Reid My Mind

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

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:

What’s up Reid My Mind Radio Family?

Yo soy Tomaso, Thomas Reid, host and producer of this podcast – Reid My Mind Radio.

Welcome to those of you who are new here.

This podcast introduces you to compelling people impacted by all degrees of blindness and disability.

every now and then, like today’s episode, I share some of my own thoughts and experiences as a man adjusting to becoming Blind as an adult. And yes, I say adjusting, I don’t think I’ll ever really use the ed suffix on adjust. That’s not to mean there’s no progress. It’s just a continuous journey. Once you get to the understanding that it’s not one to be feared or even think negatively about, it gets better. But It’s like life, there’s always going to be change, and vision loss or any disability is now a part of that.

If that’s part of your reality, a family member or friend or maybe people you work with, well you’re definitely in the right place. If you yourself are going through some other sort of life change or you just like podcasts. There’s something here for you too, if you are opened to that.

Everyone is truly welcomed here with the exception of those with real hate in your heart. Energy works in mysterious ways and I don’t want that negativity being passed along to me or any of the family.

So let’s get this poppin!

Audio: Reid My Mind Radio theme

# Intro

Today I’m sharing some thoughts about this podcast. These are not stream of consciousness. No way I wouldn’t do that to you. My mind can be a scary place when I’m trying to figure things out.

Audio: Sound of chaos!

Chances are as I navigate these thoughts they will prove to be applicable to more than this podcast and hopefully useful to others. That’s exactly how I feel about every episode. I focus on those adjusting to blindness , but lots of others can relate and enjoy.

Audio: Typing sounds….

Since I began this podcast and maybe even prior, I have been very specific about saying I don’t see myself as a journalist. I’m an advocate, straight up! If you listen to the podcast, you know there’s a certain message about blindness and disability. My opinion or feelings in most cases are evident. The overall message is one of empowerment. I’m not impartial.

Audio: Possibly use old episodes here

As if journalism is really impartial.

There are times though when I need to make all sorts of journalistic decisions. It could be the way I edit or the specific questions I ask, even the overall feel of the show, the sound design. It’s intentional. My approach is different from your standard so called impartial reporter.

I’m connected to most people who are guests on the podcast. Usually, the connection isn’t personal. Rather it’s through blindness and disability Sometimes it could be race or we have something else in common.

I feel a responsibility to both my guests and listeners.

I want my guests to feel what I hear when they tell me their story. I want them to know I respect them and their experience.

I want listeners to find the multiple ways they relate to my guests. Yes, there’s the disability experience, but maybe they share a similar motivation, desire or goal.

That’s what I want, it doesn’t mean I can always make it happen.

every listener brings their own past, prejudices, preconceptions and experiences to the podcast.

That makes sense, it’s like anything else. Two people hear the same song , see the same film or read the same book and have drastically different interpretations.

Some people see a reflection of their own lives and goals while others never see themselves in a podcast where blindness and disability is so prevalent.

It’s probably not one or the other. I think there are some who have a bit of both. Either way, I can’t control that.

Which leads me to this statement…

“You should always remember, there are people worse off than you.”

Audio:

“No matter how you’re sad and blue, there’s always someone who has it worse than you”, Shaggy

YouTube Videos
* ” If you’re having a bad day, just consider the day ….”

* “Bare in mind, there’s always someone worse off than you”

Song sung by Little Richard at a MS Telathon.

“… As I look around, so many people who cannot walk, not talk nor see, I thank God for the health and strength that I have, for there’s someone worse off than I am.”
TR:

First things first…

I’m pretty sure I said this same thing at some point in my life. it’s a common statement and an accepted way of thinking.

But, what does it really mean?

How can you compare someone’s life and happiness without all the information??

Is this really pity?

As a content producer, I cringe when I hear it now especially in relation to my podcast.

There’s never been a guest on Reid My Mind Radio that’s in need of someone’s pity.

