Dr. Mona Minkara

Professor, Bioengineering at Northeastern University

Mona Minkara lives in Boston, MA and is an assistant professor of bioengineering at Northeastern University. She has been visually impaired since childhood due to macular degeneration and cone-rod dystrophy. Her natural love of science led her to study chemistry and Middle Eastern studies at Wellesley College, where she received a National Science Foundation Research Experience for Undergraduates grant. After receiving her PhD in chemistry at the University of Florida, she began postdoctoral work at the University of Minnesota. Later, she returned to Northeastern where she uses computer simulations to obtain a better understanding of the chemical interactions that occur inside the lungs, with the goal of engineering better drug delivery treatments.

Mission Astro Access

In 2021, Mona was selected as one of 12 ambassadors to participate in a parabolic flight to test for accessibility in zero-gravity and high-gravity environments. The group, comprised entirely of scientists with disabilities, preformed tests to investigate how space vessels should be modified to ensure inclusion in the field of space travel. Read more about the mission here.

Planes, Trains, and Canes

Mona hosts a video series titled Planes, Trains, and Canes, where she explore the accessibility of public transportation around the globe. Find more information here, and watch the season 1 trailer below:

Awards and recognition

Mona's work has earned her an array of awards, including the Martin Essigmann Outstanding Teaching Award, the Holman Prize in 2019, and over a dozen grants and fellowship positions. She's been featured here by News@Northeastern, which details her love of traveling alone and her work at Northeastern. You can also find her on an episode of the RadioLabs podcast and on an episode of the Blind Abilities podcast.

Vision Towards Success Podcast Episode
Transcript

Elena Regan: Forward. Forward. Left. Mind the door.

Announcer: There are over four million working aged blind and visually impaired people in the United States, and over two million of these people are unemployed. This is a staggering statistic, but many people defy these odds and are happily and gainfully employed and we wish to share their stories with the world.

Elena Regan: Hello and welcome to Vision Towards Success, the podcast that highlights stories of career development and lived experience. This podcast is brought to you by the Polus Center for Social and Economic Development. In our program we feature employment success stories from visually impaired individuals for people with disabilities and their allies in hopes of showing just how smart, hardworking, and capable this diverse community is.

Hello and welcome. My name is Elena Regan and in today's episode of Vision Towards Success, we will be interviewing Mona Minkara, a biochemistry professor at Northeastern University and global traveler. In this episode, we will hear about her times as a student and as a professor, as well as her global explorations through her web series, Planes, Trains, and Canes. It is my pleasure to introduce Mona and today's interviewers, Joshua Pearson and Katie Crocker.

Joshua: Mona, could you start out by giving us a bit of background on yourself and your upbringing?

Mona: So my name is Mona Minkara, I am currently a professor of bioengineering at Northeastern University in Boston, Massachusetts. I was born in Maryland. I was diagnosed when I was seven years old with macular degeneration with cone-rod dystrophy. My parents are both immigrants from Lebanon. But around the same time I was diagnosed we had just moved to right outside of Boston, I grew up in South Shore here. Yeah, I don't know, what else would you like to know? I'm the oldest of three and I would say I'm a quite adventurous individual.

Katie: So you mentioned you were diagnosed young, I'm actually familiar with cone-rod dystrophy, I have it myself. But that being said, could you describe a little bit more in detail maybe what it is that you can see? What your vision's been like through your life?

Mona: Sure. I mean, so currently I can barely see much. I have light perception, I probably have less than 1% peripheral vision in my left eye so it's pretty negligible. When I was first diagnosed, it started off with me losing my central vision because of the macular degeneration. And I remember being six years old and being in my room and looking at my pile of toys and then looking again and they were gone and it freaked me out. Just freaked me out. But it was just basically like if it was in my, "blind spot," I couldn't see it.

And then that degenerated quite quickly, I think by the time I was 10 or... I could no longer really read print or see any of that. And yeah, I lived in what I call in between for a little bit, But now I use my white cane. I travel a lot, I actually have a YouTube show called Planes, Trains, and Canes where I got funding from the Holman Prize, which is an awesome prize put out by the LightHouse for the Blind in San Francisco for a blind ambition. And I was able to get money to get myself filmed as I traveled independently around the world using public transportation. I went to five different cities.

Katie: We're super excited to hear more about that, actually. I think we've all seen it and definitely very excited to hear more about that. Before that though, growing up as you've experienced a decrease in vision, what kind of assistive devices, technology have you used?

Mona: So when we were younger, I didn't have smartphones. Like I'm 34 years old, graduated high school in 2005. I think that the advent of the mobile phone was a little bit before that. But JAWS on a computer was mostly the thing that I used growing up. I never learned braille as a child, I really do wish I did. Currently I am learning braille, I use JAWS on Windows, voiceover on the Mac. I use an iPad, I'm talking to you from my iPad right now. I use voiceover on my iPhone. I have an Apple Watch, so I'm covered in tech. And most importantly I use my cane to navigate and move around. I walk to work, I live a lifestyle that I design so it's accessible to me.

Joshua: I think that's a really important thing, being able to have the autonomy to choose your lifestyle and make that accessible to you. I'm curious around your career, I'd love to get into your schooling, your undergrad and your grad work and then your eventual professorship. How did you come to settle on the sciences?

Mona: Oh, good question.

Joshua: Sciences are a really tough field for anybody with a disability because of the inaccessibility of STEM, so how did you fall into that?

