Reid My Mind

Audio: Sounds of microphones being touched…

Marlett:

I am not touching the microphone or the stand.

[TR in conversation with Marlett:]

Do you see me touching the microphone?

(Long Pause)

And I’m a professional! (Laughs…)

Marlett:

You heard my feet.

[TR in conversation with Marlett:]

What?

Marlett:

you heard my feet, I did this…

[TR in conversation with Marlett:]

Oh, don’t do that.

Marlett:

Ok!

TR:

What’s up Reid My Mind Radio Family! My name is Thomas Reid. I’m the producer and host of this 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.

If you are newly impacted by blindness and you found the podcast, first of all welcome. Secondly, I think you’re going to like it here.

Today’s episode does include my wife Marlett. Ever since the last episode titled Celebrating 15 years of being Blind, I received some feedback from people who enjoyed hearing from her. I made the mistake of letting her know that. As you’ll see here today, it may have went to her head.
Despite that, I asked her on because, well, I’m a great husband.

That’s my story and I’m sticking to it!

Audio: Reid My Mind Radio Intro

TR:

Let me start this off with a warm virtual hug for you all. It feels like every day the idea of normal is pushed further and further. What we would have expected and accepted seems to be a continuous slide in the wrong direction. Specifically,
putting kids in cages, the death of 80 thousand people in two months or racists shooting an innocent young Black man.

Our responsibility, is not to accept it. not to simply act like it is normal.

On this podcast, I don’t often go into politics or current affairs except when I feel it relates to the process of adjusting to blindness. These connections are from my perspective. It’s called Reid My Mind Radio after all.

So when is a good time to accept a new normal?

Right now, just about everyone on this planet is dealing with a new normal. Although we’re all experiencing this pandemic differently, we’re doing it together.

There’s a similar feeling around acquiring a Disability. Now, I’m referring to all of those impacted; parent, child or spouse for example.

Similar feelings but there are some real differences between what is being felt during the pandemic and the experience of disability. For one, the entire world isn’t analyzing it on every news channel. There aren’t easy ways to gain multiple perspectives. It’s more likely something the family goes through alone. Hopefully it’s a real opportunity for that family to become a unit a real team.

I’m on this journey with you so I get it. And so does my wife, Marlett. I invited her on the show to get that team perspective from someone impacted by blindness.

[TR in conversation with Marlett:]

What I noticed from the last time is that if I ask you to introduce yourself you have a big production necessary for the intro and I don’t think I’m going to do that this time. Laughing…

Marlett:

Ok!

Audio: Intro from Celebrating …

Audio: “The Baddest Chick”, Trina

[TR in conversation with Marlett:]

Can you please just state your name for the record?

Marlett:
Marlett Reid

[TR in conversation with Marlett:]

And who are you?

Marlett:
I’m the baddest chick!

Audio: As the music gets louder …

Marlett:
I’m your wife!

The music continues.

Now back in the present.

[TR in conversation with Marlett:]

Laughing… You want to introduce yourself anyway?

Marlett:

My name is Marlett Reid, currently writing a book so it’s going to be M.E. Reid.

[TR in conversation with Marlett:]
Laughing… you’re here to promote your book? Laughing…

Marlett:

Laughing…

TR:

Ok, when my wife does publish her book, I’m not only buying a bunch for the RMM Radio family, but she’s definitely coming on the podcast. And that I tell you right now, will be the best episode I ever produce!

It’s not always the case, but Marlett and I shared some perspective around this idea of finding the new normal.

[TR in conversation with Marlett:]

When your life is uprooted because that’s what everybody kind of is really saying…

Marlett:

Right, right.

[TR in conversation with Marlett:]

And then now you have to start to see what is going to be the new normal. And I’m saying that we’ve …

Marlett:

Yeh, we’ve been there.

[TR in conversation with Marlett:]

The difference to me is that while we were doing that everyone was still living their normal. It felt like we were the only ones doing that because it was just impacting us and our family. Do you see any parallels between what we’ve been through and what’s going on right now?

Marlett:

Nothing new to us. Trying to figure out what to do coming up with new ideas of entertaining the family. Picnics in the living room or family night movies.

Social distancing, that’s funny to me because no one really came around We understood about social distancing people were doing that to us for quite some time. Distancing themselves from us.

[TR in conversation with Marlett:]

Damn!

Marlett:

Well it’s true.

[TR in conversation with Marlett:]

Mm Hmm… (In agreement)

Marlett:

They were distancing themselves. If we went to a party they did social distancing there too.

[TR in conversation with Marlett:]

Laughs…

Marlett:

We would be in a corner or we’d be in one side and they’d be on another side. They just didn’t have a mask.

TR:

At least not one that was visible.

Audio: Plane taking off…

At the time of this conversation, I was in the process of producing what will be the next episode of the podcast featuring Mona Minkara and her Planes Trains and Canes production team.

The documentary series which can be found on YouTube follows Mona who is Blind, on a journey to 5 different cities around the world where she travels alone using public transportation.

I’m encouraging you to check out the series which I’ll link to on ReidMyMind.com.

I was curious to see what if any parallels Marlett would draw after an explanation of the documentary’s concept.

That is the resulting encounters a Blind woman receives as she’s recorded on video while traveling through an airport or subway.

Marlett’s perspective wasn’t what I expected, but it’s definitely understandable how she got there.
Marlett:

It made me think of African Americans, really. When they try to navigate or go through life, how people treat them.

[TR in conversation with Marlett:]
Them? Are you Black?

Marlett:

How people treat us!

[TR in conversation with Marlett:]

Laughs…

Marlett:

Walking into a bank or walking into a store or walking in a neighborhood.

Audio: YouTube…

“No Justice No Peace!” (Repeats while clips from a news reporter plays…)

“Arrests in the shooting death of a jogger in a Brunswick neighborhood for killing Amaud Aubry. The charges; murder and aggravated assault”

TR:

Perspective matters!

This conversation was on the heels of this latest senseless racist murder of Amaud Aubrey.

(Pause)

When it comes to adjusting to blindness, Marlett and my family are O.G’s in this game!

Marlett:

We have our thing down. We already know what’s going on like I know people talk to me instead of you and I know how I handle that.

[TR in conversation with Marlett:]

Alright so give me an example of that.

Marlett:

If we go, anywhere you have to do something, they’ll talk to me.

[TR in conversation with Marlett:]

If somebody asked you for an example of that, is there any specific one that you would give. I’m curious to see if it’s the same one.

