Reid My Mind

“Good Evening!”
Music begins: A funky break beat loop.

TR:
Tribe and trust!

Tribe and trust.

These were the two themes in the last episode with film maker Andres Jay Molina.
Well, for me at least, it was apparent that they play a big roll in the adjustment process. Not just for Jay, but in some way for us all.

When I refer to tribe, I’m talking about a community of people you identify with. Typically this includes support, encouragement and collaboration. It’s not about the number of people but rather the quality of the relationships.

Then there’s trust. First in yourself. As in having the courage and strength to live, speak and move through life in your truth. Whatever that is!

Then, trusting in others.

Even if their not a part of the tribe, which can test a person’s ability to trust.

For this final self portrait, I decided to sit with these things. Ask myself, “how do these things fit into my life today?”

Going into this episode reminds me of how I used to feel when my girls were younger and they’d sit with me in the kitchen as I prepare a dinner every now and then.

“Baby girls”, I’d say to them, ” I don’t know how this is going to turn out, but I guess we’ll see!”

And then one of my girls would say, “Daddy, you’re Blind, you can’t see! And then we’d laugh.

— TR & daughters in conversation laughing.

Take a listen to the episode featuring my girls earlier this season and you’ll definitely get an understanding of our humor and communication style.

I’m Thomas Reid and you are now rocking with Reid My Mind Radio!
— Reid My Mind Radio Intro
Andres “Jay” Molina:
When I first got to the nursing home I didn’t know anybody of course, So I was just hanging out by myself. And then one of the nurses told me, go outside, there’s people just like you, young like you, and you can talk to them.

But when I saw these guys actually, one of them looked Dominican, I’m Dominican.
And that attracted me more.
And as soon as I approached them, they just looked at me and saidcome on man you with us.
and I started hanging out with them.
And that’s when we became friends.

TR:
I wasn’t in any way alone during my early days of blindness. I had my family and some close friends. I even found another brother who I could speak with about this new experience we shared.

Yet, when I heard Jay talk about meeting the other brothers outside the nursing home, it reminded me how I wanted more of that in my early days of blindness.

Today, I believe what I wanted was acceptance and brotherhood. People in my life who really understood what I was now experiencing.
My family and others were sympathetic but sometimes you just want to be around those who you know just get it.

Details matter in relationships.

When I asked Jay for example, what was it about the group of guys hanging outside of the nursing home, that made him feel their words,

Andre Jay Molina:
Come on you’re with us.

TR:
… were true?

He was quick to say, they looked like him. They weren’t dopple gangers.
They just shared a culture and background. A Style of dress, haircuts or the way you wear your hat. It’s recognizable.

— Can’t Stop Won’t Stop, PCB Convention!

TR:
I used to serve as the Conference Coordinator for the Pennsylvania Council of the Blind.
During this one conference in Johnstown PA, a hotel employee, asks me, “Where you from? You’re not from out here.”, he says. “Are you from New York?”

That’s all she wrote. He and I started talking and as he noted, living out there in Johnstown, he was really home sick and didn’t really ever get the chance to kick it with someone in that way. It’s in the vibe. The way you say something as in more than the words. It’s understood. No explanations necessary.

For the rest of that weekend and even the next time we were in that hotel, if he saw me, he was going to stop and try to resume our conversation. I felt bad because I was busy and often couldn’t chat as much as I would have liked to. I too was missing that familiarity. I just wasn’t in the position to kick it. But I appreciated him.

There’s something funny about being away from home and finding someone else from your town that makes you immediately bond with them. I’m sure this applies to others, but I can tell you there’s definitely a New York thing that happens when we’re out of town.

I’ve been all sorts of places, thousands of miles away from home and all of a sudden, you make eye contact with someone and one of you immediately knows.. “You from New York bro?” I’ve met people who I believe if something broke out where ever we were at the time, they’d have my back just on some we’re both from NYC type of thing. But if we were in NYC, chances are we wouldn’t speak to one another.

That’s so funny! And yet awful and real.

Wehn you’re new to disability, you can feel as if you’re in a foreign land right in your own neighborhood.

The idea of recognizing home in someone is probably relateable to us all.

In that space with the Pennsylvania Council of the Blind, it took some time to feel like a part of the group. But if I’m being honest, something was missing for me that could have made that feel more like my tribe.

From the moment I attended my first conference, there were those in the group who weren’t welcoming.
That’s to be expected. I don’t think they liked me, my style or my ideas.
The fact that I was rolling with a crew of people who were either new to blindness or new to the organized blind environment.

We were also interested in having a good time and hyping ourselves up. Ok, I probably did a lot of the hyping up.
Most of the people seemed to enjoy and appreciate that but there were definitely those who turned their noses up to that sort of thing.

Even years later, after all of the work put into the organization it just wasn’t feeling like home. i chalked it up to not being from PA.

Truth is, even though I lived here for over twenty years now, I just can’t seem to claim it like that. I’m not PA.
I’m always NYC.

Don’t get me wrong, I truly love and deeply appreciate the people in PCB and what I was able to learn both from them directly and through all of the interactions and experiences.

Today, I’m older and still sort of feel a desire to find my tribe, but I now believe that there’s not one for me. Rather, there are multiple communities that fulfill me in different ways and at different times.

A disability centered space is something I find myself wanting to be around.
Not all the time, but that free flowing accesible environment like we used to create with the PCB in person conference is a great space to explore and feel what the world can be with a bit of access.

Access is just part of the story.
If you’re a person with multiple identities, inclusion means you’re able to comfortably express your full self.
You shouldn’t have to deny some aspect of who you are in order to be accepted.

For so long, there weren’t many places outside of my home and among my family, where I felt I can be my full self.

That’s not on anyone but me.

There are people I’m around today where I feel much more comfortable being myself.
Some of that is because they are accepting, but a bigger part is me.
I just care less today about what other people think.

Maybe I’m just more comfortable with who I am as a person?

This is definitely about blindness.

By the time I became Blind, I was quite secure with myself as a Black man. But sometimes I still feel as though I’m in search of my tribe. The place I can bring my full self. My Black,which includes my Puerto Rican, my Blind, Bronx, my very silly and nerdy self.

I’ve been promising my family that this is the year I grow up since forever! Forget that, I’m staying five for as long as I’m alive!

Is there a place that would welcome all of me?

Unfortunately, organizations may think they’re welcoming of everyone, but individuals that make up the organization don’t necessarily subscribe to that same idea. Even if they think they do, their actions aren’t always inline with that philosophy.

Everything is fine when it’s obvious you’re all headed to the same destination.
You’re on cruise control. Things seem to change though, when you hit an intersection. And when that is at the corner of let’s say Blind and Black for example, well the degree of openness and brother and sisterhood get’s tested. Welcoming, inclusion, diversity, all that stuff you said you are actually get’s tested.

If you’re a part of such an organization, look around and if those who you met at the intersection are gone, well, you probably failed.
Perhaps it’s time to stop saying you’re welcoming and actually become that.

As disabled people, so much of our lives are impacted by access.

The spaces we visit, the content and information we consume, the types of services we use. It all boils down to physical, digital or some other form of accessibility.

If I’m interested in participating in an event or getting involved with a non blindness organization, I have to think about and plan around accessibility. I need to be prepared to spend time working through a website or app.
Ready to take a picture of a hand out circulated during an event in order to have my phone read it.
Ask for some sort of direction in a new physical space.

Truth is most organizations like people, never consider accessibility. They never had to think about it.

Similarly,organizations with very low or no participation from Black people and others of color, may not recognize the exclusion. Or should I say non-inclusion? (Laughs)

The problem is when any of these organizations say they are inclusive but don’t take any meaningful steps to actually change.
Therefore, my Black and or my Blind are not really welcomed.

Is it really a community if my access needs aren’t being met but culturally I’m included? Can I consider myself a part of a community when all of my access needs are met, but I have to leave my culture at the door.

So it shouldn’t be a surprise that this affects my participation.

Or is that what they wanted all along?

Then they were never about community.

— DJ Scratch transition

TR:
I could imagine that some people found it strange when Jay mentioned that he and the other fellas didn’t immediately trust Jennilee Brewster.

If you recall, the group of brothers would gather outside the nursing home. Smoke a little weed. You know, just chillin’. And yes, at the time, weed wasn’t legal in New York.

Andres “Jay” Molina:
And then we had this white woman coming around asking questions. She was being really persistent.

TR:
I won’t beat around the bush here, these brothers most likely were concerned that Ms. Brewster could be a Karen.

A white lady asserting her privilege and budding into the lives and business of others, especially people of color.

You can find lots of examples of Karen’s at work on YouTube today thanks to smart phones and the ease of recording.