Mona: Well, it honestly begins with the fact that when I was a kid I just loved science. I was curious about how the world worked. I'm a PBS kid, I watched Bill Nye the Science Guy, I watched Magic School Bus, Miss Frizzle and all the adventures they went on. And it inspired me, it really did. I was just more and more curious about how the world worked. And so when I was diagnosed and it was eventually brought to my attention that my love of science was impractical, it didn't phase me because I always was the kid that liked to pursue what kept me interested, not... I couldn't just feign interest. I had to be interested in what I was doing if I was going to succeed. And so it started me on a path of pursuing what I wanted even though people were deniers of it a lot of the times.

And that was a challenging path. I remember, I tell the story and I've told it before, I remember being bored out of my mind in the lower level classes in science and wanting to take advanced biology like 10th grade. And I went to a public school. So I went to the head of the science department and he was like, "You're going to fail." But I was like, "But I have the right, this is the taxpayer's money. My parents are paying taxes, I have the right. Any classes should be open to me." And the teacher herself was like, "You don't belong in my class. I'm not going to change my teaching for you. You're going to fail." And I was like, "I don't care." I was so bored that I didn't care about failing. Failing was not something I feared.

And it's because I suppose nobody really had much expectation of me. And I thrived actually, I ended up taking that class, I loved it, I got one of the highest grades. And the teacher actually apologized to me by the end of the year. My sister was two years younger and is also blind, didn't have any of those issues.

Katie: I think it's incredible that even at that younger age that you took a stand and you said, "No, I have this right to go into this field. I have the right to pursue what I'm interested in." And that's amazing.

Mona: For me it was about, "I'm so bored, how bad could this be? Maybe I'll learn something new." It wasn't even, "I'm going to prove these people wrong," or, "I'm taking this stance to make..." No, it's like, "Gee, I'm so bored. What worse could happen?" It seemed like it was already fated for me that life will be difficult. So okay, I'll take this class. You know what I mean? It turns out that I could do it. And I remember after that class I started taking advanced everything. I really did learn that I don't writing as much, at the time. Things have changed a little bit. But I learned I like math and science more.

Katie: So thinking about that, can you take us through going into college, both your undergraduate and graduate studies, what was that experience like?

Mona: Very different, actually, from undergraduate to graduate school. So as an undergrad I had the awesome opportunity of going to Wellesley College and it was the best time of my life honestly. I got to explore the world in a different sense. I actually was the first blind student to graduate with a science degree from Wellesley College, and they've been open since 1875, so that was huge. And I had to advocate for disability accommodations when I was a student there. And eventually I got it, like two years in I got what I needed and I thrived. But then I learned from that and I knew that getting a PhD in chemistry was going to be challenging. So for graduate school I intentionally chose schools that laid out the red carpet for me when it came to the disability services. So I did that and that gave me a different experience from that lens. And I went to University of Florida because they were just so great.

Joshua: What would you say are the differences between your undergrad and your grad school in terms of how the campus approach disability as an identity?

Mona: Oh, that's a really hard question because I also changed as a person, I feel. But when I was at Wellesley I just didn't know yet. And I think I didn't know necessarily how to fully advocate. And they didn't know. It was just much smaller... We're talking about 2,500 students total. And they had never dealt with anybody like me. But when I went off to University of Florida, we're talking about 50, 60,000 students and they have a disability service that's big. And I had grown up and become more mature and knew how to advocate a little bit more and was secure about what I needed. Yeah, it's really hard to compare from just an institutional perspective.

But I could tell you that when I was applying to graduate school, I had gotten into other institutions, ones that were technically, "better," a higher up on the ranking scale. I got into the fourth best chemistry program in the country. But when it came to disability services, they definitely were not good. They were really not good. And even to a point in which I remember trying to talk to disability service and be like, "Hey, do you provide assistance? So people who are blind, especially because I'm in science, I'm going to need assistance from people." And then they were like, "We don't do that." And then the lady... And that's technically not legal for them to say.

And then I remember hanging up and I was like, "Whoa." And then I got a call two minutes later from the same office and be like, "No, we legally provide what we see fit for you to get your education." So they gave me a legalese line. And then I was like, "Wow, if this is happening when I'm not even there yet? This is going to be interesting." And then I get a call a couple days later from the guy, and I wish I got his name, I wish I could look him up, but he was retiring and he was in charge of the blind and deaf students on campus at this particular university. And he was like, "Do not come here. I'm retiring, they're not replacing me, and they will not be supportive to somebody like you." He literally said this to me. And I was like, "Whoa, okay. I don't have time to fight this. I want to succeed."

Joshua: I find it very interesting that you have now gone on to have a career in academia and I wonder how have you seen that support for disability manifest itself now that you're on the other side of the fence and you're a professor?

Mona: So I also got a good amount of support at the University of Minnesota where I went to get my postdoc. And that's because I had an advisor, phenomenal advisor, who advocated for me. He just was like, "I want this postdoc, you give her what she needs." And they did. And the disability service there really worked with me and they were awesome. But then when you go higher and higher up in the world of academia, there are just less and less people with disabilities and so it becomes a little bit more obscure. And so let's just say that there have been challenges while being a professor, but people are trying. You just have to break down the initial barriers.

Joshua: You doing that-

Mona: [inaudible 00:14:00]

Joshua: You doing that on a personal level or on a systemic level in conjunction with other disabled faculty? How are you breaking down those barriers?

Mona: Both, actually, both. And eventually I had a specific experience that led me to actually apply to a grant within the university to raise awareness about disability related issues. And I got the grant and so we are running programming all throughout this academic year to discuss these issues.

Joshua: Amazing, amazing. Shifting gears to your Planes, Trains, and Canes series a little bit, and we can get back to more of the education pieces as things come up-

Mona: Oh yeah, I need to tell you about my research too.

Joshua: Yeah, please, let's start there. Talk about what you're currently doing.

