Reid My Mind

TR:
Greetings Reid My Mind Radio Family!

It’s so very nice to be back here with you.
If this is your first time here allow me to welcome you and introduce myself.
My name is Thomas and I’m serving as the host and producer of this here podcast which features compelling people impacted by all degrees of blindness and disability.

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

In case I haven’t mentioned it for a while, my focus here is on those adjusting to becoming Blind. Honestly though, the more I learn and consider the adjustment process, I think the specific disability isn’t as important. Yes, of course, it matters, especially when trying to resolve specific challenges or learn technique, but there can be so much insight to gain no matter the disability.

I tend to highlight those things that I think are especially important for someone new to blindness, but we all hear differently – meaning you may resonate strongly with something said where I may not. I’d love to know if that is the case so, please remember you can always reach out and share that with me by emailing ReidMyMindRadio@gmail.com.

Now, let’s get this Poppin’!

Audio: Reid My Mind Theme Music

Catarina:
I’m Katerina Rivera, the founder of Blindish Latina. I am a light skinned Latina woman with long dark brown wavy hair. And I’m currently wearing blue glasses.

— Music Begins – A smooth chill Hip Hop beat…

When I was about three or four years old, that’s when my parents first started noticing that I had trouble hearing, I think I was walking away from them and then not responding when they would call me.

We found out that I had hearing loss and I was fitted with hearing aids, I went to one year of special education, and then I was mainstream. I still received speech therapy on a regular basis, I had an IEP continuously throughout my education. And for the most part, though, I was mainstreamed.

TR:

Catarina and her family had no explanation for her hearing loss until she was 17 years old.

Catarina:

I was diagnosed with Usher syndrome, which is a combination of progressive vision loss due to retinitis pigmentosa. And hearing loss depends on which type of Ushers you have

TR:

There are three major types of Usher syndrome, known as type 1, 2 and 3. They’re distinguished by the severity of hearing loss, the presence or absence of balance problems, and the age at which signs and symptoms appear.

By 17 years old, Catarina, adjusted to her hearing loss, fully accepted wearing hearing aids and was comfortable in her own skin.

She was on her way to Duke University on a scholarship when diagnosed with vision loss.

Catarina:

When I first got diagnosed, I felt like it was a huge tragedy in my life. It was upsetting, surprising. And it felt like a very big loss. I think that I had to go through the stages of grief in some way. When I was reacting to this, when my parents heard about it, they were very upset. And I felt pain for them. So, I felt like I had to be strong for them.

TR:

Presenting that strength doesn’t give much opportunity to deal with the emotions. Even sharing with friends who often don’t know how to respond doesn’t feel right.

Catarina:

I felt like I was dropping a bomb. I felt really heavy. I don’t tell people, hey, I’m going blind, I find that when I would do that, it would really evoke a sense of pity. People feel sorry for me. And I was feeling bad. At the time, I was feeling bad about it. But as I progressed, in my journey, that language doesn’t resonate with me anymore. It’s not the way that I tell my story. It’s not, it doesn’t feel like a tragedy anymore, but I can definitely empathize with myself at that time.

TR in Conversation with Catarina: 10:05
You never said anything about even exploring the idea of postponing school where I’ve heard from other people, and it would be sort of understandable where someone might, hey, I gotta take some time. It sounds like you still went straight to college.

— Music Ends…

Was there ever any sort of, thing about Oh, okay, maybe I should postpone this because of the vision loss?

Catarina:

That’s a very interesting question. I have not heard that before. And I mean, I get it, it makes sense, every person is going to have their own response to something like that.

I never felt like I needed time away from school.

TR:

Retinitis Pigmentosa is progressive so the early diagnosis didn’t impact her studies as much as the hearing loss.

With an accommodation allowing her to register early, Catarina avoided the large classes in auditoriums and opted instead for smaller classes making it easier for her to hear the lectures.

There was more of an impact on her social life.
And she wisely considered her vision loss in her decision-making process.

Catarina:

I decided not to drink alcohol, because I didn’t want to impair myself any further, I saw that people were really cutting loose, you know, and partying. And I remember thinking to myself is it’s every person for themselves here.

I would focus more on dancing, because I couldn’t hear people when the music was loud, and I love to dance. So, I never stopped myself from having a good time.

TR:

All of this considered, it’s not surprising, Catarina didn’t feel a part of the blind community. For a while she could still drive and wasn’t using a white cane.

It wasn’t until she moved to New York City after graduation and began seeking out community.

Catarina:
When I moved to New York, I didn’t have a job, I had decided to go into the field of education. And I was very motivated to make a difference for the Latino community, for my people. I had applied to a program called Teach for America, where you commit to working in a low-income classroom for two years. And I was very lucky, because not only could I move to New York, to access great public transit, I also was able to go even further than what I had hoped.

I basically got a job as an elementary school teacher teaching third grade, and bilingual education and I was working with students who had Spanish as their first language. It was exactly what I wanted to do, it felt meaningful. I taught at that school; it was in the Bronx.

— Music Begins, a strong, dramatic intro to a driving Hip Hop beat

TR in Conversation with Catarina:

(Laughing) I can just imagine the people who have their preconceived notions, not only about disability, whether it be the hearing loss and the blindness, but then you know, you threw in my beloved bx borrow, okay, you know. And so, then they’re like, oh my she’s, she’s, she’s deaf and blind and she teaching in the Bronx, you say?

Tell me a little bit about how you did your job.

Catarina:

Sure. Yeah. So, I was really happy to be in the Bronx, my fathers from the South Bronx, he’s Puerto Rican. I felt like, Okay, this is like a full circle moment, where I can kind of be in a space that my father grew up in and give back. So, it felt amazing to me.

Now, as far as just some of the logistics, I purposely chose where I was going to live based on the commute to work, I ended up living in Washington Heights, which was just across the river. And I took a bus every day, to my school, I basically only had to walk five to 10 minutes to catch the bus in Manhattan. And I, the bus stop was directly across from the school. So, the only issue that I would have is when I would fall asleep, because it was really early in the morning, and miss my stop in the Bronx and have to walk back. (Laughs)

I also had a really great teacher who also worked at the school who would drive in from Jersey. And so, if I was ready early enough, I would be able to meet her, and she would just pick me up from 100 81st Street and just take me to work as well.

I think people who have preconceived notions of any place need to check that and not make assumptions.

TR:

Word!

There were, however, real challenges of the job that she never actually considered.

Catarina:

One thing that was difficult was knowing who was bothering who, when you have a lot of children sitting there and I’m in the front. It’s very hard, like I don’t have that peripheral vision. So I’m not able to see like filano was poking filano.

Filano is a term for like anybody, like whoever. So that’s how we use it.

TR:

It’s not just behavioral. When young children have questions or want to participate, it’s important that they’re recognized.

Catarina:

That’s something I did do with them. I would let them know and it’s simple, hey I can’t see well. If you have your hand up, I might not see you. So, wave it around. I put it up high, I’m going to scan. I would feel so bad if the kid had their hand up and wanted to talk and I really didn’t see them. That’s demoralizing. So, I would try to make sure They were aware of what was going on with me and I’d give recommendations for what they could do.

