Posts Tagged ‘Adjustment’

Taking A Ride with Planes Trains and Canes

Wednesday, June 3rd, 2020

A logo features a square with  a black plane flying over it and a black train coming out of the globe. In white lettering at the top reads Planes Trains and Canes.

2019 Holman Prize winner, Dr. Mona Minkara along with her production team from Planes Trains & Canes. join me to talk about the documentary series. The show which is available on YouTube follows Mona as she travels alone to five different cities around the world using only public transportation.

The series highlights many of the challenges those with vision loss experience on a daily basis. If you pay close attention you even learn some useful skills for managing these experiences. For Mona the trip was about independence, freedom and more.

The captain has turned on the fasten seatbelts sign so hit play and get ready for take off!

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Transcript

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TR:
Hey Y’all.

I try to produce this podcast several weeks in advance of the release. I don’t always have as much lead time as I’d like.
In this particular case, I did.

With the latest police murder of George Floyd and the world wide protest that followed, I don’t feel comfortable releasing an episode without acknowledging this senseless and shameful killing.

I love producing this podcast and I truly think what you’re about to hear is a great episode,
but as a Black man I can’t help but feel like my focus should be on fighting for change. Truth is though, it’s not just Black people who should be fighting.
It’s all of our responsibility and if I’m being honest, I think the burden should be less on the Black community.
If you have the urge to inform me that there are white people fighting, please don’t. I know that. I’d ask you to consider your own role as I’m trying to figure out mine.

Not acknowledging the pain just felt like it would add even more.

Rest in Peace & Power to Mr. George Floyd and the rest of those murdered by the Police.

Thank you Reid My Mind Radio Family and I hope you understand why that was necessary.

Now, let’s shift gears and get into what I think is a goodie!

Audio: Sounds of airport fades into the inside of a plane.

From the planes PA System…
Flight Attendant:

Good day passengers.
Welcome aboard flight 99 to a better place!

Inflight service will be coming around soon with snacks!
In the meantime, please sit back, relax and enjoy your trip.
We now have a message from the captain.

From the planes PA System:

Music begins…

TR:

What’s up Reid My Mind Radio Family!

Welcome aboard the podcast bringing you compelling people impacted by all degrees of vision loss from low vision to total blindness.

Every now and then, when inspired, I bring you stories from my own experience as a man adjusting to becoming Blind as an adult.

My name is Thomas Reid and I’m not only your pilot, but I’m traveling on this journey with you.

Now if you are new to blindness and have some reservations about this flight I can tell you the ground control has approved us for takeoff. the forecasts a mix of clear skies with some possible thunderstorms. We are expected to hit a bit of turbulence along the way, but don’t worry, I got you!

Wheels up baby, let’s go!

Audio: Reid My Mind Radio Intro

TR:

In 2017 & 18 , this podcast featured profiles of each of the Holman Prize winners. If you haven’t checked out those episodes I definitely want to encourage you to go back and give them a listen.

While I decided not to produce Holman prize episodes in 2019, early this year, I came across one of the 2019 winners, Dr. Mona Minkara. She’s a Bio Engineering professor at North Eastern University and the host and producer of Planes, Trains and Canes.

MM:

Which is a documentary series on YouTube showing me traveling to five different cities around the world and using only public transportation on my own.

[TR in conversation with MM:]

So the first show that I started to watch, that was your first one when you were headed out of Boston to and going to South Africa. I’m trying to figure out, what is this feeling that I have. I said wow, I think this is a little anxiety. I’m like wow, this is good though, this is really good.

My podcast, I really like to reach out to those who are adjusting to being Blind. That’s my target audience. And so I’m thinking they’re going to feel what I feel but for different reasons. I travel independently, not necessarily like you’re doing. I’m watching because I thought about doing some of the things you’re doing where you’re walking through an airport and not getting the guide and I’m like wow this is exactly how I thought I would do it but I wasn’t sure if there was a different way. People who are new to blindness need to see it because I think some of the stuff like the constant questioning that you’re doing, the constant asking and figuring it out, people need to know that that is ok. And I love that!
So that’s why I contacted you.

MM:

That so awesome to hear you say that, so awesome because I’m going to be honest with you, I feel like this project actually even pushed me even more than I normally push myself. I would have never risked on my own a two hour layover in Atlanta going by myself to the gate. I would have never risked that on my own. But I did for the sake of this project. Like uh, we’ll see what happens.

[TR in conversation with MM:]

Oh my god, I’m so glad you said that because people need to know that. people definitely need to know that

MM:

I completely agree. And then what’s the worst thing that could happen. I think what’s really important to discuss with something like this is being flexible. I was willing and ok and at peace with getting lost. I told myself Mona it’s ok if I get lost, it’s ok if it takes me like three hours … it’s ok!

[TR in conversation with MM:]

The other thing that I like about what you’re doing and we’re going to get in to the questions in just a second but…

TR:

Ok, fine, I was excited! I don’t usually include me geeking out over my guests but it definitely happens.
I knew this would be a comfortable conversation from the start.

[TR in conversation with MM:]

How are you doing Mona?

MM:

Good, how are you Thomas?

[TR in conversation with MM:]

Good, I’m good. Do you prefer Dr. Minkara? My bad.

MM:

No, no not at all. I’ve been told I probably should but no!

TR:

I’m not really into formalities, but I realize she earned that PHD and. When she’s on that campus, at those conferences put some respect on her name! Especially considering the early advice given to her mother when learning Mona would be Blind.

MM:

I had a doctor tell my mom that it wasn’t going to be worth spending a penny on my education. The bright future that I had was over with that sentence. But it wasn’t. (laughs) My life is great! (Laughs)

TR:

From an early age, Mona was interested in pursuing science and knew she wanted to be a professor.

Audio: Magic School Bus/Bill Nye

MM:

even though a lot of times I got people discouraging me because it wasn’t very practical for a Blind person to be a scientist.
I’m probably a scientist because of Magic School Bus and Bill Nye the Science Guy.

[TR in conversation with MM:]

Shout out to Bill Nye!

MM:

Yes! I am a PBS Kid!

Audio: PBS Kid

I think a part of who I am is I truly just follow my passion and I really value freedom and independence. That kind of carried over to Planes Trains & Canes because it was the ultimate test of my independence to allow me to have my freedom.

[TR in conversation with MM:]

What came first, was it the Holman prize or was this a dream to kind of do this?

MM:

That’s as good question a very good question. I was a judge for the first year of Holman Prize. I remember going out there and helping to judge the applicant pool and being taken by this concept. Even the story of James Holman and why these people were applying.

TR:

James Holman AKA, the Blind traveler, completed a series of solo journeys taking him to all inhabited continents.
The competition is 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

Following that first year, Mona had a thought.

MM:

I’d like to apply one day. What is it that I like to do? I realized, I really love public transportation.

Public transportation is a tool that is under appreciated by a lot of people but it’s a tool for me that really gives me freedom.

TR:

Currently living in Boston, the third city where she’s lived on her own as an adult. Each of these cities having a completely different public transportation system.

MM:

And then it just clicked, the concept for Planes Trains and Canes. Traveling on my own using public transportation.

TR:

In addition, she sought out cities on different continents which meant diverse cultures.

MM:

I didn’t have a deeply scientific method other than I also wanted to go to cities that I didn’t speak the language. It’s another barrier right. You feel like you might be more lost in an non English speaking place.
It was fascinating, you can see in my upcoming episode for Istanbul, you don’t really need the language. It was mind blowing for me to realize how easy it was to still navigate in a city like Istanbul or Tokyo.

[TR in conversation with MM:]

Laughs… It’s funny to hear the Scientist say that there was no scientific method about… (Laughing)

MM:

Laughs… I mean I knew London
[TR in conversation with MM:]

From the videos, it doesn’t seem like you spend that much time there. How much time do you spend in each place?

MM:

It was like four days.

[TR in conversation with MM:]

To go all the way to South Africa for 4 days is like damn!

MM:

I know, I had to squeeze them with my new job it was insane. I just started being a professor.

TR:

In addition to Istanbul & Tokyo that’s four days in Johannesburg, South Africa, London and Singapore.
While Planes Trains & Canes is all about independent travel, making the videos requires a team.

MM:

I remember thinking like 3 years ago that whoever I did this with I have to have a Videographer that was somebody I could easily travel with , a solid person. And somebody who’s really not going to break character.

NG:
Hello

[TR in conversation with NG:]

Hello Natalie?

NG:

Hi, Thomas, how are you?

[TR in conversation with NG:]

Good, how are you doing?

NG:

Good!

TR:

During my initial conversation with Mona, she suggested I speak to her entire team. And I did. First up Natalie Guzi.

NG:

I’m a Camera Woman for Planes Trains & Canes. I’m 23 and this was my first time doing anything camera work related.

[TR in conversation with NG:]

That was one of my first questions. (Laughs)

NG:

(Laughs)
Cool, ok!

