Good Life Project - Undeterred: From Devastating Diagnosis To Radiant Life

Episode Date: July 21, 2015

What if you knew why you were here from the time you were six years old? Cara E. Yar Khan is a what I’d call a “purpose outlier.” Most people never discover a driving purpose in their lives, or even a collection of fierce interests. If they do, it most often happens later in life […]The post Undeterred: From Devastating Diagnosis To Radiant Life appeared first on Good LifeProject. Hosted on Acast. See acast.com/privacy for more information.

You have to look at yourself and say, where is my real beauty? It's not because I can or cannot walk straight anymore, because I can't do a fancy turn in salsa. Real beauty comes out of who I am inside and what I believe and how I treat others and my relationships. Kara Yarkon, today's guest, has spent her entire life, from the times she was pretty much a kid, in service of others. As soon as she had the ability to, she began to travel the world, becoming involved with organizations who would put her on the ground in some of the

most challenging and sometimes dangerous places in the world, in service of others. Not just becoming a voice for the voiceless, but literally being on the ground, helping them in a stunning, compassionate, and largely selfless way. So when she received the diagnosis at the age of 30 of an incredibly rare and degenerative disease, how she handled that and how she continues to dance with it, to move with it, and to integrate it into the way that she lives her life and continues with her quest to serve is inspiring, stunning, shocking, eye-opening, motivating. I'm so happy. I'm so excited to share this conversation, her story, and her gorgeous and inspiring outlook, her lens on life and what she's here to do and what we're all here to do. So I'm so inspired and excited to share that with

you. So let's dive into the conversation. I'm Jonathan Fields. This is Good Life Project. The Apple Watch Series 10 is here. It has the biggest display ever. It's also the thinnest Apple Watch ever, making it even more comfortable on your wrist, whether you're running, swimming, or sleeping. And it's the fastest-charging Apple Watch, getting you eight hours of charge in just 15 minutes. The Apple Watch Series 10. Av hours of charge in just 15 minutes.

The Apple Watch Series X. Available for the first time in glossy jet black aluminum. Compared to previous generations, iPhone XS or later required. Charge time and actual results will vary. Mayday, mayday. We've been compromised. The pilot's a hitman. I knew you were going to be fun. On January 24th. Tell me how to fly this thing.

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The pilot's a hitman. I knew you were gonna be fun. On January 24th. Tell me how to fly this thing. Mark Wahlberg. You know what the difference between me and you is? You're gonna die. Don't shoot him, we need him! Y'all need a pilot? I knew you were going to be fun. Tell me how to fly this thing. You know what the difference between me and you is? You're going to die. Don't shoot him, we need him!

Y'all need a pilot? The Apple Watch Series 10 is here. It has the biggest display ever. It's also the thinnest Apple Watch ever, making it even more comfortable on your wrist, whether you're running, swimming, or sleeping. And it's the fastest-charging Apple Watch, getting you eight hours of charge in just 15 minutes. The Apple Watch Series X, available for the first time in glossy jet black aluminum.

Compared to previous generations, iPhone Xs are later required. Charge time and actual results will vary. You're sure there's one big bundle of curiosity for me. I love that. I'm not sure how else to kind of phrase it. You know, it's sort of, I got an email from a friend of mine, I guess family of yours, right? My cousin.

And she said, you just have to meet this woman. Like, her spirit and her story is just astonishing. You guys just need to talk, whether you interview her, whether you just hang out, whatever it is. And then he sent me a video, so I know a little bit about your story and a little bit about where your heart lies and also some of the interesting struggles that you have defined to a certain extent in your life. So I want to walk through that a little bit, if that's cool with you. Sure, absolutely. So take me all the way back. Tell me, where are you from?

Originally from Hyderabad, India. That's where I was born. Raised in Canada from a very young age. When did you go from make the jump? Just before the age of two. It's very much Canadian. I'm a bad Indian. I didn't know anything about politics or Bollywood. There's a huge Indian community in Toronto, though, isn't there? Yes, which probably half is my family. I think we're about 300 people in Toronto. Then there's another 200 scattered all over the world.