Mona: Okay. So I am a computational chemist by training, which means I chemically... I model chemicals on a computer. So what I've decided to do from the training that I got as a graduate student and as a postdoc is I model a substance called pulmonary surfactant, which is a substance found at the air/water interface in the lungs. And I decided to do this literally before the pandemic, right before the pandemic hit, eight months before. And it became extremely relevant, so we tried to understand how this substance work, it has a lot of works... It has a lot of implications for lung diseases. We've also been able to model COVID and try to find if there are any natural therapeutics that could fight against COVID also. So we've been able to use this tool and technique in so many relevant ways, it just gets me really excited.

Joshua: Let's break that down in terms of the accessibility related nature of your work. Walk us through day to day in the life of Mona in work. What does that look like? How are you accommodating? What are the challenges? In terms of somebody who is blind entering this field, where do they start?

Mona: Okay, so I have to first start off by saying that also as a professor you tend to do more of the big picture stuff that I love, so the nitty gritty is not as relevant. But I'm going to still cover some of the nitty gritty. So when I was a postdoc doc for example, I would get in, I knew that I had to submit certain simulations or calculations related to my experiments, we call them, or chemical compounds that I'm studying. And I would do that using the terminal window and I could use that with voiceover or JAWS. But it wasn't always fully accessible.

I actually work with individuals, call them access assistants, and they help describe a lot of the world of science to me because it's not accessible from reading journal articles, because a lot of them are not even readable PDFs. And if they are, then the graphs and plots and chemical equations are not accessible. So it's from journal articles to coding on the computer, which is a little bit more accessible. But then you get these trajectory files that shows you how the molecule moves. And coming up with creative techniques so that I can interface with the data. I have a whole slew of things I can talk about. I even created a page on my website called Blind Scientist Tools where I outlined every single piece of equipment, like software, hardware, how I do different aspects of my job down to the detail. Because a lot of it I've had to create the protocols myself.

Katie: Now one of the things that I'm curious about throughout your training and in your present day, in terms of any hands on research that is done, thinking specifically about things done, lab work and all of those things, how did you approach that throughout your education and even into today?

Mona: How did I approach my work? You mean from an attitude perspective or...

Katie: From an actual, physical, hands on perspective. Thinking specifically about any lab work that you were responsible-

Mona: I had [inaudible 00:18:16] people, that's the reality. I've had people, I needed people to describe the world of science to me to the best of their ability. And sometimes that wasn't always like the best. But it's constant problem solving for every task that's placed in front of me. And honestly, that's probably part of the reason why I enjoy it. Nothing comes easy but it's exciting because let's say you figure it out, you feel so empowered. But you always have to work with whatever tools you have around you. So different problems, different tasks, different solutions.

Katie: I think it's particularly poignant that you have been studying things especially that are relevant to the world around us right now with the pandemic. With that being said, how has the pandemic itself changed your workday?

Mona: Well, in the beginning of the pandemic we were not seeing one another, right? We were all in quarantine. And a lot of my work depends on a human being taking my hand and tracing the plot so I can visualize it in my head, and so that was gone. And so then it's from a five second process turns into 10 or 15 minute description that takes just so much longer with the person trying to virtually describe what they're seeing because I don't have direct access. So that would be one very specific example.

Katie: How has that continued, thinking about where we are now?

Mona: Well, I mean honestly now I actually do work with these people more in person. We're both careful and we're vaccinated, all of that. So things got a little bit better.

Katie: So considering the fact that in addition to doing all of this research, you're a professor as well, how has your experience teaching compared to your interest in researching? How do those two intersect and what do you find is most interesting about that?

Mona: I feel like I need both, just as a human being. And I remember learning this in graduate school, I really enjoy teaching and interacting with students, but I also realized if I'm teaching the same thing over and over again, I get bored. So I really enjoy the research aspect. But then if I'm in the lab all day by myself or with the same person, just researching, it also isn't as exciting. So a balance of both is my ideal sweet spot. And so I love teaching and interacting with students, but I also love being able to produce new knowledge and discover things that other people have not discovered. And that just excites me beyond belief.

Katie: What is your relationship like with some of your students? How do they view your blindness? Is it something that you've had any issues with? Or interesting moments that you'd like to share?

Mona: Yes, so actually I want to talk about the first time I taught a class here at Northeastern University. So I teach a class called Biomolecular Dynamics and Control, it's like a chemical kinetics class applied to biomolecules. And I was really nervous about the first time teaching. I was like, "How are these kids going to see me?" No pun intended. "How are they going to interact with me? But also how am I going to teach such a class that also has a lot of visual content and mathematical content?"

And so I actually wrote a publication about the whole experience and the way I did it is I created my own notes, I give them blanked out versions of the notes, but also I memorized my mathematical derivations down to the T so that I can just speak them accurately in front of the class. I demand a very interactive classroom environment, so I teach a little bit differently than normally what we remember from being students. A lot of times you just go to class and teach your lectures. No, this was very interactive. I wouldn't move on until I heard a yes or a no or an answer to my question. Students read and went to the board, it was very interactive.

And so by the end of the semester, and this was right around when COVID started to hit, I did a survey about how it was for them. And I found some really interesting answers. So this is what it broke down, there was one student who shared with me that their parents were mad to find out that his professor was blind. Some students shared that they decided together that they were going to take a chance and take a class with a blind professor, because I was also a new professor here so I didn't have a reputation. Some students were scared, some students had no other choice because of scheduling. But most of them ended up realizing that a professor doesn't need eyesight and they had never thought about it before. So that was a really cool conclusion by the end of it. It was an anonymous survey. You should definitely read the publication.