I then question the choices made for that episode

Did I present this person in a way that says they should be pitied?

I don’t think I focus on the illness side of things. I do include or mention mainly because;
Others with the same diagnosis can relate.
It can also serve as a way to normalize illness and disability. They are a part of life and not a mysterious thing that happened to one person.

AudioFx: Ambiance head in skull
Am I creating inspiration porn?

Most of you are probably familiar with that term. It’s the
idea of presenting people with disabilities as inspirational solely or in part on the basis of their disability.

This idea that this person’s story which often you don’t even get, well it should inspire you or just give you that warm fuzzy feeling reminding you that most of the world is so considerate.

Watch how the rest of the high school students cheered on as the coach let the intellectually disabled kid in the game for the last 20 seconds.

News Report Audio:
Crowd cheering.Coach: He comes to ppractice everyday, he shoots with them, he cheers them on…”

TR:

Or…

News Reports:
Reporter 1: A very special student indeed…
Reporter 2: All thanks to the compassion of one of his classmates….
Reporter 3: But the emotion of this night involved a student who cannot take the field, but is universally admired for his determination…
Reporter 4: A special needs student with Williams Syndrome. He’s a fixture on the sidelineduring football games always rooting on the team. But hi fives are one thing senior prom is something different.
Student: She could have picked anybody to go to prom with.. her.

TR:

I just don’t want to put that sort of thing out in the world.

Does it sound like I’m making a big deal out of this? Maybe because I’ve seen inspiration porn live and in full effect. In fact, I unknowingly was recruited to be a part of the performance.

Audio: Dream Harp

Many years ago when I was still very new to blindness, I was asked by a local organization serving those with vision loss, to give a access technology demo during an event.

I took to the technology pretty quickly and they thought I could be helpful sharing that information.

There was no money involved of course, but they’d provide my transportation and I think there was going to be a lunch. Whatever, I was down to help the cause for sure.

I was setup y’all!

Arriving at the center, I was shown to the main room where the event was taking place.

There were three or four individuals with vision loss seated up in the front of the room. The rest of the group was seated around a large conference table.

I was shown to a table in the front of the room off to the side where I setup my laptop.

Shortly after, the host of the event, the director of the center, welcomed the guests and kicked off the agenda.

Each of the men and women seated in the front of the room were asked to share the story of their vision loss.

Here’s how I recall that event;
Audio: Trap Beat!

each individual told their story while the event host accentuated the misery.

Storyteller:
” Before I went blind, I used to take long walks in the park
Now, I can’t see anything, my whole world is dark!”

Host: “Pitch black, the world is dark, too dangerous for you in the park.

TR:

Laughs! I said, that’s how I recall it today, but that’s not exactly what happened. But I do recall the questions and comments from the host were obviously selected to highlight the negative.
She was playing to the fear of the guests seated around the conference table.
these were potential donors.
All who probably already had beliefs about blindness;
“it’s probably the worst thing that could happen to you and if we don’t help these poor people they won’t be able to do anything. They can’t do for themselves.”

I was setup to be a part of a dog and pony show to help fundraise for the organization.

the fact that it was a fundraiser isn’t the problem for me. I would have still agreed to attend.
However, I would not have participated if I was aware of the approach being used to raise that money.

My so called presentation was probably less than 5 minutes. The host asked some specific questions and then made it seem like it was my technology background that enabled me to grasp the tools and less about the technology as a tool for independence.

Then they pulled out the glasses.

Audio: Glasses clinking and sliding down a bar!

No, not drinks. I don’t even think that would have helped. . No, it was the blindness simulation glasses. These are created to help sighted people understand what it supposedly looks like when you have certain diseases like, macular degeneration, RP, glaucoma and others.

At first thought, you may think ok, that’s probably helpful. It helps people understand and therefore empathize? Sympathize?

Well, in this particular case, while the dog and ponies sat up in front and this one off to the side a bit, the sighted donors were led into their temporary world of vision loss.