[TR in conversation with NG:]

From my understanding you were a friend or a co-worker of Mona’s?

NG:

Co-worker turned really good friend

So, I went to school to be a technical writing major and I saw an open position. One of those pull tabs job posts with a number and email. Mona had put up signs for that. the interview went well I guess. Laughs…

TR:
In a way, working as an Access Assistant for Mona, helped Natalie develop one of the most important skills for the videographer role in Planes Trains & Canes.

[TR in conversation with NG:]

You ask any Blind person and they’re pretty much going to have a similar experience about being with someone who is sighted going somewhere and then having the person who is sighted being talked to as if the Blind person wasn’t there. When did you first experience that ?

NG:

The first time I experienced that was at a Chemistry conference, like an international conference where I was Mona’s access assistant. it must have been like just checking into a hotel. it’s under Mona’s name, Mona’s the PhD Scientist, I’m the 23 year old, but the person checking her in was looking at me.

TR:
This experience isn’t exclusive to those who are Blind. I hear the same from others with different disabilities too. There’s two components; first, directing the conversation away from the person with a disability and then there’s the gaze. Focusing the eye contact towards the non-disabled person.
Now, check the technique!

Audio: Musical intro…

NG:

How we work together with that kind of an issue is that I would just make eye contact with Mona so if you’re trying to look at me my gaze, then that’s going to get redirected to her. So they know where I’m looking and they should be looking. Sometimes people would pick up that and make that adjustment. Sometimes not. Or if we were talking and there was no counter between us then I would almost step over to their side so I was also facing Mona.

TR:

As the videographer, Natalie has to make sure it remains about Mona.

NG:

I tried to be as fly on the wall as possible. (Laughs) Which is a little bit hard. It wasn’t like an undercover operation. (Laughs) It was like someone following a blind woman with a camera. There were a lot of like stares and or questions about why the camera. people addressing me that I shouldn’t film even though Mona was the subject.

[TR in conversation with NG:]

They didn’t know that she was a part of it they thought you were just following her or something?

NG:

Yeh. They would like wave their hand in front of the camera.

[TR in conversation with MM:]

And then you would have to explain things?

NG:

It depended on the situation. That’s a great question too. I’m remembering a time when at a train station in Johannesburg. I was trying to capture footage of Mona buying her train ticket. One of the staff there came up and told me I couldn’t be filming although all I really wanted to do was film the interaction of Mona buying a ticket. No, no, like here’s the business card we’re filming a documentary. We’re not mapping out your train system for any weird purpose.

[TR in conversation with NG:]

That seems stressful to me. Can you talk about that.

NG:

Sure. By nature I lean towards wanting to make people happy and feel comfortable and welcomed. And when you’re walking around with a camera and people don’t know why that’s not really a possibility.
It’s difficult having those eyes and feeling those emotions from other people coming your way and having to remind yourself of the situation and the mission in that moment.

[TR in conversation with NG:]

Did that get easier?

NG:

We had the opportunity to go to lots of different countries and experience different cultures so it shifted every place that we went. Like people would in Istanbul, being like welcome and we love it and come to our store as we were walking by trying to get video.
In comparison, the experience in the London tube wasn’t as welcoming.

TR:

These are the things making Natalie the right person for the job.

NG:

A thick skin. You got to have that self-confidence and confidence in the mission and in the team too.
I think Mona and I’s relationship we just always have each other’s back. So I think that trust and that collaboration really was like the heart of the whole project that kept us going.

TR:

That trust could even mean stepping in and putting yourself at risk.

NG:

In Johannesburg, Mona was crossing the street and this car was taking a corner really fast. I had to jump into the street and like put my arms out. I just thought that car was going way too fast. I wanted them to see two people in the street at least like saying stop.

TR:

Mona and Natalie have the foundation making up a real team.

NG:

We kind of work together. She gave me the feedback on what worked in different situations. It was nice to have a collaborator with that too and just follow Mona’s lead.

TR:

After watching Planes Trains & Canes and then having the chance to speak with Mona, it’s apparent, what you see is what you get.

MM:

I’m pretty assertive I would say as a person, but I understand not everybody has that personality. When I’m tired and exhausted and getting off a 16 hour flight I’m not the sharpest. I’m just like excuse me (said lethargically) my energy’s low. I could be ignored more easily in that situation verses when I’m bright eyed and bushy tailed , I’m like hello!

[TR in conversation with MM:]

You’re quick not to give off any pity vibe or anything like that.

MM:

Yeh, cause I don’t want your pity. I want you to treat me like any other human being. I just happened to be Blind. Sighted people ask for directions all the time. All the time! Just adjust yourself , just a little bit by verbalizing your directions. I appreciate it, thank you!

Audio Bumper for editors

TR:

In order to win the prize enabling Mona to start her adventure she would have to first accumulate enough likes on her Holman prize entry video.

Contestant’s seeking the 25 G’s must first posts their videos to YouTube. The videos need to explain their ambition and cannot exceed 90 seconds. Mona and Natalie paired up to shoot the video with Natalie taking her first shot at editing. The video foreshadowed some of the reactions they’d eventually receive while traveling.
Audio: Clip Planes Trains & Canes Ambition Video

TR:

Winning the prize enabled them to purchase a camera and wireless
microphone.

Natalie and Mona learned more than expected from editing that first 90 second ambition video;

MM:

How much work editing would be.

[TR in conversation with MM:]

Chuckles…

TR:

Mona recruited Anxhela (Angela) Becolli
, her current Access Assistant at Northeastern.

MM:

She actually was the one who edited Johannesburg. She’s actually with me right now and…. Ok, I’m bringing her in…

AB:

I wasn’t expecting to be on the call…

[TR in conversation with AB:]

So that was your first shot at editing?

AB:

I had done editing a little bit before. In college I studied Photography in China and there I had done a few projects in videography but mainly photography. This was my first full paid project.

TR:

The thing about creating a documentary series such as Planes Trains & Canes is that you don’t know what your story is until it happens.

MM:

We recorded with no story line in mind. Recording as life unfolds in front of you and then extracting the story. So there’s an element of being able to story tell what you lived as opposed to the other way around – you are building the story and then you record the story.

You don’t know what life is going to give you.

As I was living it I remember taking mental notes like oh my God this would be really interesting to share with the audience.

TR:

Construction takes place in the editing room.

AB:

The main part is the story part. When Mona and Natalie give me the videos they also gave me this list of what they wanted the story to look like. What there idea was and what they wanted to portray to the viewers. What the most important parts were. What parts were light hearted. What parts were very specific to being Blind, to traveling and what needed to be kept in no matter what quality the video or audio was.

TR:

Mona is clearly directing all aspects of this project.

MM:

This part needs to be sped up and it’s kind of boring. I think we should add more of this part. I would say ok, let’s find music that represents the fact that I was feeling fearful or excited. I only used music connected to whatever city I was in. So all the music in the Johannesburg episode in part two, is from musicians from Johannesburg.

I personally have a certain vision for the vive and what was happening and Angela would work with me and hear what I have to say and implement it.

TR:

Creating content like this means investing real time.

AB:

If you have 40 hours of video you’re taking about 60 hours to watch the videos because you’re going to make notes, you’re going to cut things and you’ll re-watch those.

TR:

Angela was already committed to other projects so Mona had to find another editor.

Ted:

I’m Ted Jimenez, I’m the second editor put on the team to work on the new episodes; London, Istanbul, Singapore and Tokyo.

I am a self-taught editor. I worked with small independent studios before back in my home the Philippines I worked for States Sessions. It was a company that put on productions for Indy musicians in the Philippines. I did music videos for them. Promotional videos for them. Now I’m in Boston.

TR:

Where he too works at Northeastern making psychological self-help videos.

Mona decided early on that Planes Trains & Canes would not be a narrated style documentary.

Ted:

This is where Mona and I have conflicting views. I was going in with like my script saying oh Mona could you narrate this portion for us. And she is more of a fan of in the moment. I’m not going to pre-record a script that tells a story I’d rather the audience live through the story because it tells the Blind experience more naturally than if it was just said by her.

TR:

Show, not tell!

Mona’s voice over narrations that you hear in the series are sort of a means of accentuating specific moments.

Ted:

And it’s also to make it lighthearted.

MM:

I wanted comedy to be a main element. I want people to laugh while watching this because I want my message to really be heard and it’s going to be heard more through a comedic tone than through a lecturing serious tone.

TR:

Lighthearted may be the goal, but come on traveling Blind just like living Blind, you will have some encounters.

Audio: London…

[TR in conversation with MM:]

So you know where I’m going now. We’re going to London! You know the episode. (Laugh fades out) you were told that you had to register.

MM:

Yeh, yeh, yeh! I had no choice.

[TR in conversation with MM:]

So my anxiety woo, went through the roof! Mona, I’m going to tell you, I’m not that good at that situation. I’m from the Bronx Mona, I get a little aggressive. Ok! (Laugh fades out)

MM:

Laughing…

Dude, I’m going to tell you honestly, I held myself together because I didn’t even know if Natalie was videotaping me or not. But just in case she was I was like I need to make this point clear.