Yeah. So what, so you're hanging, so you basically grew up in Toronto then? I did. Well, actually, pardon me, no, high school I did in Toronto, but all over Canada. Montreal, Winnipeg for a few years, Calgary. What was that about? All the travel? My father's an architect and had studied at McGill in Montreal when he was young and gone back to India. Then we moved to Canada for his work.

So what kind of a kid were you? Quiet, nervous, insecure, never wanted to disappoint. By the way, you guys can't see this, but sitting across from you right now, like confident, radiant, strong, it's kind of almost hard to believe that. Yeah, I don't think I came into my own, if you want to say, as a woman with such a level of confidence, but also just happy with myself until probably the last couple of years. Very much related to, you know, this new struggle, which I think is such a positive word, a new struggle adventure in my life. All right. So we're going to get there. I just want to fill in a little bit more. So you grow up. What were you into? Did you, you went to college at some point? I did. Yes. I studied international development in my undergrad in Canada,

because I knew at the age of 12 that I wanted to work for UNICEF, the United Nations Children's Fund. So something happened at the age of 12. Something happened at the age of six. I watched a telethon for starving children in Africa for the famine and where you could sponsor a child. I think it was World Vision. And very distraught at six years old that there were little kids that looked like they were in so much pain and they were sick.

And I said, oh, well, we should send them some of our dinner, just share our food. It was a very simple solution to me. And it was solution to me. And it was explained to me that's not the way it's done, and it was a menial amount, maybe $12 if that. Of course, to a six-year-old, it was a fortune. Didn't have the money, so I collected coins from my neighbors and sponsored my first child. So at the age of six, I understood that there was injustice in the world,

that someone else was suffering and that we needed to help them. It was very clear. I knew when I grew up that I wanted to help people who were in need. And at the age of 12, in school, we learned what the United Nations was, this great, huge political organization that tries to make the world a better place. So I said, well, when I grow up, I'm going to work for UNICEF. And it was as simple and as clear as that. And that was just it.

That was it. And people to this day say, you always said what you wanted to do. I wrote it in the yearbooks, and I was always ranting about the UN, and speech competitions, writing competitions, volunteers, social justice projects, international development in my undergrad. By the time I graduated, I was fluent in French, Spanish, and English, my mother tongue. And then I started with the UN right after college. I won an internship and employment competition.

So what were you actually doing then when you started that? I was hired as a program person in Ecuador with the United Nations World Food Program to map food insecurity around the country. So travel village to village and do surveys. Within the first two weeks, however, I overheard a conversation that they needed some plane tickets to send a delegation. I got them for free. So I became a fundraising

officer. I've spent the past 15 years now doing corporate fundraising. So, but you've been in the field a whole lot from what I can sense. 13 years. Yes. This is United States. I'm now in Atlanta is my 10th country. What's the deeper draw with all of this for you? There's an incredible satisfaction or sense of purpose in serving others. In knowing I have resources, I have knowledge, I have contacts, I have the ability to, in wherever small or large way, do things, be connected, get engaged, that makes a difference in other people's lives from the very basic of saving children's lives. And that is just,

I wake up every day and I'm very clear what my calling is. And I've just, I'm driven by it every day. I never sort of wonder what am I doing in life? I never sort of wonder who am I? Where is my place. And that has just come from a very young age. It kept me out of a lot of trouble. I bet. But it's also, you know, it's such a, I've sat down with now hundreds of people and had similar conversations just about them discovering something

that really lit them up. And that is such, what you just described is such a rarity, you know, to actually just kind of know at such a young age, this is it. This is why I'm here. And it's solitary. And this is what I will very likely do for the rest of my life. Absolutely. Do you know that?