TR:

In classroom is challenging enough, but what about field trips?

Catarina:

Generally, on a field trip, the teachers in the front, you got to lead the way, you got to set up the access to the subway present the form to the conductor. That was so stressful for me, because I do well in environments that I know.

TR:

And then there’s dealing with parents.

Catarina:

Phone calls were also hard to the parents being able to hear well, on the phone, I didn’t know about any of the programs that were out there and that I had been able to use now that has somebody transcribing the phone call while you’re on it or use AI for that. I didn’t have any of that. So anytime I called home, it would be maybe a different voice that I had never heard before. I would let them know that I don’t hear well, repeat yourself. And then a lot of times, you know, it’s like parents are speaking in Spanish. So, I really worked on my Spanish as well during that time.

TR:

After three years Catarina left that job and worked for a charter school in Harlem for about a year.

— Music Ends

Catarina:

I realized that in education the way to move up was to move out of the classroom, to become an administrator. And that wasn’t really the way that I wanted to go, I didn’t want my daily life to be about that. So, when I started to become interested in food, and seeing the food that my kids were eating in the classroom and starting to question why they are eating so many bags of chips and candy in the morning.

TR:

Actually, that’s a great question especially coming from the person responsible for educating these young minds.

— Music Ends…

And we should know, proper nutrition impacts your ability to focus and learn.

So, she began researching.

Catarina:

I remember going to Western beef, the supermarket and looking at all the products, the corner store and seeing, hey, the waters all the way at the bottom of the refrigerated case why?

The first part of my journey with food was approaching it from an education lens. I had this idea that people needed to be educated.

I started a community health program in my neighborhood where I started teaching families about health, including fitness and nutrition.

TR:

In addition to the research mentioned, Catarina also has a master’s degree in Public Health and certification in holistic health.

Catarina:

I realized that the system was also a huge force in people’s ability to eat well. And if I focus just on education, I was really missing the mark.

The great thing about working in the nonprofit space is that I did work with kids in the beginning, I was working on an after-school program. But once I transitioned into Program Administration, I realized how much less stress I had in my life, sitting at a desk and working in a different way. Working on partnerships.

TR in Conversation with Catarina:

So, is that the work that you do today?

Catarina:

So, I’m still in the nonprofit space working in food insecurity. And I’m so glad that I’ve had the opportunity to get training and public health, and learn about food justice, and food sovereignty, which are really important ways for approaching the issues with food and what we can do about it. And as part of that, I’ve been able to involve myself in community organizing. And I founded an organization in Washington Heights called the Washington Heights, Inwood food Council. So, it’s in both neighborhoods, Washington Heights, and Inwood. And this group is pursuing food justice in the community, they’re gardening, they’re working with people in the neighborhood of all backgrounds. And the group now exists without me that I’ve transitioned myself out there completely sustainable and continuing to do very good work.

— Transition
— Audio of Catarina from InstaGram:
“Heres a two minute inclusion tip from Blindish Latina. Caption all of your videos…”

Voice Over from IPhone: “Video by Blindish latina”
Catarina from video: “Happy International Women’s Day! I want to tell you about a women I really admite. And, it’s my mom!”

— Music Begins, A Latin influenced Hip Hop groove.

TR in Conversation with Catarina:

Talk to me about Blindish Latina. First of all, explain the name blind ish.

Catarina:

The name blindish Latina means a lot to me, I wanted to showcase my intersectionality the multiple identities that I have, especially because we don’t see a lot of representation of people of color, of Latinidad that within disability. So that’s why I chose a Latina. And the reason I put blindish is because I wanted to give a hint of the fact that blindness is a spectrum. And I know that so many people don’t know this. They think that when somebody is blind, they don’t see anything at all. They don’t have any space in their mind or any concept in their mind of someone like me, who can see really well in such a small window. But I still retain vision.

TR:

The mission of Blindish Latina?

Catarina:

To smash disability stigmas through storytelling, through training and through advocacy.

TR:

Right now, all of this takes place on Instagram.

Catarina:

I talk about my own disability journey. And frequently share stories even about things that might seem small to me. And like something that nobody else would be interested in, for example, I did a video about swimming with hearing aids. And just talking about the fact that I have to be concerned about where I put my hearing aids, when I go swimming, and that I get really scared about somebody stealing them off the beach. So, I might leave them at home, and then not here for hours. But I got so much response on this post that other people feel the same way.

TR:

It’s not always specific to the Deaf or Blind community.

Catarina:

I also share about disability awareness in general, for example, self-identification.

TR:

For example, the debate over using identity first language versus person first language. Identifying as a Blind person as compared to a person who is Blind.

If you gather the right people, this could be a full podcast episode, but Catarina’s point is that it’s up to that individual how they choose to identify.

In addition, she’s sharing best practices and awareness of all sorts of advocacy issues.

TR in Conversation with Catarina: 49:45
What is it that made you become more interested now, in sort of connecting with the cross-disability community?

Catarina:

One thing that made me interested was the documentary Crip camp on Netflix about the disability rights movement, and the story of this camp that brought people with all different kinds of disabilities together in the 70s.

People of all different kinds of disabilities coming together to take these actions. And it really occurred to me that I had not been in a space like that. It’s something that has been inspiring.

TR:

Catarina’s been involved in some of the digital communities, but it’s not as personal.

Right now, she’s focusing on taking Blindish Latina beyond IG.
Catarina:

So, one of the things that I’m doing with Blindish Latina, is public speaking, and offering workshops, and speeches. It’s very important to me to grow my impact and be able to talk to corporations and institutions about disability awareness, why they should care about disability and accessibility, and the actions they can take to create an inclusive workplace and implement best practices. So, this is a major component of Blindish Latina and where it’s headed.
— Music ends

TR:

Catarina is hopeful that corporations will be receptive to her message. Especially considering the attention being given to diversity equity and inclusion initiatives.

This is where that smashing comes in.

— audible smashing sound

Catarina:

I think for me smashing stigmas, or being a stigma smasher was exciting, because it was action oriented.

I’m all about actually creating change. I’m not on Instagram just to talk or post photos of myself or get likes, I’m on there to share best practices to activate allies to move people along this continuum, where they are now going to operate differently and make an impact on their sphere of influence wherever they live.

TR:

Check out some specific advice for allies or accomplices who want to work with the community in smashing stigmas, straight from Blindish Latina.

Catarina:

People have this idea that being an ally is a huge undertaking.

I’ve broken it down into three simple steps. One, you have to care. You have to believe that it is important to be aware of accessibility to do better.

Second educate yourself. You can learn without putting the burden on people with disabilities to teach you, there are so many people producing content, you can engage with them, follow them, this podcast is a perfect example. Books, websites and trainings and presentation. So, you can do a lot of self-education.

— Music Begins, a triumphant smooth Hip Hop groove
TR:

The final step doesn’t actually require a lot of expertise or going far beyond your comfort zone.