I’m in no way suggesting you go down that rabbit hole. It leads to all sorts of racists encounters that has an under current of possible violence. Plus watching mentally unstable people shouldn’t be entertainment.

For those who are actually named Karen, I feel for you.
But you have nothing to worry about if you’re not the type of person to racially profile people. There’s no need to be offended if you’re not the type of person to call the police on little Black children selling lemonade outside their own homes.

For Black people and others of color, these experiences aren’t knew at all. They’re just documented now.

Whether in corporate environments, schools, social settings, just about everywhere we exist, we learn to bob and weave avoiding micro agressions like a boxer dodging jabs, upper cuts and knockout blows.

No, actually, every where we exist!

— Clip of MTG attacking Rep. Jasmine Crokett in Congress.

TR:
So when jay explained that he and the rest of the brothers who would become the reality poets were leery about letting Miss Brewster into their circle, well some of us can relate.

Yet, we need each other. Jay’s story reminds us of that.

It’s an example of how opportunity often doesn’t present itself like we imagine it in our minds. It’s not as defined. It’s not flashy. The messenger rarely looks like the person we imagine or hope for.

Trust is essential.

Jay and the rest of the brothers eventually did put their trst in Ms. Brewster. It paid off. They became the Reality Poets. That not only made an impact on them personally but they’re art is doing the same for others.

What if they didn’t trust? What if they waited for an opportunity to present itself in a way that made them more comfortable?

Did Jay’s past make you uncomfortable?

I’m talking about his former occupation; drug dealer. He spent time in prison. I never asked about that part of his life. It’s in his past.

I do think about how many Black and brown people today are behind bars for selling weed. Meanwhile, now legal in many states, the Cannabis industry, overwhelmingly run by white men, has taken off. And like every other industry that forms, will be run by a few large corporations.

I think about these Black and brown men and women who when released from prison struggle to support themselves. This world doesn’t really seem to hand out second chances very equitably.

I don’t want all of these micro aggressions, systemic problems, the attacks on humanity, to change me for the worse. I want to believe in people, while still being aware. I want to be conscious and still able to trust in others.

That takes serious work!

— Break beat Transition

TR:
When should we trust ourselves?

We all have ideas that at some given time, we believe are correct and defend.

When something forces us to re-examine our perspective, we either realize our ignorance and change or become even more convinced we’re right.

When Jay talked about his reaction to seeing a wheel chair user at the bus stop knowing it was going to make him late for work, I’m sure he felt justified and would defend his position at that time. It’s a common reaction in a busy town where everyone is rushing somewhere. We want to hold someone responsible.

You ever notice how no one gets mad at the bus designers? Why the heck didn’t the bus manufacturers make it easier for those using wheelchairs to get on the bus like everyone else?

We don’t get madat ourselves for not leaving earlier and building in time for unexpected delays.

I give Jay a lot of credit for sharing that story. Any time someone shares an ableist thought or action from their past, I want to highlight it and recognize them for their honesty. I know it’s not easy.
I also think it’s something we should uplift for the sake of making space for us all to grow. I want that space for me too.
I’ve said and done things back in the day I wouldn’t do today.

I recognize and appreciate that Jay had to have a certain level of trust for me to share that story. In fact, I’ll say that about all of those who share their stories with me on the podcast.

I actually take that pretty seriously. Trust in general, is a core value of mine. I don’t do well with those who break it.

Trust needs to be earned.

Yet, we really do trust in things that can’t actually earn our trust. Wheelchairs, computers, access technology, a white cane.
All of these things can’t earn our trust. We’re believing in those who make the equipment, those who teach us how to use them and mainly ourselves and our ability.

When I once trained those new to blindness on technology, it was pretty obvious after a while who was going to adapt to the new way of getting things done.
Some would focus on how they used to do it.

“I used to just click the mouse and drag this file over to the other window”, they’d say. Yes, I know, I’d say.
I did that too, but now let me show you how you can do this today.

I hated my screen reader in the early days. I tried to convince myself that I couldn’t understand what it was saying. But it was clear that the more I complained to myself, the less I was actually getting done.

I didn’t have an alternative. My eyes were gone but my ears and ability to learn were all in tact. So either I was going to quit and do nothing or figure it out. In my mind, the pain of quitting and doing nothing feels worse than trying and not getting it. At least you can keep trying.

Then again, thinking about this now, of course I’d adapt to the technology. I’ve always been comfortable with tech.
I’m confident in my abilities, I trust myself.

In other areas of my life, I don’t feel as confident and may not be as quick to adapt.

Dang! I have to keep it real. There are times when it feels like I can’t trust or believe in others, but perhaps I’m really not trusting in myself.

My ego is telling me to strike this from the episode, wwe’ll see who wins.

— DJ Scratch Transition

TR:
There was a lot of trust involved in this Art of Adjustment season. I had no idea how I would produce the self-portrait episodes. I relied on inspiration and faith that something would come out of the conversations. That part is a given, it’s more about the trust in being able to make it work.

Whether or not it works is subjective. That’s up to you the listeneror transcript reader.

My hope is that some concept or idea discussed in one of these AOA episodes got you thinking. Perhaps encouraging you to consider how art or some form of expression can be a vehicle to assist you in your own adjustment.

The focus here on R double M Radio is adjustment to disability, but it applies to life in general.

Ah, y’all know that.
You all make connections and don’t experience things in a vacuum. That’s why I enjoy hanging with y’all!

Hey! This is my tribe! The R double M Radio family.

This podcast has helped me meet and establish relationships with people I’d otherwise never really get the chance to interact with. We share similar perspectives on a variety of topics. At least, we share the idea of being open. For me that means, open to other points of view, but not when they come at the expense of others or threaten a group’s existence. I’ll remain closed to hate, lies and deception. That’s some corny sucker stuff!

Even though this is a podcast and the communication seems like it only flows in one direction, you know it doesn’t have to always be like that.You can hit me up, ReidMyMindRadio@gmail.com. Give it a try.
REIDMYMINDRADIO@GMAIL.
COM (spelled out).

How is art or some other form of expression a part of your adjustment?
Have you been delaying the pursuit of that interest?
Did any particular story resonate with you in a special way?

Let a brother know.

— DJ Scratch Transition

If you didn’t really dig these series of episodes, like it wasn’t your thing, you can blame that on me. Well, you’re probably not listening right now so I’ll move on.

If you enjoyed these episodes well give the credit to the artists themselves: Krystle, Andrew, Kiana and Jay.

It’s all their fault!

They not only shared their stories and perspectives but they inspired the thoughts and ideas that came to be the self portrait episodes. That inspiration is a result of our actual conversations, they’re work, interests and experiences.

I hope it proved to do the same for you.

The process of producing it alone in my mind is the win for me. Like I said earlier… ” I don’t know how this is going to turn out, but I guess we’ll see!”

I’m off to continue working on the next season. That means you won’t hear from me until July. Or August, there’s a lot going on.

We do have a Blind Centered Audio Description Chat episode dropping in June. So stay tuned for that.

Also, if you’re interested in some free audio described content head on over to ReidMyMind.com. I’ll link you to a YouTube playlist of the
2024 Easterseals Disability Film Challenge Finalists. Audio description provided by Social Audio Description Collective!

— Airhorn

The best way to stay informed,is to follow or subscribe to Reid My Mind Radio wherever you get podcasts. Transcripts and more are at ReidMyMind.com.

There’s lots of ways to get there:
Maybe you open your favorite browser and type, some of y’all like to dictate…
however you do it, you got to spell it right

Say it with me; that’s R to the E, I D.
— Sample: “D… and that’s me in the place to be! Slick Rick

Like my last name.

–Reid My Mind Radio Outro

Peace!

Hide the transcript

TR
When it comes to adjusting to disability, do the specifics of a person’s disability really matter?
I’m talking about when it comes to living your life? Finding meaning and your purpose?
Personally, I think these are things we all desire.
Not based on our so called race, economic status or abilities but rather our humanity.

My final guest In this second to last episode of The Art of Adjustment, where we continue to highlight the role art plays in that process, is film maker, Andres Molina.

Andres “Jay” Molina:
But everybody calls me Jay .

Forty six year old Spanish man, light skin wearing a Vegas Raiders hoodie and hat. My pronouns are He/Him.

TR
Welcome to Reid My Mind Radio! I’m Thomas Reid your host and producer.
This may be your first time here, so let me explain the rules.
We don’t officially begin until the drum drops! I’m talking about…

— “Theme music. Every good hero should have some!”, Keenan Ivory Wayans, “I’m Gonna Git You Sucka”

— Reid My Mind Radio Intro
Andres “Jay” Molina:
I was living in the hood. In New York, in the lower east side of Manhattan. I used to be a truck driver. At some point there, I decided that I didn’t want to work as a driver anymore.