Absolutely. I mean, well, people always say you've always done what you said you were going to do. And I was like, well, of course I have. And that is a luxury because I feel bad for my friends who are working the nine to five jobs, living for the weekend, who are really miserable. And they are so afraid to pursue their passions or their dreams because with that comes a level of uncertainty or insecurity. And I think people are really afraid to step out of the box. And for some reason, I'm much more comfortable, I think, being outside the afraid to step out of the box. And for some reason,

I'm much more comfortable, I think, being outside the box, maybe than inside the box. And it's just things have worked out. Maybe luck. I'm outspoken. Maybe that just that helps being the person I am determined. Yeah. And you've also, I mean, you spend substantial amount of time and I think some people would also look at the career that you've chosen and the way that you've chosen to go about it. Also, you've been in harm's way. Yes. Talk to me a little bit about this. My first Africa post was in 2007 in Angola and all international female staff had personal body guards because it was not safe to walk out on the street alone. Each corner had a gang and it was that just being separated from people on the streets was difficult for me

because of course it's hard to fit in anyway. But being in a country where at the time after 30 years of civil war, there's no public transportation system. There's no sewage system. I mean, there's still bullet holes in my building. It's a nine-floor walk-up. You almost feel like not even uncomfortable because you're grateful for the security you do have when the majority of people around you don't. I had access to health care. I had a place to go and sleep every night that had four walls. I had access to food. So even when I had malaria five times, even when I did break my foot and I was surrounded by a gang, you know, of boys and my bodyguard thought that I was going to be attacked.

They actually lifted me up and helped me. It's having perspective. It put everything into perspective. So in saying in harm's way, sure, having cholera while I was in Haiti, yes. Having a bodyguard because of threat of being raped, yes. Living in a country that's the kidnapping capital of the world, yes. Needing to have a SWAT team with me to accompany me to go do a film about children with disabilities.

Here I am supposedly a humanitarian trying to help people. Yes, you're in danger, but again, in the context of which I was in and putting everything into perspective, I couldn't have been in a safer place. Yeah. And it's also, in a way, it's like you weigh, okay, there's that type of danger. And then there's also the danger created by never actually acting on the thing like you feel like you're here to do out of a sense of fear. They're different, very different kinds of danger, but also both have the potential to

really profoundly constrain your life. Absolutely. And I think that going back to just saying, you know, I've now I'm confident in the coming to my own old as a woman. I think the fear that I have always had, one is disappointing my father, and I'm probably never disappointed except maybe mini skirts in high school, but is being alone and feeling lonely. And these are two things that I've actually come to a point, I'm 38 years old, where I've never been alone. I've always had an incredible number of close, close friends. Like some people have one friend, I have

tens and tens and tens of very close friends. I some people have one friend. I have tens and tens and tens of very close friends. I have an enormous family who supports me. But that sensation of also feeling lonely, because when we're in solitude, we're always looking for it, created a lot of fear in me. And I think that that drove some of my behaviors and socializing. I love to cook. I'm always bringing people around me, congregating me. And it's taken all this time to feel really confident and happy just in my own, where I don't any longer have that fear of being alone or being lonely. You're working for that voice that just doesn't stop calling you for a period of years. You're out in the field.

You're doing incredible work. And then you wake up one day and something's different in your body. Talk to me about what happened to you, what's been happening to you, and how it all began. Sure. At the age of 30,

I was diagnosed with a rare type of muscular dystrophy. There's only 1,000 known patients in the world. It affects all of my muscles from head to toe, skeletal muscles. It's a muscle-wasting disease, so my body is physically dying. It actually started to manifest itself in simple falls, little falls. I used to dance salsa, Latin dancing. I used to teach classes in university. I love dancing.

I still love to dance. And it sort of set off alarm bells when people started to say, oh, you're limping, you're limping. And it took years to be diagnosed. But when I was diagnosed, at the time it did manifest itself just as a limp. When they said, you have to end your UN career, move home with your parents, get ready for a wheelchair, and sort of just succumb to this, that just sort of didn't make sense.

It was almost as if they were speaking a language I didn't understand. I was like, well, of course not. Why would I do that? You should figure it out. And I think having faced different types of adversity growing up, by the time this came along at the age of 30, I was like, well, we'll just figure it out. And again, the perspective of seeing tens of thousands of people who had so much less than I did and were able to survive and persevere on a day-to-day basis facing poverty, violence, etc., I would easily be able to figure this out. Over the past eight years, it has progressed to now where I use leg braces in my shoes because my feet are like dead stumps at the end of my legs because I don't have any muscle in them whatsoever. And I have a walker, which I affectionately call my Lamborghini.