Katie: Well, that's excellent. And it's nice to see that you're expanding the idea and the students that are coming into your classes, you're really shaping their knowledge of how little vision is really a barrier in things. I think a lot of folks come through, especially in college there, being such a competitive environment, where people really don't understand what that's like. So I think the fact that you are as interactive of a professor as you are definitely would enhance that. You mentioned briefly that with that experience you were a new professor and you didn't have a reputation yet at that school. So that makes me think of what were your early relationships like with other faculty members and how has that changed?

Mona: It's really hard to fully judge because literally I didn't get to interact with that much faculty because then the pandemic hit. So that really distanced everybody. My colleagues are awesome here, they're supportive. I don't have anything else... I have great colleagues. But I've only really interacted with them very few times because we all went into quarantine.

Katie: It's an interesting time, especially when you're looking at folks that are maybe starting new careers, going into changes in their careers. It really set a whole new paradigm for what the working world is like.

Mona: Yeah.

Joshua: I want to circle back to a comment that you had around the fact that most of your accommodation, most of your work that you do, needs to be accommodated through other means than accessible technology. And I wonder, do you ever get tired of needing to find creative solutions? How do you deal with that potential burnout?

Mona: I get tired, but then honestly I love my job so much that I can't envision it any other way and I feel very grateful that I have the opportunity. So I feel like that balances out the potential burnout. If I was doing this for something that I really hated, let's say accounting, I can't see myself ever being an accountant, I don't think I'd survive. Sorry, not to put down accounting. But it's because I'm doing something I'm passionate about. That even though I might get tired sometimes the fire's still there. I'm still going into the office every day and trying to understand why this protein does what it does. Nobody else has noticed that it does this or that it moves in a particular way. I'm discovering that and that fuels me.

Joshua: You also seem to, based on what I know of your disability centric work, have an activist streak in you, especially around shedding light on topics that people don't often consider. Can you talk a little bit about Planes, Trains, and Canes and where that stemmed from?

Mona: Before I talk about Planes, Trains, and Canes I just want to say something about activist work too in general.

Joshua: Yeah, please.

Mona: In general, I feel like I just talk about promoting a world where people get to do what they want to do, right? That's really what it comes down to. And also promoting a world in which we don't minimize each other's potential because that just harms each other. So there's a talk I've given in the past where I call it the unseen advantage. And I give an example of how me, as a blind scientist, has dealt with this data that's very visual and how other scientists look at it in a particular way. But because I couldn't see it to come up with a mathematical way to interface with the information and because of that I was able to figure out patterns that other people missed. So I tell the whole story about this and I call it the unseen advantage.

And so this concept that I really want the world to imbibe is that you just never know what the person in front of you might be able to put forth to the table, to the table of problem solving, if you let them. And it might be something very different than you ever thought of because of their background, because of who they are. And so I call it the unseen advantage because I'm blind.

Joshua: I love it.

Mona: It's unseen. Okay, now-

Katie: Before you-

Mona: Yeah.

Katie: Just quickly, before you mentioned what fuels you to have taken part in the Planes, Trains, and Canes experiment, I guess you could say. Could you tell our listeners what Planes, Trains, and Canes is for those that may be unaware?

Mona: Oh yeah, totally. So Planes, Trains, and Canes, YouTube series, on YouTube so you should definitely go and subscribe. Where I use Planes, Trains, and my nifty cane to traverse the world, to travel the world using public transportation in five different cities. And so I travel independently. Yes, I do have a camera woman who follows me but I'm not asking her for help, she's literally just following me. She's not the one navigating, I'm the one navigating. And it's just an adventure, you know? Really being okay was trying things out in the world and being okay with getting lost. And so that's Planes, Trains, and Canes.

So I got to go to five different cities around the world, I went to Johannesburg, London, Istanbul, Singapore, and Tokyo. And each of those cities highlighted what I call to be a theme or a pillar of freedom. And it's really important that we bring that up for a little bit to discuss it because I think there's a power to feeling mentally free. And that was what this experiment or experience did for me. I felt mentally free. And I also realized that you don't actually need to travel to feel mentally free, it's this concept that when you deeply start to believe that you can try to do something, the world just changes for you. And that's what Planes, Trains, and Canes did for me.

Joshua: What were some of the things that you encountered in your travels? I'm thinking specifically, you highlighted both attitudinal barriers around the idea of when and how to accept assistance in different countries. I'm thinking specifically the incident in the London Underground. And so you highlighted those attitudinal barriers and you also highlighted specific accessibility, physical accessibility features of the built environment in different countries. What are your big takeaways around those areas?

Mona: Well, first of all, I really believe in the power of a person choosing for themselves, right? If the person has agency, let them choose for themselves whether they want the assistance or whether they want to try something on their own. And so when I was in London... And this really inspired a lot of conversation, a lot of debate online, it really sparked blind people debating with each other, sighted, it was crazy.

But what had happened is I'd gone on to the London Underground and I wanted to... Simple question, like where's the train? Where's the stairs to go downstairs? And the London underground employees stopped me and they were like, "You're by yourself. You can't travel by yourself. You have to have an escort with you. We'll send an escort with you." And it becomes a debate, right? And I'm like, "Why can't I go by myself?" And they're like, "You don't have a choice." And I'm like, "Why don't I have a choice? Just cause I'm blind?" And it becomes a whole debate.

And it really brought to attention what is going on, why don't I have this choice? And actually it turns out at the end... So if people sit down and watch it, because it's a pretty intense scene. And I was like tired, I just came off a red eye. It turns out I actually did have the choice but the cultural implication was not. They actually went and double checked the rule book. But that should be irrelevant, even if the rule was there, it shouldn't be the case.