— Smash sound —
Catarina:

Wherever you exist. Whatever community you’re a part of you can take action. For example, if you’re part of a church community that’s going to have their masses on zoom, you can advocate for a platform that has closed captions, and speak up and say, Hey, we should consider this other option.

If you are managing your staff, and you’re going to have a meeting off site, you can create a registration form for people to RSVP. And you can have a question in there that says, what accommodations Do you need, and it can be anonymous. And you can create a space that is welcoming. That’s taking an action that’s being an ally.

4TR in Conversation with Catarina:
You see what you did there? You still teach Academy.

— Catarina and Thomas share in a laugh.

TR:

That’s the value of experience. The ability to apply what we learn throughout our lives in different areas. That’s wisdom.

Showing the world who you are. All aspects.

Catarina:

One of the reasons that I started Blindish Latina was to show that I am here, that I am a professional, disabled, Latina woman and I exist. I don’t think there’s a lot of representation of all of those dimensions of people who are disabled and are not white, of people that are disabled and are in the workforce, especially for people with blindness. I feel like there’s a lot of assumptions that blind people cannot work. And there are many of us in the workforce. So that’s why I use that term professional. Look, I’m here educated. I have two graduate degrees. I was Valedictorian of my mph, like, Come at me.

TR:

Better come correct!

You can check out all of the content including best practices, informative videos with captions, images with alt text and more on Insta Gram @BlindishLatina. You can also connect with her via Linked In by searching by name, that’s Catarina Rivera (spelled out)

Catarina:

And I have a website as well. CatarinaRivera.com

TR in Conversation with Catarina:

So, I don’t know if you know, but the fact that you are on the Reid My Mind Radio podcast. That means you are now officially part of the Reid My Mind Radio family.

You perfectly aligned with what we are doing. And so, if I could borrow your turn because we’re trying’ to smash it up too.

(Laughs…)
— Smashing sound…

Catarina:

Love it!

TR:

Some great take aways in this one y’all!

Like using our experience, talents and interests to create impact.

Shout out to Catarina! We’re rocking with you Sis!

Continue to follow what’s happening here on Reid My Mind Radio wherever you consume your favorite podcasts. I hope we can one day make your list.

In the meantime, tell somebody you love or at least like a lot or even if you have no real feelings for this individual, let them know you are part of the Reid My Mind Radio Family. Let them know we have transcripts and more at ReidMyMind.com. Now this can be a challenge for some so be patient and no matter how long it may take, explain that it’s R to the E I D…
(“D and that’s me in the place to be” Slick Rick)

Like my last name!

— Music ends into the outro

Audi o: Reid My Mind Radio outro

Peace

Hide the transcript

Audio: “More Peas”, The J.B’s

Greetings all and welcome to another episode of Reid My Mind Radio.

I’m your host, T.Reid

If you’re a regular listener, glad to have you back. You know where everything is so come on in and get comfortable. Allow me a moment to greet those who are here for the first time.

Ladies, Gentlemen.

Reid My Mind Radio is my space to bring you interviews with people with interesting stories to share more often about blindness or low vision. It’s also a place for me to share my own experiences with blindness as I move along this journey. As I continue to learn and grow I suspect you’ll see some of that reflected here both in the topics and in how they’re presented.

If you’ve been riding with me for at least the past year, you may recall that in 2017 I brought you interviews with the Holman Prize winners.

Not familiar with the Holman Prize? We’re about to get into that.
First, I encourage you to go back and listen to each of the 2017 episodes.

Today though, it’s all about the 2018 winners. I’ll bring you each of the three in a separate episode. So let’s get started with the first…right after my intro music.

Audio: Reid My Mind Radio Intro Theme

TR:

The San Francisco Lighthouse for the second year in a row, awarded a $25,000 Holman Prize to each of three individuals who in their own way demonstrate the adventurous spirit of James Holman.

All applicants had to create a 90 second video describing their ambition and how they would use the money.
A team of judges all of whom are blind reviewed each video and eventually selected three winners.

Born in 1786 James Holman a veteran of the British Royal Navy became blind at 25 years old after an illness.

After studying medicine and literature he became an adventurer, author and social observer who circumnavigated the globe.

Undertaking a series of solo journeys that were unprecedented visiting all inhabited continents.

Our first 2018 Holman Prize recipient is Maria Conchita Hernandez.

Conchita:
When I was five years old my family decided to move to the United States. It was only supposed to be a temporary thing… go check it out.
I think my mom really saw the difference between kind of what we had available to us in terms of education but also medically wise. So we ended up staying and we became undocumented at that time when we decided to overstay our visa.

TR:
One of 5 children, both Conchita and her brother were eventually diagnosed with Optic Atrophy.

Conchita:
but I don’t think that’s actually what I have. I went to an Ophthalmologist like two years ago and he’s like yeh I don’t think that’s what you have.

I’m color blind, I do very bad with light, I don’t have depth perception so I definitely should have had a cane way before I did.

TR:

That awareness of her lack of blindness skills as a child Conchita would eventually come to understand. After not accepting large print, dealing with headaches resulting from reading standard print, she still graduated with a 3.4 GPA.

Conchita:
That’s why people were like you don’t need help You’re doing fine. The thing is I was struggling but because I was smart I could figure stuff out and I feel like that’s the same in college.

TR:

For many the time spent in college are considered formidable years shaping political views often for a lifetime.

Growing up in California, Conchita had an early start in activism.

Conchita:

So I went to public school. I grew up in California and I ended up graduating high school and going on to college.

I’ve always been into Civil Rights and advocacy. People are like oh what were you doing in high school I was organizing walk outs (laughs…) for immigration. That’s what I was doing, but I never really learned anything about disability or blindness or anything and I didn’t consider myself blind because there’s such a negative idea around it. My teachers never told me I was or anything, they were like oh you are visually impaired you can’t see very well. It was always like a focus on kind of seeing it as this deficit as opposed to something positive.

TR:
During her senior year at Saint Mary’s, a small liberal arts school in California, Conchita took a political science course.

Conchita:
My Professor was Blind. He was like oh ok so you are Blind and I was like no don’t confuse me with those people.

(Laughs along with TR)
He said you should really go to this conference and I was like no, I’m good. So one day he took me to his office and was like you’re going to go to this conference, I’m going to call them and they’re going to pay for you to go. And so he calls like the President of the NFB in California and was like there’s this young lady here and you’re going to pay for her to go. Get her everything and I was like alright I guess I have to go and I don’t even know who these people are. And so my first introduction to blindness in a positive light and to really the disability community was when in my senior year I went to a national NFB conference. And that is where I was just kind of blown away.

TR:

With such negative stereotypes around blindness, it’s common for those with residual sight to choose not to identify as blind. Often even encouraged.

Conchita:

My teachers always told me you know you’re so lucky cause at least you can see something. You know I had these very Ablest ideas what blindness was and disability and when I met all of these blind people I realized people that were totally blind were doing more stuff than what I was doing because I didn’t have the skills . I didn’t know how to travel independently. Up until that point I never went anywhere by myself. I traveled the world, I went abroad, but I was always with someone. I had this fear of going by myself because I wasn’t sure what I would do. In my mind what was wrong was that I couldn’t see not that I didn’t have the skills because I didn’t even know that was a thing.