But this has completely changed not only how I live, how I see myself, and not so much changed the way I work, but it's strengthened it. It's made it so much more meaningful, because in my purpose of serving children, I found my calling, which is to be a voice for people with disabilities. I actually really love my life. I've always said if I was to live this life again, I'd want it to happen again. Even though I can't dance anymore, I can't have children anymore, which was always a dream of mine.

There's so much beauty that's come out of the perspective of living with a disability. The struggle, because I say I'm struggling, which is the truth. I'm not suffering, but I am struggling. What's the distinction in your mind? Suffering is when something is difficult and it gets the better of you. And it debilitates you emotionally, psychologically, mentally, and potentially also physically. It's when what we would often manifest as physical pain, that emotionally, where it inhibits us, that is suffering. I do have physical pain, but I do not have, I don't get depressed. I don't feel like I have a psychological or mental or suffering

that comes along with this because it doesn't hold me back from doing anything. Yes, there was pain associated or sadness associated with not being able to have children, being told that, or not being able to dance, but it's not suffering. There's a difference. Struggle, on the other hand, is things aren't easy. I mean, I got stuck on the curb getting out of the taxi here in New York and needed help. The suitcase fell. I struggle

just getting dressed in the morning, having to stand up, sit down, stand up, sit down, keep my balance. I struggle lifting my walker into my car. I struggle getting on my horse for my riding. But that struggle for me is a great adventure in life because if you face it, you have to be incredibly courageous and And the courage builds and builds and builds, where you really do feel like the sky's the limit. And every time someone puts a barrier in front of you, it's just a very clear determination of, well, hold on a second. Let's just not just necessarily walk around it. Let's look at this. Can we figure this out? Slowly but surely, can you figure it out? And in most cases, you can. Yeah. And it sounds like a ton of that really came from your years of exposure to people who

are just in some of the worst circumstances on the world, especially small kids. Yeah, absolutely. And I've got to imagine, it sounds like from the time you were six and on, you were wired to figure things out anyway, no matter what. But just that having the experience of seeing, you know, seeing the truth of so many people and their existence around the world and being able to sort of frame, you know, whatever we go through as against that backdrop, this guy's just so powerfully informed. It's perspective.

Yeah. Yeah. Absolutely. I mean, again, I always thought no matter what happens to me with this disease, and the prognosis is severing capacity within 10 to 15 years. I'm already 12 years in. Still not in a wheelchair, but, I mean, we have patients who are completely bedridden. No matter what happens to me physically with this, I will have my family. I have all these beautiful memories of all the 10 countries I've lived in around the world.

I have my friends. I have my education. I've had a wonderful, continued to have a wonderful career. And life experiences, simple things, simple things. I can close my eyes and feel the sensation of what it is to walk on wet grass. I know what it's like to stand in Rome in the Pantheon with the light shining through the ceiling. And I've taken a photograph of that. I mean, I have a plethora, just a huge library of all these wonderful memories.

Nobody can take that away from me. And on the flip side, although I might not be able to experience the world in the same way, if my body changes, it's the relationships. My relationships have become so much stronger and sincere and real. Like what is really important? What is a real relationship? Having real discussions about things that are important to me or important to other people because of my disability. Why? Because I had to be vulnerable in learning how to ask for help. I'm very independent. It was a struggle for me too and confusing and conflicting to think, well, I really need to ask for help in certain situations. And people who were in my life, it was, they were yearning to do anything for me.

And so in allowing them to help me, our bond has become so much stronger. And I've been very lucky that my friends and family are so devoted to me, and they've come on this journey. They've learned to talk about disabilities. They've learned to talk about illness and loss and struggle in a different way. And that then applies to their life, obviously in a different way. I mean, it's got to be interesting also. I mean, and that's so extraordinary. Tell me if this is part of your reality, too, because this is a curiosity. So a while back, I was sitting down and recording an episode of this, and we had a conversation with an amazing woman who stuttered for her entire life. And halfway through the conversation, whatever it was that my imposing presence was really triggering her.