Marlett:

We went to go vote.

[TR in conversation with Marlett:]

Oh my gosh!

Marlett:

The woman said you can bring him over here or something, you can correct me if I’m wrong but something to that affect. You spoke up. You said whatever it is that you wanted to say.

[TR in conversation with Marlett:]

I don’t know if I said something or whatever? I probably said something…

Like oh you could talk to me. That’s probably what I said. So it wasn’t until after I got out …

Marlett:

And she said, I shouldn’t have done that. I liked her apology and it was to you. I don’t think she ever did that again.
[TR in conversation with Marlett:]

You’re right so we’re good. Like we’re real good. Like I say hello she says hello and it’s cool. It’s all good. That was a nice interaction because it came out where she got it like immediately.
Do you remember the first time. You might have not noticed it even happened the first time.

Marlett:

Maybe like the first time it happened I didn’t really think about it. Maybe about the third or fourth time I probably thought about it more. I think you and I spoke about it. You knew it was taking place and so you would just speak up real quick but then I think after we talked about it and I was like well I’m not going to say anything , you can just take your time in answering not just jump in there.

TR:

Y’all hear my wife’s way of trying to tell me to chill. That’s cute right! I know it’s because she doesn’t want me to be upset, but ignoring it doesn’t make it go away.

I know I shouldn’t take things personally, but having someone talk around me while I’m standing right there? Remember, I said there are things we should never accept as normal, this is one of them. My recommendation?

Marlett:

You would speak on it or be vocal about how it made you feel, but not like it caused tension between us.

I never answer for you. I won’t answer for you. I will walk away or I’ll turn and look at you for you to respond or I will look at my phone.

TR:

Marlett is so great with these situations now that Every time this happens , I almost feel sorry for the perpetrator. I can feel their confusion. If I am feeling let’s just say a bit feisty, I’ll let them hold onto their confusion and embarrassment for a little while. You brought it out, you hold it! It works, they get it.

It’s a cool play that Marlett and I execute well together.

Marlett:
We still have hiccups.

In the beginning it was a lot of hiccups there because you were used to taking the bags and just going. Boom!

What works best for us when we travel is if we discuss it beforehand. When we freestyle we generally tend to have some hiccups.

TR:

Now first of all did you notice how Marlett made it sound like I was the cause – as in, you were used to taking the bags and going.

Marlett:

Boom!

TR:

She’s right! But truthfully we were both used to that.

She’s also right in the need for us to all be on the same page. Communicate the plan before trying to execute.

On this team, we each have to play our role at any given time.

Our roster includes two more players – our girls.

Marlett:

When they were little that was a little harder. Usually they walked in front of us Riana would hold her sister’s hand and they would walk in front of us. Sometimes behind us and I would glance back occasionally just to make sure they were still with us.

[TR in conversation with Marlett:]

I remember that was a thing because I would always ask you where the girls? (_Laughs…)

Marlett:

Yeh!

TR:

They’re 16 & 22 now. Amazingly, Marlett is still hovering around 32.

Traveling with them today?

Marlett:

The girls leave us!

They’ll make sure that we don’t have anything to hold us up. All we have to do is to get where we have to go. They’re more intoned to what works to get us to where we need to go. Like when we went on the cruise, they took the bags.

[TR in conversation with Marlett:]

I had a bag.

Marlett:

You wouldn’t give up your bag.

[TR in conversation with Marlett:]

I know, yeh, I’m not giving up my bag.

Marlett:

You’re not going to give up your bag that easily. You still got that machismo.

[TR in conversation with Marlett:]

Oh, wait we’re gonna go there? You think that’s machismo? That’s alright, I don’t have to go into that because you’re wrong and I don’t want them to be all like oh my goodness Marlett we don’t like her anymore.

Marlett:

Some weird laugh that basically translates to whatever! Ok!

TR:

Ok, despite my lovely wife’s incorrect assessment that I have even an ounce of machismo, her lessons here can be helpful no matter who makes up your team.

For example, producing Planes Trains and Canes requires a real team effort. You can hear all about that in the next episode of this podcast.

Before that episode drops on June 2, go check out Planes Trains & Canes. It’s not necessarily a pre-requisite but we do dance around some specific scenes from the documentary series.

I’m also curious to see if we see similar parallels between the show and adjusting to blindness.

Marlett:

I feel like if you’re traveling with someone who is Blind , you two should have a conversation. What makes each one comfortable?

In the beginning when this all happened I was I think in my feelings. I don’t think I really thought about you or me but more so how everybody else was looking at us. Once I got over that part, which I’m not fully over it, but for the most part I am; we work better!

TR:

Adjusting to blindness is not really a place you arrive but rather an ongoing journey. You either decide to take it or find yourself well not really going anywhere.

[TR in conversation with Marlett:]

What would you say goes into being able to accept a new normal?

Marlett:

Understanding you can’t change anything so you got to make it work for you. You know the pandemic came around, there’s nothing we can do about it, there’s no cure. The only thing at this point is you got to stay away from people so that is going to be our new normal. Handle it! Things always change that’s life. Nothing ever stays the same, you got to change with the times.

[TR in conversation with Marlett:]

… That’s real talk!

It doesn’t sound like you’re very compassionate about it . Like I thought you might be a little more compassionate.

Marlett:

I am being compassionate. I’m telling you the truth. I’m trying to get you to get over it quickly. Pull off the Band-Aid. It is what it is. I could hold your hand and we can go through it but…

[TR in conversation with Marlett:]

See I don’t understand why you can do that but when I do that you’re like (mockingly) Tommy! (Laughs) ]

I’m just going to put this out there because I try to tell everyone I’m the compassionate one in the family.

Marlett:

Exhales… Uh Lord!

[TR in conversation with Marlett:]

And I think I just got proof of that. It’s definitely evidence.

Marlett:

I realized one thing about this pandemic, this whole thing with the Tick Tock.

[TR in conversation with Marlett:]

Oh God! Laughing…

Marlett:

But wait a minute. This whole thing with the Tick Tock!
[TR in conversation with Marlett:]

Hold up, hold up, hold up! I don’t know if everybody knows Tick Tock.

Marlett:

Well Tick Tock is this app where the older generations are dominating this app. I think a lot of people know about Tick Tock. But the great thing about Tick Tock is that…

Audio: Marlett continues with volume lowered….