TR:
That thing? A strong, positive view of what it means to be blind, to be disabled; not only would that become her thing, but it became the foundation for her Holman Ambition.

First, she enrolled in a blindness training program. She learned how to properly use the white cane, Braille, access technology

She knew then she wanted to give other blind children access to the information she didn’t receive.

Conchita:

I didn’t have good teachers of the blind who really should have showed me all of these things No one showed me Assistive Technology. Nobody showed me Braille because I saw too much, but yet I couldn’t function like everybody else.

I ended up going to this Master’s Program at Louisiana Tech and I got my Masters in teaching Blind students.

TR:

After working as a Rehab Counselor in Nebraska, Conchita moved to Washington DC where’s she’s been teaching blind students for over 6 years. She’s currently pursuing a doctorate in special education.

Conchita:

I also run a nonprofit on the side which is kind of where the Holman comes in. I started it three years ago with several friends who are also professionals in the blindness field.

TR:

That organization is called METAS. An acronym for Mentoring, Engaging and Teaching All Students.

The organization was formed after founding member Garrick Scott received an invitation to serve as a mentor at a school for blind children in Guadalajara. Not being a Spanish speaker, he invited his friend Conchita to join him.

Conchita:

I was like alright if we’re going we’re going to have a curriculum. We’re going to have workshops we’re going to set it up organized , we’re not just going to randomly go on a trip. So we ended up building a curriculum, building these classes.

TR:

Two other colleagues; Sachin Pavithran and Richie Flores joined Conchita and Garrick to form the organization.

Conchita:
We’re training the teachers on how to work with blind students because there is no certification for teachers. It’s mostly physical therapists, or occupational therapists or just people who were like I just wanted to help people. So they don’t really have a background in education of blind students.

Conchita:
after we went to Mexico we decided we need to be a nonprofit so that we can ask for money and we can make this something sustainable. So three years ago we did this and we’re all blind, we’re all professionals in the blindness field we’re all people of color and we’re all really passionate about what we do

Audio Conchita Holman Prize Submission

TR:

Continuing to build on that passion, Conchita submitted her proposal to create a conference in Mexico providing training and informational workshops for people impacted by blindness.

Conchita:

Anybody who is blind, parents of blind children and professionals in the field.

The goal is to bring people together and organize. . I believe organizing people together and having them advocate for their rights and advocating for what they want makes the world of difference. And that’s what changed in the United States. The reason we have the laws we have, we’re not special, we’re not more advanced than any other country even though people think we are. We’re not smarter. It just so happened that the right people were in the right places at the right time .

I think organizing the Blind in Mexico so that they can see this positive idea of blindness and having parents see this positive idea is going to really transform them being able to advocate for themselves

We’re going to be providing workshops from Orientation and Mobility, to Braille to Advocacy to parents of Blind children. Recognizing the situation is different in Mexico than it is in the United States, But power of people together in one place advocating for their rights can be a really powerful thing.

TR:
In Mexico, poverty and policy are some reasons that account for the differences in the lack of education among children who are blind. Conchita once described a blind child’s options as a choice between a beggar or living with their family for the duration of their lives.

Conchita:

60 percent of the kids who are blind or low vision have zero education. That’s not even to the 6th grade.

In the United States we have IDEA which says public school has to take you and has to provide accommodations . You have a right to a free and appropriate public education. That doesn’t exist in Mexico. A public school can tell you I’m sorry but we don’t know how to help you we don’t know how to educate you.

So you don’t have access to public education.

The only state run school for the blind is in Mexico City and the others are privately run which means they charge some type of tuition. The school we work at in Guadalajara, they go up to 6th grade. It’s kind of like a boarding school or kids can go there just for the day.

The thing is there’s nothing after 6th grade.

you can go up until free public education in 12th grade but you have to buy your books in all public schools even kindergarten, you have to buy your uniforms, you have to buy your lunch. So parents make the choice well do we have enough to pay for that or should you start working. So it ends up being are we going to pay for 6 more years of books uniforms or lunches really any school supply or are you going to go to work. Many times the kids decide on their own , I’m going to go to work because I’m going to support my family.

The good thing is there’s a lot of family support. But it ends up being the family taking care of them as opposed to them living independently. The people who live independently are few and far in between.

[TR in conversation with Conchita]

Wow!

I inherently believe that people should have access to information, access to resources no matter where they live.

TR:

Conchita and her METAS team have already seen examples of the success their curriculum can have.

Conchita:

We hosted this workshop in McAllen Texas which is in the Rio Grande Valley where we worked with 16 blind adults and their families who are Spanish speakers. And so they learned, many of them for the first time, how to use a cane, how to do Braille, technology and daily living skills. And then we had workshops for the families. We had an activity where we asked them what are your fears and expectations and dreams for your family member. And it was a lot of fears and kind of what are they going to do when we’re not here and how are they going to be able to do such and such. By the end of the workshop it was just amazing to see how excited they were. They were saying now we want to know how we can support them in being independent and how can we help them reach their goals. We know they’re going to be fine because we met these great blind people.

TR:
Some things to consider when planning this conference? Organizing from outside of the country’s borders is just one.

[TR in conversation with Conchita]
Are there going to be some challenges to kind of get everyone in one room? Just financial challenges?

Conchita:

Yeh definitely. I think that’s going to be the biggest barrier.

So with Part of the money we’re offering scholarships to people so they can travel there.

We’re trying to make connections with organizations that can serve as sponsors that can also provide financing for people in their state. Different states have different policy. So for example The state is Jalisco and the city is Guadalajara, they have an Office of Disability that’s a state level position. So they have money and grants that we’re planning on applying to also help pay for this. But also having the blind people from the different places apply to those grants and in those entities and also try to get companies to sponsor in order to make that feasible. That is going to be the biggest challenge.

the goal is 200 people .

[TR in conversation with Conchita]
Are you familiar with the political structure there in Mexico?

Conchita:
There’s so many layers. Mexico just had a presidential election and the left wing government won. That can be a positive for disability. In Latin America historically the more left leaning countries have done disability laws.

TR:

While the Holman Prize is specifically to assist with bringing this project to fruition, the real goal with any sort of movement is sustainability.

Conchita:

So I see this as being the beginning of something annual and having it be whatever the people there want it to be. Having them have the buy in that they will be the ones to do most of the organizing for the next time and they will be the ones who are like this is what we need and this is how we want to do it. So definitely having it be an annual thing but being run more locally as opposed to me who is in a different country.

Even though I am Mexican, even though I understand the situation, that is not my reality and so being very careful about not telling people what to do but rather giving them the resources and information and letting them decide what they want to do , I think that’s really important.

TR:

The conference will be held in Guadalajara Mexico tentatively scheduled for July 26 through the 29th 2019.

Conchita is also a founding member of the Coalition of Latinx’s with Disabilities. This advocacy organization consists of individuals with disabilities from throughout the Latino diaspora. They work on issues including immigration.