Reluctantly at first, one after the other each slowly began trying on the glasses.

“Oh my”…. “wow”
“where did you go Jeanie?”

And then the real fun began as they exchanged glasses with one another. Laughing as they realized how little they could actually see. Unable to find things they placed on the conference table. The host joking as she moved their cups of coffee.

Meanwhile, the dogs and ponies sat up front. While the jackasses continued with their disability experiment.

Empathy, I didn’t see that. But a check was written.

I don’t remember how the event finally ended, but I do know that was it for me. I checked out. There may have been some additional conversation but I doubt I had much to say to anyone after bearing witness to that display of ableism. I vowed to never be a part of anything even remotely like that.

I could easily imagine each of the donors around the table going home fulfilled and thinking “I should really count my blessings, because there’s always someone worse off in the world.”

As far as I could tell, I was alone in my review of the event. I believe some of the others continued to participate. I pretty much severed ties and ended up having a sort of reputation, so I was never asked again. perfect!

All of this leads to my final question.

How are we telling our own stories?

I highly doubt any of the people sharing their story were given instructions on how to tell it. Chances are, the director simply knew these individuals would supply what she wanted for the audience.

Some may say the ends justify the means. The center received the money and therefore can do good things for the clientele. I don’t agree. I believe several of those in the room were employers in positions to someday hire a blind person. I doubt they would. But that’s a subject for another day.

What thought do you put into telling your own story?

In most instances, we’re doing the telling of our own story. We don’t have a videographer, podcaster, journalist.

We’re probably not standing in front of an audience equipped with a PowerPoint presentation. We’re simply talking to people. Most often one on one.

Crazy thing, I tell other people’s stories but not my own. I can do it in a presentation, no doubt, but one on one not so much. I feel strange.

Audio: Cameo Strange! moves into “Children’s Story” Instrumental Slick Rick

I should tell my story as if I’m giving a presentation. it’s mine, it’s a good one. It’s worth telling. It can be helpful.

And it’s the only one I have.

And in the event someone hears it and their thought is
“Wow, I’m so grateful because I’m not like Thomas!”

My response, Bruh, you should be so lucky!

I’m not flexing’ or being conceited or anything like that. But this is my life why shouldn’t I be proud of what I do, when I do it and how I do it.

the same decisions I make for my guests and you all the listener, shouldn’t I put that much time and thought into my own story?

If you say yes, then maybe you too should do the same.

I told you this wouldn’t just be related to podcasting. In fact, it’s not just related to disability.

Or is it?

“Here we go!” Slick Rick, Childrens Story

You can find Reid My Mind Radio wherever you get podcasts. And if for some reason that isn’t the case, like teddy said, come on over to my place… ReidMyMind.com. That’s R to the E I D

Slick Rick “D, and that’s me in the place to be”

Like my last name.

Audio: Reid My Mind Radio outro

Peace

Hide the transcript

TR:

What’s up RMMRadio Family…

If you’ve been here before, welcome back! If you’re a new jack, come on in…
take your shoes off if you like, it’s
not mandatory in my house, but I do want you to be comfortable.

Let’s get it! All aboard!
All Aboard!

[Audio: Ship Horn]
[Reid My Mind Theme]

TR:
In this second of our three part series, we’ll meet another winner of the Holman Prize.

The prize is named in honor of James Holman.
Known as the Blind Traveler, Holman completed a series of solo journeys taking him to all inhabited continents.

Sponsored by the San Francisco Lighthouse $25,000 is given to each of the winners who are all legally blind and in their own way exhibit the adventurous spirit and attitude of James Holman

Ahmet Ustunel Our featured Holman Prize winner today like James Holman, is quite comfortable on the water.

I spoke to him via Facebook Audio while he was at home in San Francisco.

Ahmet:
I am originally from Turkey. I have been in the US for about 11 years now.
In my free time I like water sports. I like swimming, kayaking, fishing, sailing.