TR:

Reid My Mind Radio Family, I need your help. I think my wife has an addiction to Tick Tock. If you don’t know, it’s a pretty popular app now that was pre-pandemic considered for the kids. It enables quick short videos often consisting of lip singing or short dance routines.

I’m going to spare you as she tries to rationalize her obsession with claims of this app building bridges.

I’m not saying it’s not true, because honestly, I don’t really use the app. the majority of the content that I’ve come across is predominantly visual and audio description is not an option.

Even the killer content I made with my youngest Raven, a highly sophisticated and intricate dance routine, had no way of including description.

[TR in conversation with Marlett:]

Yo whose the Tick Tock Killa?

Marlett:

That would be you Thomas. (Said very sarcastically!)

[TR in conversation with Marlett:]

That’s me, the Tick Tock Killa!

I think you only like Tick Tock because you like to say Tick Tock. I think that’s why this app is actually doing so well because people like to say Tick Tock.

Marlett:

Tick, Tock!

[TR in conversation with Marlett:]

I should have named my podcast Tick Tock and I probably have a whole lot more people listening and subscribing, you know what I’m saying?

Marlett:

I don’t know maybe you’re right. I do like Tick Tock. Yeah!

[TR in conversation with Marlett:]

I ask people to subscribe…

Marlett:

It’s the way you ask people… (she fades her own voice out)

It’s the way you do it! You have to ask…

[TR in conversation with Marlett:]

Wait up, first of all how do I do it? That it’s the way I do it.

Marlett:

I don’t know how you do it, but it’s not the right way. I’m just saying it’s probably not the right way.

[TR in conversation with Marlett:]

How can you say it’s the wrong way. Oh my God! (Laughing hysterically)

Marlett:

So I’m going to ask everybody to subscribe. And leave me a little heart emoji or a smile or say hi Marlett. (Spelled out)

[TR in conversation with Marlett:]

Where are they going to do that?

Marlett:

At ReidMyMind.
my content

[TR in conversation with Marlett:]

Dot com you’re talking about? You want them to subscribe and leave a comment on the episode page?

Marlett:

Yeh!… Yeh!

[TR in conversation with Marlett:]

Now I’m gonna tell you right now…

Marlett:

Yeh! I would like everybody to say hi. I would love it. I feel that energy it would just make me so happy. Just, just tell me hi!

[TR in conversation with Marlett:]

Long pause…

Do you know how many times I ask people to subscribe, to reach out?

Marlett:

And Subscribe…

[TR in conversation with Marlett:]

I give the phone number. I get some people, but you think you’re going to get…. (Laughs…)

Marlett:

What’s so funny?

My energy and their energy. They’re feeling my energy and they’re going to go and subscribe and they’re going to say hi Marlett.

[TR in conversation with Marlett:]

So what’s the matter with my energy?

Marlett:

Hi Marlett. (Name spelled out)

[TR in conversation with Marlett:]

What’s the matter with my energy?

Marlett:

And I’m going to say hi right back. And I’m going to send emoji’s and everything. Yeh!

[TR in conversation with Marlett:]

Ok!

Marlett:

Cause I have an awesome energy.

[TR in conversation with Marlett:]

Ok, I hope you’re right

Marlett:

I’m right!

[TR in conversation with Marlett:]

Exhale….

Marlett:

I’m right!

[TR in conversation with Marlett:]

On the real, I’d be jealous. I’m not going to lie. I’d be a little jealous. I’m not going to hate though. I don’t think they’re going to do it anyway.

Marlett:

Laughing… Alright!

[TR in conversation with Marlett:]

Cause I know you’re only doing this because you lost the Tick Tock battle, because you never did it because I won the Tick Tock battle.

Marlett:

Exhales….

I didn’t do the Tick Tock because I didn’t want to hurt your feelings.

[TR in conversation with Marlett:]

I killed that joint! If I have an audio described Tick Tock, Bee, I’m killing the game! Put some audio description on my Tick Tock, and then everybody be like Yo! Tick Tock Killa, T.Reid… Tick tock Killa!

Marlett:

You know, speaking of audio description…

[TR in conversation with Marlett:]

Alright, thank you babe!

you’re trying to take over the podcast now I can tell.

Marlett:

I’m not done.

[TR in conversation with Marlett:]

Excuse me!

Marlett:

I’m not done.

[TR in conversation with Marlett:]

Laughing… what? Laughing…

Marlett:

Why are you trying to kick me off . You know what it is right?

[TR in conversation with Marlett:]

What?

Marlett:

He’s jealous. (Long pause)

Because the shows I’m on do so well. Mm hmm. Because I’m on it.

[TR in conversation with Marlett:]

Laughs…

Marlett:

It’s that energy.

[TR in conversation with Marlett:]

Laughing…
The energy that’s going to get people to do what?

Marlett:

They’re going to go and they’re going to subscribe

[TR in conversation with Marlett:]

Umm hmm And how are you going to know they did that?

Marlett:

Because they’re going to leave me a little note and it’s going to say Hi Marlett! (Named spelled out again)

[TR in conversation with Marlett:]

You know you got that spelling thing from me right?

Marlett:

I think you got it from me. Yep!

[TR in conversation with Marlett:]

Laughing…

Marlett:

So make sure you go, Reid My Mind Radio!

[TR in conversation with Marlett:]

Where can they go to subscribe?

Marlett:

Anywhere that has podcasts.

[TR in conversation with Marlett:]

And then what’s the website?

Marlett:

ReidMyMind.com

R to the E I D

(Audio: “D and that’s me in the place to be!” Slick Rick)

Marlett:

Like MY last name!

[TR in conversation with Marlett:]

Laughing… That was good!

Audio: Reid My Mind Radio Outro

Marlett:

Peace

[TR in conversation with Marlett:]

Laughing… There it is. alright, Nice!

You’re trying to get your own podcast. Whatever Bee. I didn’t press record.

Marlett:

That’s not even funny!

Hide the transcript

TR:

Greetings everyone, from at least 6 feet away!

First and foremost, I hope everyone is doing well, and you each are as comfortable as possible. Most importantly staying safe and keeping each other safe by following the recommended protocol.

for right now, I’m going to keep my Corona Virus thoughts and observations to simply wishing you all the best. And reminding you all to protect yourselves physically but also pay close attention to your mental health.