Katie: And thankfully they finally did but that scene is just... You say it has caused a great deal of conversation and-

Mona: A lot, a lot from people-

Katie: Just the idea, I almost threw my computer off across the room, I was so angry about that.

Mona: Yeah. But it's amazing because I literally got messages from blind people telling me that I'm wasting this poor man's time for arguing, that I should accept the assistance because it took them so much work to put the assistance in. But I was never putting down the system for the assistance, I was just trying to promote my choice to choose whether or not I wanted it right then and there or not. And I didn't I wanted to try it on my own. Sometimes I might be tired and I would want it, but I wasn't putting down the system at all. But people said I was selfish, people said that I was wasting people's time, and that I was putting the disabled community behind. And then other people were like, "Good for you." So it was an emotional rollercoaster putting myself out there like that. And I have to give credit to the London Underground guy, I do have to give him credit because we got his permission to allow himself to be videotaped.

Katie: I think it's particularly interesting too, another component to what we've been discussing through these interviews is the idea of ableism and the idea that there are folks that think that we as blind people need fixing. And I think that moment really highlighted that.

Mona: Yeah. Not just fixing but somebody to look after us. It's as if we don't [inaudible 00:33:56] for ourselves. Literally, I think I got the question of where's your caretaker multiple times in London. I actually cut it off because I didn't want to hate on an entire city, right? There's still a lot of great people. But it was frustrating. There were even times in which they would look, people come up to me and be like, "Where's your caretaker?" And then they would look and notice that there's somebody videotaping me and they're like, "Are you with her?" And I have to give credit to Natalie, my camerawoman, she truly trusted in me and my leadership. She followed me. She would say, "Yes." And they were like, "Why are you letting her do this?" And she'd be like, "I'm sorry, I'm following her, she's the one in charge." She always deferred back to me. But people would sometimes just completely ignore me if they thought that she was just with me.

Katie: I find it interesting too, within just a short time of watching that you went from that incident with the folks in the metro to walking through the tunnels asking for help and having folks go around you to then those friends that you met, I can't remember his name, when you were standing in a crowded place waiting.

Mona: Oh yeah, yeah, Laurie, Yes. That guy is such a character.

Katie: That was phenomenal. And that highlights it, that shows you that it's not an entire city, it's not us against the world. There are wonderful people out there.

Mona: Yeah. This guy was really nice and his friend was getting annoyed, it was really funny. I mean I think in London I really got to experience the gamut and I think that it was a fascinating experience. Because then, actually after London I went to Istanbul and it was so different there. People left you alone when you said, "No, thank you." People helped you and you asked. It was just a little bit... It was different. And then I went to Tokyo, which was probably the most accessible city I had ever been to. So the world is full of everything.

Katie: So you think about those different places, right? And each city is so different. You look at what they have there for accessibility, both to actually physically travel say through the subway and bus system, to the cultural differences. What are some of the mobility, the accessibility things that you found in each city that really stood out to you? And what were some of those examples that you would really love to see, say for example, here in the US and the city of Boston?

Mona: Honestly, a lot of it comes from Tokyo, like from the actual technology. In Tokyo there were cane guides that were so specifically laid out that they could take you from the train to the exit to a bus stop and have you stand right in front of the doors of the bus. Like what? So precise. And they had every different train line had a different musical tone so you could tell which train was coming which train you were boarding. When you cross the street north/south it was a different sound than east/west. I mean there were little sounds, like sound markers, in the train station that would indicate if you're near the exit with a little chirping noise like a bird. Or a little sound of running like a little waterfall, then you knew you were near the toilets. It was just like I felt when I was in Tokyo, even though it's a huge city with over 30 train lines, I felt like I didn't need my eyesight at all. And that was phenomenal to me. There was brail on the railings, I couldn't read it, it was in Japanese, to help indicate which way you needed to go. There was braille on everything, really. And the cane guides just really minimized any confusion, it was fantastic.

Katie: Those cane guides are phenomenal, I wish we had them here in Boston.

Mona: Yeah.

Katie: But a lot of the things you mentioned, sound effects for example, that showed you exactly what train line was what. Those are not only examples of great accessibility for people that are blind, but universal accessibility.

Mona: Oh, yeah. A lot of it is universal. And I think one of the reasons why Tokyo really does this is part of the culture, but it's also they need to be really efficient. I don't know how many millions of people use the public transportation every day and they need to make sure that people are efficiently getting through and things are running on time. And all of that plays in a role. So if you consider all of your possible customer, then you are making the best possible product, which is amazing. That's universal design. And Natalie told me afterwards, she's like, "I saw more blind people walking around Tokyo then all the other cities combined," that we had visited. They even had cane guides that were temporary around construction sites. I was like, "What?" They really thought of everything.

Katie: Wow.

Joshua: That's amazing. Wow. That would have-

Mona: It is amazing. You need to watch Tokyo, you need to watch Tokyo and like-

Katie: Tokyo was the best.

Mona: Yeah. Oh, did you watch all the episodes?

Joshua: Yes.

Katie: Oh, definitely.

Joshua: Oh, yeah. The entire group met at this point.

Katie: Absolutely.

Joshua: Yep.

Mona: Aw, did you subscribe?

Joshua: Yes.

Katie: Yes.

Joshua: Oh, yeah. We're big fans here. Yes. Yeah.

Mona: What was your favorite to watch?

Joshua: I mean I loved... I'm a traveler and I loved all of it, right? Because it just showed independence and you tackled all kinds of things. You tackled the various... I was just very struck by how much blindness philosophy and philosophy around independence you managed to pack into such a short series in terms of lived examples and just showing you navigating these different areas and their different cultural approaches to disability. Has it made you think... Well, two parts to this. Has it made you think about your home country any differently in terms of our approach here in the States? And what kinds of conversations has this series sparked from people who have the power to change some of these things? I'm thinking transit people or any governmental agencies. I know this series was a part of the LightHouse Foundation, so I'm wondering what has been the broader response to this?