I’m totally blind since the age of two and a half or three due to Retinoblastoma.

[TR in conversation with Ahmet:]

I’m also a Retinoblastoma survivor Sir.

Ahmet:
Man, yeh, wow!

TR:

Retinoblastoma, is a rare childhood eye cancer that usually affects children before the age of years old.
By rare we’re talking about seven thousand children a year.

In the US and other developed nations the survivor rate is
around 90 percent with significant children losing sight.
In under developed nations, the rates are reversed and children’s lives are lost.

One common sign possibly indicating Retinoblastoma is a
white reflection in a child’s eye resembling that of a cat’s eye reflecting light.

Early diagnosis and treatment are key to saving both lives and sight.

By the time Ahmet’s cancer was detected, doctors in Turkey
were out of options to help.

Ahmet:

One of my relatives was in Germany working at a children’s hospital as a janitor so my Gran Ma took me there and they treated me there with radiation an enucleation.

TR:

Enucleation or the surgical removal of Both his eyes, Ahmet returned home to Turkey now as a blind child.

Ahmet:
I was lucky in terms of having really supportive people in my family. I grew up in a really big family. Everybody had a different approach in terms of blindness.

I was the only blind person in the family and even in the town I guess. I didn’t know any other blind person.

[TR in conversation with Ahmet]

Wow! How big of a town are you talking about?

Ahmet:
Maybe like ten fifteen thousand people.
Then I moved to Istanbul which is like fifteen sixteen million people and that actually changed my life.

TR:

Ahmet was aware of the contrasting dynamics in his family as it pertained to his blindness. Some were over protective while others wanted to help him do the things other little boys were doing.

Ahmet:
Ride a bike, tie hooks on a fishing line… avoid Sting Rays when you are swimming.

TR:

These early lessons in the ability to make something accessible played a role in his education and future.

After not being accepted in a mainstream school , Ahmet watched as his peers went to school at around 6 years old.

Moving to Istanbul his parents tried to enroll him in the only school for blind children. With a waiting list Ahmet wouldn’t begin until he was 8 years old.

Attending school during the week and returning home on weekends, Ahmet credits this school with teaching him valuable life skills.
After 5th grade he would attend a mainstream school.

Ahmet:
They send you back to mainstream school with no support. So you go back to school with no books and no teachers for the blind.

I was the first blind student in the school. I had to prove myself as a blind person.

TR:

At an early age, Ahmet took his education and future into his own hands.

Ahmet:
I was walking around with my Walkman and asking everybody you know, can you read me a page or two.

[TR in conversation with Ahmet]

So you were basically learning to advocate for yourself at that young age?

Ahmet:

Oh yeah I mean absolutely I mean there was nobody to advocate for me.
I could choose to sit around and do nothing you know get a C and pass, but if I really do well then people and teachers and you know the principal will understand that I can do stuff and they will let me stay. And if I cannot do it
I will just withdrawal myself.

TR:
Ahmet when on to not only prove himself to the administration but gain the confidence in his own abilities.

He studied Psychology in college where he met his wife, a US exchange student.

But his early life exposed him to more than academics

Ahmet:

When I was in high school my school campus was right on the water, you can literally jump into the water from the campus.

[TR in conversation with Ahmet]

So is that where the kayaking came in, from high school.

Ahmet:
No actually I did a lot of you know water related activities since my childhood as I grew up by Black Sea.

When I was in college I use to go rowing and stuff, but I haven’t started kayaking until I came here.

TR:
A Kayak is a very narrow boat like vessel. You steer and move the kayak with a paddle that has a blade on each end. They average about 25 to 35 inches wide and 12 to 19 feet in length.

Ahmet:

So let’s say you have a kayak nineteen foot long and twenty eight inch wide. You can go really fast but it will be a little tippy.

If it is twelve feet long and thirty five inches wide it will be really stable but you will go half as fast as the nineteen foot one.