I started selling drugs. A few years after that, I got arrested, and I did some time in jail.

TR
After prison, Jay had to do some time in a drug program where he contracted a rare form of Pneumonia.
It put him in the hospital for a couple of years.

Andres “Jay” Molina:
Being so long in bed, I lost a lot of muscle mass. I lost my motor functions. I don’t walk today, I became disabled. All this happen in 2014.
— Sounds of busy city streets….

I used to be the type that didn’t really care much about disabled people. When I used to take the bus to go to work, usually there would be a couple of disabled guys, people around the route that I take. And as soon as the bus used to stop to pick them up, I used to be the first one in the bus, “Fuck, these fucking disabled guys. It’s gonna make me late now.”

TR
Hard to hear?
I’m in no way condoning this way of thinking.
Yet, as someone who grew up in New York and traveled to and from school and work on buses and trains, this is not an uncommon attitude.

I remember being on the train headed to class and someone got sick or passed out.
The conductor in these situations isn’t allowed to move the train.
The person even if they are conscious has to remain on the train until the EMT’s arrive.

Even the little old lady clutching her rosary beads is like, “Get them off the bleep bleep bleep train!”

— “Stand clear of the closing doors please!”, Vintage recording of NY transit Subway Announcement
— “New York, New York! (Voice pitched to an ominous deep voice)

Andres “Jay” Molina:
And then it hit me like a smack in the face because now I am one of those people.

Music begins A menacing synth loops and launches into a gritty, slow dark, Hip Hop beat.

TR
Following those years in the hospital, Jay needed physical rehab. He was sent to the Coler Nursing Home on Roosevelt Island. Just off the eastern coast of Midtown Manhattan.

Andres “Jay” Molina:
When I first got to the nursing home I didn’t know anybody of course, So I was just hanging out by myself. And then one of the nurses told me, go outside, there’s people just like you, young like you, and you can talk to them.

TR
Different groups of people congregated Outside the home. It’s a nursing home so the majority are seniors.

Andres “Jay” Molina:
But when I saw these guys actually, one of them looked Dominican, I’m Dominican. And that attracted me more. And as soon as I approached them, they just looked at me and said, “Come on man you with us”. and I started hanging out with them. And that’s when we became friends.

Andres “Jay” Molina:
I identified with them. They all looked like they came from the same background that I did. The way they talk. The way they joked around with each other.
It looked more like disabled people from the hood. That’s why I went to them right away.

TR in Conversation with Andres “Jay” Molina:
How important was that for you to have this group of other Black and Brown Brothers Who were in a similar situation?

Andres “Jay” Molina:
I felt really comfortable. They started taking care of me.

TR
they did more than congregate outside the nursing home. They broke bread together.
At the time, Jay was fresh out of the hospital. he didn’t have any money. So they all chipped in to cover Jay.

They helped each other.

Andres “Jay” Molina:
Even though I don’t walk I am what is consider independent, I can move my hands. I could move around. Most of my friends are gun violence survivors.
They are paraplegic’s and quadplegic’s, they don’t really have movement in their hands and bodies. So I started helping them.

So for example, I used to roll the blunts for them.

TR
It goes beyond rolling’ the weed, putting the blunt in their mouths and lighting it. Jay would feed his brothers as well.

Andres “Jay” Molina:
So we became close because of that. We got like a family like, I take care of you, you take care of me.

— Nino Brown A toast! (Clinking Champagne glasses)
Am I my brother’s keeper?
CMB Yes I am.

Nino Brown Am I my brother’s keeper?
CMB Yes I am.”, “New Jack City”

TR
While Jay and the other brothers continued to grow their friendship outside the nursing home, they didn’t realize they were being watched.

Andres “Jay” Molina:
A white lady called Jennilie Brewster was doing volunteer work here in the nursing home. She noticed that they didn’t have programs or projects for younger people. Usually, it was about the older crowd. She wanted to do something for us. And she started a writing workshop.

She used to come around to ask us to go to these writing workshops.
But at first we were leery, we were like white people probably police, because we were out there smoking weed.

— Whoop Whoop, Sound of the Police! KRS One

Weed wasn’t legal in New York yet.

Now we’re doing something that we’re not supposed to be doing. And then we had this white woman coming around asking questions.

She was being really persistent. She kept coming. And then one day, we decided to go to one of the workshops just to see what she was talking about.

And she started encouraging us to write about our lived experiences. To write about things that we wanted to write about.

TR
J’s first poem tapped into his memory of living on the lower east side of Manhattan in 2001.

Andres “Jay” Molina:
About how I felt about being part of 9 11

— News clip featuring Brian Gumble after the first tower was hit and before any information was known.

Andres “Jay” Molina:
Every piece of poetry that we do is about reality. It’s about what we went through.

TR
The group worked with poetry coaches during the workshops. The next thing you know, the crew was hype, excited about poetry.

Music ends!

Andres “Jay” Molina:
And that’s when we formed the Reality Poets.

TR
The Reality Poets which includes the crew of brothers Jay was invited to join and some others, are a part of what became known as Open Doors NYC.

According to OpenDoorsNYC.org, the group produces artistic collaborations, programs and mobilizing campaigns focused on community building, disability justice and gun violence prevention.

“Hit in the neck I ain’t even feel the burn.
Paralyzed instantly.
Praying to God, please don’t take me now
I got a little girl to look after and
I’m not trying to look after her from the sky”, Reality poet

OPEN DOORS is a project of the Center for Transformative Action-a 501 (c) 3 affiliated with Cornell University.

TR in Conversation with Andres “Jay” Molina:
What was your experience with poetry prior to disability?

Andres “Jay” Molina:
no experience at all. I never wrote a poem in my life ever. Didn’t even know how to write a poem.

Music begins, “Hooray for Hollywood”
— Explainer video about the film making process.

Andres “Jay” Molina:
I started thinking about how are movies made? What are the steps that go about making them? And that always intrigued me.
And that was always what I was after, making a film, documentary, feature film, a fiction film. Just something I think that would be fire.

TR in Conversation with Andres “Jay” Molina:
So was that an interest before disability?

Andres “Jay” Molina:
After.

I actually taught myself how to work with Premiere Pro. And I also taught myself how to work with After Effects. Taught myself Photoshop too. So I basically became a motion graphics artist.

TR
I can’t help but think about the importance of access.
To people, information, technology all based on our personal abilities.
But still, it begins with That desire to pursue our interest. Which comes down to trust in ourselves.

— Fire Through Dry Grass Trailer

Andres “Jay” Molina:
I wanted to make a documentary about the reality Poets. About everything that we went through and all our accomplishments.

And then in the middle of that, COVID hits.

a hospital called Elmhurst Hospital . in Queens, New York, was the epicenter of the pandemic. And they brought a patient from this hospital, into my room, put him in the bed right next to me. This patient had COVID. He was coughing the whole time he was there, gasping for air.

I have a lot of underlying conditions.

I felt betrayed. All these freaking people don’t care about me. They don’t care if I die or not.

TR
Feeling powerless, Jay reached out to someone he could trust.
Someone he believed cared about him.

Andres “Jay” Molina:
I call the director of open doors, Jennilie Brewster. I told her about the situation.

And she said, Jay, you are an aspiring filmmaker. why don’t we just make a film about this?

— ” A nursing home is ground zero. But it just takes one person with a virus and then it is fire through dry grass”, NY Gov. Anrew Cuomo

TR
Prior to the pandemic, Jay was working with an experienced filmmaker after receiving a grant from the New York City Mayor’s Office.

Andres “Jay” Molina:
Alexis Neophytides was my mentor. We were working together for a few years before COVID.
I call Alexis right away. And I told her about what I wanted to do. And she said, let’s make this documentary together.

TR
The film, Fire Through Dry Grass, captures the early days of the Covid 19 Pandemic from the perspective of Jay and some of the other Reality Poets. Literally, it’s from their perspective.

Andres “Jay” Molina:
We got like about four GoPro’s and I started clamping them myself to the chairs.

the GoPro shot is like a camera. They have a really big memory card like 60 gigabytes.

TR
Jay and the crew traveled throughout the nursing home documenting what was actually taking place.

Andres “Jay” Molina:
going to different offices within the facility and just recording everything.

TR
We’re talking about two Terabytes of video.

Andres “Jay” Molina:
We also have a lot of footage from outside of the facility. My collaborator, Alexis’ husband, were the ones coming and recording everything from the outside.

Every two or three days, I will just collect the GoPro, download myself into my computer And then upload into our Google Drive.