By the way, my name is Thomas Reid host and producer of this podcast where we bring you compelling people impacted by all degrees of blindness and disability. Occasionally, I share my own experiences as a man adjusting to becoming Blind as an adult. All of this by the way has been brought to you since 2014 from the safe and sanitized studio located in my home. So really, ain’t nothing new here folks! We’ve been riding ahead of this curve for a minute!
Now, only one way to start this episode…

Audio: Water flowing from sink…

TR sings…

“Wash your hands, Wash your hands, Everybody wash your hands.
Wash your hands, Wash your hands, Everybody wash your hands.”

Audio: Reid My Mind Theme Music

MS:
I’m Matthew Shifrin and I’m a Blind Musician and Inventor.

TR:

You may be familiar with Matthew. He’s received a fair amount of press in regards to his work with Lego. Specifically, his work making Lego instructions accessible to Blind children.

It all began when he himself as a five or six year old child followed a very specific instruction given to him by his close family friend.

MS:

Lilya who later created the text based instructions, she and I were driving back from somewhere , she stops the car and yells “Get out.” Ok, I get out. She says pick up this crate. This crate is like half my body weight. And so we manage to muscle this crate into the trunk of her car and she’s like, “C’mon open it.” I open it and this crate is full to the brim with Lego bricks.
And that’s really how my journey with Lego started.

TR:

Matthew began building Lego sets with the help of his parents.

MS:
Because they could read the instructions and I couldn’t.

TR:

Lego instructions are visual. They’re diagrams detailing how to connect the various pieces completing the design.

MS:

We were mainly building bionicals. , which were these action figures that Lego made. They were very formulaic. If I built one of them, then I could build the rest of a certain type on my own. Those were the only types of sets I could build on my own.

TR:

Building the sets required the help of Matthew’s parents.

MS:

So they’d just say okay you need to find such and such piece. I’d go scrounging around the bottom of the box to try and find something and then they’d say okay well here’s where you put it and I’d put it there and we’d go piece by piece. It would just take 4 to 5 hours to build a $20 set that was 200, 300 pieces.

TR:

While appreciative of his parent’s dedication and time, Matthew recognized the difference between his Lego experience and that of his friends.

MS:

They were building sets all the time. They’d come into school and say hey I built a spaceship yesterday and I’d say oh that’s so great. How did you do it? Then there’d be silence and they’d be like well, I looked at the instructions and they told me what to do and I just followed them. I just remember thinking all this time I wish I could do that.

TR:

In case you’re thinking Lego is just a toy.

MS:

When we look at Lego instructions they really provide a lot of insight into how things are made. How things are built. How mechanisms work.

And when I built on my own I really had none of that vocabulary.

TR:

This was evident from the experience his sighted friends had with Lego.

MS

they could build trains that ran, crossbows that shot actual darts because they were familiar with the engineering concepts that made these devices work.

TR:

Working with his parents gave Matthew[emphasis on some] some insight…

MS:

But as the Blind builder I was just following directions. I had no idea where we were going. yes, I knew it was some sort of frame that we were building but I had no idea what it would end up looking like. As opposed to the parents who did. There wasn’t a lot of vocabulary gained even then because I couldn’t see the instructions on my own I couldn’t flip ahead. I couldn’t imagine structures in my head because I had no vocabulary

TR:

Remember Lilya, the family friend who had Matthew lug that first box of Lego bricks into the car? On his 13th birthday, she brought him the next step in his access.

MS:

She gives me this big cardboard box with a big fat binder. And mind you this binder is thick, we’re talking two copies of the yellow Pages thick. In this binder there are these instructions that she’s hand Brailed on a Perkins Braille typewriter. And in the box is this Middle Eastern Lego Palace. This palace was big, 830 – 840 pieces. these instructions she created completely on her own. She invented her own vocabulary to name every type of Lego piece that was in that set.

TR:

That was the vocabulary Matthew longed for.

MS:

Put a flat 6 by 1vertically on the table. Put a flat 2 by 1 on its rear most button over hanging to the right horizontally. Put a flat 4 by 1 vertically to the front.

I got to a point where I was able to read instructions and imagine what it would be like to build a certain model or a certain sub section. That’s just spatial awareness, spatial reasoning, these sighted skills that are developed over many years in sighted children. The fact that I was able to really visualize on my own was a very valuable skill and I would argue an under taught skill when it comes to Blind children.

TR:

Getting access to Lego instructions was just a part of Lilya’s goal.

MS:

Her goal was that I should have the same experiences as other sighted children. And so she brailed board games, she brailed books. She did all of tshe did all of this stuff, but Lego was just the one thing g that she could not figure out how to make accessible for many many years just because the instructions were pictures.

TR:

Once Matthew gained access.

MS:

I just wanted people to have this resource because I’d benefited so much from it. Not all Blind kids have people that could write instructions for them. Everyone deserves to be able to build and to learn from what they’ve build.

TR:

making this information available to other Blind children required some steps.

MS:

We had to create more instructions, build more develop some sort of language. Make sure that this was durable and then we had to get it out to Blind people. I think Lego themselves were always an end goal but Blind people had to come first because we had to be sure that Blind people could engage in this content as much as I could.

TR:

Realizing the instructions could be produced digitally, eventually led to the website.

MS:

LegoForTheBlind.com where all our instructions live. there’s 30, 40 sets there.

Our end goal was always getting it to a larger entity.

[TR in conversation with MS:]

Would you consider yourself an advocate?

MS

Sure. Advocacy is like a blob, you can shape it mold it. One might argue that lilya making those instructions was advocacy. After she made those instructions and we had that website, I’d always wanted to get it through to Lego but I really didn’t know how to go about it. To infiltrate such a massive company you need to know people.

TR:

His first attempt, contacting Lego customer service didn’t yield any results. But sometimes, all you need is to know someone, who knows someone…
MS:

I was interning at the MIT Media Lab. I had a friend who worked there adn there’s a group there called the Lifelong learning Kindergarten Group and they have a very long and fruitful collaboration with Lego themselves. So I went to this friend of mine and said hey I have this project and I told him about the project and he said yeh, I have a friend who just moved to Denmark two weeks ago and he’s working with Lego. I’ll send your story along to him. We’ll see where that gets you. This friend of his emailed back and he said oh yes this is a very interesting story I’ll send it to the head of the new projects division which is like Lego’s version of DARPA, all their secret mysterious projects that no one really knows about until they get released. Then when I got in touch with this guy Olaf Gyllenstenthat was really a pivotal moment

because this guy was in on it. He wanted this to happen as much as I did.

TR:

That’s known as an internal ally. Someone in the organization to help advance your cause.