Conchita:

There was a guy who was Deaf who was in a detention center being held by ICE and so we did a lot of advocacy on his behalf. He didn’t have an interpreter. He knew home sign, that his family invented. He didn’t have formal sign language from the states or from the country he was coming from. So he had no way of communicating with anybody except his sister and that was denied to him while he was in detention. So we really advocated for his release and for him getting accommodations. So he was eventually released.

I think more than anything it’s just disability is a whole different world in the Latin X community. There’s a lot of stereotype and it’s just a different history. So just finding a group of individuals who kind of are proud of being disabled and who also have Latinx backgrounds who can share this and advocate for each other.

A lot of people ask me this. They say do you think Latinx’s have a more negative idea of disability? And what I say is we just don’t have access to information. So the fact that I had to go to college to find out about this is an injustice because the majority of people who are big disability rights advocates are white, wealthy, college educated.

and so there was a hash tag, I don’t know if that was a couple of years ago, that was disability too white.

[TR in conversation with Conchita]
too white, yeh, yeh!
Conchita:
If you come from a working poor background you’re not going to go to college panels about disability.

When we talk about the history of the disability rights movement in the United States we leave out all of the people of color who were there and they never get highlighted

When the disability rights movement was happening in California and they were organizing and protesting at the capital, The Black panthers were the ones providing food and there were a lot of disability rights advocates who were teaching the Black panthers how to organize. There was just so much collaboration and that really gets left out of the conversation about the ADA and how it came about and you see a lot of white faces. I think a reason why the ADA was passed under the Republican leadership was because they painted it as a white issue . The people signing were white. I mean those people are also really amazing people and I’m friends with some of them. There really amazing but we always leave out the people of color that were just as much doing as much work as anybody else, but we don’t hear about them as much.

[TR in conversation with Conchita]

Why should disability be different from the rest of society, right? (Laughs…)

Conchita:
Yeh, exactly! (Laugh)

TR:

It’s pretty clear to see that Conchita is an educator at heart. Her own experiences are guiding her desire to share the knowledge about blindness and disability that she wishes she could have gained earlier in life.

She can’t change when she received the information, but she’s doing everything possible to pass along her message.

Conchita:

blindness doesn’t have to be as detrimental as we make it out to be. What tools can you use as a blind person to do x, y and z. As a parent of a blind child what kind of expectations should you be setting for your child and it’s something as easy as make your blind child do chores, don’t let them sit back while everybody else does. There’s ways to have them do it. Have them do the same things their siblings do. Something so simple can really make a huge difference.

TR:
Congratulations to Conchita and METAS. Looking forward to hearing good things about your efforts in Mexico and other projects in the future.

If you want to follow their progress or learn more you can visit www.MetasInternational.org. The site contains a link to their Facebook page which Conchita says is more frequently updated.

You can find the National Coalition for Latinxs with Disabilities
www.latinxdisabilitycoalition.com/

Of course we’ll have links on Reid My Mind.com.

TR: Gatewave
This is Thomas Reid for Gatewave Radio. Audio for independent living.

TR: Close

It’s probably no coincidence that James Holman’s adventures began after his education. That curiosity pushing him to seek out more real life experiences.

Our first 2018 Holman Prize winner featured today has a similar sequence. However, her mission is pretty specific. Empower other blind people who have little opportunities to improve their own lives by organizing with others who are blind.

Next time I’ll bring you the second of three 2018 Holman prize winners. Then we’re going to reach back out to our 2017 winners and Reid My Mind Radio alumni…

Penny Melville Brown of Baking Blind

Ahmet Ustenel AKA The Blind Captain

Ojok Simon, The Bee Keeper & Honey Farmer!

We’ll hear about what worked with their plans and what sort of adjustments were required. And of course lessons learned.

If there’s one lesson I want Reid My Mind Radio listeners to learn; that would be , how to subscribe to this podcast.

Apple Podcast, Google Podcast, Sound Cloud, Stitcher or Tune In Radio. Of course, whatever podcast app you use, you can find it there by search for Reid My Mind Radio. Just remember, that’s R to the E I D!

Each episode lives on the blog, ReidMyMind.com where I include links to any resources and a transcript.

Conchita:

Being very careful about not telling people what to do but rather giving them the resources and information and letting them decide what they want to do.

Audio: Reid My Mind Radio Outro

TR:

Peace!

Hide the transcript

TR :
What’s up RMMRadio family.
We’re getting right into this today.

And I can tell you from the jump, there’s know original musical creations in this episode.
[Applause]
Oh seriously who did that… that’s not cool!

[Reid My Mind Theme]

TR:
Accessibility issues are everywhere. Transportation, information like the printed word or that which appears in movies but isn’t spoken and too often employment.
When you think about the problem solvers who find solutions to these types of access issues, you may not think he’d sound like:
[TR in conversation with JD]
How are you?
JD:
I’m good!

TR:
… Well, like a 14 year old young man.
That’s Jack DuPlessis,.

Jack developed a way to make an otherwise inaccessible washer & Dryer talk.

Many of the newer appliances on the market today whether stove tops, microwaves and laundry machines are using digital displays and no real tactile options.

I spoke with Sam DuPlessis now known as Jack’s Dad.
I wanted to learn more about First Build, where this project all began.

SD: First Build was started about three years ago by G.E. appliances. We’re a wholly owned subsidiary of G.E. appliances. We want to incubate new products and
we want to do it in an open and collaborative way. We have all the tools to design build and sell new products and new innovations. And we invite anybody to come in and collaborate with us. Truly we mean anybody. We’ve got an on-line presence. You can come in and sign on and use our tools and create with us or you could go online and submit ideas to our website – we call it Co creation.

TR:
Others in the community and those who visit the site vote for their favorite ideas. The more votes and idea gets;

SD:
We put them in queue to make them and see if we can make products out of them. So really let the creativity of this place and ideas of a large group, come in and help us accelerate product development where from a G.E. appliances point of view things used to take years, we want to just take weeks and months to get these ideas out there tested.

TR:
First Build isn’t just sitting around waiting for ideas to come to them.

SD:
Once a year we do something called a mega hack a thon.

TR:
Hackers usually refers to computer programmers .
A hackathon is a fast paced event that
can last for a few hours or over a weekend.
The intention is to design a new piece of software often with a specific goal in mind.

In the case of the First build hackathon, hackers includes
programmers, engineers, machinists and others.

SD:
We just take things apart and put them back together and try to create new concept products in a weekend.

This year’s Hackathon is September 9 & 10.

TR:
Last year’s hackathon inspired what would become a talking laundry machine. But it started with a Stove or cook top.

SD:
An induction cooktops that was really designed specifically to address some of the cooking issues for the visually impaired. It was a great idea it had a pan locator on a smooth cook top where the visually impaired person wouldn’t have to feel with their hands where the burner was starting to warm up. They could just feel with the pot and it kind of self-locates over the cooking surface. we’ve never seen that before. We happen to have here in Louisville. the American Printing House for the Blind. It’s been here for one hundred fifty years and it’s where they print almost all the materials and teaching aids for blind and visually impaired education in the United States. When their leadership came in and reviewed the cooktop, it had like a cap touch control. It’s not very accessible.

