form instead of the creator.

CC:

It was like what do we do to carry us through and it’s kind of bad but I was out drinking hook up with some friends get a beer. Somebody else would have some hard liquor. I was doing that too drinking wine.

Audio from Track 6 from Charles Curtis Blackwell, In Color.

Many hales for the blood we fear running through our veins
Flowing upward like the Nile to our heads
In the dark room so sacred yet so cold the skin can’t breathe it

This tranquil rite of passage
Oh woman can you hear me in absence of gender
Nothing but flesh crawling in the dark
Solitary confinement

CC:

The worse thing I think I did, I didn’t know how to be… (Phone connection failing…)
Can you hear me any better? 1, 2, 3… that’s better?
Ok, I’ll turn around then …

I was raised southern family, my folks from Mississippi.

The idea, if you’re going to be with this person you going to be married, you gotta be able to provide. You got to be this man. The male role.

It ain’t about the male role, the macho, the strong…
So that was a big mistake I made trying to push her away, put her at a distance. I was 20. We get taught certain things but we realize that’s not going to help you in terms of dealing with life.

All I remember man was being in the bedroom and crying day in and day out. I would never tell her that’s what I was doing, which was really bad

When life hits in such a manner what do you got to hold onto. Faith and trying to trust God and trying to believe.

Audio Cymbal crash

Might be somebody there that could help you build (hope) and (encourage you to live).
(Each emphasized with echo audio effect…)

Audio: Subway train on tracks

CC:

Wound up at some friends. They were having a pool party at some apartment complex.

Audio: Train comes to screeching stop.
Audio from Track1 Charles Curtis Blackwell, In Color

Pre De Term Mind! Mind! Pre Det term Mind!

CC:

I wound up sleeping at one person’s house, another house.

Had a fight with my Dad, he snatched the phone. I was a psychological mess.

This friend, his name was Ken, we had met on a bus. And we were talking, we discovered we were both born on the same day. He came and visited me while I lost my eye sight. He was from the Santa Cruz area.

It was getting to the point where I really got depressed. I mean real, real serious depressed. And then I just kind of disappeared. Nobody knew where I was. I wound up at the bus station. I went on to Santa Cruz and caught up with ken. I started a fight with the landlord. I was going crazy! I didn’t want to pay no rent. (Laughs) Really wasn’t going to make no sense.

I wound up sleeping on the beach. I got a cheap room at a hotel. Something like six dollars a night. I think I only had a hundred.

I would hang out at this book store and listen to people talking.

I was standing on the corner, people came by and said hey brother, do you know anything about Jesus. I says yeh, God and Jesus I know, what I need right now is food, shelter and clothing. And they said brother we got food, shelter and clothing. I said what? It was a Christian Commune. So I went and stayed with them.

They had me on the laundry detail. They had a second hand store. I was with this other guy, the only other brother and we would go and pickup refrigerators and stoves and other stuff. When I look back on it things moved kind of fast. January I’m losing my sight and going bizerk in the head, the crying and everything. Around August I had disappeared . The early part of September I wound up with this commune. From September til about January I had returned back to my folks in Sacramento.

It got me back into the swing of things not feeling like I’m going to be an invalid for the rest of my life.

Audio from Track1 Charles Curtis Blackwell, In Color

Y’all gonna hear from me… someday!

An older Smokey voice off mic repeats

Y’all gonna hear from me… someday!

But the Blue line escapes all the mental anguish, mental breakdown of knots tied up inside.
(fades out)

Music – Curtis Mayfield Back to the World

CC:

Curtis Mayfield had this song called Back to the World.

I leave the commune and now I’m back in the world. The world is not the same as the commune. People there are kind of helpful and everything. Now I’m back in the world and I didn’t know what to do.

Even though I got back into the swing of things I hadn’t really adjusted all the way.

Signed up with Voc Rehab. They ask if you need a cane. I use a cane now but at first I didn’t. There main thing was trying to make a person productive in terms of society, getting a job, being trained for some kind of work situation. Then they had another part of going to college.

It was the social worker. She was with the welfare department at that time. She was this white lady and her isms started coming out. I made the mistake of when I left town, disappeared, I was 21, I got a beer. I called her of all people, I said I’m not going to be here, I’m gone. Where you going? Well I’m busy drinking a beer. I was dismantled anyway. Some people they don’t understand that because there all emphasis is like get you ready to be productive in society. Well how you going to be productive when inside, you’re a wreck. They don’t comprehend it. She’s saying uh, last time I spoke to Charles he was busy getting drunk on the phone and he was going to do this, this and this. And I was just sitting there , I know it was God. I just sat there and let her run off at the mouth. Huh!