MS:

Mind you this guy had no connection with Blind people. He had just never thought about Blind children as a possible segment of people who could enjoy Lego and their instructional aspect just as much as sighted children. Just because he never met Blind children. When he realized this impact that this could make on Blind children, he bulldozed his way forward through the ranks of the company. He talked to the head of Lego Niels B. Christiansen who runs the company now and Christiansen was very enthusiastic and when your project goes that high up , it’s going to go somewhere.

TR:

And it did. Lego decided to produce the instructions.

MS:

The Lego Foundation, they’re kind of their charitable we have cool projects arm. They were showing off these instructions and they wrote me an email and said we have a press conference we want you to present. Could you come and we also want to introduce you to all of the people that have been doing this. Could you spend six days in Denmark. (Laughing…) I was like well, I guess I can. It was a conference of Lego fans. They are very committed. They have blogs and websites, YouTube channels. We’re showing the kind of text based instructions and comparing them to the graphical ones and just kind of talking about the thrill of being able to build on your own. Just the response form these people was amazing. They and I are just united by a love of Lego. It was amazing to see how touched these people were by these instructions and by the spreading of this medium to people who previously could not engaged with this medium as your average sighted person could. That was just a really energizing moment.

[TR in conversation with MS:]

Are you still working with the company?

MS

Very much. I do quality assurance. Checking instructions and making them as understandable as possible. We’re hoping to have 25 to 30 accessible instructions out in the next couple of months for sets that are currently out.

TR:

Users will be able to purchase a Lego set from their favorite retailer and download the instructions from the Lego website, LegoAudioInstructions.com.

MS:

Hopefully they’re also going to redesign their packaging so that they can Braille the numbered bags. I don’t know how long that’s going to take but that’s just something they’ve been looking into and hopefully that would happen.

[TR in conversation with MS:]
Wow!

TR:

I really shouldn’t have such a reaction in 2020. Unfortunately, the response from Lego, isn’t the norm. Even companies who make they’re product accessible, packaging, well that’s another story.

MS:

When Lilya and I were making these instructions on our own we really wanted Blind children to have the complete experience of building the set. So we would describe the box art and the advertising from the back of the manual and the art and the little prints on the Lego people because we really wanted the Blind child to engage with the set as much as the sighted child could. And it’s wonderful to see that carry over to Lego’s instructions. They describe the little Lego people and they describe this and that . They really tend to energize the experience. They really guide you through the building process and they complement you once you finish something they’re like congratulations you finished the car. An adult might kind of get annoyed by that but for children this is what they need when they’re fist getting into Lego. It’s really important for them to feel really included in the process and engaged by the process not just I’m stacking pieces but hey I built a thing. Now I can revel in this thing and then can move on to the next part of the build the fact that Lego are really making their instructions so human, I’m very glad that they’re doing that.

[TR in conversation with MS:]

It’s funny because you said adults can get annoyed… I don’t know, I guess because I’m coming from a particular perspective…

TR:

I wasn’t a Blind child. I don’t even recall having any Lego sets growing up.

When I became Blind as an adult, I had small sighted children, but man, I wish I had a Lego set with accessible instructions to actively engage in with my kids.

I did have a set of Braille Uno cards. That was one of the ways I practiced Braille. Unfortunately my daughter only three years old then would beat me constantly and it just wasn’t any fun! And for the record, I didn’t let her win. I’m not that type of parent. She was just a little card shark. I’m still not over that!

Matthew recently found a cool way to pair Lego bricks with a new interest.

MS:

A few months ago I started climbing with a team of disabled rock climbers. I saw that the Blind rock climbers were really struggling because there’s a person at the bottom of the climbing wall who yells directions at you. And that’s great because then you can get up to the top, but you have no opportunity to think ahead and really plan for yourself. As opposed to the sighted climber who’s able to come up to the wall look at it and really strategize as to where they put their various appendages. I thought well wouldn’t it be cool to make a Lego based mapping system for rock climbers.

TR:

Next time he went to the rock climbing gym, HE brought his Lego bricks and figured out a method for mapping the wall.

MS:

Different types of pieces are used for different types of holes. Two by ones are jugs which are large rounded holes and then one by ones are crimps which are smaller holes. Three by ones are legends and one by one flat round pieces are foot holes.

TR:

The map is laid out by working with that sighted person who yells directions.

MS:

They can do it in a matter of minutes. A minute or less. And so this could easily be used in climbing competitions.

[TR in conversation with MS:]
And then the person right before they’re climbing could actually kind of go through it . Now do you retain that information?

MS:

I try to retain but sometimes when someone yells out it’s also useful because you’re able to correct yourself on the fly and you’re able to kind of rethink your process if you’ve taken a slightly different path up than you initially estimated the yelling person is really valuable because they’re able to make you reassess your situation in a very sensible way.

[TR in conversation with MS:]

You’re younger than me man, I don’t retain as much anymore. Laughs…

Has this an impact on your view of advocacy? Do you have intentions on kind of moving forward and doing more of this type of thing?

MS

I have a comic book accessibility project where I’m building a virtual reality headset for Blind people with engineers at MIT. This headset makes you feel different motions by affecting your sense of balance and messing with it.

TR:

It sounds like the lessons learned with Lego are being applied to his latest project.

MS:

I thought about the way comics were made. I found that comic books run on scripts. These scripts are like movie scripts that they’re incredibly detailed and they tell the artist exactly what to draw and how to draw it. I thought this is our way in. What I need to do now is to network with authors and artists and comic book companies and really energize them. I’ve been in talks with Marvel Comics and combining this helmet that we’re working on with their comic books really provide a new dimension to their work via blind or sighted

The total strangers who owe you nothing but who are still incredibly enthusiastic. I go to comic book conventions every year to network with authors and kind of tell them about it engaging aspects of advocacy the project and Blind people and how comics help Blind people learn about the world around them.

These people are really energized by the fact that comics are being interpreted in a new way. I’m a random Blind guy with ideas. When I come up to their table and say I’d like to kind of look into how you write. Are any of your scripts available on your website? Could I figure out how to do this and make this accessible? They don’t owe me anything. They could say, sorry I only sign books goodbye. But no, they’re thrilled that comic books are going beyond the newsstand, beyond the bookshelf even beyond the television screen into new medium. The more success you have with advocacy the more energized you are to go out there and advocate more and make more things accessible to Blind people or disabled people or whoever.

TR:

Matthews latest project is looking at a different sort of access.