TR:
It was through this outreach and communication with those who are impacted by the inaccessibility, where Sam received a request.

SD:
As things get more electronic like laundry, the knobs just spin three hundred sixty degrees they don’t have a home position. They don’t even have a home beep. You’ve grown this capability but you haven’t really addressed a good universal control. If you can give me a home beep . On Something that would be great.

So I took that as an idea for laundry. Something that here at first build we could just program a test for that and have something maybe that we could
update have in the field and just have a home beep on laundry. Really easy to do. I came home and I asked Jack would he be willing to work
on something like that.

[TR in Conversation with JD]
So your father comes to you with the idea, what did you think about it when he first asked you?

JD:
Yeah, I never thought about visually impaired people using a washer and how hard it would be without something as simple as a home position. So that was just a new take on controlling a washer, but I thought it would be a fun project.

[TR in Conversation with JD& SD]
Jack did you get into programming because of your Dad? Dad, how did it happen
SD:
The cool thing that I did was I brought home a Raspberry Pi and connected to a T.V.

TR:
Sam’s not referring to an actual pie here.
He’s talking about the tiny and affordable computer that you can use to learn programming through fun, practical projects

Getting his hands on this in 4th grade along with a visual coding interface, Jack began working on small projects that included making his own games.
Eventually that led to him learning other languages and other projects like a website that lets users test their typing speed and proficiency

And of course, talking laundry machines!

JD:
So yeah, I went with it and got a working like prototype version in about a weekend or so.

[TR in conversation with JD:]
For some kids, that would deter them to even continue. “Ah this is gonna take too long”, but that’s not you, it doesn’t sound like that.

JD:
[long pause]
No!
[TR & SD: laughs]
## TR:
Jack is humble which is an endearing trait for a very bright talented young guy.
Plus, he has Dad. And Dad’s love to talk about their children.

SD:
What took a few hours that weekend, was a very limited functionality and as this thing developed and we got the feedback, Jack rewrote this to not only address just the knobs but to address many of the buttons that are on the laundry and went through four total structure rewrites. and it has turned him from a very simple piece of code into a very very elaborate piece of code and it’s all self-taught.

I’m an engineer and I lead the technical development here at First Build. The passion that we look for in successful engineers is you got to see the problem and want to solve it and Jack has that and spades. He really
sees problems and really likes to dive in to figure out what it takes to solve it.

When Jack makes a significant improvement in anything the corners of his mouth turn up ever so slightly.

TR & Dad laugh!

TR:
That code Jack wrote is now on a small device that attaches to both washer and dryer via a cable that plugs into the diagnostic ports in the back of each machine.

Turning the knob on the machine gives you immediate feedback:
[Sample Sounds]

It even allows you to press a button on the device while the machine is running and hear how much time is remaining.

[TR in conversation with JD & SD]
Have you gotten any feedback from anyone who is visually impaired who may have used the device?

JD:
Yeah…So we put a device in the Kentucky School for the Blind. So we’ve gotten good feedback from them.
And that same person who gave us the feedback about the cook top from the American printing House for the Blind, he has given us great feedback on it as well.
SD:
Not only has he been able to take their feedback you know one on one, but he’s since been able to release software that provides the features that they asked for.
[TR in conversation with JD & SD]
Congratulations to you young man! It’s a really cool thing you’re doing. Dad you too. Obviously you introduced him to it. What are you learning about accessibility?

SD:
I’ve made appliances for twenty five years and we’ve got we call it a heuristics evaluation. Where we look at the usability of controls. And from a I mean just a basic use of what could be in a control to make it more accessible I’ve learned that there are they they can actually be free and we can start putting them in appliances that we make today. If something has a tone capability instead of having it beep the the same beep as it slews through maybe a couple different selections. If it has a high and low tome Automatically it’s much more usable. With these types of insights you know we can put a home beep, it the minimum and that’s free.

We started to update our heuristics evaluation. I’m taking what we’ve learned in this point of view and seeing how we can update our control algorithm so that everything comes
out a little bit more accessible.

TR:
Of course, I had to ask about an iPhone app

SD:
That’s probably where in a few years I think many of our appliances will end up.

Wi-Fi has started to be added to our top end appliances including laundry and there is
a laundry app. One of the things Jacks work has done is uncovered these communications that Go back and forth in the app don’t exist. He’s actually telling
them the things that they need to do to create a more accessible app experience..

[Tr in conversation with JD:]
What’s your favorite piece of technology right now Jack?

JD:
My favorite piece of technology right now that I want is probably a Mac Book.

SD:
Santa Clause is getting some hints!

[Tr in conversation with SD:]
And it sounds like he’s been a real good boy!

[Tr in conversation with JD:]
Do you see yourself going more into what area? Do you want to stay with manufacturing coding, I heard games what do you want to do?

JD:
I’m not sure exactly what I want to do. As long as it involves computers, programming it will probably be good with me.

[Tr in conversation with JD:]

And accessibility too, right?

JD:
Yeah!

[Tr in conversation with JD:]
Laughs!

TR:
It’s refreshing to know that this talented young man and possible future leader in technology is already showing signs of committing to accessibility.

Right now, the First Build Talking Laundry Module is available for one GE washer and 2 dryers 1 electric and one gas.

The modules right now are being produced on demand and available for purchase
via the First Build website; firstbuild.com

It costs $99 and works for both washer and dryer. and comes with the cables and AC adapter.

The device is 5 x 5 x 2.5 inch and has built in speaker and volume control knob and includes magnets on the base to hold the unit to the side of dryer

I’m Thomas Reid for Gatewave Radio

[JD: from the piece… long pause and he then says… No!]

Audio for independent living!

TR: RMMRadio Outro

The purpose of technology is to help us accomplish a specific task. The first tools used by our ancestors in Africa could be considered assistive technology.

Accessibility, just extends the us. For too long us only included those with fully functioning… fill in the blank.
More people are understanding and being informed that just because your eyes don’t function at a certain level, you don’t hear the way others may or any other disability, that doesn’t mean you don’t have to get the same things accomplished.

I can really appreciate this story for several reasons.

I can relate to the Dad, Sam, recognizing that his son’s interest. Then challenging him to get involved with a project that has a real world purpose. Encouraging him to not only get better at coding but gaining an early lesson about technology – it should improve our lives.

There’s another lesson that can be gained… it’s about disability but even more so it’s about humanity. Everyone has unlimited potential. Disability doesn’t reduce that in anyway. People do.

People who see limitations and then whether directly or otherwise restrict someone from reaching their potential.

People who internalize that idea and restrict themselves.

People who refuse to make their products accessible even after learning that by doing so they are restricting 20 percent of the population who has some form of disability.

Whether from a business or creative perspective, not working towards a fully accessible product is a very limiting move. Convincing me once again that the limitations are in the eye of the beholder.