Andres “Jay” Molina:
As we started talking more and more about the film. We pitched the idea to ITVS public television, PBS channel. They liked it and they actually gave us the funding for it. So we started hiring people to work with us. The job was to watch the footage, and highlight and put aside anything that seemed important.

TR
In addition to zoom footage from the members of Open Doors in conversation as they continued to meet, there’s also arial shots taken from a drone.

Fire Through Dry Grass not only helped tell the story of the dangerous conditions being faced by both
residents and staff during the pandemic, but
it also raises the issue of disabled access to community housing.

Andres “Jay” Molina:
All of us have different agendas.
Most of the guys do want to move out. They always in the hunt for apartments.
Some of them are just here because they haven’t found one yet.

TR
Jay himself was offered multiple apartments. But they were often located in housing projects throughout the city. He didn’t feel safe and they were located far from his family in downtown Manhattan.
That was years ago, before chronic kidney disease.

Andres “Jay” Molina:
Which means I am on dialysis.
Even though I could live in the community and just go to the dialysis center, it’s much easier for me to live here.
All I got to do is get on my chair and go to the third floor and do the dialysis session.

TR
Community housing for disabled people is not just about access to shelter.
It’s about having the agency to control your own life and make your own choices.

— “Leave me alone, I want to be free from being told how to live my life
By rules, regulations, laws, bylaws, loop holes, pot holes and assholes
Let me be free to make the decisions that best serve me”, Peter Yearwood, Reality Poet

TR
Ultimately, the message that Fire Through Dry Grass makes clear is Nursing Home Lives Matter.

Andres “Jay” Molina:
During COVID Our now director of open borders, Vincent Pierce , wrote up a petition to get the CEO at that point of Coler, Robert Hughes, removed from his post.

We felt , he wasn’t advocating for us.

He was letting the Department of Health and CMS run all over us, take our freedom away. We felt that we were basically having our human rights violated.
And he wrote that petition to get the CEO removed from his posts, and other organizations saw this, and started supporting us.

That was around the time of Black Lives Matter. they formed Nursing Home Lives Matter.

TR
Robert Hughes, the CEO of Kohl at the time wasn’t fired, but I can imagine, the pressure got to him.

Andres “Jay” Molina:
The CEO retired in 2022.

TR in Conversation with Andres “Jay” Molina:
What can people do if they want to be of help? How can people support?

Music begins Bright, upbeat, ambient music that sounds like lights bubbling to the surface.

Andres “Jay” Molina:
Go to OpenDoorsNYC.org, that’s our home page. There’s a Nursing Home Lives Matter link. When you hit it you go to the Nursing Home Live Matter page. You can join in, leave your comments, leave your ideas on how you think is the best way to change nursing homes. In the country Not just here in New York.

TR
Today, despite the convenience and ease of access to dialysis treatments, Jays opened to living in the community.

Andres “Jay” Molina:
If I find myself in a situation in which I get an apartment, close to my family, my friends, my mother, my sister. I probably think about it again to move

TR in Conversation with Andres “Jay” Molina:
Do you think that would impact the reality poet’s if y’all are all, not in the nursing home together?

Andres “Jay” Molina:
No, because we also have two members that don’t live here.
Even though we do get together in person, we usually do everything virtually. Most of our meetings and events are usually through zoom calls. But every once in a while we do have in person meeting or event or project. And we just take an Uber, Access Ride to the location and get together.

TR
Since the making of this film, two of the Reality Poets have moved back into the community.

TR in Conversation with Andres “Jay” Molina:
Are there any things you learned about disability from making this film?

Andres “Jay” Molina:
Disabled people been living in what we call a system of oppression for over 100 years, in which we are treated differently, we are treated like second hand citizens
we are not being respected, we are not given the tools or help that we need to advance ourselves in life. And that’s what we are trying to break with this nursing home lives matter movement, that we matter , we are human beings too.

You still have a mind, you have a purpose, you have a say in your life, and the way you want to live your life, and that should be respected . And that should be enhanced, embellish by the people in power.

TR in Conversation with Andres “Jay” Molina:
Do you think there’s a power in film to do any of that as a filmmaker yourself?

Andres “Jay” Molina:
Of course!

We have advocated a lot for disabled people through the years of us being together.

We have done this movement Nursing Home Lives Matter. We are putting disabled people on the map.

Even though it has gotten better in Hollywood, a lot of disabled artist have been hired now, we think there’s room for more.
Not just actors and directors and screen writers, artists, poets, graphic designers all different type of arts.

I was talking to the group about making the documentary that I wanted to make originally before COVID about the Reality Poets, to show people if you try you could do it you can make it.

Music comes to an end.

TR in Conversation with Andres “Jay” Molina:
One of the things that you said is that when you became disabled, it sort of helped you discover yourself. And I’m curious to know, how do you feel about that man today?

Andres “Jay” Molina:
Well, I feel like I’m a better person now. Somebody that looks out for his people, people in pain, disabled people, People who need help.
Even though I’m in a wheelchair, whenever I see somebody, you know, like they can’t do it, I tie the shoes, I fix the pants, or fix the shirts, I fix the hats.
if they need me to feed them I will feed them. I’m more in touch with humanity now, which I wasn’t really before.

I didn’t really have a purpose. I found my calling.
, I became a poet. I became a filmmaker, motion graphics artist, Photoshop.

I tell people that I don’t regret me being disabled. And people are like “what you crazy” and I’m like I don’t regret it.

I found myself after I became disabled.

Music begins A very bright, inspirational piano loop that opens to a lively bright up tempo beat.

TR
Salutes to Film Maker, Poet and the newest addition to the Reid My Mind Radio Family, Andre Jay Molina. (Name extended like sports announcer)

— Airhorn

Shout out to all of the Reality Poets and everyone involved in the making of this film.

Fire Through Dry Grass goes beyond the experience of disabled people in nursing homes.
It’s about brotherhood, community, trusting in others and finding your purpose.

You can watch Fire Through Dry Grass on PBS online or the app.

I’m looking forward to more films from Jay on the big screen or other streaming platforms.

Andres “Jay” Molina:
I have ideas.
We wrote a play a few years ago called Fade about disabled men, that co own a barbershop.

— Scene from the play

So the play we had it in a theater for like a weekend, and it was received really, really good. So I’m thinking about making that into an animation stop film.

TR in Conversation with Andres “Jay” Molina:
I like it. And if you need some extra voice talent, let a brother know.

TR
Look don’t shame me. My clock is ticking, if I’m gonna put some points on the board, I have to take the shot!

— Basketball shot clock expiring and swoosh of the ball through the hoop.

TR
Listening to Jay talk about meeting the brothers outside of the nursing home, their camaraderie and their opportunity to collaborate really makes me think I’m still in search of my tribe.
I’ll talk about some of that in my final self-portrait in the next and final episode of this season. The Art of Adjustment.

As I said in the opening of the episode, the details don’t matter as much as we think when it comes to the experience of adjusting

Can you relate to Jay’s story?

Some people focus on differences. I don’t necessarily think that’s bad. Unless you’re judging or viewing through a narrow lens closed to any sort of empathy.

When I hear Jay’s story, I think about the importance of access to explore and pursue our interests.
I’m reminded that , unfortunately, these opportunities aren’t afforded to everyone equally.
Some neighborhoods and schools have programs that encourage young people to explore their creativity.
Some families have the ability and knowledge to make opportunities for their children.

Adjusting to disability can feel like time has stopped.
It’s like being in the middle of a game and the coach pulls you out.
You were just warming up and now you’re riding the bench to no where.

However, time, is access.

For Jay, disability gave him the time to learn a craft. This put him in the position to tell the story of what was taking place in the nursing home during the pandemic. He was prepared and equipped for what became an opportunity.

The older I get, the more I realize how time is limited and therefore quite valuable.

If you’re someone new to disability and feel stagnant, consider this your chance to prepare for an opportunity waiting to present itself to you in the not so distant future.
Hopefully it won’t be during a life threatening pandemic.
But whatever it is, I hope you recognize it and like Jay, light it up!

— Sound of a lighter and an increasing burning fire.

TR:
By the way, you know what else is hot?
Reid My Mind Radio baby.

— “Fire!”

Let’s continue to spread it!

Tell your friends, enemies and perfect strangers that they can get it wherever they listen to podcasts.

There’s transcripts and more at ReidMyMind.com.

The only way to get there I promise you, is by spelling it right…
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

— Sounds of Thunder storm transitions into a birdsong filled spring day!
TR:
I’m fortunate to live in a place where I’m greeted each morning, during three seasons, by happy bird songs.

There’s this one bird, I think he’s responsible for making the daily announcements to all of the birds in the neighborhood. I’m dead serious.