MS:

We have practically no Blind people in the mainstream podcasting space. And it’s interesting because podcasting seems to be such a Blind friendly medium, but when you look at places like I don’t know MPR, major broadcasters no one there is Blind. I started a podcast called Blind Guy Travels. First couple of episodes are hopefully going to come out in a month or two. It takes these mundane experiences like going to the movies or gestures or making funny faces from the standpoint of a Blind person. I’m doing it with Radiotopia who are kind of the podcast branch of NPR.

TR:

To me this story of making accessible Lego instructions is not only about the power of individual advocacy, the importance of stimulating a child’s imagination but also one of friendship and commitment.
MS:

When Lilya died she left a couple of instructions for sets that we hadn’t built yet. And it’s interesting now finishing those sets and building them and just kind of keeping the energy alive. Lego will do their own thing but hopefully Lego for the Blind will do its own thing just because Lego are going to start adapting from a certain year. Everything before then will be inaccessible. I have a list of sets that people want made accessible. The goal will be to find instruction writers. I can teach them easily how to do this and the goal will be to find instruction writes and to teach them to craft instructions and to keep the Lego For the Blind website growing and going beyond what Lilya and I have done.

TR:

How many times have we heard; a picture is worth a thousand words.

I don’t think we need a thousand words to describe the benefit of making the images that are the Lego instructions accessible.

MS:

I just remember building that set and feeling completely (exhale…) very free!
TR:

If you’re interested in helping this effort or just want to know more about any of the projects mentioned or more about Matthew including his music, contact him.

MS:

On Lego For the Blind there’s a contact uplink at the bottom and they could find me there. On Twitter @MatShhifrin Mat with one t. And on YouTube I’m Shifrin2002.

TR:

If you liked what you heard hear, all I ask is that you share the podcast. It’s safe, you don’t have to be within six feet of anyone to do so. Just send a text, email, a tweet a post on FB. Let them know you’re listening to something that you find enjoyable and informative.
It’s available wherever you get podcasts. And transcripts and more can be found at ReidMyMind.com. Just make sure you let them know, it’s R to the E I D (Audio: “D, and that’s me in the place to be” Slick Rick)

TR:
Like my last name!

Audio: Reid My Mind Outro

Peace!

Hide 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

TR:
What’s good fine people.

I have a lot to say about this episode so I’m just going to get right into it.

Well of course after the intro…

The best way to kick this one off…
[Audio: Been Around the World, Notorious BIG]
[Audio: RMMRadio Theme]

JP:
By the way what I’m about to tell you is true and I don’t give a damn if you believe it or not!

TR:
Any story that begins like that, well, you know it has to be good. whether it’s true or not, that’s for you to decide.

That voice you just heard is Jim Paradiso.
you can call Jim, a nomad!

A modern day nomad refers to people; often those with an online virtual business, where one’s income isn’t tied to a brick and mortar location.
Earning 60K for example and living outside of the US on various continents can really stretch that dollar.

That’s not exactly Jim’s situation. He’s been living a version of this lifestyle for over a year now and is currently in Loja, Ecuador.

According to Jim;

JP:
The adventure is the journey

TR:
With that said, let’s begin with the journey that lead Jim to Loha Ecuador.

JP:

I was talking to a friend, he was moving to Vilcabamba and I’d never heard of Vilcabamba and I said it sounds like a good name so I left to go to Vilcabamba. Which is a fifteen hour ride on a bus from. Manta to Vilcabamba. So it took me four weeks to get there.

I get into Cuenca and of course with me now I’m traveling alone for the first time. And I’m up in this Hostel, I said well OK, so I posted on FB { I’m in Cuenca, what’s there to do for a blind man traveling on his own?

TR:
Ok, , the fact that Jim is blind for most people probably makes the idea of him living a life as a nomad and traveling in unknown places, is maybe;
Very frightening?
Unbelievable?

Well, then let’s pause on the journey through Ecuador for a moment and hear what some may think is an unbelievable adventure of Jim’s vision loss
and the series of preceding events .

JP:
I had an aneurism Thirteen years ago on my left eye. And they tried to fix it and they screwed up the eye entirely. Then three years ago I woke up one morning and I had an aneurism in the other I. And I went through ocular injections and everything else that went with it and I had a bad reaction to the ocular injections which caused me to have a stroke.

so I was living with a girlfriend who decided she didn’t want to be with a blind man.

I ended up homeless. I was a month from being blind enough to qualify for Social Security. I was unemployed and Basically I was living on the couch of a motor home
that belong to a friend of mine who was in a retirement community.

So I get a phone call from my brother who was living in Ecuador and he said Well Linda is looking for a manager for a B&B would you like the job? I said, well what’s the pay. Room and board and fifty dollars a week.

Ok, I could be homeless in a motorhome in Florida or I could be homeless on a beach in Ecuador?
kind of a no brainer to me.

TR in conversation with JP:
and I’m sure fifty dollars is different in Ecuador than in Florida.

JP:
It doesn’t make any difference as long as you got food and shelter who cares about the rest of it. I live very inexpensively because that money doesn’t mean anything to me anymore.

I went for a pedicure because I couldn’t see my toe nails and I was catching them on my socks and when she cut the calluses off the bottom my feet so when I went for a walk on the beach I ended up getting third degree burns on the bottom of my feet.

I picked up a flesh eating bacteria and I had to be medivac the act from Ecuador to the United States after two operations down here and five days in the hospital.
The flesh eating bacteria that I picked up is usually fatal within seventy two hours and the only cure for it is amputation; actually they call it debridement which really is amputation. They have to remove all of the bacterial growth because it doubles in size every nine minutes.
Once I got back into the United States they put me in the teaching hospital in Shands of which this was the second case they had in fifty years of this particular virus. They amputated two toes and debride most of my foot and then they had to regrow it in an oxygen rich environment.

This took ten weeks and then they put me in a nursing home for a month. Rehab they call it but it actually was a nursing home.

While I was there I had an abscess on the back of my head so I went to the doctors when I had my foot looked at and they slants the abscess and said this isn’t right so they sent me to a Dermatologist.
Well when they slants it they gave me MRSA – which is another flesh eating bacteria. While I was at the doctor’s they said oh I don’t like these moles on your back let me have them biopsied. Well as it turned out I had skin cancer. They had to operate on my back and removed the skin cancer. Which I thought we were just going to remove a mole but they ended up doing 19 stitches on each side and trenched both sides of my back. Then they had to put me on different antibiotics in order to kill the MRSA they gave me and then when they removed that they discovered it was a tumor. Then they had to remove that. And that was in six months.