TR:

That point is at the core of this project; independence and freedom.

Ted:

I really like London as an example about how we kind of tell that story.

First, Mona getting off the plane into the subway. We foreshadow that Mona likes the choice of being able to ask for assistance or not ask for assistance.

In the second section of London where she’s coming from the airport to the Metro, that’s when we see that whole belief that she has of accepting or not accepting assistance.

TR:

You’re going to have to head on over to YouTube and check out the series to find out more.

Audio: Next time on Planes Trains & Canes…

TR:

Planes Trains & Canes is all about perspective.

It’s filmed from the perspective of a woman who is Blind and enjoys traveling independently and values her choice.

Along the way she interacts with people who may view the world differently.

[TR in conversation with MM:]

Wait up. You said he was nice?

MM:

I’m saying he was nice yes. (Laughing)

[TR in conversation with MM:]

Did you feel that way in the beginning? From the video, I took this guy like he was being condescending.

MM:

Oh, he was totally being condescending. I think it’s just the norm there to kind of treat people with disabilities like we are a bunch of 5 year olds. An underlying patronizing vibe!

TR:

As we each bring our individual perspective to the series, chances are there will be opposing points of view.

MM:

Did you see some of the comments that were on YouTube. Let me tell you. There was this one person who goes by SocietySister she wrote that I was selfish for not accepting help.

TR:

probably the same type of person to find the inclusion of Audio Description as a default in the series videos to be selfish.

MM:

I really wanted to make every video we create accessible to both Blind and Deaf individuals.

TR:

That’s a pretty inclusive approach giving a variety of viewers a chance to benefit from Mona’s experiences.

What did the production team take away from this experience? First, Natalie.

NG:

People are people wherever you go. They’re curious, they’ll probably want to know what’s going on if you walk into a new situation. maybe concerned if they see something new if they see something different. No matter where you go people do want to understand and to and connect. Also, trust and partnership with Mona . Just a profound sense of gratitude for working together for collaborating for trusting me to capture her experience and to be an observer.

TR:

Angela, who edited the first two episodes from Johannesburg, had hours of video to review. This gave her the chance to really see what Mona experiences.

AB:

I had a lot of moments where I went what I can’t, what why I can’t believe someone would do that. I can’t believe someone would say that. Why would someone treat you like that. Mona mentioned that Natalie was able to keep her calm, I’m the kind of person that would be like no what are you doing, you can’t do that. You can’t treat someone like that. Yeh, I’m not someone that would be able to keep her cool. (Laughs)

[TR in conversation with AB:]

Laughs.

TR:

I could see Angela and I teaming up in some bar fights together.

Ted, the editor of the remaining episodes, it should be noted is not only editing, but he’s doing all the Audio description and captioning. As someone making a career as an editor I had to ask him if he’d become a proponent for Audio Description.

[TR in conversation with Ted:]

You’re working with, I don’t know Steven Spielberg. You’re like Steven we got to put some Audio Description on this man… (Laughs)

Ted:

Laughing… Hey Steven! (Said in a serious tone)

Oh yes of course. Right now it’s normalized for me to kind of like say well what are the options for everybody if I’m viewing piece of media. Mona has made it specifically clear that the deadlines are the deadlines for everything. The captioning, the Audio Description. The video, It needs to be accessible to everyone.

TR:

Planes Trains & Canes was Mona’s way to not only highlight the benefits that public transportation affords her, but also show the ingenuity and abilities of those who are Blind.

Mona’s travels reveal lots of valuable lessons for those adjusting to blindness.

MM:

Even though I am 32 years old, I feel like I am more at peace with it then I have ever been. I don’t know if I want to share this with the world but yeh (laughing…)

[TR in conversation with MM:]

Well, let me just say something to you right now Again, it’s totally, totally fine if you don’t want to share.

MM:

Yeh!

[TR in conversation with MM:]

But that right there, again, think about it from the person who’s adjusting.

MM:

Yeh! No, I think it’s good I’ll explain why I say this.

[TR in conversation with MM:]

yeh!

MM:

I thought I was at peace. I used to take comments of you look sighted as compliments. I realize the detriment of that, only until like last year. Why should that be a compliment, you know? And I realized that I had built up all these techniques to almost compensate for blindness as opposed to work with it.

I had internalized this concept of blindness as weakness. I think it’s really important for Blind people to realize, we are inherently better problem solvers because we have to work around a lot of things. Blindness is not weakness. And to truly believe that I don’t know if I’m a hundred percent there.

TR:

I so respect and appreciate that honesty. It’s what I personally believe, adjusting to blindness is a continuous process. And if that’s ok for this Bio Engineer professor, well, I’m just saying, she’s doing something right.

[TR in conversation with MM:]

What have you taken away from this whole experience?

MM:

I think I pushed myself more than I would have for the sake of the videos. I learned that there’s a lot of good out there and there’s a lot of like negatives that we need to fix and that’s ok.

I don’t know how to explain this feeling. it’s almost an internal shift where I want to go to Mongolia, I can go to Mongolia. Where maybe before I’d be like well I really don’t know how I would go to Mongolia. I need to find somebody to go with me or whatever. And now it’s like this state of mind. If I want to go I can go!

[TR in conversation with MM:]

It sounds like, like you’re free.

MM:

Exactly! Exactly I obtained more freedom than I ever thought I could. And I think I have more freedom than the average person gets to mentally experience and what a privilege.

[TR in conversation with MM:]

And it’s attainable. You did it one specific way but that’s not the only way to attain that level of freedom and access.

MM:

Yeh. It’s like I learned it from my travels but I feel like it’s not about the travels, right. You can learn it in your own backyard. it’s about the mindset… you want it, go for it!

[TR in conversation with MM:]

Mona, this was better than I thought it was going to be. I thought it was going to be great, but this was even better. (Laughs…)

MM:

Laughs…

[TR in conversation with MM:]

One hundred percent!

Congratulations! I’m going to keep watching. I want to make sure other people watch. So you got a fan over here ok, I just want you to know that.
MM:

Thank you very much, I’m a fan of yours too!

TR:

Please welcome the latest members of the Reid My Mind Radio Family. Planes Trains & Canes, that’s Natalie Guzi, Angela Becolli , Benjamin Ted Jimenez and leading the way with her white cane in hand;

Audio: Put some respect on my name!

Dr. Mona Minkara!

[TR in conversation with MM:]

where can people check out Planes Trains & Canes and also where can they learn more about you Mona?

MM:

They can go to PlanesTrainsAndCanes.com or go to YouTube and type Planes Trains & Canes or you can go to MonaMinkara.com to learn more about me. If you want to learn about my research check out MinkaraCombineLab.com.

If you’re on Twitter follow @PlaneTrainCane (singular) and @Mona_Minkara

You can subscribe to Reid My Mind Radio wherever you get podcasts.
Transcripts, resources and more are over at ReidMyMind.com. And yes, that’s R to the E I D (Audio: “D, and that’s me in the place to be!” Slick Rick)

Like my last name

Audio: Reid My Mind Radio Outro

Peace!

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CoronaVirus – So Many Parts

Tuesday, April 21st, 2020

Corona – So Many Parts

Covid 19 and CoronaVirus is the most immediate & serious thing we as a human race have dealt with at the same time. Simultaneously, we’re all a part – as in a community. Yet, we see so many all over the world trying to tear apart any form of cooperation between nations and people – apart as in separate.

It’s been hard to focus on something other than this pandemic, but there is a connection to blindness, to disability… take a listen, I got something to say!

Listen

Resources

Transcript

Show the transcript

Audio: Sir Joe Quarterman- (I Got) So Much Trouble In My Mind

Women yelling…
“I got something to say” (Fades out )
“I got something to say” (Fades out)
“I got something to say” (Prolonged yell fades out)

Ice Cube, NWA: “Yo Dre!”
Dr. Dre, NWA: “What up”
Ice Cube, NWA: “I got something to say”
Dr. Dre, NWA: Scratches on turntable

Lyric from instrumental mixes in… “I Got) So Much Trouble In My Mind”

Audio Sample: “You have got what appears to be a dynamite sound”

Instrumental music…

TR:

Greetings Family!

I’m hoping everyone is healthy, safe, comfortable and optimistic

I’m just trying to find the right words now. Well the right words for the opening I know are …

I’m Thomas Reid, host and producer. of this here podcast known as Reid My Mind Radio.
Bringing you compelling people impacted by all degrees of vision loss and disability.

Every now and then I share my own thoughts and experiences as a man adjusting to becoming Blind as an adult.

Finding the right words to express how I feel about all that is going on today isn’t so easy. The introspection though, can be helpful. It forces me to step back and get perspective. That search for the right words can even inspire a bit of creativity.