Growing up in the Bronx, we had pigeons and those little brown birds that bounce. Some of y’all know what I’m talking about.
What are those birds? Are they babies? I don’t think they’re baby pigeons.
Are they orphans? I never saw them with their parents.

Obviously, I admit, I don’t know much about birds, but since moving out to the Poconos, I’ve become a fan.

there’s this one bird, I’ll call him the bird caster.
I first hear him in the morning around 5 AM in the back of my house. He’s calling out to the others. It’s not a song. It sounds more like a message.

— A fluttering high pitch voice
“Good morning everyone! Today’s announcements: First, to all the youngsters, class will begin at 8 AM sharp! The weather today, partly sunny, but be prepared it feels as though a front is moving in from the west.”

This is not a direct translation, but I’m telling you, bird caster is making announcements.

Next thing you know, he’s off, repeating the process on the east side of the house.
Flying around the neighborhood, spreading the daily word, that appears to be bird casters role; delivering messages.

— Sounds of birdcaster in the back repeating his message.

My wife doesn’t like birdcaster.
She’s not a morning person.
That’s more my thing!

I respect birdcaster. He has a function and seems to take it pretty seriously. Based on my unscientific research, outside of rainy mornings, birdcaster is out there doing his thing.

It’s spring y’all, I’m waiting on birdcaster and the rest of his crew to return.

Since we’re in this Art of Adjustment season, I’ll take a queue from nature and deliver a bit of a message.

I know there are lots of our brothers and sisters out there who because of disability, feel as though they’re currently in a season of wait.
But, you’re actually in a season of prepare.

This down time that you’re feeling, is perfect for rehab, retraining, for formal or informal education.
Maybe it’s trying something new, something that’s always been of interest.
As much as possible, consider focusing your energy on you and really dive in and use the season.

Remember, a little movement in some direction is the beginning of momentum.

— Pause

I just made that shit up! (Laughing) I’m Thomas Reid host and producer of Reid My Mind Radio. baby! Let’s go!

— : Reid My Mind Theme Music

— Caribbean soundscape (beach, calypso music maybe outside bar)

TR:
In this episode we move forward with my continuous self-portrait, where I explore my adjustment experience based on aspects of conversations with my guests.

While it didn’t make it into the final edit, my actual conversation with Kiana Glanton featured in the last episode, began with her love of Carnival.

I’m not talking about the traveling amusement parks with rickety roller coasters, stuffed animal prizes and funnel cake.
— In a filtered voice; mm…. funnel cake!

I’m talking about Caribbean Carnival.

— Sounds of ocean waves and a steel drum lead calypso music.

The origin of Carnival dates back to Egypt. That’s in Africa y’all!
It was then adopted by Greeks, Romans and Europeans. But what we know as Carnival today has it’s roots in the Caribbean islands where former enslaved Africans celebrated their freedom and more.
It takes place around the world in various forms.

My only experience of Carnival is the West Indian Labor Day Parade on Eastern Parkway in Brooklyn.

— Sounds from the West Indian Parade in Brooklyn!

Kiana:
My favorite carnival hands down is Barbados Crop Over, where it’s the end of the summer season would really literally the crops are over in the whole island celebrates with the parade and parties and festivals and competitions for Soca and Calypso.

For me that down home, very connected, very communal experience came from Barbados.

TR:
It just so happens, when Kiana and I were discussing Carnival, I recently confirmed that my paternal grand father was Jamaican.
I’ve always thought this was the case, but never confirmed.

My mother was from Puerto Rico and I’ve always felt a certain attraction to the Caribbean.
Like I want to move their at least part time the way folks winter in Florida.
No disrespect to my brothers and sisters in Florida, but y’all got to get rid of that governor and the incredible anti blackness.
Yes, it’s everywhere but woof!

Kiana:
The moment I stepped foot in Barbados, I felt like I was home there was this very Africanist.
This very kindred kind of connection that happened the moment that I got there, that I felt like I had been there before, or that I was home.

I was just like yo, , I could live here.
I feel so welcomed.
And I think it is the inherent African spirit, honestly, that like, makes you feel at home.

— Music begins: A up beat percussion heavy African Soca inspired rhythm beat.

TR:
My genealogy isn’t the focus of these episodes.
This is about the art of adjusting, which like these self-portrait episodes is a continuous process

Kiana:
I have not figured out how to participate as a visually impaired person simply yet, because there are safety issues, you have 1000s of people drinking, you have trucks that are moving.
This could be an incredibly day and then your own streets that are not like the streets in the US these are Caribbean streets that have had hurricanes, and everything.
The infrastructure is really different. So it’s not the safest thing to cane, I would say safely behind drunk people and behind the truck. So I have not figured out how to reengage in carnival just yet, but I’m determined that I will return at some point.

TR:
It goes beyond just navigating.
So much of the Carnival environment is visual, but it’s also about community, food and drink.

My first thought is why not experience the Carnival from within as part of a float.
I’m often more interested in being a part of the production. Creation over consumption. Unless we’re in the kitchen, consumption is my preference.

I know there are some out there who hear my approach and may feel it’s limiting.
Thomas, come on man, you can use your white cane and get around if you try.
They’re not wrong. But, if you ever been in such a crowd of people all enthralled by what’s going on around them,
plus add in the rum and other libations, I just don’t know if that’s a battle I personally want to take on. You can, if that’s your desire! You better have some back up canes.

My agenda is more about enjoying the Soca and Calypso music. Sipping on my refreshing rum punch or some Ray & Nephew,
and ultimately reveling in the festivities. But if you want to use that time to gain an O&M Grand Master badge, I support your right to go for it!

I also support disabled people, using our voices to challenge society in different ways. Rather than us conforming to what so called able bodied people deem as…

–Music Ends.

“normal”, why not purposefully enter these spaces with the intention of making them accessible, comfortable environments for us too?

# Working within Blindness

TR in Conversation with Kiana:
I’m curious.
There’s a conversation in the community about whether or not people should be involved in the blindness field.
There’s this idea that oh, some people go in there because it’s easy.
Some people think that that’s a cop out, Oh, you shouldn’t go into the blindness field, you should go out into the workplace and do other things that have nothing to do with your blindness.
.
Have you heard that conversation? What do you think about it?

Kiana:
My thought is this.
You do not get to tell me how to live my life and how to be successful how to be great at being a blind or low vision person.
How do you know that this is the most effective? How do you know that this makes the most sense?

TR:
So much of the philosophy around blindness is based on the idea of being independent. I truly believe in being independent. However, conforming to society for the sake of appearing independent and not in need of any “special” help, well that just let’s society go unchallenged.

Think about it, the NFB from my understanding, advocated against Accessible Pedestrian Signals. This technology was considered an insult to Blind people and our ability to safely cross streets.
Similarly, folks felt the same about audio description and our ability to consume visual content.

“We don’t need no special help”

Meanwhile, the only thing that’s so called special is the way we access the information that’s already there being used or consumed by those who are not Blind. You know, the normals!

I’m getting some real internal ableism vibes from this.

Plus, it feels selfish AF!

Kiana:
Just because you and I are on this side of being able to talk about it without breaking down or punching a wall or being in distress and deep depression doesn’t mean that somebody else isn’t coming straight off of that.

I know what it felt like learning how to cross the street in tears, holding my baby’s hand and she was three and I was blindfolded.
Learning how to use this cane.
I know what it felt like thinking, how am I going to braid her hair? What if she swallows a penny? How am I going to get help? How am I going even know she’s in distress, all this fear And worry.

TR:
Over the years of producing this podcast, that’s been the struggle for me. Admitting the challenge of blindness,
while espousing our abilities, independence and sending a positive message. Making people aware that blindness by itself isn’t limiting, rather it’s the restrictions and limitations established by society .
It’s the barriers society puts in our way that requires overcoming, not our blindness.

Kiana:
Imagine how powerful that is, when we help our community.

Somebody sat with me and told me it was gonna be okay, that it wasn’t gonna be easy, but it is possible. And once you start to organize your world in your mind, and restructure how you think about what success is, then anything is possible in having a functional, happy existence. One of independence and a purpose is possible.

TR:
Let’s be real, hearing that from someone who has been through it is so much more powerful than getting that same message from a non disabled person.

Kiana:
So to the people who encourage you to go out into the world, go for it if you want to.
That’s your thing.
But I feel purposeful in this field.

TR:
As someone producing content specifically for and about disability, some have tried to encourage me to move beyond disability and seek out opportunities to create audio for and about mainstream topics.
I could. But those who make these suggestions never asked me what I wanted. They assumed I was only doing this disability related stuff as a means to something larger, something better, something not disabled. But I don’t see non disabled or bigger as better. Especially when we think about impact.