It’s made of either corrugated plastic or fiber glass, there are some inflatable models.
So you sit in it. And you’re like really close to the water if you put
your hand your right there the water is right there. So you’re like maybe four inches above the water.

And you have a spray skirt which covers the kayak. So if you have a splash water doesn’t get in and if you flip over you are upside down but know water gets in.
So you have to pull the skirt off the kayak and get out of the kayak and flip it over and get back in. Or you can do the special row it’s called Eskimo row. Without pulling the skirt off you can flip the kayak back and keep paddling.

If you go paddling in cold water like San Francisco the water temperature goes below fifty degrees most of the time. So you don’t want to stay in that water more than 15 minutes. If you stay more than 15 minutes they say Hypothermia kicks in.

TR:

So what does Kayaking have to do with the Holman Prize?

[Audio from Ahmet’s Ambition]

You’re listening to Ahmet’s Holman Prize Ambition video where he explains what he would do with the 25 grand.

[Ahmet in Video……]

I have been kayaking for about 10 years and I always wanted to be able to paddle independently. If I win the Holman Prize I will equip my kayak with high and low tech devices that will enable me to navigate the kayak by myself.

TR:
His mission…

[Ahmet in video…]
My dream is to be the first blind person to paddle from Europe to Asia by crossing the Bosporus Straits.

TR:
You heard him correctly…
[Audio: Tape rewinding ]

[Ahmet in video…]
My dream is to be the first blind person to paddle from Europe to Asia by crossing the Bosporus Straits.

TR:
Exactly what is required for someone to non visually, independently navigate their way through the Bosporus Straits from Europe to Asia?

Let’s start with the Kayak

Ahmet:
The kayak I’m going to use has kind of like fins going down from the bottom of the kayak kind of like penguin feet. And so you can pedal with your feet if you want or you can just do a classical paddle strokes.

I want to keep my hands free because I’m going to use whole bunch of different technologies.

TR:

No surprise here the technology includes an iPhone.
Ahmet:

I’m going to use a G.P.S. app – Ariadni G.P.S.

You can mark way points and it will let you know when you get close to that way point.

It also has a compass with degrees and tell you how far you are from your way points. And then I have a talking audible compass. Similar thing it will tell you degrees and you will set you course before you start and it will tell you if you are off course.

[TR in conversation with Ahmet]
and you will South your course before you start and it will tell you the field

Is that a separate device or is that an app?

Ahmet:

It’s a separate devise.

I will also have parking sensors or security cameras sensors.

[TR in conversation with Ahmet]
Probably the same thing they use when the cars park themselves… right?

Ahmet:

Right, right right! You know when you’re backing out so if you are about to hit something it beeps.

I have a depth whisperer.

[TR in conversation with Ahmet]

D E P T H?.

Ahmet:
Yes.

[TR in conversation with Ahmet]

Ok at first I thought you said death (laughs) I was like I don’t like that one!

Ahmet:
Laughs… I hope not!

It tell you if there’s shallow water underneath the kayak. If you are about to hit a rock or something .

TR:

Ahmet does have to prepare for all scenarios.

There’s redundancy in his technology so if one device fails another can provide the same or just as useful information.

Not all the technology is off the shelf. While searching for the best methods for non-visually navigating his way through the water Ahmet
came across Marty Stone.

Marty is an AT&T I.T. Project Manager by day and after hours…

Marty:

I’m just one of those people that like to tinker with things.

TR:
Marty created a device that simply put:

Marty:
It was developed to allow blind people to get a kayak and race it in a straight line and then turn around and come back.

TR:

Reading about this device, Ahmet reached out to Marty who decided to expand on the original design.

Marty:
Now we’re working on something that not only includes a compass but gyroscopes, accelerometers, and three different axis.