Audio sample: “Don’t toot your own horn honey, you’re not that good!”

TR:
I guess you can be the judge of that!

Audio sample: Woman yelling, “I got something to say” (Fades out )

Audio: reid My Mind Radio intro

Audio: Sir Joe Quarterman- (I Got) So Much Trouble In My Mind(continues from intro)
– Musical loop

Audio: Covid19 related News montage

– “It’s been another painful weekend in the CoronaVirus pandemic. The death toll is now more than…” (Fades out …)
– “More than 20,000 people have died from Covid and more than… ” (fading out …)”
– ” “More than 100,000 Covid cases in New York City. There’s also a serious shortage of swabs used to test for the CoronaVirus. That’s according to the city’s health department, which is now telling medical providers only test hospitalized patients.” (fading out…)
– “Perhaps because of The New York Times story, last night saying Republicans were trying to get the President to talk less every day, today’s White House briefing went on for over two hours. The president said some of the coverage is fake news. He said today flatly, everyone has the ventilators they need. He said we’re in great shape in every way.” (Fading out…)
– “Obviously, if we had right from the very beginning shut everything down, it may have been a little bit different. But there was a lot of push back about shutting things down” – Dr. Fauci

TR:

During my intro to the last episode, I purposely kept my thoughts about Covid19 and the CoronaVirus to a minimum.

It’s not as though I didn’t have anything to say, but I like to let my thoughts form fully before getting into a rant or ramble that I may end up regretting.

Today, I hope it’s okay that I share some of these feelings and thoughts I’ve been having, all triggered by Corona!
(stutter effect on corona_

Yeh, that’s right, this Corona has me stuttering. I’m shook!
I’m in no way making light of the situation. There’s just so much about what’s happening that is so ironic.

it’s the most immediate & serious thing we as a human race have dealt with at the same time. We are all a part – as in a community.

Meanwhile, so many all over the world trying to tear apart any form of cooperation between nations and people – apart as in separate.

That got me thinking…
Audio: Music stops… echo…
If this isn’t your first time listening to this podcast, you know that I tend to think about and focus on the process of adjusting to blindness.

Part of that adjustment includes things like employment, technology, orientation and mobility and just learning how to do the practical things.

From my own experience and conversations I’ve had with others, I know a very challenging aspect of adjusting is how we view ourselves after Blindness. Our self-image. It’s why many of those newly blind don’t’ want to refer to themselves that way. blind.

When your only substantive exposure to Blind people isn’t positive, well, why would you want to be a part of that group.

So chances are you wouldn’t see yourself as part of the disabled community either. I get it, I was there too.

There’s the titles we assign to ourselves and then there’s how we’re identified by others.

Growing up, I’d often be asked, what are you Black or Puerto Rican? My self-identification doesn’t separate the two. Those with an understanding of the history feel me right here… Look up Arthur Schaumburg and you’ll see where I’m coming from.

Society has assigned me a label that often dictates how many choose to interact with me.

When I was stopped by the police, .
Ran out of neighborhoods while being called names,
Followed in stores…

I was never asked, what are you Black or Puerto Rican?

However you decide to self-identify, if your vision loss or disability is visible or recognized , society sees you as Blind. Society sees you as disabled.

I’m not here to tell you how to self-identify .

I want this podcast, at the very least to stimulate some thought around adjusting and all that comes with it.

Personally, my belief is that when you get a better understanding of the people the history, expand your understanding of what disability is and isn’t, defining yourself may be an easier process.

With all of that said, there’s a connection between blindness, disability and this pandemic. Even if you don’t see yourself as disabled, it’s worth knowing how this pandemic is impacting the community.

I’d encourage you to go check out RMMRadio alumni Alice Wong’s Disability Visibility project podcast and website for more perspective.

The pandemic’s impact on us all is different. Disability, economics, location, housing… so many factors that play into how this pandemic impacts us.

Audio: Instrumental “Quiet Storm” Mobb Deep

Audio: Covid19 related News montage

– “The Pandemic seems to be disproportionally affecting people of color”
– “African Americans have been hardest hit by the virus. Despite accounting for 14 percent of Michigan’s population they represent 41 percent of it’s Covid victims. And in Detroit where the majority Black population, more than a third of them poor it’s even more stark.”
– “There are many reasons why Black communities are disproportionately being impacted by CoronaVirus according to a range of experts I spoke to. Historic disparities between access to healthcare, education, information and government resources in Black communities compared to predominantly white communities. throughout American history there’s been great tension between Black communities and the healthcare industry. Tuskegee Syphilis experiment. Ongoing studies that show that black women particularly those who are pregnant, are less likely to be listened to by their doctors and healthcare providers.”
– “African Americans are being hit disproportionately hard. We broke down some of the reasons. Medically why do you think that is. (Second speaker-Doctor) People of color are generally more susceptible to diseases and we know that they have those pre-existing conditions; the Diabetes, the heart disease, the asthma that makes them more likely to suffer consequences because of the CoronaVirus.”
– “Can you describe the make-up of the people in your waiting room right now. (Second speaker- Doctor) We’re noticing more Black and brown and immigrant patients that are seeking care. A lot of these patients are essential workers. A lot of them are service workers.”

“The Real” Mobb Deep

TR:

Salutes to all of those men and women right now doing the work that will get us through this awful situation. I’m talking about the medical professionals, staff including technicians, receptionists, janitors, food workers and others. So many of these people have been doing this work for years and have been unseen even looked down upon. Now in the midst of a pandemic, it helps us see the value in their work.

Corona has revealed some truths about society that people have been trying to either hide or not think about.

We need each other!

We all have something to contribute.

Can I share a story?
(Well, I’m going to anyway, because it’s my podcast!)

My wife and I went to this party. this was post blindness. It wasn’t my first time attending a party Blind so I was familiar with the challenges:
Some are physical;
learning new spaces
dealing with the crowds in those space

Others are more emotional, philosophical;
Should I use my cane?
How can I meet or start and interaction with new people
Where’s the bar? (It’s a party, right!)

Although I knew the challenges, I had not yet figured out my method of dealing with them. By this time, I think I was intent on not letting avoidance be my answer.

There was nothing about the party that was overly memorable except how it felt like we were shown to a section of the space and sort of left there. We only knew a few people outside of the person who invited us. My wife and I both felt the tension.

I remember thinking about how the experience would have been so different before vision loss. Those who did know me would have called my name when we walked in, maybe we would have made eye contact during the evening, we would have been introduced to others. Instead, we didn’t feel welcomed. We were there, but not a part of that party.

Ultimately we came to the decision it was in our best interest to leave that physical space as it was crowding our emotional space.

Sitting there at the edge of this party, feeling as though we were on display, I wanted to be included. I wanted a role and not that of a bystander.

This pandemic triggered those same feelings. Chances are, it’s not just me.

Doing anything right now that doesn’t relate to Corona, just doesn’t feel right. I like other people want to be helpful. In some way.

Despite what seems like the world coming to a halt because of the virus, life is still happening. With or without this pandemic there are lots of people new to vision loss. Some of them are former nurses, doctors, EMS workers. Similar to how I felt at that party, these men and women I can imagine aren’t satisfied with being bystanders. Are there opportunities for these men and women to contribute if they so desire? Are there people with disabilities on the frontline.

This reminds me of the documentary produced by RMM Radio alumni Day Al-Mohamed, called Invalid Corps. It features the story of a virtually unrecognized troop of soldiers who served in the civil war. All were soldiers with disabilities.

Shout out to Day and let me encourage you to check out that episode.

Do I actually believe a Blind nurse or doctor can somehow be effective?

If you’re asking that question this must be your first time here! Welcome!

Am I proposing these newly Blind men and women are sent to the ER?

I’m not a doctor and I haven’t played one on TV. Even though I do have lots of experience watching medical dramas on television I don’t think I can make that determination. However, I don’t think the answer is a quick no like so many people would assume.

As people with disabilities We’re so used to being dismissed and hearing things like;
Well, it’s just not accessible…
It has to be done a certain way, we can’t just change how we do things.
Change can’t take place overnight.

Inaccessibility is somehow treated as if it’s natural.
The majority of inaccessibility is manmade. Physical access like getting into a building. Software constraints that keep many of us from either participating on the web or employment and then process restrictions that mandate how a job is performed.

And then, all of a sudden!

Audio: Gazoo (from The Flintstones)

Have you noticed all of the corporations now accommodating their employees with work from home access?
The online conferences and entertainment now available.
Everything getting done online.

If inaccessibility is manmade then maybe man can fix it,
Audio: “That’s right!” from Harry Belafonte’s “Man is Smart Woman is Smarter”

TR:

Huh!

Audio: “That’s right!” from Harry Belafonte’s “Man is Smart Woman is Smarter”

Audio: Bill Withers Lean on Me Instrumental

TR:

Right now, I guess my role in this pandemic is staying home. It’s continuing to do this podcast. In thinking about how I can do more, I sure don’t want to do less so I’ll try to do what I can. I’m going to remain optimistic and not get caught up in conspiracies, although they can be very entertaining.