We have power, even in small numbers

I’m reminded of Kiana and her friends starting what they call the Rescue Experience. They understand that meaningful impact doesn’t necessarily require grand gestures or large amounts of money.

Kiana:
Donating money to a woman who needs to buy coats for her children, or getting her hair done.
Or sending someone we know who’s overworked and tired to a hotel for the night with dinner, and a spa the next day.
People who just needed a little bit of help, who was doing the work, but just use a little bit of support.

TR:
Isn’t that all of us at some point in our life?

I know some want you to believe they did it all by themselves. Holding tight to the idea that their own success was fully based on their individual work. The same folks who won’t acknowledge that perhaps they had advantages that others do not. Access to well funded schools, technology and people.

When we realize we all need a bit of support, maybe we’ll be more inclined to extend that to others as wel.

— Music begins: A traditional sounding slow, smooth Reggae Riddim!

# Audio Described Carnival
TR:
Back to that idea of claiming our own space within existing environments.

When I think about Kiana’s desire to once again enjoy the Caribbean Carnival experience, I have to ask, why not create our own space?
Yes, we advocate for our inclusion in various spaces and places and that’s fine.
But right now, I’m thinking more like the bum rush and less like asking. When I say the bum rush, I’m not referring to the original term where
a crowd of people just rush the door and get into an otherwise restricted area.

— Pause

Well, maybe I am, just not in a violent way.

What happens when we as disabled people worked together to assertively take over sections of these spaces and make them work for us? Obviously, you can’t just go into an existing theater and start building ramps and taring down walls , but we could collectively find a space along the route of a Carnival and create an accessible environment for us. Sort of on that “yeh, we’re here, what up?”

Are there disabled brothers and sisters in the Caribbean who are already doing this? I’m not trying to be the Christopher Columbus and think I discovered something already there. If it doesn’t exist, is this of interest to those living in the Caribbean? I’m pretty sure others like Kiana would be interested in traveling to the islands and accessibly immersing themselves in the Carnival experience.

So let me ask you. Who would be up for an Accessible, audio described Carnival experience? I’m talking about a space within the space designed and made for us!

Picture it.

A designated accessible area along the Carnival route, packed with food and drink (refreshing rum punch) and water, you got to have your water….

— In a filtered voice: Bruh! you’re a man of a certain age now, don’t forget a nearby bathroom

True!
All with live audio description.

— In a filtered voice: Not the bathroom!

Are there any Caribbean describers in the Reid My Mind Radio Family? Seriously, who in the family would be down to experience Carnival with AD?

— Music ends.

Hit me up, ReidMyMindRadio at Gmail.com.

# Close

— Music begins: A bright, mid tempo groove.

TR:
When I thought about this Art of Adjustment season, specifically , giving more thought to aspects of the conversations I have with my guests, I didn’t realize where it could go.
There’s something about it that feels natural. Taking the time to sit with the thoughts and ideas feels really important and necessary.

In the episode featuring Kiana, she spoke about her praying for opportunity. She acknowledged that now she finds herself really busy because her prayers are being answered.
These self portrait episodes for me are a way to slow down. I’m appreciating the time, sitting with these conversations, letting them breathe a bit. It’s an opportunity to spark or reignite ideas and explore them and see where they lead.

Sharing these conversations makes me feel a little like my friend birdcaster.

— In the high pitch fluttering voice: “What up baby!”

There are multiple messages for whoever wants or needs it at a given time. If you too choose to share, that extends the reach of one conversation originally between to people.

Before I fly away, let me remind you to make sure you rock with Reid My Mind Radio wherever you get podcasts.
We have transcripts and more at ReidMyMind.com.
And no matter what season, winter spring summer or fall or if you’re like Babyface who only believes in two seasons;
you can find me by spelling the name the right way.
;
that’s R to the E I D!
— Sample: (“D! And that’s me in the place to be.” Slick Rick
” Slick Rick)
Like my last name!
— Reid My Mind Radio outro
Peace!

Hide the transcript

TR:
Hey, what’s up Y’all. Just a quick note that this episode contains real brief mentioning of depression and suicide. But it’s brief! Now onto the episode.

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

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

TR:
That’sKrystle Allen. You heard her episode last week, at least you should have. If not, please go check it out. This season in The Art of Adjustment, I’m following each episode featuring a guest with what I’m calling a continuous self-portrait. I’ll take parts of our conversation that connect with my own personal experience and discuss it here with you. It’s a way to move a bit beyond host and producer. I do it occasionally. But we’re family after all, and families share with one another. If you or your family member is adjusting to blindness or any disability for that matter. I know things feel confused, lots of uncertainty and a wide range of emotions going on at the same time. But that uncertainty starts to fade. And yes…

Krystle:
It’s okay. It’s gonna be okay.

TR:
Things start to become Krystle clear. I’m Thomas Reid. Welcome back to Reid My Mind Radio.

— Reid My Mind Radio Intro

TR:
I often ask guests to time travel back to their early days of adjustment and give their younger self some advice on adjusting to disability. It’s not a clever question, but it does allow for reflection. It’s specific to the individual but the advice often applies to others. For Krystle, who went inward and spent a lot of time and quiet thought. I’m sure she had the burning question. Will I be okay?

Here’s the setting from my personal experience with blindness. I just moved into a new home in a new state with a new baby, my six-year-old and my wife. My brother recently passed away and that left my mother alone in the house. Nothing felt “normal”. I realized today, I wasn’t grounded. No wonder it felt like I was having an out of body experience.

Krystle says she was quiet for a year. My blindness came as an adult. A year of silence I don’t think was ever an option for me.

Allow me to reflect.

TR talking to himself:
I’m waiting for my interviewee to arrive. We had an appointment.
Sound of Voice Over on iPhone
pm

— Sound of telephone ringing.

“Hello”
TR:
My guest was actually supposed to join me live in person. It’s all good though. She lives pretty close to the studio.

— Door creaking

TR in Conversation with Marlett:
How are you?

Marlett:
Good.

TR in Conversation with Marlett:
You wanna state your name for the people

Marlett:
Marlett Reid

TR in Conversation with Marlett:
you want to give an image description?

Marlett:
Oh, wow, I didn’t come prepared to describe myself. Dark skin, oval face full lips.

TR in Conversation with Marlett:
You know, I do a lot in the area of description and talking about this stuff. seems kind of odd that my wife would not have an image description. If somebody asked me, Hey, Thomas, what’s taxes. I could tell them

Marlett:
Not really.

TR in Conversation with Marlett:
I can talk about taxes.

— Noise

TR in Conversation with Marlett:
Hey! What was that? (Laughing)

Marlett:
The chair. The chair’s going down. That’s not me! (Defensively)

TR in Conversation with Marlett:
(Long loud boisterous laugh)

Marlett:
Oh God! (Annoyed)
TR in Conversation with Marlett:
Did it fall by itself? Because it sinks. It’s annoying, right?

Marlett:
Yeah.
TR in Conversation with Marlett:
So I invited you here today to chat a little bit. And I really just mean a little bit. (Laughing)

Marlett:
That’s fine.
TR in Conversation with Marlett:
So we’re gonna go back. I want to know if you remember after I returned home from the hospital, and I was laid up in the bed like that time. And to be honest with you, I don’t have a lot of memories. I want to know, what do you remember about those first? Let’s say the first month, which was February, it was right around this time. What do you recall about that?

Marlett:
I just remember being sad. I do remember saying to myself okay, I must find a way to fix this.

TR in Conversation with Marlett:
Fix what?

Marlett:
Find a way where we can get your site back.

TR in Conversation with Marlett:

How did that work out? (Laughing)

Marlett:
It didn’t workout.

Tr
I can joke about this kind of thing today. Marlette well, not so much. I won’t joke about blindness or any aspect of disability with just anyone though. My daughters and I can really find some of these things quite entertaining. But I know they aren’t ableist and I know they don’t see me as less than.

I know my wife doesn’t see me as less than it’s just not what tickles her Funny Bone. Any movie featuring a grown man screaming? Well, she finds that hysterical.

— Scene from “Blank Man” where he gets slapped and screams like a “Girl”.

Marlett:
I was worried about the future. It seemed like you were depressed, you weren’t motivated?

TR in Conversation with Marlett:
Was that based on anything that I was doing? Because I just got home and I was just like, I was just here , to cut my head open. (Laughs)

Marlett:
Yes, I know they cut your head open. (Reluctant giggle)

TR in Conversation with Marlett:
Give a brother some time!

Marlett:
I did give you time. but I knew that you can’t stay in that space.