So you get a lot better information as far as movement and heading. We’ve got a G.P.S. module that’s it’s married to along with Bluetooth. That’s going to be interfaced with a device Ahmet will be able to wear on his life vest that will have some buttons that either he can program in some coordinates or commands to the system that he’ll just wear a headset and it’ll talk to him.
It’ll tell him that in order to get from where he is to his next way point he needs to row in a certain heading direction. And if he gets off course the system will tell him to paddle more on the left or paddle more on the right. And when he gets to a way point it will let him know and then he needs to change his heading to another course direction and then it’ll tell him that.

TR:
With both equipment and technology accounted for, Ahmet needs a few more things to be fully prepared to reach his goal; first a plan..

Ahmet:
Istanbul is a city on both continents. And we have this Bosporus Strait that separates the city into two different parts. And the area I’m going to cross is about three, three and a half miles which is not a big physical challenge, but it has heavy traffic.

A lot of ships like tankers, containers, fishing boats, tourist boats, sailing boats you know all kinds of stuff.

These tankers are the size of multiple football fields. A small kayak would probably go unnoticed anywhere near such a large vessel. And getting out of the way even if you could see it would be virtually impossible.

Ahmet:
I don’t want to take my chance with those guys!

TR:
The Bosporus being such a very narrow waterway. Authorities closely control the traffic flow in each direction.

Ahmet:

I will listen to the traffic channel. Usually they have half an hour or forty-five minute break in between and I will do my crossing during that time.

[TR in conversation with Ahmet]
Do you have to schedule this?

Ahmet:

Well, I talked to the Coast Guard in Turkey and they .. first they didn’t believe that I could do it and I showed my videos to them and they said ok do whatever, we don’t take any responsibility.
(Ahmet and TR Laugh)

There will be a really fast boat watching me from the shore. If something goes wrong they will come and pick me up in like few minutes.

I’m not worried about the physical challenge – I can paddle you know three miles right now, no big deal. Being an expert using the technology if the key because I don’t want to have hesitation right in the middle of the shipping channel you know. That could be fatal.

[TR in conversation with Ahmet]

Why are you doing this man?

Ahmet:

I always loved the water, it’s my happy place. It’s the place I feel good about myself I feel free. I grew up in a fishing boat when I was a kid. My father was a fisherman. In the fishing boats I used to ask my Dad, you know can I steer the boat. he said yeh, you know, it’s water there’s nothing around you, it’s like miles and miles of open water. I used to take the steering wheel and just feel like I was the captain of the boat. And I was imagining like how can do something like this as a blind person as a blind kid. I always wanted to do something water related but my option were very limited in college.
If I grew up in the US I would have probably do something like marine biology.

I love what I am doing right now, I’m teaching special ed. It was always somewhere in my mind to do something water related and being able to do it independently. I have been thinking about it for a long time and I thought you know, it’s doable if I have the financial support I can do it.

TR:
I believe him. And I will admit it, partially because he is a fellow Retinoblastoma Survivor but mainly because he began as a child.
Think about the early lessons from his family helping him adapt all the different activities so he could participate…

[Audio in flashback Ahmet]

Ride a bike… tie hooks on a fishing line… avoid Sting Rays when you are swimming.

TR:
Then becoming his own advocate at such a young age and showing such determination to get an education.

I imagine these are some of the qualities seen by the Holman Prize judges who awarded Ahmet the 25 thousand dollars to complete his objective.

Ahmet:

You know, I’m not saving the world or I’m not creating job opportunities or changing the lives of blind people , but I think I’m doing something cool!

At least it might encourage younger kids to try new things. I see that my students, high school kids, they get discouraged in terms of finding alternative ways… I think it will help.

Everything could be adapted. Everything could be more accessible, that’s what I want to show. I don’t want it to be a success story of one person … he’s blind but he did that, he did this. It doesn’t mean anything you know one person did this.