And I don't even know if triggering is the right word, but she was stuttering in a very pronounced way. And I found myself wanting to finish her sentences for her because I knew what she was trying to get out, but not knowing what was appropriate. And eventually, halfway through, I just stopped. And I was like, I said, can I just ask you something? I said, I don't know what's appropriate here. I want to learn about you and how people experience you,

but I don't know what's the appropriate response. And she said to me, she said, first, thank you, just for asking. When somebody sees somebody who, by all appearances, is young and vibrant and beautiful and strong and confident, walking down the street with a walker, Lamborghini, beautiful walker as it is, right? I've got to imagine that it also, people would be confused in a way. How do I, do I change the way I would normally just walk up and say hi? Can you talk to me about this a little bit? Sure. Yeah. There's a lot of staring. And for them, they're confused. Did I have an accident? Was I born like this? Most people

think I've had an accident. I mean, it's incredible how many times people will say to me, well, you don't look like you have a disability. And I said, well, what should a person with a disability look like? The experience has been one that I'm very grateful when people do ask, similar to that woman was grateful, like, what do I do or how do I help or what is right? Because you want to learn. It's a reflection of compassion and being empathetic. And we, people with disabilities, I think anyone facing adversity,

appreciates that human kindness. For me, it's been just, again, New York City is tough for me. I've had to ask strangers for help so many times. I don't really get self-conscious because I'm so wrapped up in the moment of managing the walker and the crooked streets and trying not to bump into people that I just don't have the emotional energy to figure out anyone else. Having said that, in my line of work, I do get to attend a lot of beautiful formal functions, and I would love to just one night not have to worry about the struggle of the walker and the braces and just be the beautiful belle of the ball in my dress

and not worry about stairs or my dress getting caught in the wheels and then people staring and people wondering because not everybody is as kind and empathetic all the time. I mean, I have had a colleague call me that cripple girl, and I cried. I just was just mortified that someone from North America and an intelligent professional would use such a rude and cruel word. And then it was like, he's talking about me. It was very difficult. And I've written a reflection about why does the word disabled hurt? Because it's what it's implying, right? This disease is not me. Yes, the impairment is a part of me, but I actually think it's made me

stronger rather than weaker. Sometimes people have those in Haiti and two women were saying out loud in French, like, oh, look at the way she walks. And they were disgusted by the way that I walk. And that's just very, it's hard. And depending on the situation I'm in, that particular one, I was at an investment conference and Bill Clinton was in there. I was like, I don't have time for this. I got to go to work. Like, I got stuff to do.

Exactly. And that's usually what it is. It goes over my head. But unfortunately, most people who are facing something that they might be judged that aren't as strong or as stubborn or can just let it, you know, shake it off. And that's why you don't see so many people with disabilities out. out in the mall or especially traveling abroad in airports where I'm a young person with a disability. And we think in North America, oh, no, but this is in the public because you see the Super Bowl commercials, you see the fundraiser for ALS, you see someone in a wheelchair at a shopping mall. It's really not. There's so many more people with disabilities in society, but they don't come out because they're afraid of the stigma and discrimination. The physical barriers of just not having an accessible environment

make it impossible for them to be fully included in society. And so that's, it's hard. Yeah. Yeah, I mean, when we were just talking to set up this conversation, immediately I'm going through my mind, I'm like, okay, is the path from the curbside into the home studio, would it be okay? Is it clear? Should we go run the studio somewhere else?

I guess I just assume everybody sort of thinks like that. No. Yeah. It's very nice of you. Thank you. I don't think it's nice. I just think it's human. I think you come from a place of you. Thank you. I don't think it's nice. I just, I think it's human. I think it's, you know, you come from a place of compassion.

It's like. And to be fair, I think, I think if people have, especially when friends are going out with me or colleagues, you know, they tried, I asked them, is it accessible? And they're like, oh yeah, sure, sure, sure. I was like, well, yeah, but there's two stairs at the entrance. They don't, one, necessarily understand what exactly it means. But secondly, we just don't think about it. I mean, I used to dance my heart out all night long in four-inch heels.

I never had to think about accessibility the way I do now. And now it's in every single step I take is the ground flat that I can keep my balance and not fall. And I think that now that you've had the interaction with me, and maybe there was someone else in your life who you knew with a disability, even for a moment or a relationship, it does completely change your perspective. And the way that we look at our environment, the way that we might engage in the next conversation with someone and asking the question, are you comfortable? Or how do I manage this? Or how can I help you?