Eventually, this too shall pass. I just hope we will move forward and be honest about how we got here. I’m talking about the impact of years of all the isms, racism, sexism, ableism…
the neglect, , the poverty, the gaps between the have and have nots.

None of these things are new. They’ve been here way before any of us were here. Corona just highlighted those on the margins, the party goers who have always been apart, never actually partying.

I know many people are calling for a return to normal, but that doesn’t seem like what we should be striving for.

I hope you don’t mind that I shared this with you. I just needed to put my two cents out in the world in my own way.

I have some non-Corona episodes in the lineup. I can’t promise I’ll be silent on this topic, but at least I’ll try to make it sound cool and make you smile along the way.

I hope when you listen to this podcast you feel a part of this community, my Reid My Mind Radio Family!

Last month’s episode titled Live Inspiration Porn – I Got Duped, attracted some new potential listeners to the web page over at ReidMyMind.com.

According to Google, a bunch of people in search of the term porn, were served the episode’s web page. I can only imagine the disappointment they had for google when they saw this particular episode in their results.

But wait, according to Google, several actually clicked on the page.

I don’t necessarily consider myself a good writer but I’m sort of proud of this one! I mean wow, shout out to me for what must have been a fantastically written blog post to redirect that person away from they’re original search.

I’d love to know if someone actually ended up listening to the episode based on that discovery term. And man if you actually came back… email me at ReidMyMindRadio at Gmail.com because that would be the best testimonial ever!

Don’t worry, no judgement here! Get your freak on!

If you like what you heard here today, tell a friend to check it out…

Let them know it’s available wherever they get their podcasts. Of course you can take a ride on the information super highway and get off on the ReidMyMind.com exit. That’s R to the E I D. (Audio: “D, and that’s me in the place to be” Slick Rick)

Like my last name!

Audio: Reid My Mind Outro

Peace!

Hide the transcript

The Making of Blind Leaders

Wednesday, October 23rd, 2019

Are leaders born or are they made?

The American Foundation for the Blind is seeking applicants who believe they have what it takes to learn how to become a leader.

Headshot of Megan Aragon
Megan Aragon is the Director of Knowledge Advancement Programs with AFB. Hear all about the Blind Leaders Development Program and how you can apply. Whether in the profit or nonprofit sector, leadership skills can help you reach your goals taking you to the next step in your career.

Megan’s own story of adjusting to vision loss exemplifies the ideas behind the Blind Leaders Development program. She provides some real insight on the adjustment process making this a must listen for anyone struggling to accept their own blindness.

Listen

Resources

Transcript

Show the transcript

TR:

Welcome back to another episode of Reid My Mind Radio.
I’m Thomas Reid, host & producer of the podcast bringing you
compelling people impacted by all degrees of vision loss. That means from Low Vision to totally Blind.

As we’re in the midst of NDEAM or
National Disability Employment Awareness Month,
I’m happy to bring you an episode with this in mind.

Audio: Reid My Mind radio Intro Theme Music

My name is Megan Aragon. I am the Director of Knowledge Advancement Programs with American Foundation for the Blind.

TR:

Before Megan began directing and advancing all of that knowledge
she had to find her own way.

At 17, while studying hard in college, Megan began experiencing eye fatigue. She initially blamed it on all of the studying but soon began seeing what she describes as lights.

MA:

Eventually those lights started to fill in to a blind spot. I’d be driving and pedestrians and street signs would just sort of pop into my peripheral vision and I didn’t realize what was going on it was just like they were appearing out of nowhere.

TR:

A few months later Megan was diagnosed with Stargardt’s Macular Dystrophy.

Even though she had a diagnosis, Megan admits she didn’t deal with the changes.

MA:

At some point you can’t just say I’m not going to deal with it. You have to deal with it.

I think it was probably over the course of four or five months I went from perfect vision to Low Vision.

[TR in conversation with MA:]
So you weren’t using any aids, large print magnifiers…

MA:
No, and I had no clue of what was out there in terms of tools resources, options nothing because I was being so stubborn and really acting in denial. I didn’t even do any research. I was just like nope I’m going to do it the way I used to do it and how I’ve always done it and then eventually I couldn’t.

TR:

Megan was creative in hiding her blindness.

MA:

Before I started college had worked as a waitress. So I knew that job and I knew how it might be done without vision.

TR:

Waitressing with low vision meant maximizing her memory of;
first, the menu, including ingredients for each dish

Then there’s taking each person’s order at the table.

Plus she memorized each screen on the computer order input system.

That was all after getting passed the in store application process.

MA:

I end up sneaking a magnifier in and was like reading a question and hiding the magnifier and filling in the answer and pulling out the magnifier out and was hiding my vision loss but was able to pass a personality/math test.

[TR in conversation with MA:]

I’m sure you probably thought about it, but what do you think was the reason that you were trying to hide it or trying to pass?

MA:

I hadn’t come to terms with it so I had no idea how to tell anybody about it without seeming super awkward and feeling weird. I just wanted to have a normal life. I could potentially lose my job. It would risk what I had built.

I think it could have been a really great opportunity for me to learn and for everyone else to learn, but I still just didn’t have those tools in my toolbox.

[TR in conversation with MA:]

Well eventually you did.

MA:

It was a long time after the waiting tables thing.

TR:

It was after graduating college with a degree in Sociology.

She had a plan to get some work experience and then return to school for a Master’s degree.

But she had to have a conversation with herself in order to get to the root of what was holding her back.

MA:

You need to understand your vision loss. You need to communicate about it and you need to know what tools you need in order to be successful.

TR:

What she didn’t know at the time was she needed an example.
Fortunately, her Dad knew someone who suggested their local Lighthouse for the Blind.

MA:

I look them up, it’s like a manufacturing facility. And I said, I don’t want to work at a manufacturing plant, that’s not the type of work I want to do. I don’t know where to turn to . I ended up sending my resume over and interviewing with their Vice-President of Operations. He has a visual impairment. I think we spent two or three hours during that interview .

This guy has a vision impairment adjust like I do and he has his act together. He has a big job, he’s got it going on and he has vision loss just like I do, huh! Maybe I could have it going on. So finally the lights came on.

[TR in conversation with MA:]
So the lights came on at the Lighthouse!

TR& MA laugh…

MA:

I remember I got the call that they were going to give me a job and I was in the kitchen and got off the phone and started dancing around like oh my gosh it’s possible , like I could totally do this!

In my mind I hadn’t proved it to myself yet that I could be a good employee. That I had value to bring to the table. You know that (exhales) that I could do something more than waiting tables.

TR:

No shots at all to those waitressing,
Megan just needed to know she could be successful at something else.

That seems pretty obvious to those who see the ingenuity and persistence that went into first landing the waitress job, but Megan had to realize her own value.

Once denying her vision loss, now the Director of Knowledge Advancement Programs at American Foundation for the Blind.

MA:

Knowledge Advancement programs are focused on employment and developing ways to change the system that individuals go through that effects employments. Hiring practices of employers. general inclusion practices of employers. Policies and practices that affect employment of the blind and visually impaired individual. Helping to develop blind and visually impaired individuals so they’re ready to step into roles of leadership and employment.

TR:

Part of that last initiative is the Blind Leaders Development Program

MA:

This will be our kick-off year. Essentially, the Blind Leaders development program will take a group of 12 to 16 Blind and Visually Impaired individuals through a leadership development program for 12 months. The curriculum we’re using for this program is called the Leadership Challenge.

TR:

Based on 30 years of research, the heart of this curriculum is
the idea that leaders aren’t born. leadership can be taught.

MA:

There are 30 specific behaviors that are observable if someone demonstrates those behaviors then they’re more likely to be willingly followed by others. The theory is there are things you can do to be a better leader.

It’s a kick start. It’s meant to amplify someone’s career trajectory. We’re hoping to develop leadership capacity within individuals and see them achieve upward mobility.

[TR in conversation with MA:]

Give me an example of someone who would be right for this program. Jane Doe works, you fill in the blank, she does bla bla bla!

MA:

Sure, so Jane Doe could be working at a nonprofit agency, in the for profit sector, government sector. Is interested in developing her ability to be a better leader, engaging with her organization.

[TR in conversation with MA:]

What type of work would Jane Doe be doing. Does it matter? Could she be an Admin? Does she have to be already on the management track?

MA:

Yeah, she could be doing anything. Doesn’t have to be on the management track, but interested in doing something like that. Interested in achieving hire level of career and leadership responsibility.

TR:

Sounds like you or someone you know?

Here’s a bit more of what AFB is seeking from a candidate.

MA:

Someone that is going to take the learning the knowledge and the concepts that we discuss during the program and take that home and apply them and really engage.

TR:

Apply them at work and in community organizations by serving on committees, boards.

MA:

Someone that is willing to consider a variety of opinions and perspectives and is able to integrate those into new ways of thinking. Creative open mind set.