At that point I was afraid of dying.

When I finally got settled with Social Security Disability, I Flew back to Ecuador.

TR in conversation with JP:
Why?

JP:
Because my kids wanted to put me in a retirement villa.

TR in conversation with JP:
How many kids do you have?

JP:

Again that’s an odd story…

I have four kids but they’re not mine.
TR in conversation with JP:
Oh Ok!

JP:
My ex-wife’s two kids from her previous marriage.
And I have her ex-husband’s two kids from his previous marriage.

TR in conversation with JP:
OK that’s a new situation!

You have her ex-husband’s kids? (laughing!)

JP:
They all consider me dad and I was always there for them.

By the way, have you ever heard a story this ridiculous?

TR in conversation with JP:
so many people stories that I have heard of do have like one thing on top of the other you know but this flesh eating viruses and tumors, yeah… you’re winning!
– laughs!

TR:
Now, returning to Ecuador Jim met up with a friend.

JP:
He didn’t have any money and I said OK I need someone to travel with because blind people can’t travel alone!

Well I spent three weeks in the Andes and then two weeks in the Galapagos. Then we came back and we went up to Colombia – we spent three months in Colombia. Then we took a cruise and went from Cartagena through Panama, Costa Rica, Jamaica and Grand Cayman. And then circled around back and then went hiking in the mountains and Colombia

TR:
That friend Jim was traveling with was 42 and at the time Jim was 60.
Plus he was still recovering from flesh eating diseases,
multiple cancer surgeries and newly adjusting to blindness.

He learned a valuable lesson.

JP:

There are some things that are worse than traveling alone and that’s traveling with somebody else!

So at Christmas I flew back to Manta.
TR in conversation with JP:
So Jim can I ask you… you just
shared all of that … I mean you talked about a cruise and
flying to the Galapagos and stuff so you’re financing that on the Social Security?

JP:
Yeah!

TR in conversation with JP:
OK! And at this point you’re not paying rent or anything like that just traveling so you’re a Nomad.

JP:
Right, I’m a Nomad, I’m homeless.
I’m doing this on $1,127 a month.

So anyways when I got back to Manta I had infected my foot again and I had to stay off it for six weeks which drove me nuts.

So I was talking to a friend he was moving to Vilcabamba and I’d never heard of….

TR:
That brings us back to Jim’s journey.

When we left off, he was on his way to Vilcabamba
and stopped in a Hostel in Cuenca
where he posted the question

JP:
In Cuenca, what’s there to do for a blind man traveling on his own?

One guy suggested why don’t you head up to Ingaperka which is a Aztec ruin in the Andes which would be Eastern Ecuador.

TR:
So off he went to Ingaperka to find the ancient Inca Ruins.

Now if you’re thinking Jim is probably fluent in Spanish
or of course everyone speaks English,
well you’re wrong.
In fact, most people in the town of Ingaperka speak a dialect of the Incas.

JP:
The bus let me off in the middle of this town. I have no clue where I am I finally find somebody that speaks about four words of English.
And she asked me what I was doing and I say I was looking for the ruins. And she says ruins Cinco. I said Cinco kilometers. She says no Cinco minutos. I said where and she say aqui and pointed me to a road and so I walk up the road. I walk into this beautiful state park.

TR:
After receiving a tour of the ruins
well, it’s time for Jim to begin making his way to Vilcabamba.
He catches one bus to Cuenca and another to Loja.
Which is where he of course posts to Facebook:

JP:
What’s there to do for a blind man travelling alone through Loja?

Well this woman posts back well I have these two. English students who
are blind and would like to meet you. They’re sisters. So I meet them for coffee they come in on the arm of somebody crab walking because they don’t travel alone they’re in their thirty’s and they’ve been blind all their life.

They sit down and we’re talking and one of them looks at me and says who are you traveling with? I said nobody.

She Says Do you speak Spanish? I said no she said you can’t do that! I said yeah, I can!

TR:
By now you probably get the impression that the response, yes I can,
that’s something Jim is quite used to saying!

JP:
I’m here!
She takes me over to the elementary school which I’ll tell you is like a prison. Two meter high concrete walls surrounding it with broken bottles over the top of it and they’re all concrete bunkers and it’s just… it’s got mold it’s just… it’s a horrible place.

TR in conversation with JP:
Is that specifically just for blind children or is that…

JP:
Yes, it’s specifically for blind children. And there are residents there and there are day people that come from the city and this is the only blind school for elementary school children in the area. And she tells me that they don’t teach mobility there because they had to cut they cut their budget and the person they cut from the budget was the mobility trainer.

Now my experience with mobility training is I am blind
and I am mobile. There are my qualifications for the position… so now I’m the mobility trainer.

TR:
See what I mean by saying yes…
Jim not only said yes to teaching others who are blind to use the
white cane and more, but he has a pretty packed schedule.

JP:
I’m working four days a week from eleven to one at the elementary school. I work five days a week teaching conversational English at a college and I work two nights a week teaching mobility and technology at the high school.
I’m starting a nonprofit… We’ve got a doctor. Who is volunteering his time services to do prosthetic eyes on the kids that have missing eyes plus I have the Go Fund Me going…other than that I’m not really that busy!

TR:
That Go Fund me is a campaign to raise money to purchase white canes,
iPhones or iPads to provide children with GPS capabilities
in order to improve their mobility.

You can find more at:
http://GoFundMe.com/3noxfco

If you’re wondering what are the living conditions for a blind nomad
in Ecuador
Jim says his apartment in Ecuador
would probably rent for several thousand in New York City.

JP:
It’s the studio penthouse with a balcony view of the mountains. Glass all the way around its fully furnished. It has a hot tub, a walk in shower. The bathroom is ten by twenty and I pay $350 a month for it including utilities.

TR:
Jim’s a volunteer! He’s not paid for any of his work.
Well not in the traditional sense!

JP:
What I get from a kid who comes up and hugged me. You know – I’ve got children that actually… they don’t speak the language that I speak and they cannot express themselves on how much they really appreciate me.

I get people hugging me all the time. That’s what I get paid in!

While I still have work to do here I’m not leaving. It’s just different it’s a different lifestyle I found a place where they need me so I’m staying. When they don’t need me any more I’ll go somewhere else.
TR in conversation with JP:
How do you feel today about everything that happened? That whole crazy story you told me.