Mona: Okay, what was my first thought? You had asked... Oh, I really appreciate the fact that you noticed that there was a lot of blind philosophy or whatever packed in. What I had done is, for the first time I didn't want to lecture people about this, I wanted them to come along for the ride. And I wanted everybody to come along for the ride, and so that's why we made sure every episode was audio described. And so we did that by incorporating Ted's voice and so you can hear him. And he became a little bit of a character even though he's the audio describer. But then also everything is close captioned, right? So everybody can come along with a ride.

Then I wanted it to come through the lens of humor and comedy, right? Because nobody's going to appreciate watching somebody who's just getting mad all the time and putting down everybody around you. No, I wanted them to just experience it as it is. And I think what it came down to is I wanted to share with the world that all the world really needs, and what all of us really need, is just to be able to be ourselves. And to just go through and try to do the things that we want to do. And that's really what the whole show is about, is I'm trying to get to the places I want to get to and just live my life the way I want through that day, or whatever I decide to do. And so then shenanigans occur.

Katie: When you mentioned the humor aspect of it, the thing that comes to mind with me was when, I mean I can't remember what city it was in specifically, but there was a thing where it was counting up the number of times you said, "Thank you."

Mona: Yes.

Katie: It was making a little chime like you were adding it to a little coin bank.

Mona: Yes. Yeah. That was because they were so polite and I was thanking them and I was just thank... I thanked them, I don't know, 37 times, it was so many times. So I was making fun of myself. Or the time that, I don't know, I did math and I did it wrong because I was so tired. I totally made fun of myself. What's the point? What's the point of living life if you can't do that a little?

Katie: I think the fact that you were showing all of this but at the same time you're showing the sites. You're going to these incredible places in these cities and you're doing it because you want to. The thing that struck most with me, I think, in terms of not only what my favorite city was but the thing that made me think the most, I did an opportunity in college to go on a work study to Japan. And I was terrified because I had the notion that, well, these people aren't going to understand blindness. I'm going to get lost. I'm going to have a really hard time with the culture. And seeing everything that you experienced when you were in Tokyo, first of all, it showed me that I definitely do want to go there because I'm going to feel safe doing so. But you can't always trust your preconceived notions on what to expect from a certain culture in a certain place. You're not going to know until you experience it yourself.

Mona: And you know, bring up a really good point because if you had asked me what I expected before I went on the trip, I was going to tell you that I thought Istanbul and Tokyo would be the harder cities because I don't speak the language and that London would be the easiest city because I speak the language. But it turns out it was the polar opposite, it turns out, emotionally, I was drained so much more in London and I had to advocate a little bit more for myself. And in Istanbul, even though I didn't speak the language, I learned that you don't need common language to truly interact and have people help you. That was something that was a revelation for me. And it was easy. And Tokyo, it turns out it was the easiest to navigate just because of the infrastructure. So my preconceived notions were completely turned upside the head.

Katie: I think fear is a big part of what limits our experiences, especially if you're coming at things with any disability. All of us here in this conversation can relate to the blindness side of things and the types of fear that we experience as a result of thinking that the general public is not going to understand us. And you think about, "Well, this country that speaks our language, we're going to have the easiest time with them." Well, maybe not.

Mona: Yeah, exactly. That was a revelation.

Joshua: What feedback have you received from... You've talked a little bit about the feedback from the blindness community around various aspects of the series. What feedback have you received from the community that handles things like access to public transit and just the more accessible experience in this country?

Mona: I actually was invited to talk at this professor's class, he teaches urban design, and it was really great because I felt like I was making these students that are going to go out into the world to help design cities and thereby public transportation to think about these issues. Which really makes me happy, I would love Planes, Trains, and Canes to become a reference. People in America and designing public transportation systems, I do think we have a lot to learn specifically from Japan. Or Tokyo, I don't know about outside of Tokyo. And when I came back, I think you asked me this earlier, when I came back to Boston I was so spoiled after Japan. So spoiled. I was like, "This shouldn't be here, there should be a king guide here. There's no talking crosswalk here and this is a dangerous intersection. Where is it?" And I actually started to push for some of those to get installed and they installed on the corner of Mass Ave and Columbus.

Joshua: Specifically interested in knowing around the cultural differences that you observed around blindness, specifically in all of the places that you traveled. How noticeable was that?

Mona: The differences around blindness?

Joshua: Yes.

Mona: I mean, quite noticeable. The fact that Tokyo, the public transportation system had already built in systems for all of that versus places in London in which I had to really fight to be able to do something on my own versus places in Istanbul where I just did my own thing and if I asked for help, I got it. If I didn't want help, they left me alone. It was definitely a difference in culture, difference in the infrastructure.

Joshua: How did that change your thought process about access and autonomy from the start of your journey through to when you finished and you were presenting this to the LightHouse?

Mona: So my experiences in the different cities didn't necessarily change my thought. What changed my thought the most was really getting to a space in which I allowed myself to get lost. And that was a huge mental growth. I tell people that throughout my experience with Planes, Trains, and Canes I experienced another level of mental freedom that I had not yet knew about. A true sense of a wanderer that was free to go about. I remember having to tell myself like, "Okay, Mona, you're going to try and navigate the Atlanta airport. It's huge. It's okay if you miss your flight." And I remember having to genuinely feel like it's okay for me to truly have the freedom to allow myself to be myself and push the boundaries and explore and find the next plane.