[TR in conversation with Ahmet]

It’s cool, you focus on kids, you’re a teacher so that’s what you do, but for anyone, you’re pursuing your passion and that’s something that we forget in life. To be able to say you’re going to go and pursue your passion and have a dream and do it that is a universal thing that goes way beyond any sort of disability. There are people who are perfectly sighted, physical abled who are not pursuing their passion and we can all learn from that.

Ahmet:
Absolutely, yeh, I mean you know, it’s not a blind or sighted thing. It’s just I think being adventurous and take a risk take a chance.

TR:

That’s probably the final ingredient necessary to complete this mission. courage!

As a young boy on the fishing boat with his Dad, Ahmet dreamt of becoming the captain. It takes real courage to go for your dreams. I’d say Ahmet’s been captain of his ship for quite some time.

If you’re interested in wishing Ahmet safe travels or want to follow his progress, go and Like his Facebook page; Ahmet The Blind captain.

I’m Thomas Reid for Gatewave Radio,
[Audio repurposed: Ahmet ” do whatever, we don’t take any responsibility! ]

audio for independent living!

[Audio: Grand Funk Railroad… The Captain]

TR:
Being affected by the lack of accessibility is frustrating. Especially when you know the so called limitation isn’t real.

It could be a website or program that doesn’t work with a screen reader. That was a choice. Probably not an intentional one, but if made aware of the problem and
a solution isn’t sought well, that’s intentional.

Companies usually fall back on the cost and yes there could be a cost to updating a product, but there’s no real cost to changing how we think and design for the future.

Inaccessibility is frustrating when you know that the reason for technology is to make our lives better.

That was one of the reasons I wanted to reach out to Marty Stone, the developer creating an enhanced device to help Ahmet stay the course.

Marty:
You can never accuse me of being an optimistic person I’m afraid, but I do hope that we can save the world with science, I really do. The world needs a lot of help and a lot of people really don’t trust science or scientist it’s kind of shameful.

[TR in conversation with Marty]
This is what technology is all about.

Marty:
Helping people…

[TR in conversation with Marty]

Yes!

Marty:
Absolutely, the stuff I do for AT&T is great and all that but doing this other stuff… this is the best stuff in the world. Volunteering and doing this other work. Taking some of that Geek ology and helping other people’s lives.. make them better. Man that’s just the dandiest thing in the world.

TR:
We need more of a bridge between the users of technology and the programmers, engineers, scientists … nerds.
Marty:
It’s cool to be a nerd now, yeh…. laughs.

TR:

The opportunity to profile Ahmet and his story came at the right time for me personally.
For the past few years, September has been a pretty busy time here on the Reid Compound.
As a survivor and a family impacted by Retinoblastoma, my family and I have spent the past few years telling stories to bring awareness of this childhood cancer.

September is childhood cancer awareness month. This year unfortunately we couldn’t produce the stories so being able to bring you Ahmet and drop a little info about this eye cancer means a lot to me personally.

In fact, I’d encourage you to check out some of the prior videos we have produced and see how the cancer impacted their lives. While these are videos the visuals included are enhancements, the story is told verbally.
I’ll have some links on this episode’s post on ReidMyMind.com.

I’m always hopeful that a story like Ahmet’s when presented in the mainstream media is done the right way. By that I mean, find and convey his message to the wider audience. In addition to the accessibility and self-advocacy I’m always personally encouraged when I see others going for their dream.

Ahmet was already preparing for the dream. He just needed the funding. His fortune, the San Francisco Lighthouse created the opportunity. Ahmet was prepared. Some say that’s the definition of luck… being prepared for opportunity

That’s another take away for me, be prepared for that opportunity. Begin moving towards your dream.

I hope the Holman Prize winners; Ahmet and Penny are encouraging you the listener to go for your dream if you’re not already.

I hope they’re encouraging you to subscribe to this podcast just
about anywhere podcasts are distributed… Apple Podcast, Google Play, Stitcher, Tune In and Sound Cloud

The world is going to be buzzing with this next episode, featuring
the final Holman Prize winner. Don’t miss it.

Peace

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