JP:
I will tell you something that you will very seldom hear from a blind person.

Going blind was the greatest opportunity of my life! Without that none of this would have happened. And that’s how I look at it.

TR:
And isn’t that what it boils down too!
How we choose to look at it!

Jim is actually looking for an assistant volunteer
to join him in Ecuador.
He needs help with some of those things he’s doing like
teaching mobility and technology.

He can provide room and board, but
the candidate needs to pay for their own travel.
Oh, yes, and the candidate must be blind.

Jim can be contacted directly through his Facebook page titled:
Blind Jim Can’t do That!
(Yeh, I can!)

I’m Thomas Reid
for Gatewave Radio,
[JP: I don’t give a damn if you Believe it or not ]
Audio for Independent Living.

TR:
I have never described myself as a journalist.
In fact, I make sure to say, I’m not.
I am a self-described Advocate who uses audio to make a point.
I don’t hide my opinion,
I choose the stories I want to tell and have a real solid perspective.
The idea of a journalist is that they supposedly don’t have that bias.
I don’t believe that at all!
However, A journalist would have done some real fact checking of Jim’s story.

They would have contacted various sources to try and confirm
his account of the events.

I am a New Yorker,
I instinctively don’t believe you!
It’s something I am really trying to rid myself of but it’s so ingrained in my being it’s really hard to separate.

I know there are some who will listen to this and not believe him.

Some will assume he has some residual vision – and say
that’s the reason he can do it.

Jim does have a bit of light perception which allows him
to see shadows out of a part of one eye.

Some will think it’s his nature.
Well, it’s probably fair to say Jim is something of an adventurer.
Before losing his sight he was a professional scuba diver diving throughout
the US and Caribbean.

That included salvage work for insurance companies, body recovery,
owning his own diving school and treasure diving in the Caribbean.

So here’s the thing…

I do believe Jim.

Jim is 100 percent telling the truth about the fears of a blind traveler.

Those fears are not just contained within the person who is blind.

You know that because as you were listening you felt uncomfortable.

You know you did.

I don’t care if you are sighted or
any degree of blind, you felt it!

I felt it! And feeling that way upset me.

I travel alone to different states but I had a fully planned itinerary.

Jim’s story made me challenge how I look at the world
and what I really believe is possible.

During our conversation a woman interrupted Jim and I asked him to explain what happened.

JP:
some woman just walked up to me and said You’re an inspiration to the people down here. I overheard your conversation.

I have people walking up to me on the street constantly doing that.

TR in conversation with JP:
How does that feel?

JP:
I don’t think I’m anything special.

I think everybody has it within themselves just that I choose to do that my question to people is Why don’t you choose to do it.

There are so many people out there that don’t want to leave their house and it bothers me.

TR in conversation with JP:
Why?

JP:
I’ve met so many blind people in my. Limited time being blind. And most of them tell me that they have limitations on everything they do.

You know they tell me it’s OK that you can do this but I can’t and then they give me a list of reasons why they can’t.

TR in conversation with JP:
What are some of those reasons?

JP:
Oh I could get hurt I could fall down. I could get lost.

So what’s the big deal you don’t think I get lost you don’t think I fall down you don’t think I get hurt?

TR:
I think it’s fair to acknowledge that the emotions behind these thoughts are real. But Fear you may have heard
is an acronym for False evidence appearing real.

You know what else is real!

Our perspective!
And we can actually control that!

JP:
I survived cancer. I’m blind. I survived the flesh eating bacteria What are you going to do to me that God hasn’t done already? It’s true! What fear do I have now. They told me I was going to die on three different occasions.

TR in conversation with JP:
you know you’re going to go at some point.

JP:
Right, we’re all gonna go some time!
I’d rather go out swinging then go out crying.

There is nothing holding you back but yourself.
I was at a Blind I Can meeting I can do is what they call it…

And they were talking about having an outing and they were talking about going out to lunch.

I mean, what is going to lunch proof for a blind person. Everybody eats!

They asked me what my idea of a good outing was…

There’s a place in Florida in Orlando called Machine Gun America. It’s automatic weapons… what the hell could possibly go wrong!

TR in conversation with JP:
Laughing!… I love it!

JP:

Make yourself feel alive.

You’re dead, nobody’s told you!

TR:
Jim, like many who lose their vision later in life, especially over the age of 55, never even had real mobility training.

JP:
My mobility training consisted of twenty minutes.

I learned everything on the internet and by myself reading books so when
they finally picked up my paperwork they put me through … they put me in front of a mobility trainer who told me that in familiar surroundings I was Ok, but I needed work in unfamiliar surroundings.

So I was hiking staying at an Echo lodge called Ukuku in Columbia it’s outside of Ibagué.

It’s a two kilometer hike up a mountain across three rivers. To get to this and the last river you crossed There’s a log and you got to balance on a log to cross the river.

Now do you know the proper caning technique for crossing a log bridge?

TR in conversation with JP:
Laughing… No I do not!

I think mine would be to straddle the log and then slowly go across. That would be my technique.
But that’s just me!

JP:

So I had to call back to the person who was in charge of the mobility training and I said, hey Tom what’s the proper caning techniques for crossing a log bridge?

TR in conversation with JP: To the avenue.
Oh my gosh! Did they have any advice for you?

JP:
Oh hell no.

TR:
But don’t get it twisted,
Jim isn’t some sort of blind Evel Knievel.
(If you’re younger than 40 Google him!

Jim is practical about his travel.

JP:
I have a theory. It’s really simple when I get to a town if I check into a Hostel I get the business card of the Hostel, put it in my wallet.

If I get really lost I take the business card and I give it to a cab driver and I ask the cab driver donde esta aqui… where is this? And he takes me there.

TR:
That practical advice goes beyond travel…

JP:
I’m trying to convince people that just because you have a problem doesn’t mean you can’t get your ass out and do something.

I listen to people tell me they can’t get a job. Well, go volunteer and get some experience!

TR:
I’m hoping to speak with Jim again.

And who knows maybe that will be in person, in Ecuador.

There are links on Reid My Mind.com to both the Go Fund Me and his Facebook page if you want to communicate directly with Jim.

I usually close with my reminder for you to subscribe to the podcast…

well today, I’m closing out with part of a favorite quote taken from Jim’s Facebook page.

Maybe someone will find it helpful… I think Jim may have.

Falling down is a part of life, getting back up is living.”

Peace

Hide the transcript