We also want to see someone that has the potential to be a productive participant. They are willing to make the commitments that are required to really get a lot out of this program.

TR:

Here’s how it will work.

All interested candidates will have to complete an application available online at AFB.org.

The yearlong program will kick-off with a two day leadership workshop just prior to the AFB Leadership Conference in March 2020.

MA:

Where they’ll dive really deeply into the leadership challenge text, the results of their leadership practices inventory which is a survey that measures the frequency of those 30 behaviors I mentioned before.

How often does a participant for example, follow through on commitments they make.
TR:

Such behaviors are said to be an indication of leadership ability.

In addition to setting their own goals for the program,
participants will rate their own abilities and the results will be compared
to answers provided by their peers and managers.

MA:

It’s both eye opening and affirming.

The rest of the year will be done virtually. Every other month there will be a webinar where we talk about soft skill development, interpersonal skills and those key skills that are so important for leadership development.

Communication, networking, things that a lot of times require the ability to read nonverbal cues. So how do you do that as a Blind individual. Techniques you can use to make sure you’re as effective or better as your sighted peers.

We’re also incorporating a professional coaching element to the program and a mentoring element to the program.

There will be 12 to 16 Blind and Visually Impaired established leaders that will participate in the program as well and help to mentor those participants.

TR:

On the off months where there is no webinar scheduled,
participants will meet individually with their coach and mentor.

Mentors will also need to complete an application.

Those selected will be paired with a mentee prior to them meeting
for the first time during the leadership workshop preceding the AFB Leadership Conference in March of 2020.

MA:

Pair based on interest, and goals, experiences. So that what the participant is hoping to achieve down the line will match with what’s going on with the mentors so that there’s alignment.

TR:

Megan’s own story of coming to terms with her vision loss exemplifies
the importance of mentors.

MA:

mentoring is such a powerful thing. It gives you a different perspective, a different way to look at your situation and say okay, I can approach this in another way. It also gives you hope, like I’m struggling with whatever my issue is right now but look at this other person whose either gone through something similar or has been there and done that.

TR:

Megan clearly understands the benefits and continues to have mentors in her life.

MA:

Two of which are not visually impaired individuals but all three are women. That’s been the main connecting piece there for me. Women that are successful and really wonderful role models.

[TR in conversation with MA:]
In a way you brought up diversity so I’m going to ask you in terms of the BLDP is there a plan in place? Is there consideration to make sure that the choices made are a diverse group?

MA:

Yeah absolutely! We’re collecting information from our applicants about their diversity and will take that into account as we select participants to make sure we have as diverse a group as possible. As representative a group as possible. And in the application all of this is explained. How we’ll keep all of the applicant’s information private and make sure that the selection process is as unbiased as possible. That is absolutely a commitment that AFB has made. The more perspectives we can bring to the table the better everyone will be. Especially if we’re very intentional about how we leverage that diversity and how we leverage the different perspectives. And this is one reason why that’s a criteria that we’re looking for – open mindness, the willingness to learn, the willingness to consider other perspectives because of how powerful that can be in the learning process.

TR:

Now, I know what you’re thinking.
As I mentioned in the beginning of this episode,
it’s National Disability Employment Awareness Month.

What about those struggling to gain employment?

Well, AFB is in the early phase of creating
pathways to competitive integrated employment.

MA:

The first phase is research and studies. The second phase will be testing our theories about how we can create those pathways and the kinds of jobs that we’re talking about. What we’re committing to is developing knowledge based work for Blind and Visually Impaired individuals. So this is probably using a computer. Probably requires a Bachelor’s Degree or some sort of specialized training and knowledge and would be work that requires creative thinking and problem solving. That’s where we’re hoping we can really move the needle as far as folks that don’t have a job who are interested in working in the knowledge based field.

TR:

I know there are real candidates right here in the Reid My Mind Radio Family both for Mentors and Mentees.

The application process closes on November 1, 2019.

Applicants will be notified of the results in mid-November.

Please let me encourage you to head on over to AFB.org and
look for that button that says Join the program or become a Mentor.

If you have additional questions about the program you can email Megan

MA:

M as in Megan.
Aragon (Spelled out)at AFB.org
MAragon@AFB.org

TR:

A big shout out to Megan Aragon.

There are a lot of people right now going through their own version of her story.

Trying to run away from the loss and convince themselves nothing has changed.

Hopefully those going through this can see Megan’s courage not only in
adjusting her perspective of vision loss but also in the way she shared it today.

She’s come a long way from hiding her magnifier.

And now that she’s no longer memorizing menus and order entry screens
but rather using access technology, she’s free to
keep on directing all of that knowledge over at AFB.

And hopefully come back on the podcast to discuss the inaugural year of the program.

I know this is the end of October and
National Disability Employment Awareness Month, but
we’re going to keep the conversation going into November.

There are many specific factors for those with disabilities to consider when seeking employment.

We have past episodes that deal with this subject specifically.

But so much of the employment process is universal.

Next time, I’m speaking with a Career Coach to hear more about how
that process has changed.

it’s no longer a passive process –
there’s methods that can really put the job seeker in control.

There’s only one way to make sure you don’t miss that…

Subscribe or follow the podcast where ever you listen;

Apple, Spotify, Google or your favorite podcast app.

I appreciate you listening and if you liked what you heard please rate and even review the show via Apple Podcast. And please, tell a friend to listen. Spread the love, man!

You can always visit www.ReidMyMind.com, that’s R to the E I D like my last name!

Audio: Reid My Mind Radio Outro

Peace!

Hide the transcript

Hopeless to Thriving Blind

Wednesday, September 25th, 2019

Kristin Smedley on stage
When Kristin Smedley was told her first son was Blind the doctor said there was no hope. Hear about her journey which took her from a lack of information to writing Thriving Blind: Stories of Real People Succeeding Without Sight.

Hear what sparked her journey, lessons for others impacted by vision loss and how you can see her at a live event geared to those adjusting to Blindness.

Listen

Resources

Transcript

Show the transcript

TR:

Welcome to another episode of Reid My Mind Radio.
A podcast made for those adjusting to any degree of vision loss – meaning low vision to total blindness. You know this includes family and other loved ones too, right? It’s not just for the individual personally experiencing the loss.

My name is Thomas Reid, host and producer of what I’d like to think is your favorite podcast. Well, I have to believe that in order to achieve that, right?

Today we’re looking at vision loss through the lens of a mom who’s children were born Blind. Exactly what did she think when she received the diagnosis? What changed her perspective?

Audio: Reid My Mind Radio Intro

I am Kristin Smedley. Author of the new book Thriving Blind: Stories of Real people Succeeding Without Sight.

TR:

Kristin, spelled with two i’s is a mom of three.

KS:

Two of which are Blind due to a mutation in the CRB1 Gene causing leber’s Congenital amaurosis.

I started the work that I do because 19 years ago and 16 years ago professionals told me there was no hope for my sons.

[TR in conversation with KS:]
Isn’t that amazing though, they have the title of professional and they’re saying those types of things; no hope. I hear these stories so many times and in so many different ways and it always comes down to a lack of information on the side of the professionals.

KS:

In 2019 to still say there’s no hope; You know doctors are told to do no harm, it’s harmful to a family to tell them there’s no hope. They don’t know what to tell them. But it is lack of education and lack of information. That’s why platforms like yours are so incredibly important and I’m so grateful because getting the word out and getting the stories out in as many different ways and media as we can, really closes the gap on that information education issue.

TR:

Fortunately Kristin did gain access to that information, but it didn’t happen overnight.

KS:

All I knew about blindness was really nothing at all.

I knew of Stevie Wonder and Ray Charles as most of us do. When I was a kid growing up there was the show little house on the Prairie where the one sister went blind. I still remember the horrific episode. My family was just rocked watching that and that’s how we felt about blindness. And that still didn’t educate much about blindness. I had no information. I had no story or person to go to that they had the same thing and they were doing okay.

TR:

The fact that the entertainment industry really does have such a power to impact our perception is why representation matters.

I’m reminded of a quote:
“It ain’t where you’re from, it’s where you’re at.”

– It’s from one of the all-time greatest MC’s, Rakim.

Meaning, we all have a history but what are you doing right now, today.

The history?

prior to learning her first son Michael was blind, Kristin says she was living the perfect life. A large house, manicured lawn, SUV….

KS:

I had worked my whole life to achieve all my goals and they were all coming true.

[TR in conversation with KS:]
I know that you said you were an athlete.

KS:

Yeh!

[TR in conversation with KS:]
I look at specifically people who are athletes and I think they come to disability from a certain perspective and I wonder how you as an athlete kind of thought about disability. So when your son was blind did that make an impact from that perspective?