Accessibility advocates will tell you the goal, is accessibility included in the design phase. The time when all those involved with the creation of the product are beginning to figure out what the product will look like and how it will work. It sounds like Sam is taking steps toward that. Especially realizing that it doesn’t have to be that complicated.

We can say that Jack getting involved at 14 is right in line with that. Part of the problem is that accessibility isn’t often included in computer science curriculum.

Getting introduced to the concept of accessibility at 14 years old, makes me optimistic about the future.

You might say this is one person, one story, but that’s never really the case unless the story goes untold.

Well Jack’s story has definitely made its way around the web and I’d like to think that the accessibility conversation has been advanced a little further.

Shout out to Sam and Jack DuPlessis First Build and GE for advancing access for those who are blind or visually impaired.

And here’s hoping Santa is listening to this episode of the podcast and Jack finds some cool stuff under that tree this year!

You know what else is cool? Yes, you do!
Subscribing to this here podcast. You can subscribe on Apple, Google Play, Stitcher, Tune In Radio and follow on Sound Cloud.

Give the podcast a rating, a review and or tell a friend or two to take a listen.

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

TR:Happy New Year!

I know some of us are not feeling that happy in 2017 and possibly longer. I don’t know like 4 years!
Well, as long as we’re not six feet under or my personal favorite stuffed into an ern sitting on a mantle… we’re good and we can make things happen.
We can fight…fight the power!
But first a new Gatewave piece I know you’re going to like and some extra immediately following!
Hit me!

[Audio: RMMRadio Theme Music]

TR:
Meet Robert Lewis, the Executive Director of the Radio Reading Network of Maryland. With over 35 years in the business, he is more than qualified to run the network. We’ll hear more on that, but it’s his life experiences that are truly compelling and offer a glimpse to what it was like growing up as an African American attending a segregated school for the blind.

RL:
I went to the Maryland School for the Blind, here in Baltimore Maryland. It was a wonderful place to go to school. I started there in 1954. It was a nice school but in the very beginning there was one side for the blacks and one side for the whites. And you were not allowed to sleep on the white campus . The two races went together for school but after that we would go our separate ways the first couple of years that I was there. That’s the way they had the whole setup.

Things were done to you or things were done that would not be tolerated today.

In the beginning they wouldn’t  buy Black kids Braille writers and things of that nature until like 50’s or more like in the 60’s. They started doing some things for Black kids that they didn’t do before and they would do them for the white kids.

You would be surprised what we had to deal with  in the 50’s and 60’s in a blind school.

TR:
The discrimination, limited social interactions, like at parties.

RL
As soon as we started to dance with one of the  white girls, the party was over. That party was ended!
They weren’t going to have that.

Society makes people prejudice. If they had left us alone it would never had happen, but because the teachers and because of the house parents and so forth  letting you know that you were black, who cared?
The students didn’t care!

The Lion’s Club used to come out and deal with us.
And at one time the Lion’s Club did not deal with Black kids.

TR:
the discrimination lead to varying degrees of abuse.

During a school Halloween party, a member of the Lions Club was responsible for guiding Robert to his chair.

RL:

He grabbed both my arms and walked me backwards to the chair.
I’m a 6 year old kid and this is a full grown man and he was squeezing my arms as hard as he could to try and make me cry and I said to myself he’s trying to hurt me but I’m not going to let him know that it hurt. So I didn’t and after he got me to the chair he pushed me down with a little bit of force. That was his way of saying well I don’t really like doing this or I don’t like Black people and I don’t like Black kids.

TR:
There was the even more abusive punishments dealt out by those charged with protecting and educating blind children.

RL:
Some of the Black kids were punished to the point that we had to stand out in the hall at night with no clothes on.
First we didn’t understand it but then we realized that the person that was doing that may have had a little problem on the side.

TR:
The discrimination continued as Robert traveled outside of the state competing with the school Wrestling team. He recalls, they couldn’t eat in restaurants.

RL:
We went to one restaurant and the lady said you got to eat as fast as you can so we can get you out of here before the owner comes  back because if he saw we had Black people here he would fire me!

TR:
In North Carolina, it was more than getting a meal.

RL:
Guys jumped out of the car and came over and they were going to beat us
all up.
We had no idea … What is this all about? Is it because we are blind; no, it’s  because you’re black and you’re blind!

TR:
Eventually, the segregation came to an end. The children lived together.

At first the parents were very upset about it and they didn’t really want it but  in order for the school to get money from the state, they had to integrate the school.

TR:
Remember, Robert described the time he spent at the Maryland School for the Blind as wonderful. Discrimination and racism were just a part of his school life.

We had a lot of terrible things that we dealt with but  we also had good things because we had a lot of white friends that we went to school with that would do anything in the world for us.

Maryland School for the Blind had one of the best wrestling and track teams in the country so we went all over the place.
We learned so much and we had so much fun as far as the students together.
We had a really good soul band good jazz band.
I grew up with the Beatles . I grew up with the platters. I grew up with Elvis Presley.
Some of the kids that were white, we learned their music and they learned ours.
I would come home and my sister would say here comes the little white boy!

TR:
In some sense, Robert really does straddle two identities. Not black and white, but rather black and blind.
The intersection of the two present a fully unique experience.

As a young African American growing up in Baltimore Maryland in the 1950’s and 60’s , Robert observed the events taking place in his neighborhood from a different perspective.

RL:
I heard one day when the police came out and they sicked the Shepard on the neighborhood and one guy named frank grabbed the dog around his neck and killed him.
You could hear in the wagon, you could hear the beating he was getting.

TR:
The wagon he refers to is the police patty wagon used to round up and transport suspects charged with criminal acts.
Robert says that the recent episodes of police brutality in cities like Baltimore aren’t new.

RL:

When they would beat the kids in the wagon, you could hear the wagon going up and down. if they wanted to find out  if you were telling the truth they would take a phone book and put it on top of your head and then hit it with a police stick. And there were no scars. What they would do is open the window.  they’d say you can tell us what we need to know or you can jump out the window. or take the beating.

TR:
Once , the additional identity of being blind could have possibly saved his life. As a young boy traveling in the car with his family, he recalls when an officer stopped his father for speeding.

RL:
the police was giving my father a ticket and I reached out to touch his gun and the policeman stepped back and drew his gun to shoot me. My father said oh please don’t shoot my son, he’s blind. And the policeman said oh he’s blind? So he took the bullets out of the gun and put it in my hand and let me play with it . He said, I’m not going to give you a ticket I’ll let you go this time. He said, but every day  for the next week I want you to buy your son an ice cream cone and every night for the rest of the week he’d come by the neighborhood and say did your father  buy you an ice cream?

TR:
By no means was Robert’s childhood full of violence.
residing on the school campus during the week, he returned home on weekends.