TR in Conversation with Marlett:
Was there a timeframe? Like, did they tell you okay, “he shouldn’t stay in bed for more than whatever or he needs to get out and start head spinning by three days?” (A mocking voice)
What was your expectation in terms of the time?

Marlett:
Raven was young.

TR in Conversation with Marlett:
She was a baby.
Marlett:
right, she was a baby.

TR in Conversation with Marlett:
Months, like two or three months?

Marlett:
Right! So I wanted to make sure that she kind of got the same experience that Riana got, you know, with daddy daughter day, spending time with daddy. And so far. I felt like, if you stay there, that’s not going to happen. Like, I want you to get up.

TR in Conversation with Marlett:
I remember her hanging out with me. But go ahead.

Marlett:
yeah, of course. You always been a great dad, you’ve always been great. I cannot take that from you know, even when you weren’t. I always say when you weren’t like fully there. I needed my husband to get up.

TR
Here’s the thing, y’all. I don’t think I was so called down for that long. And it wasn’t necessarily my choice.

TR in Conversation with Marlett:
So from my recollection, I swear Marlett…

Marlett:
Your what?

TR in Conversation with Marlett:
Huh!

Marlett:
Your what?

TR in Conversation with Marlett:
Did I say that wrong?

–The couple laughs

TR in Conversation with Marlett:
I’m gonna have to replay that. I’m not even gonna take it out.

recollection. Did I not say that?

But from my that, I swear, it probably wasn’t two weeks, it was probably more than that. But I swear it felt like it

Marlett:
It definitely wasn’t a month. I didn’t give you a month. I remember in my head saying he’s gonna get out of this bed one way or the other.

TR
I wasn’t in the bed. I just wasn’t going out. I mean, I was going out to doctor’s appointments. But that’s it. Where was I supposed to go? In February, after eight days in the hospital as a newly blind person with no blindness skills. But I do understand Marlett’s point and concern. She was looking to get back to normal.

marlett:
If I was going somewhere and everybody would be like where’s your husband? Are you by yourself? Because if I asked you, and even that took a while. So you were just like, Nah, I don’t want to go. I don’t want to do that. This is important. Because prior to that surgery and you coming home on February 4, we didn’t do a lot of stuff.

TR in Conversation with Marlett:
No, of course not.

Marlett:
And I understand. But that’s an important part of this journey.

TR in Conversation with Marlett:
You think so?

Marlett:
For me, as to why you want to know why I didn’t give you that much time. Because we were going through it.
(TR Laughing)

Why is that funny?

TR in Conversation with Marlett:
Because!

You’re not saying like we were supposed to be doing something?

Marlett:
weren’t. We weren’t.

TR in Conversation with Marlett:
Because, I had the cancer going on. And everything and we were doing doctor’s visits.

Marlett:
Yeah, that’s about it. Yes.

TR in Conversation with Marlett:
And we had a new baby.

Marlett:
We had a new baby. And we were just, we were just here in the house.

TR in Conversation with Marlett:
Okay! And so that so you saying that played a factor in you? Okay. I never even thought that that would but Okay, that’s interesting. You did? Okay. I don’t.

Marlett:
Because remember, we used to do things you would always come up with things to do, because it really was you. And we would do a lot of things.

TR in Conversation with Marlett:
Ok, All right. Good context. Good context. That’s cool. I’ll accept that. I’ll accept that. So you’re saying that plus the fact that you were like, Yo, you just thought he gonna be depressed, which is probably natural. Yeah. For you to think that and for somebody to feel that.

Marlett:
Yeh, that was fine.

TR in Conversation with Marlett:
But you’re saying he ain’t gonna stay there. I’m not gonna give him to the end of February.
Marlett:
I don’t remember the timeframe, as well as you seem to, but I know in my head I was like I’m going to give him two weeks.

TR in Conversation with Marlett:
Okay. All right. So that’s probably why I have that timeframe. So this is probably right. I don’t think we went out but I think you started asking me stuff, bugging me about no disrespect, about going out. What’s the time that you remember going out?

Unknown
)With some delay) I don’t remember.

TR in Conversation with Marlett:
Well, let me go back. Think about that. Put that in the back burner. And I want to know, what were you hoping to accomplish by telling me that I need to get up and get out?

Unknown
We’re a couple. So if somebody asked me, Oh, can you come over and let’s do this or do that, and they had their spouse, I wanted mine there.

TR in Conversation with Marlett:
So what were you hoping to accomplish?

Unknown
I wanted you to get out of where you were, I didn’t know where that would lead.

TR in Conversation with Marlett:
You’re talking about mentally…

Marlett:
I would ask you, are you okay? How do you feel? And you would say that you were fine. You never really told me? You never really talked about it?

TR in Conversation with Marlett:
What?

Marlett:
I’m afraid Well, you know, is he thinking suicide. And you would say, I’m fine. In my mind, I’m thinking, Okay, fine. We have to figure all of this out. If he’s upstairs, we can’t figure this out.

TR in Conversation with Marlett:
Hmm! So this was before the Karen and Shelly.

TR
shout out to both my rehab counselor, and my orientation and mobility instructor. I know across the country in different states, including Pennsylvania, there are all sorts of reasons that delay newly blind people from getting the training they need, yet we expect them to get back out into society without the necessary skills. It took a couple of months for me, and that was mainly due to Marlett’s advocacy. These skills were a crucial part in helping me build back my confidence.

TR in Conversation with Marlett:
What do you remember about the first time going out?

Marlett:
? The stairs.

TR in Conversation with Marlett:
The stairs?

Marlett:
Yeah, everybody would stair.

TR in Conversation with Marlett:
Oh, stairs.

TR
(Chuckles)What a great example of the communication challenges couples face after blindness. Chances are when marlett said stairs, she opened her eyes wide or gestured in some way. If I could see her, I would immediately know that she meant stairs as in watching our every move, not the stairs leading to a new level. Communication is key y’all!

Abbot & Costello
Well, then who’s playing first?
Yeah.
I mean the fellas name on first base.
Who?
The fella playing first base for St. Louis.
Who.
The guy on first base.
Who was on first?
What are you asking me for?

TR in Conversation with Marlett

Where did we go?

Marlettt:
I don’t remember, Sorry.

TR in Conversation with Marlett:
Nah, ok, okay. I think I do.

Marlett:
Where?

TR
I’m Pretty sure it was Easter. So that means it was actually either the end of March or April, we went to my sister in law’s house. The only thing I recall about that day was the husband of a new neighbor couple that they befriended. We just moved out here. So I didn’t know this guy. He was acting like he knew me. He kept going on about how I need to get out the house saying stuff like we hear Your friends are here.

TR in Conversation with Marlett:
And I didn’t even think about it until I’m thinking about this now. Was that like the purpose of that? For me to get out the house?

Marlett:
I don’t even think that. I think that came out of his own like…

TR in Conversation with Marlett:
so he just assumed this?

Marlett:
I’m guessing so!

TR in Conversation with Marlett:
I should have punched him in his face.

Marlett:
I don’t know why!

TR in Conversation with Marlett:
Cause I didn’t know him? And he was talking mad junk. like, Yo, you know, we’re friends, this is what we got to do and it’s like, yo Bee, you don’t know meSon. I just met you. Who are you?

TR
Okay, that was a little much. That’s a lesson in getting caught up in your own conspiracy theory. I mean, who does that? Knowing what I know today, I think this kind gentleman probably meant well, he was trying to be positive. I’m sure he wasn’t comfortable around someone newly blind. That was probably hard for him. I’m sure he didn’t know what to talk about. He was probably just trying to let me know he was on my side.

(Brief pause)

Ahhhh!

Two things can be true at the same time.

TR in Conversation with Marlett:
I don’t even know you, son.

TR
We weren’t friends. But then again, if we’re gonna keep it real, Crystal reminded me that some friends turn out to not really be friends when disability enters the picture.

Krystle
And I lost a lot of friends at 16 because my friends thought that I was strange. Now that I was losing my eyesight. Because I had a cane. They felt like Krystle you can see you don’t need that cane with you. And I’m like, I do need the cane because I can’t see everything anymore. We were going into a club one time y’all need to take that why you got to take that with you. I’m like because you not gonna hold on to me all night, are you? You know, so some friends. They kind of grew out of our friend season.

TR
Fax.
By the way, I have some thoughts about an episode about the impact of disability on relationships. If you’re interested in sharing some of your stories, hit me up at ReidMyMindRadio@gmail.com.

Marlett:

Thomas in Conversation with Marlett
I’m not interrogating you!

Marlett:
I answered it by saying that this was important because we used to do things together. Go out and this was the plan when we came up here. And we had a hiccup in that plan.