KS:

You know it’s so interesting and I so appreciate this conversation because nobody in all the interviews I’ve done nobody has asked me about this from an athlete’s perspective. And honestly I think that that was the biggest thing that was crushing for me because my whole life from the time I was maybe six years old had been athletics. I was on every field. I tried everything, it’s like it’s in my DNA. I still at almost 48 years old, three days a week I’m up at the park kicking a Soccer ball around. It just makes me happy and then I thought oh my God, he will never experience the incredibleness of team sports and what athletics can do for a person. That was the biggest crushing thing for me.

TR:
Audio: It ain’t where you’re from, It’s where you’re at!” from “I Know You Got Soul”, Eric B. & Rakim

Today, Kristin is in a much different place.

[TR in conversation with KS:]

You are scheduled to speak at the PCB Conference; Woo, woo! (Laughs…)

KS:
(Laughs) I’m excited!

TR:

And so is PCB.

Specifically, Kristin is a part of the SPARK Saturday lineup. This event is geared to teens, adults, & parents of Children with Blindness or Vision Loss!! It’s a means of helping anyone impacted by vision loss with finding self-confidence, peer support, , Resources, & Knowledge

I asked Kristin to summarize her message to the different audience groups.

First, other parents of Blind children. This includes both those like Kristin who’s children were born blind and those whose children lose their sight later.

KS:

Regardless of what the journey is, I know that it is hard to say okay let’s get all the tools and resources that they need. let’s let them figure out what it is that they’re hopes and dreams are going to be because a lot of the kids come crashing down to because their hopes and dreams they had for their lives have to change.

If you at least face it to the point that let’s get the tools that they need so that they can still manage at school and do well and have a level playing field. Then let’s take a look at okay how do we need to shift their dreams and the things that they want to work on

TR:

the circumstances are specific to parents and children but the idea of accessing the right tools and eventually re-evaluating goals is relevant to us all.

Also important, attitude.

KS:

If your child is seeing you in devastation then there’s a devastation they take on also, so you got to do everything you can even though it is so hard.

If you’re honest with the kids and you’re on the journey with them and you’re their number one fan and their number one advocate and you also realize that friends are going to turn away, and the friends come back, the really good ones come back, it’s all steps in the journey. But if you can stay with them, get them every single tool and resource they need and let go of some of those hopes and dreams for a while and then tweak them you’ll get there faster and a little easier.

TR:

Addressing that second audience group, adults including spouses adjusting to vision loss, Kristin gives an example from Thriving Blind: Stories of Real people Succeeding Without Sight, her new book and resource to help ease the journey of adjusting to vision loss.

KS:

I always say this, I can never put myself in their shoes because that didn’t happen to me. But I will turn them on to Chris Downey. He was an extremely successful architect, fully sighted. At 45 I believe he had something health wise happen. They nicked his optic nerve and woke up completely blind. He was like everybody gave up and said that his life was over but he had a 10 year old son. His son at that point tried to get on a travel baseball team and didn’t make it and he kept talking to him about that you got to pivot and work and get over it and all that when things change. He said how could I give my son all that advice all these years and now I’m just going to sit here and sulk. Within a month of waking up completely blind he was back to work as an architect and he’s more in demand now then he was as a sighted architect.

[TR in conversation with KS:]

What about a general audience who’s not that familiar with blindness but yet they are interested in experiences other than their own?

KS:

I talk about the 70 percent unemployment rate, only 30 percent of Blind kids are graduating High School and 14 percent of college. It actually has nothing to do with blindness. It’s the general public and access to resources that’s the problem.

The fact that major companies are having to go into law suits to make their web sites accessible for Blind people in this day and age is uncanny to me!

When you back up the problem is perception. Most people perceive blindness to be completely devastating and horrific and they don’t even want to consider it because it’s so awful. My whole Facebook is about all the goofy silly regular things that my kids do alongside the extraordinary things that they do.

The general public’s perception needs to shift. People still thrive if they have sight or not.

TR:

That’s a long way from the images she once saw on Little House on the Prairie. So how exactly did she get to this idea of Thriving Blind?

First, while pregnant with her second son Mitchell, she was still learning to accept that her 3 year old Michael was blind. On this one particular day she found herself, I guess you can say bargaining.

KS:

I said to God, Dude you’ve known me for all these years. You know that will break me. You and I both know that I don’t have it in me to do this twice so let’s just call it a deal right here. And this one’s going to be sighted and Michael will be fine.

TR:

In the movies, this is where something far out of the ordinary happens. But in real life the signs tend to be right in front of our face.

KS:

Then Michael bounced into my room like he did every day. Every day of his life he was bouncing and smiling and singing so it was no different that morning.

TR:

The difference, Kristin was in the right place to recognize the message Then, little 3 year old Michael said:

KS:

Isn’t this the best day ever!

The sun is up and I’m playing with all my toys and gosh I’m just so happy!

And then it was like a lightning bolt… I’m looking at him bounce right down the hallway and I thought this kid couldn’t care less about the challenges he’s facing. He didn’t see them as challenges. He figured out to that point everything he needed to do with a smile on his face at all times and that’s when I said alright you know if you’re going to do this to me twice then you’re going to have to send me every person, every resource because we both know I can’t do this alone. And from that moment on it was like weekly, daily I swear now it’s hourly by the minute a new person comes into my journey, a resource comes across my email. It is nonstop.

TR:

Meeting the people and learning of resources led Kristin to an understanding.

KS:

Who am I to sit on all that information and not turn around and share it because people were constantly calling me and messaging me saying how did you do it?

TR:

her answer to that question is the book Thriving Blind. One of her goals;

KS:

I want every specialist to hand that to a mom that was like me, nowhere to turn, never met a Blind person before had no idea of the possibility and put that in her hand. It’s the resource that I never had. The optimism that nobody could hand me; that’s what Thriving Blind is.

TR:

This shouldn’t be news to anyone but a change in attitude doesn’t fix everything. For example, while her children are all indeed thriving; Kristin says the feelings return.

But now she has a new way of handling them.

KS:

I sit in those feelings. What is it all about? And then realize it’s fear of the unknown.

I’m definitely not without moments of slipping into that pit again. I just have a way better system now to get me out of it.

TR:

An extremely honest and important reality for anyone in the midst of an adjustment to
understand.

KS:

I beat myself up a long time over those first three years of sitting and crying on my couch. I think you’re exactly right now that I think about it. Gosh, my heart is exploding because maybe the thing is I had to be so devastated that I had nowhere else to go and that’s why I had that moment of surrender the way I did.

[TR in conversation with KS:]

Again, always thinking about the person adjusting to vision loss, that’s what I’m doing, I remember my experience like you just said beating yourself up. I remember kind of beating myself up but it was like nah you are making progress but it was hard to see it. I guess I just always want people to know who are in that process that, nah, keep walking that journey because you’re going to get through. You got to keep moving forward in order to get through it.

TR:

A change in perception, a chance to meet others who have successfully walked a similar journey, access to resources; all ingredients to Thriving Blind.

Similarly, this is what you’ll get at SPARK Saturday where You’ll hear from Kristin Smedley herself along with Founder of Bold Blind Beauty and Co-Founder of Captivating Magazine, Stephanae McCoy, Dr. Andre Watson and yours truly kicking it off on October 19, 2019.

You can find links to this event on this episodes blog post at ReidMyMind.com. I’ll also link you to Kristin Smedley.com, , her TED Talk and of course Thriving Blind: Stories of Real people Succeeding Without Sight.

KS:

Paperback and Kindle versions available on Amazon with the audio version coming soon. And the electronic Braille format, the BRF file is available at KristinSmedley.com thanks to an incredible donation from the CEO of T-Mobile, it’s available at the same price of the Kindle version, $9.99. We’re working on the printed Braille version. That’s been an interesting journey, getting printed Braille in this country.

[TR in conversation with KS:]

Are you reading the audio book?

KS:

So the big surprise is that I’m reading it but my son Michael is doing all of the male interviews. He’s reading theirs.

# Close

TR:

Shout out to Kristin and her kids, Michael, Mitchell and her daughter Karissa.

KS:

Michael’s the oldest, but Mitchell would probably want me to point out that Mitchell’s taller than Michael.

[TR in conversation with KS:]

I love it when the youngest is taller than the oldest one. I’m a younger child.

KS:

Well I’m sure that my daughter would probably want me to point out that she’s the youngest but she’s the tallest.

[TR in conversation with KS:]
Oh, look at that. Okay, go head girl!

TR & KS laugh…

TR:

And if you haven’t yet, you should really go ahead and subscribe to this podcast wherever you like to listen. Apple, Spotify, Google or your favorite app.

You can always visit www.ReidMyMind.com, that’s R to the E I D like my last name!

Audio: Reid My Mind Radio Outro

Peace!

Hide the transcript

Let’s Stop Sleeping On Sleep

Wednesday, July 3rd, 2019

In this episode, I’m considering how we look at sleep and the impact that the lack of it can have on the adjustment process.

TReid sleeping on a large rock during a bright sunny day while in the background the Niagara Falls flows.