“Words that have meaning” – CC with Ambient effect

Then the guy from Voc Rehab, well you really don’t seem like you know what you want to do in life. And I said oh, ok. I was just agreeing because I was in a different place spiritually. A little time past and I called him and said hey I think I want to go to college.

If you can get me two C’s we’ll fund you to go to college. So I did summer school and got two B’s but I was trying to get two A’s.

They always shifted me, changed, got a different guy for Voc. Rehab. This guy was totally Blind, ok? Man, I go in to meet with the dude and we’re talking. I’m saying oh, this is going to be ok because he’s totally Blind, he can relate to my situation, being partly Blind you know. We’re sitting there talking for over an hour. He’s interviewing me and at the very end of the interview he says ok, boy!

Man he did it in such a manner, I was just shocked.

“Words can help you be empowered!” – CC with Ambient effect

My Dad wasn’t the best communicator. I got back home, I was angry. My Dad was waxing the car. My Dad had a Cadillac (laughs). Picked up a rag, what the heck wax the car, maybe that will help me. I told him what had happened and my Dad, like I said, he wasn’t a real good communicator but this was one time he said something.

He said, he’s testing you.

He’s testing me?

Yeh, he’s testing you.

And that’s all my Dad said.

I milked that counselor like crazy. every time they had something to offer I grabbed it. So we had to bring our grades in, well it looks like you got some A’s here and you got a B and an A and another A . He says well, what kind of help do you need? Well, we got cassette recorders and do you need more reader service, I says oh yeh, oh yeh!

I get out of college and I could have changed counselors but I’m like no I’m gonna stay with this dude because I know what’ he’s like. He was testing me and I’m reading him.

I get out, well congratulations Charles. You can’t go to graduate school, we don’t have no money. We got a training program here.

You could have a cafeteria in a federal building.

I went to Montana, I went to Seattle, Los Angeles trying to get a job. Couldn’t get a job. The reality hit me, being partly Blind, ain’t no opportunities. I signed up!

When almost two weeks or a month we’re sitting at this table. This white dude is sitting next to me. He’s much older than me. He was losing his eyesight. This other guy’s across from me, he was Mexican, fresh out of Soledad prison, but he was in the program too. The guy in charge of the program it was his cafeteria, the guy comes up and says Charlie my boy, you talk back to my employees you can’t remain here you understand that. And I said yes! Just automatically. The white dude sitting next to me said that was F’d up. He was in his 40’s. You know something was wrong. The Mexican fresh out of Soledad said Charles are you ok?

I come back to the world, I’m being all well love one another be real open, be kind to people. This is the racism of America. Even though I may change the world hadn’t changed. I had to deal with it some kind of way. That’s the horror of this country. This is it, this is what’s on the table.

The next day man, I scared the slop out of that man. I threatened that man like crazy man. (laugh) They called a meeting with another state official. The man had me, the guy I had threatened.

Alright Charles, he says he’s scared to be around you. Well just what the F do you want.

“Words that can help you be inspired” – CC with Ambient effect

I came up during the 60’s man. I was involved in the Black student Union, we got 9 out of 10 demands for Black Studies and here this joker gonna do something racist like this.

You know how we learn from people. My mind went back to this brother, his name was Amyl Palmer, he was head of the Black Student Union. The brother could deal, he was way older than me. I leaned back and said what you got to offer?

You want to go to graduate school? I said that sounds workable. (Laughs) So I went to grad school. (Laughs)

CC:

A buddy of mine wrote a poem. I like real conversations.

Real conversations can really help you in life. What is it that helped me, you know, having real conversations like words that have meaning. Words can help you be empowered. Words that can help you be inspired.

Music Begins…

CC:
You gotta deal with the race and then you got to deal with people’s ignorance toward disability even with Black folks.

You think they’re going to relate to your blindness.