I actually did it with plenty of time but there was a mental stage that I needed to walk through. I needed to walk through my fear, the fear of missing my flight, the fear of getting lost, and telling myself it's okay to be lost. It was a huge mental progression for me. And then I recognized later on that you don't have to travel to get to that mental freedom and that you can apply that philosophy, not just in travel, but you can apply that in all aspects of your life. To be okay to do things in a different way. To literally be okay with failure, right? It's perceived as failing if you miss your flight, but that's okay. If I wanted to, that's okay.

Katie: So it's really changed your perspective on what freedom is despite how much or how-

Mona: Yeah, for sure. I mean, I'm already somebody beforehand who was like, "I'm free." You know what I mean? But it added this other layer that I wasn't even aware, like a pressure that I was putting on myself. Because we walk around and be like, "Oh my god, we can't get lost. Everybody's already scared of blind people getting lost. I can't get lost." No, no, no, no. It just changed my mentality fully in other aspects, like in all aspects, like, "Oh, there's an event happening, I don't have anybody to go with. That's okay, I'll go figure it out and get lost on the way of trying to go to this event. That's okay."

Katie: And thinking about the travel that you've done and places that you've been, are there any other places that you want to tackle next? Different places that you want to explore?

Mona: Oh yeah. I mean, I barely began to explore the world, right? The possibilities are endless.

Katie: That's for sure.

Mona: If we get funding... I really hope I get funding for another season. If we do, we have our cities lined up, they would be Lima, Peru, Stockholm, Sweden, I'm not sure which city in Morocco yet, and Manila, Philippines.

Joshua: How do you go about selecting the cities that you want to travel to? The world is a very big place and-

Mona: It is, it really is. A few things, they all had a different reason, like I wanted to really explore something in South America, we hadn't done that yet. So it's really important for me that we go to South America. I chose Peru because I wanted to also get really cool footage of the environment and it seems to have a very unique public transportation system. And then we chose Stockholm because they advertised a fully accessible public transportation system, so I really want to put that to the test. I really wanted to experience somewhere in Africa and somewhere... Like Philippines is because of the... So each of those cities had a different reason. Because how can you prioritize all the possible cities in the world that you can go to? It's tough. And we looked for blind schools and blind culture and we wanted something different. We didn't want too similar.

Joshua: Have you thought about expanding beyond cities and getting out into the rural countryside areas of these places?

Mona: Not yet. I mean, maybe down the road this could be something we can do. Right now I am focused around public transportation because I think it's an amazing reflection of the culture and then also a really good point to start making change to allowing people to be part of society and contribute.

Joshua: Let's talk about, I guess, the outcomes of this first season. What have you noticed? You've talked a lot about the response that you got from blind people specifically around the autonomy choices that you had to make around travel and things like that. But what has been, I guess, the wider response either from the world blind community or from sighted folks who've interfaced with the series?

Mona: I mean, honestly I got a various reactions. Which is part of the thing that makes me happy honestly, let's have a discussion. But a lot of the blind community was like, "Yay, you're showing how my life looks like. It really related to me." There were people in the blind community, they were like, "You're being selfish, just take the help. Why are you making a big deal?" There were people in the sighted community that were saying the same thing. There were people inside the community and they were like, "Yeah, power to you." So I literally created conversation, which is the whole point.

And I really left it so that people can follow along and join me on this ride. I didn't want to be sitting there and preaching. Because I really do believe to each their own. And I actually show that in my show as we go along, sometimes I accept help, sometimes I don't. It depends on my mood just like anybody else, right?. And so I would say it really sparked a lot of conversation. There were debates that happened on Reddit, comments on the videos. There were some pretty interesting comments, whether I agreed with them or not is a different story, but okay, interesting, the people are thinking. People are feeling strong enough to have to say something and that is pretty cool.

Joshua: That's really great. And I love how this piece is sparking bigger conversation, I think that's huge because it's helping people think really critically about what blindness means to them and obviously the education piece around showing our lives in all of their different ways of access and looking at the world to sighted folks. So that's huge. What advice would you give to blind travelers who are apprehensive about taking larger steps? Maybe they navigate their city or they navigate their state fairly well, but they're really apprehensive around either international travel, doing something as independently as you've shown it can be done.

Mona: The first thing I would say is be gentle with yourself. It's okay. You don't have to jump to the end in a day, right? One step at a time. And it's not necessarily easy and you have to first acknowledge that, right? So be gentle with yourself. Then tell yourself that you would love to get to that point but I don't need to get to that point tomorrow. Let me first start off by taking smaller steps, whether it be walking around your neighborhood or taking the local train somewhere. Even if it means taking it somewhere and back. Push yourself a little bit outside of your comfort zone and listen to yourself. Nobody's going to be a better judge of that other than yourself.

Katie: Yeah, that's one of the fantastic parts. And really a lot of takeaway is that it is okay. And it's really progressive for each of us to explore and to be bold. What I'm wondering is, do you have plans to do any travel within the US to other cities?

Mona: I mean, honestly, why not? I think even within America there's huge differing public transportation systems and I think that that would be great. Who knows? I just need funding, right? So that's really what it comes down to, funding and time.

Joshua: How do you go about funding a project like this where you can definitely demonstrate the need and definitely the education piece, the awareness piece? This seems like it's a very fundable project, so how do you go about looking for that funding without really walking the charity mindset, which is how blindness stuff has been funded for a long time, the, "Let's help the blind," all of that stuff.