Courtesy of Raven Reid

I share some of my own experience with Non 24 Hour Sleep Wake Disorder and how that can impact the adjustment process and subsequently a person’s independence. Find out how The Dave Chappelle Show relates to all of this.

Just in time for an independence celebration!

Listen

Transcript

Show the transcript

TR:

What’s up Reid My Mind Radio Family?
It’s your brother T.Reid here bringing you another episode of the podcast. You know the one that brings you stories or profiles of compelling people impacted by blindness, low vision, disability.

Today’s episode is one of the occasional times when I share my own experience adjusting to blindness.

It’s one of those things I think many people who are blind deal with but for those of us who become blind as an adult, we really notice the difference. Well at least that’s my experience.

That’s up next!
Let’s go!

Audio: Reid My Mind Radio Theme

TR:

When we talk about the loss of access to things that impact a person’s quality of life following vision loss, transportation, information and career opportunities come to mind.

Here’s one we don’t often consider

Audio: “No Sleep” from “No Sleep til Brooklyn”, Beastie Boys

TR:

Sleep!

Audio: “Last Night, I didn’t Get to Sleep At All”, The Fifth Dimension

TR:

In 2004not too long after becoming Blind, I began having problems sleeping. Real problems. Not falling asleep but rather staying asleep at night. The consequence was I had problems staying awake during the day.

Usually late morning around 11 AM, my body would let me know it was preparing to go to sleep and there would be nothing I could do to stop it. I’d feel my temperature suddenly drop often to the point that I’d shake with chills. I’d struggle to make it to my bed where I’d often fall across rather than in.

It wasn’t just that I was too tired to get into the bed, but I didn’t plan to sleep for long.

Getting into the bed in the middle of the day well I thought that would make me be considered lazy and unproductive.

Prior to 2004 one of my motto’s was I’ll sleep when I’m dead!

Yeh, I was that guy!

Following years of my body being deprived of sleep, I honestly believed the lack of sleep would eventually kill me. I stopped going to sleep as often in the middle of the day. Not because I didn’t feel the need, nah, I had to stay awake when I returned to work.

Working from home, honestly, I could have rigged away to make sleep during the day possible. Occasionally I’d find myself waking up 20 – 30 minutes after putting my head down on my desk for what I thought was a few seconds.

This pattern continued for years.

Even though I was working from home, for me, my body’s need for sleep felt like laziness because I was uninformed.

Fortunately today we have a name for this; Non 24 Hour Sleep Wake Disorder or Non24 for short.

Basically… we all have a master body clock that gets reset every day by environmental light that’s detected by the eye and signals the brain There’s an access issue. For those who are totally Blind, the method to get the reset signal to the brain no longer exists.

Rather than getting into specific details of Non24, my purpose today is to share my experience specifically for those impacted. That’s the person who is now blind as well as their family members or those they live with who will inevitably be effected by the mood swings, the difficulty concentrating and the almost narcoleptic like sleep attacks.

I’m here for those who are constantly falling asleep during family get togethers, trips to the movies or even worse intimate conversations.

Someone who loses their sight for whatever reason, chances are they’re dealing with reduced independence, , possibly loss of a job and often even friends and loved ones who may no longer come around.

Audio: “Sweet Dreams” The Eurhythmics

TR:

I looked forward to sleep in the early days of my vision loss.

My dreams gave me access. I could freely walk without a cane or guide, easily finding people and things without a need for assistance and even regaining the anonymity I no longer seemed to have in public spaces during my time awake.

Sleep wasn’t about escaping my reality, rather it was a way to help process all of the things running through my mind. Waking up after a full night’s sleep is what helped me eventually realize I didn’t lose as much as I thought I did.

I’m no scientist, but I’d bet there’s a relationship between good sleep, hope, possibility and optimism.

I had several opportunities to talk with others about their experience with Non24. Those who were either congenitally Blind or Blind from a young age often just assumed their experience was the norm.

Several people who grew up attending schools for the Blind shared the experience of being chastise by teachers for falling asleep in class.

Others recalled how some of their most productive time growing up was during the night when they should have been asleep. These are probably some of the same people who today as adults feel their productivity is increased because they make good use of their time awake in the middle of the night while others are asleep.

I’ll never forget a young lady’s story of working at a call center where she would sometimes uncontrollably fall asleep only to have her supervisor whack her on the hand with a ruler or some object. She desperately wanted to keep her job, but her sleep cycle was off more than it was on during any given month.

It’s more than sleep!

Audio: “The lion Sleeps tonight”, Ladysmith Black Mombasa & The Mint Julips

I know people in my circle at times felt I had a bad attitude and probably attributed that to just me now being Blind and angry.

Yes, I was moody! I wasn’t getting the rest that my body desperately needed.

Blind people have been dealing with this for lifetimes.

I dealt with it for about 8 years and reached a point where I just knew I couldn’t take it anymore. I was literally losing time. Meaning I’d fall asleep and have no idea I fell asleep.

I wonder about that stereotype of the angry Blind guy. He just may be the sleepy Blind guy!

I’m not making any excuses for moodiness or bad behavior. We all have to be responsible, but for those going through it, Non 24 or any significant consistent sleep deprivation for any reason can feel like you no longer have any control.

Audio: Comedy Central Promo for Dave Chappelle Show

TR:
One night, I wanted to watch the Dave Chappelle show on Comedy Central. It was about 10:25 and the show aired at 10:30.

I sat on the edge of the bed in front of the television in a very awkward position. I knew if I laid in the bed and tried to wait for it I’d fall asleep with less than 5 minutes before the start of the show.

Audio: The Dave Chappelle Intro Music

TR:

Finally it was 10:29 and the Comedy Central voice over announced the show was up next.

Yes!

With only about 20 seconds left before the start of the show I thought, I made it.

There was no way I’d fall asleep during the show because I knew I’d be thoroughly entertained. As I sat in this awkward position I decided to stretch my back and quickly laid back on the bed during what I figured was the final commercial before the start of the show.

Audio: The Dave Chappelle Show begins in normal speed and is sped up.

TR:

I fell asleep in probably less than 20 seconds and remained knocked out for a half hour.
– Applause
– Dave Chappelle Show Closing…

TR:

The next thing I knew, I heard the closing of the show.

– No, No, No! TReid….

Audio: The Dave Chappelle Show closing harmonica!

TR:

Eventually, I’d come to find this story funny.

At the time though it really hurt because I realized I truly had no control over my sleep.

If it was just about missing a television show that wouldn’t bother me much but I was noticing small gaps in my memory. I was struggling to create and focus. The mood swings were impacting my family.

Finally, in 2012 I joined the Sleep Study that lead to the release of a drug to help those with Non24.

This episode isn’t about promoting the drug to help those with Non24.

However, my business manager says we are open to endorsement deals and a name and number can be inserted for future episodes if interested.

The business manager can be reached at reidmymindradio@gmail.com.

You may wonder what exactly prompted me to talk about this now. I you caught the timeline, I began experiencing Non24 in 2004 and said it was 8 years later when I reached that rock bottom.

Some changes in insurance this year and some good old fashioned bureaucracy left me without a way to manage my body’s Arcadian Rhythm.

I found myself once again experiencing some of the same problems. Yes, a bit of moodiness, drifting to sleep and some real brain fog that makes concentrating a real chore. I’m still finding my way out of that fog. Once again, I’m dreaming.

Audio: “Dream”, Pharaoh Monch

TR:

Finally,, let me wish all of you a very Happy Independence Day.

I’m not really talking about celebrating the Fourth of July and the signing of the Declaration of Independence. I’m talking about those who have experienced severe vision loss at any time. Those who experienced an acquired disability.

Those who find that they now have to do things differently, no matter whether that means using a form of technology, a technique or personal assistance.

I’m speaking to those who may have been born Blind or disabled and continue to assert their independence or work towards gaining more.

or came to a realization that their individual independence was reduced and decided to do something to gain or regain as much as possible.

Independence is defined by the individual. I can’t tell someone what should make them an independent person.

Whatever it is, sleep deprivation can negatively impact any activity and therefore can reduce a person’s independence.

If you find yourself dealing with this, I guess I just want you to know you are not alone. I know I felt that way at 1, 2 or 3 AM sitting up while it felt as though the rest of the world was asleep.

I’m not telling you what to do. Some people find over the counter remedies like Melatonin help them. Others alter their lifestyle and say it works for them. I have what works for me and I just hope you too can find something to work for you.

Again, I’m not recommending anything, but I am open to having a conversation that would include my specific recommendation or at least me sharing the name of what works for me. At least this is what my business manager recommends.

If you deal with Non24 or some other sleep disorder and have a specific method that works for you I’d love to hear about it. Let me tell you how to contact me… but before that a brief reminder there’s only one way to make sure you don’t miss an episode…

**

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You can always visit www.ReidMyMind.com, that’s R to the E I D like my last name!

Audio: Reid My Mind Radio Outro

Peace!

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