You might know, Berkley is where the center for independent living started. They were filing law suits way back in the 70’s. You could be in Berkley it could be a totally different story as opposed to being in Oakland. You get to Oakland, you get people like; Hey, is you blind? (Laughs…) I’ll be waiting for a bus. Hey I’m trying to catch the bus … it’s right there don’t you see the sign? And I’m carrying a cane now. You try to say ok, let it teach me something, try to just grin and bear it, but if you’re trying to hurry up and get somewhere. Let’s say there’s two people at the bus stop. I ask somebody and they say something ridiculous like it’s right there just look at it. I just turn to the next person and say, excuse me can you tell me which bus… and they tell me. And then the other person goes, oh hey I didn’t know you blind. I just walk off and leave them alone. I do them cold but it’s like what can I say to the person?

Every once in a while a person says oh excuse me I’m very sorry. Ok, cool.

I walked in a business before, with a cane, I’m trying to figure out why are they paying so much attention to me but it’s not a friendly attention it’s almost like do they think I’m going to steal something.

One of the worse things I got … I got off a bus one day and the dude said yeh, man, you got that game down, carrying that cane pretending to be Blind. I had some cuss words, I didn’t say them out loud cause it was night time and I ain’t ready for no fight. It’s kind of what they call the Pre Antebellum South the days before Helen Keller. A lot of this society is still like that.

I’m a church going brother. I remember I was at this church a little over a year ago, this friend named Joyce and Leo, hey Charles we’re going to this other church, come on and go, I said ok. I’m sitting there participating in the worship and then the minister calls someone here need to accept Jesus. And this lady is sitting behind me, she ain’t said nothing to me, she hasn’t given me a friendly greeting or nothing. She poked me on my shoulder , you can go up now and accept Jesus. (Laughs) I’ve been sitting there participating in the service and it’s like, no communication she just automatically assumed oh you Blind you need Jesus.

Sometimes there are store front churches and then there’s a good ol’ store front church That kind of backward condemning. maybe the reason you lost your eyesight is because you did something bad. You sinned. God is punishing you. If a person is just losing their eyesight and a person comes along and tells him something like that, oh God man, they’re condemned to hell. It could take them years to get out of that.

I remember this lady, it was Kay Stewart she setup a program for the Blind students at the college. And she was very hip. White lady from Texas. A very, very nice lady. A matter of fact she knew the racist counselor at Voc. Rehab. She wasn’t too fond of him. She was always whatever I can do to help you here at the college, knowing you weren’t going to get all the help you needed from Voc. Rehab. So she would do these cultural programs. When I finished college she got in touch with me and she asked me to go on this outing. She wanted me to talk to this guy, a white guy, he was just losing his eyesight. He was condemning himself, you know, God this and God that. I said hey man that’s not it God is not a condemning God. You got to find out about the love of God.

I had a real good family doctor and he would talk to you. Not like today, they’re running you through like a number. He said you lost your eyesight, take your defect and use it as your asset. Man, that was a strong piece of wisdom. And I passed that on to this other guy.

You find Blind people man, they know the Bible, backwards forward, sideways and down. But do they know how to get out of that condemning. Do they know how to get to that place of being and inspiration to someone else and being inspired and being (forgiving.)
(Emphasized with a slight echo effect)

CC:

I used to listen to Martin Luther King and James Farmer, Fannie Lou Hamer you know.

I’m in college, when I could see good, I’m sitting in front of the library one day reading an article and a dude came up and sat down. It was Souza. And he apologized to me. And I’m looking at him like what. I don’t know whether to listen to him or grab him. He said that he was dating this girl that was Asian and she confronted him. He realized it was his father that instilled all this racism in him. And I was listening and I said wow man!

It was like a Martin Luther King story man.

This time it was real.

Audio Bridge

One of the greatest lessons I learned man, the minister told me, he said, “Never be ashamed to apologize. Be it 8 to 80.”

The lady that I pushed away, it was fourteen years later.

I called her I said, I just want to apologize. She said no you don’t owe me no apology. I says well hey everything in my life is falling apart, I was in a writing project and it collapsed, nothing’s going right and I’m trying to get my life right with God. So I just want to tell you that I’m very sorry I did what I did to you.

I heard her crying on the other end of the phone and I realized I did the right thing.

I realized that I hurt her and I didn’t know I did.

When we apologize it’s like something spiritual takes place on the inside. When we forgive something happens on the inside in a good way.

TR:

Purpose!