Mona: Yeah. Well, first of all, I've only done one season and the funding was a competition that I won. I won the Holman prize, it was amazing. It is available for anybody who's blind over the age of 18, anywhere around the world, and they give $25,000 for an ambitious idea. So that's all I've funded so far for this project. But the way I'm approaching it right now is grants, hopefully we'll get grants, applying for grants. And, I don't know, looking for sponsors. This is an amazing project, this is a project that should be picked up and funded, so we'll see. And it's needed and it's an interesting conversation and it can grow into more than just beyond me as a blind person. It can go to other blind people or deaf people or people in wheelchairs and see how it goes. Or maybe me and my friend in a wheelchair, we travel together and just shock everybody.

Katie: That was actually going to be one of my questions in terms of thinking about this cross disability wise, have you had a response from people in those communities?

Mona: I've definitely had people be like, "Hey, maybe I can be on your show one day. Let's travel together." Honestly, my big ultimate dream, which is a long, long term vision, if we can achieve it, is that we become so big, the show becomes so big that it actually has funds and then we can become a nonprofit where we fund people with disabilities to travel and experience that level of freedom. That is my dream.

Katie: That's so incredibly empowering, both for the people that experience it and people that are observing it through the web series.

Mona: Yeah. I mean, can you imagine? Can you imagine how cool it would be if you're a kid whose parents never let you leave anywhere and then you applied to travel somewhere and you got the funds to do it and then you're going to be on this show and you get to go and travel? I mean, how cool would that be? That's my dream. I mean, I'm sharing with you, right now we're at bitty stages, I still need to do maybe a couple more seasons and stuff. We'll see. I would love to raise money for this. I'm trying to do that and do my research, be a professor, and just trying to do a million things. But we'll see.

Katie: To shift the focus a little bit, when we met with you last time you had mentioned that your education... That you really just explored it and didn't take no for an answer, more or less. Thinking about advice that you would give to people that are expanding and looking into career opportunities. Do you have any advice specifically for those populations?

Mona: You have to follow your passion. You have to follow your heart. You can't do something just because somebody told you, "Hey, you're blind, this is the best for you." No, you have to do something because you love it. You have to. If you don't, it's just going to be miserable. Find your passion. Don't take no for an answer. Because it's your passion, it's your life. You do that in life, I think your golden. There's the book, The Alchemist by Paulo Coelho, I can't say his name very well. The story that he tells is the story of a boy who follows his heart's desire, right? He calls it a personal legend. And I agree, I think that we all have personal legends in life and that we all are trying to figure out our purpose on earth. And part of that is to be able to listen to your heart. As long as you're listening to your heart, I don't think life can be that bad. People might tell you no, people might disagree with you, all of that, but as long as you're passionate about what you're doing? That's awesome.

Joshua: Is there anything else that you would like to share, either for us to know about you or pearls of wisdom that you'd like to impart to our listeners?

Mona: I don't know, good luck, follow your heart's desire, you have one life to live. And just nothing is too impossible.

Joshua: Awesome, fabulous. Mona, thank you so much for taking the time to chat with us today. Katie, any last questions on your end?

Katie: I just want, more of a comment than a question, throughout this interview process and watching the Planes, Trains and Canes series.

Mona: Oh, you watched it? Nice.

Katie: Oh yes, absolutely.

Mona: What'd you think?

Katie: It's really expanded my mind. I've always had the desire to travel, but that fear that, "Well, I couldn't possibly go to other countries and other cultures." It seemed so impossible. But you really expanded my mind on that. And I just personally want to thank you for that, it really was an incredible thing to witness.

Mona: Well, thank you. Thanks for sharing.

Joshua: And for me, I've traveled, I've traveled the globe for a long time, I've been to Australia and Peru. And in my free time I'm a folk musician, I travel a country with a dog and a guitar and do the whole folk singer thing. But for the most part, I tend to accept sighted help, especially in airports and things like that. When I get into cities, I'm on my own. But during what I consider the crucial areas of like, "Nope, got to get my flight, got to do the thing," very much on the whole sighted assistance train. And watching you just truck on through all your different cities and go through your adventures. And like you said, finding that freedom and giving yourself permission to, "fail," and changing that perspective of it's not failure, it's an adventure. And you have completely changed my mindset on that so I really want to thank you as well.

Mona: Thank you. Honestly, I take the sighted assistance too, I'm not going to lie. There are times I'm like, "Okay, we don't time to get lost." But for the sake of the documentary, I was like, "We've got time to get lost. Let's get lost."

Joshua: Thank you so much for sitting for a second one of these with us, really appreciate everything.

Mona: Oh, no, no worries. And take care and have a wonderful day and a good weekend. Thank you very much.

Elena Regan: And now a tip for the sighted audience about blindness from today's guest, Mona Minkara.

Mona: And the overarching answer is just talk to us. We might seem too different, but the end of the day, we're all human beings. So if you're not sure how to interact with us, just talk with us. We'll tell you exactly what we need and what we don't need. So that's the first tip. The second tip is when you're approaching us, don't look down on us, right? We might be blind and lacking eyesight, but we are not lacking. We all have our own potentials and stories, and we are more than just our blindness. So get to know us.

Elena Regan: For more information about Mona and her research and projects, you can go to www.monaminkara.com. And to watch her web series, Planes, Trains, and Canes, you can go to www.youtube.com/planestrainsandcanes. We thank you for joining us for today's episode and we can't wait to share more blindness success stories on the next episode of Vision Towards Success.

Thank you for tuning into Vision Towards Success. This program has been recorded and produced by Elena Regan and David Gonzalez from the Trades Win audio podcast team in association with the Polus Center for Social and Economic Development. Funding for this program has been provided by the Libby Douvan Award from the Fielding Institute, the Massachusetts Commission for the Blind, and the Barre Savings Foundation. Additional episodes of this podcast can be found at www.poluscenter.org/tradeswin or wherever you get your podcasts.

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