RL:
Man it was fun because I could come home and tell  them what I learned as far as in school, but then I could get on the roller skates and skate up and down the sidewalk and ride my two wheel bike. My grandfather was a mechanic, I had my hands inside automobiles. My mother would take me to the five and dime store and let me buy a toy. She treated me just like she did all of her other kids. My cousin Mack Lewis had a boxing gym in Baltimore. He was a very well-known manager of boxing. He would train Larry Middleton Vincent Pettway… some of the big time boxers. I would go over to the gym and listen to the guys box. I’d go around listening to musicians. I went over to the stable and rode the horses. I could honestly say I felt just like any kid that could see because I really think I had some angels looking out for me. I really enjoyed hearing things and dealing with things that I dealt with  you know in the neighborhood. Friday nights and Saturday nights was a great time because everybody had a good time. They had crab feasts. They’d walk up and down the street.

TR:{In conversation with Robert.}
So you were not at all isolated. You were definitely part of the community  it sounds like.

RL:
I was part of the community, yes!

TR:
Community, in his neighborhood, school and even activities that lead to lifelong passions like music.

RL:
I got my start playing marching band music. I played Sousaphone in the band. I played the Base Drum and from there I went to a complete drum kit. Being totally blind and a drummer, drummer’s completely different than other musicians. When you go and tell people you are blind and you play drums … I told one guy and he said I mean, I could see you playing the horn, but ain’t no way in the world I can see you playing the drum set cause you blind. How you gonna find the drums and the cymbals. I play an 18 piece drum kit! I’m a very good drummer.

I played with 15 and 18 piece bands.

I played with Stevie before.

TR:
So we’re clear, he’s talking about Stevie Wonder.

RL:
He came to the Maryland School for the Blind and we played  together.

TR:
Today, Robert is back on the campus of the Maryland School for the blind.
Not with the school, but rather in his job with the Maryland Radio Reading  Network, a radio reading service for the blind and others with print disabilities.

RL:
I started as a board operator and I’d go to work and people would whisper and say is he blind? This is a radio reading service but they had no blind people working there. I started as a board operator and moved up the ladder and I became the Executive Director.

TR :
Some of his responsibilities?

RL:
Fundraising, directing,   , setting up all the program, fire those that need to be fired or hire the people that need to be hired.

TR: {In conversation with Robert}
What would you say are the aspects of your specific experience  that have either helped or make your job more challenging?

RL:
The hardest thing is proving things to people. Proving what you can do.
If I ask someone for money and they’ll say to me well what do you do at the station? How do you know if you’re on the air or not? Or how do you know what time it is? And after a while, all of these stupid questions just get to you but, you can’t let people know they’re getting to you because they really don’t know. So you have to answer those questions as polite and as nice as you can do it. You have to be nice to people and after a while I wouldn’t say you get tired of being nice, sometimes you get tired of the way people talk down to you

I love my job and I like what I’m doing. If I sit home retired I’ll probably weigh a thousand pounds.  so I’m trying to avoid that  or find something else to do probably go into some music, but right now my whole job is what I do now with the radio station and part-time  stereo sales.

TR:
This is Thomas Reid
{James Brown’s “Say it Loud”
“Say it loud, I’m black”
Simultaneously…
RL:
Your Black and Blind…
James Brown’s “… And Proud!
{}

for Gatewave Radio…

Audio for Independent Living!

[Audio from : KRS1 “We’re not done” “We’re not Done”… “Check this out” from “You Must Learn”]

TR:The intersection between disability and race, gender and other identities is something I’d like to explore more.

It’s now part of my own life experience and with people with disabilities being the largest minority group, it’s probably an effective way to promote disability related issues.

If any of these apply to you and you have a story to share or know of someone who does, please send me an email…
ReidMyMindRadio@gmail.com.

It was a real pleasure speaking with Mr. Lewis and I hope to do so again. I can just imagine all of the other stories he could share.

In fact, there are more stories that were not included in the Gatewave piece.

Sometimes it’s hard to explain the level of ignorance people display in response to blindness or disability.

Some of the stories can be entertaining, but often they’re confusing. And as I like to say, you can’t make sense from nonsense.

As you heard in the end of the Gatewave  piece, Robert sells stereo equipment part time. After selling some equipment, he called the customer to check in with him two weeks after the sale.

RL:
He said, as long as you live please don’t ever call me. I said, don’t ever call you again? He said no, because I have to have eye surgery next week.

TR:
Ohhhhhh!

RL:
… and I know it’s only because I bought that equipment from you.

I said to him, did it rub off?
{laughing!!!}

He said please never, NEVER, never call me again!

I said, OK!

TR:

Recently I was reminded about someone who I knew for years, who didn’t say this to me but definitely treated me as if I were contagious!

And like Robert said…

RL:
Ok!

TR:

I wanted to end the conversation  on a positive note because we all know those haters are going to hate and ignorance is out here!

Plus it would only be right especially profiling someone who has been through all that he has and refers to his experience as wonderful. That’s an optimist folks!

I asked Mr. Lewis to give me some music recommendations. I thought I’d pass them on to the podcast listeners who enjoy a variety of music.

RL:
I don’t really listen to a lot of the new stuff.
If you’re a gospel person I consider the older gospel like Aretha Franklin or James Cleveland to be outstanding. If you really want to get into the going back into the world and listening to oldies but goodies and things of that nature think songs like “What’s to become of the broken hearted”. robins had some really good stuff out. “The Masters Call” It talks about a situation that a guy got involved with and was able to find god. When I’m really down if I want to hear something nice I listen to “Palisades Park” by Freddie Boom Boom  Canon which really is a very nice song to give you a little bit of upbeat or some things by gene Pitney  or things like that really will help you, inspire you music wise. Just getting a boost. Even down to Leslie Gore. I don’t mean songs like “It’s my party” but I mean really good songs that she did that were just outstanding; “Love and spoonful”. The Temptations had an unbelievable bunch of songs that really move me. I mean I love music. There’s so much music that that I really really enjoy. When you look at big bands sounds. I think one of the best instrumentals that I ever heard  in my life was Jimmy Smith’s “Mojo”. And only because no one plays an organ like Jimmy Smith. No one can move their hands and feet like he does; God bless the musician! He was unbelievable!
If you listen to that song and you listen to his right hand what he’s doing with his right hand is beyond what a musician can do. I enjoy so much of the old stuff. I mean Mandrill. I like a horn section. I love tower of Power. Ray Charles’ band moved media also have to put Jimi Hendrix in that line up. There’s so much harmony in some of the groups that came out of England. Crosby, Still, Nash &young. To me Cold Blood has an unbelievable band. They have Lydia Pense who sings for them. Oh my God that girl can sing!
James Brown’s band was fantastic. More so than his singing. His band was as tight as they come. But Ten Wheel Drive is also another tight band to listen to. And also Gail McCormick and Smith. They took the version of the Shirelle’s Baby it’s you. They have a horn section there that is fantastic. There’s nothing like 8 or 9 horns playing together like that . Like Tower Power does… My dream someday would be to play a song with Tower of Power or Ten Wheel Drive. These guys are tight!

TR:
Now before you go to your choice of music apps and begin listening to some of these suggestions, do yourself a favor and head over to your podcast app and subscribe to Reid My Mind Radio. It’s good for your mind, your body and your soul!

Peace!

Hide the transcript