CC:

I went to the college with my cousin Anita and I just went over to hang out. So I ran into the friend she used to be a neighbor, her name was Pat. She was much older than me. “Hey Charles, I heard you lost your eyesight.” I says yeh. She was you know very courteous, she knew me. “Come go to class with me.” So I went to a class with her and it was African American Literature. Eugene Redmond was the instructor. He was saying some stuff that caught my attention. I still remember he was presenting this book called “Black Suicides”. I was listening because I was at that point a year before because I had lost my eyesight. By the grace of God it didn’t happen. Black people they say we don’t do this, but here’s a book called “Black Suicides.”. We don’t do it when in fact we do. I says oh wow, this cat is saying something.

“Graduate school!” – CC with Ambient effect

One of the best things I did is sign up , it was an independent study with Eugene Redmond. He was also the editor of the Henry Dumas collection. I don’t know if you heard of Henry Dumas, but Henry Dumas did this poem I still remember;

America!

If an eagle be imprisoned on the back of a coin and that coin is tossed into the sky

That coin may dwindle, that coin may spindle, but that eagle will never fly.

Henry Dumas was shot and killed by a New York subway cop.

Redmond became the editor of the collection. Redmond did a book called Drum Voices. It’s the history and development of African American poets going all the way back to slavery and coming on up to Hakim Muributu, Sonia Sanchez, Amir Baraka. He was always an encouragement and I got an A.

Years later I was having dinner with this brother he was a political person in Sacramento, Grandin Johnson, trying to push for affirmative action years ago. So he had brought Eugene Redmond to the college for a part of Black Studies. I told him yeh, Redmond, I took a class with him and he gave me an A. He looked at me and he said; (pause) Redmond, didn’t give out A’s. If you got an A man you must have been producing some serious work. I kind of hung my head and said well he liked my work. He said I’m telling you he didn’t give out A’s. You had to work to get an A. He really dropped a bomb on me.

I kept in touch with Eugene Redmond, he’s published me about six different times in Drum Voices Review and some other publications too.

Music begins… Slow piano riff moves into a cool Hip Hop groove.

I realized ok, God gave me this talent and with this talent he’s kind of helped raise me up from that bed of poor self-esteem. Lift me up and encouraged me and inspired me. And I have to take care of this talent. I have to nourish it, be kind to it, treat it right and try to use it.

I’m at this place now it’s called Youth Spirit Artworks in Berkley, working with homeless young adults in high school. I try to use stuff like ok, let’s write about the last time someone said to you I love you. The last time you were angry and you felt like you wanted to kill somebody. How you see the situation where the guy is beaten to death on the street and the cop put his knee on his neck. Let’s write about that. Let’s write about mercy. What does it mean for you to be merciful to someone else . And I’m trying to use writing to confront.

I really embrace the Black Live Matter because we fought for the demands for Black Studies apparently somebody was listening.

Audio: Prison door slams and continues with ambient sound of a prison.

I used to do writer’s workshops in prisons and I’d go in and try to be an inspiration and encouragement to those people locked up behind bars with this talent that God gave me.

I did a presentation at Folsom prison and this inmate he wasn’t sitting with his back to the wall. You had to pay attention to that. Other people sitting at the table. It might have been ten people. This one guy when it was over turned out he was a point man in Vietnam and he wiped out a whole family drunk. If it hadn’t been for Vietnam he wouldn’t have did what he did.

He says hey can I ask you a question? I said yeh, go right ahead. He says when you lost your eyesight did you lose your will to live?

Man, I was shocked by that question. I really didn’t want to answer his question, but you deal with inmates they’ll be real with you so it’s best to be real with them. It’ll protect you. I said yeh, I lost my will to live. He says hey brother, he took my hand and said I’m glad you made that decision to live because you’ve really been an inspiration here today. Man, that dude gave me a PhD.(Laughs) He stamped it on my forehead

I got to be like I said, an inspiration, encouragement. Be it if I’m at a prison, at a school, wherever it is try to take this talent, try to inspire, encourage someone to live.

Music ends

TR:

Art!

I started off being trained to do a sketch of you in a minute and a half. Hand and eye.

I can’t do that anymore. I can’t set something in front of me draw it make it look like realism. That’s out!

I had to take a different approach. When I got back into art I was a Sacramento County CETA Artist. CETA program that’s the Comprehensive Employment and Training Act, Jimmy Carter was president.

I was doing stuff that I knew from college because I had been out of art for about seven or eight years.