TR
hiccups are annoying, but they pass. Hiccups can be distracting. That’s both to the person experiencing them. And those in earshot.

I watched several newly blind people over the years fall victim to distractions, I worry about those new to blindness today, we have a lot more access in comparison to 20 years ago. Of course, that’s great. But it can also be a real distraction for some.

TR in Conversation with Marlett:
I think about this. If I had access to the stuff that I have access to now, movies with AD, the books, the…

Marlett:
The books, You were going through …
TR in Conversation with Marlett:
I wasn’t going through that many books because it was just those CDs…

Marlett:
Right, and they were just coming in the mail…

TR in Conversation with Marlett:
No, no, no, no, no, no, no, there wasn’t. I had like two, but I didn’t have the NLS yet.

Marlett:
Okay,

TR in Conversation with Marlett:
I didn’t have that yet. What I’m saying is that if I had Netflix and stuff like that,

Marlett:
yeah, two weeks!

TR in Conversation with Marlett:
I would be still in that bed Bee. (Laughing)

Marlett:
We would argue, but I would have said, two weeks.

TR in Conversation with Marlett:
You would have had to take my phone. (Laughs)

TR
I’m not saying that access to these things isn’t valuable. Heck, no. I think it’s more about how we use that access. Temporary healthy escapes are fine, but please, don’t stay there. During my conversation with crystal, I was reminded that what can appear as a distraction may actually contribute to a person moving forward.

Krystle
I think I was silent for almost a year. All I would do is go to sleep. Listen to music. Oh my god tweets southern hummingbird album. That was it. For me. That was my medicine. I used to listen to that all the time in the house. Crystal’s

TR
We know disability requires an adjustment from the individual and their families. It got me wondering, did Marlett have any music that helped her during our early days,

Marlett:
it was a song that I listened to when I was younger. When I would watch you I remember you know, Marlett you did that. When I was going through something, I would just lay on the, like it was a futon or couch or couch or whatever it was called. And I played this one song all the time. The lyrics were written by Charlie Chaplin, Geoffrey Parson, and John Turner. And the person who sang the song was Diana Ross.
— Music starts softly in the background
And the songs name is smile.
(As Marlett recites the lyrics the song’s lyrics are sung in the back ground.)
There’s a section and she says,
Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That’s the time you must keep on trying
Smile
What’s see use of crying
You’ll find that life is still worthwhile
If you just Smile

And I replay that over and over and over. I know that the song was about strength that we had an ourselves it was also for me to go into that time. So when I would come upstairs, and I was like, he has to smile again.
He has to get up.

TR
I would have never guessed Diana Ross. If anything, I thought it was gonna be Mary J Blige. Marlett, she’s more of a movie person than a music person. Sci-Fi all day.

All forms of art can be encouraging. What’s your thing?
For me, it’s definitely music. Both lyrics and instrumentation. I found myself repeating Chuck D’s line from “Welcome to the Terror dome”. I got so much trouble on my mind. Refuse to lose.
That song just gets me hype for anything. But there were two albums and specific songs that really resonated with me. Kanye West “Jesus Walks that was that old Kanye!
TR in Conversation with Marlett:
And I’m not a religious person, you know? But the devil is trying to bring me down. Jesus Walks. Like something’s trying to bring you down. The devil’s trying to bring you … you know that was my mother’s thing, anything that’s negative is the devil.

Marlett:
When things are going good, the devil comes in and he tries to pull you down.

TR in Conversation with Marlett:
the other one was when you got me because you thought I would like it, the John Legend CD. You were like, you’re gonna like this. This is your style. And I was like you don’t know my style. (Laughing) And I’m like ah damn, she knows my style.

The couple laughs.

When it’s cold outside there’s no need to worry because I’m so warm inside. You give me peace when the storm’s outside… yeh, that joint. That joint right there! Woo!

— Swoosh effect
TR:
Hey Y’all, not sure if you noticed, but in these last two episodes, there’s been a bunch of references to music or dancing which sort of inherently implies music.
I created a public playlist on Spotify with songs that were inspired by or actually mentioned in these two episodes.
I’ll link you there on this episodes blog post. If you’re on Spotify, search for Dancing with Reid My Mind Radio.
Back to the episode
— Reverse swoosh effect

TR
Art really does play a significant role in our adjustment. multiple roles in fact. Distraction, escape, healing, encouraging, motivating, both as a consumer and a creator.

TR in Conversation with Marlett:
Thinking about it now, you know a lot more now then you did then about well this experience but in general, I would say mental health. Right? How do you think you would handle that today? What do you think your reaction would be? Would you still have a two week timeframe?

Marlett:
Oh yeah!

TR in Conversation with Marlett:
You would? (Laughing)

Marlett :
Yeh, hmm hmm, yeh!

TR in Conversation with Marlett:
So I’m correct in saying I never had a chance to get more than…

Marlett:
No you didn’t. I definitely would have had two weeks.

TR in Conversation with Marlett:
You think two weeks is enough?
Marlett:
I definitely would have two weeks. And not not to get over it. But to get up. So if you think …

TR in Conversation with Marlett:
I was up! I wasn’t laying in the bed.

Marlett:
I needed you present. You were not present.

TR in Conversation with Marlett:
Ok, I may have not been present.

Marlett:
I needed you present. I needed to. I’m not saying that. Two weeks because you would sit a lot in that chair. You had a chair that you were sitting in that chair and I…

TR in Conversation with Marlett:
I sat on the couch.
on the couch.
Marlett:
It was a chair over here and maybe the couch downstairs, but you sat.

TR in Conversation with Marlett:
No the chair wasn’t up here that you talked about in the room. That wasn’t up here at that time.

Marlett:
I had a chair on my side and you had a chair…

TR in Conversation with Marlett:
Oh wait, wait, wait, way you write you write you write? I didn’t sit in that chair.

Marlett:
You sat in the chair. You sat in that chair, sometimes it would be all the way back. And I was like Oh, he’s got to get up outta there.

TR in Conversation with Marlett:
Oh, maybe I did. Damn, now I don’t remember.
I remember being downstairs.

Marlett:
You weren’t really downstairs too much.

TR in Conversation with Marlett:
I was watching Comedy Central.

Marlett:
Okay!

TR in Conversation with Marlett:
That wasn’t up here oh, maybe I had it up here too. Oh, you might be right.
I don’t know if I’m going to use any of this. (Giggles)

Marlett:
Huh!

TR
The small details that we think are so important at a given time, apparently fade away. I guess they don’t really matter. What I get now is that my wife just wanted her husband. How can I be upset with that?
Two weeks. That’s it y’all!

— Music begins A mellow romantic groove.?
TR in Conversation with Marlett:
Yeah. I was a little angry about the two weeks. But I feel like because I was thinking that two weeks was to go and get out. And I feel like you’re right. It was just to get up. And then to get moving. Damn, this might make me look bad.
look bad. But it is what it is. It’s the real truth.

Marlett:
Did you think you were perfect?

TR in Conversation with Marlett:
No.

Marlett:
Is that your ego?

TR in Conversation with Marlett:
No.

Marlett:
So what is it then? For you to think that you deserved more time than what you got? Why? Why would you think that?

TR in Conversation with Marlett:
Because it was hard.

TR
It was hard because I wasn’t ready? Like Krystle said in the beginning.

Krystle
It’s okay to feel what I’m feeling.
TR in Conversation with Marlett:
I guess you get props for this then.
Well, thank you. (Kiss)

Marlett:
I think that was my job to do as your wife.

TR in Conversation with Marlett:
That’s cool. I could still say thank you.
TR
Shout out to eyes like mine, Krystle Allen for inspiring this episode.

Shout out to the Queen of the Reid Compound, My wife of just about 30 years y’all Marlett. I appreciate you sharing your time. It’s tax season. So she extra busy right now. But also sharing your truth.

Since we’re talking about sharing, why not share this podcast with your friends and family? There’s lots of folks out there adjusting to disability individuals and their families. And yes, of course, there’s some real challenges. I just think it’s easier when you don’t go it alone.

That’s why we’re here.

Now here’s what you can say to your friends and family.

Hey, fill in the blank. I need to tell you about this dope podcast I just know you’re going to dig. It’s called Reid My Mind Radio. You can find it wherever you get podcasts. They have transcripts and more at ReidMyMind.com.
Check this. You have to know how to spell it the right way. I mean, it’s really the only way.

TR in Conversation with Marlett:
You want to do the sign off?

Marlett:
Sure.

R to the E I D!

D, D,D! (Giggles)

TR in Conversation with Marlett:
You don’t do that part!

The couple laughs!

Marlett:
Like my last name.

— Reid My Mind Radio Outro

Marlett:
peace

Hide the transcript

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”

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