I did these large carrots, seven foot carrots (laughs). These were paintings. The middle of the carrot had another piece of canvas sewed on it was blue, called “This Carrot Got the Blues.”

I did these large pieces, I took styro foam balls and I stuffed them with Latex paint and then I painted a jet seal over that. It was Braille dots on canvas, it said “Do Not Touch”. And then another one said (laughing) “Read this with left hand only”

I was doing stuff that was workable for my blindness.

Music – Jazz drummer sol – off beat groove Track 9, Charles Curtis Blackwell, In Color

Allen Gordon he was the head of the Art department at one time at Cal State Sacramento. He introduced me to the NCA a group of Black artists from around the country. National Conference of Artists, Margaret Burrows out of Chicago, but even before that time he says oh you’re doing some African art. I says I ain’t took no classes. He said, it’s in you; line, shape, color, rhythm movement. I says oh wow! I’ve been doing more and more of that.

I cover the paper with oil pastels and then I come over it with water down acrylics doing line drawings of African masks on paper. or maybe drummers or jazz musicians on paper. Then I started doing African sculptures playing saxophones or playing a flute, playing a bass. African dancers. Using my blindness and doing abstracts. It might look like a Jazz drummer, a horn player, a dancer with all this abstract stuff you know,

line shape, rhythm color, movement. (Delayed effect on the groove of the beat.)

I’m using my blindness to create the art piece and get to my own originality.

Music ends!

I use my blindness in terms of writing. It’s not what you say, it’s what you don’t say.

Sometime I’m producing art, well I’ll stop and I’ll do some writing. So in a sense the art is influencing the writing.

I produce some writing, well let me set this down and I’ll produce some art. So the writing is influencing the art. Inspiring on the inside- give me some encouragement and inspiration.

I get tired of that well, I’ll go out here and catch a performance, theater play some jazz. I’ll go to an art gallery and see what they’re doing or go catch some poets. I might even sit there and don’t say nothing . I don’t even want to read I just want to you know listen to other people. Right now it ain’t happening. Truthfully I I’ve gotten depressed. Five months I’ve only finished one piece. I started about nine others and finished one. That ain’t saying nothing. I’m usually producing anywhere from one to three pieces a week. So that tells you this thing has hit me in such a manner and all I could do is relate to other people when they’re saying the same thing, feeling uninspired. It’s hard it’s really hard to deal with and I wish I knew some answers. Even I try to get to the spiritual place man I’m blocked on that too. I don’t know maybe you , hey you got some ideas tell me. (Laughs)

The sad part about it is I don’t have a computer and I use visual tech that enlarges print. And I spend a lot of time on that writing. In some ways I wish I had the hook up with the computer but I think I’d be lost.

I don’t take pride in it but I’m computer ignorant and I know I’m ignorant when you get one of these little five or six year olds in here and they know how to hit all the buttons and get everything just right. (Laughs) I know I’m out of the loop.

“Whatever you can do to drum up hope, do it!” – CC with Ambient effect

Music begins.

I never would have dreamed I’d be doing what I’m doing.
I’ve been published, locally nationally and internationally. I’ve had my artwork shown. Some people have my artwork in foreign countries. I’ve had theater plays produced.

Like my Grandmother used to say she said the Lord works in mysterious ways and has wonders to be performed. Maybe that would be my story. I look back on it I’m baffled.

I remember a lady was gonna date me, oh he ain’t got no job, he’s not doing this, he can’t do this. Somebody else said,

Music pauses

apparently you don’t know the brother. ..

My name is Charles Curtis Blackwell!

TR:

Well, it’s a privilege and honor to say Mr. Charles Curtis Blackwell,
It’s official! you Sir are a part of the Reid My Mind Radio family.

Music begins.

While Mr. Blackwell does not have a computer, he does have a Facebook page at Charles Curtis Blackwell. I’ll link to it on this episodes blog post.

I don’t know about you but I’ve been inspired. He said, his art influences his writing and his writing influences his art. That resonates with me. Inspiration from within.

If you’ve been inspired I hope you will let that influence you…

Subscribe wherever you get podcasts!
Transcripts & more are over at ReidMyMind.com. And yes, that’s R to the E I D
(Audio: “D and that’s me in the place to be” Slick Rick)

Like my last name.

Audio: Reid My Mind Outro

CC:
“Laughs, I was knocked off my feet man!”

TR:

Peace!

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