I think also that there's a tendency to look at somebody who, where there's some observable physical challenge, and just make the assumption that there's something cognitive going on or emotional going on as well, and treat the person that they're not, you know, quote, all there. Yes. And people will speak slowly to me as if I'm a child, or if I'm stupid. Oh, hi, honey. And it's not that I don't appreciate the compassion, but don't be patronizing and don't belittle me. And I very much just engage as myself and they're like, oh, they're usually shocked and oh, you work?

Oh, you work for the United... Oh, you have an international career? Oh, it's just, I really enjoy those moments. You're just sitting quietly milking it at that point. Yeah, what are you doing? I'm going to ride my horse. Uh-oh. So, again, I think that that's really why it's another reason I do what I do.

I want to help break down the barriers of the stereotypes that we judge a book by its cover. People look at me and automatically make assumptions about what I can and cannot do. And this is really dangerous because you immediately prejudge, you immediately exclude, you immediately make assumptions. But let that person teach you. And then I think that might even reflect about ourselves. Are we putting up barriers ourselves

in our own lives? How are we thinking? We're obvious, we're having that sort of prejudgment about someone else. That says something about who we are, and the way we live our lives. No, absolutely. Once you're diagnosed, and once you start to move forward, do you go back out into the field right away? I did. Yes. I moved to Angola. I and then went on to gosh, I did an assignment in Botswana and then China for the Sichuan earthquake emergency Madagascar took an eight month break to do grad school in Italy that I moved to Thailand, then Mozambique back to Madagascar and then Haiti for two years for the earthquake emergency. It didn't slow you down a whole lot. Yeah, no. Did you notice, did you feel that it was getting increasingly physically more difficult?

Absolutely, yes. I mean, and it becomes, we sort of gauge the progression of the disease by abilities, which you can and cannot do. And it started with not being able to go on my tippy toes anymore, which is not just important to reach the can on the top shelf, but also for salsa dancing, you dance on your toes, which was much more important than reaching the top shelf. But it went from needing one leg brace to one cane to two leg braces to two canes,

losing my balance more than not being able to stand alone at all. By the time I got to Haiti, I actually had to check the box on the application form of, yes, I do have a physical disability. What was that like the first time? It was very scary because the medical approval process took so long. They said, well, she can't go to the field. But I said, well, why not? There's no protocol.

I mean, it wasn't right after the earthquake. And I asked a question, will I be a threat to my team, to the emergency team? And they said, well, no. I said, well, if you can help me do my job, make small accommodations. We worked on 12-foot containers on the military base at the end of the tarmac, the airport in Haiti. So my container was right low to the ground. I had a driver who was comfortable because in Haiti there's so much stigma against people with disabilities. They think they're possessed by the devil or they're contagious.

And this particular driver volunteered to work with me and he'd have to lift my legs up to get into the vehicles because they're these huge field vehicles. And I just couldn't get in by myself. And hurricane season, which happens every year, it's too windy for me to walk outside by myself. And my colleague Dominique would come and check on me and say, do you need to go to the washroom? And she'd walk out with me. So yeah,

there were accommodations that had to be made. And then when I moved to the United States, um, physical therapists try to shut a walker down my throat. I fought it for about five months, but then with each assistive aid comes liberation. I mean, this Lamborghini carries 200 pounds. You should see the shopping. I'm looking at it right now. You guys can't see this.

I got a nice, pretty full-looking suitcase sitting on top of it right now. We are New York, so. Yes. But talk to me more about with each thing comes liberation. Each thing, and what's interesting is that that's also been described with each loss because it's a loss, it's a physical loss of strength and muscle mass. And that's how like, in my mind, that's how I would sort of perceive, but you're saying there's another side. Yeah, because every time you lose something means you

now need an assistive device. And what's amazing, that assistive device actually empowers you physically to do more, to walk with more balance. And something as simple as that, when you lose your balance, say you wake up groggy in the middle of the night, you walk to the washroom without balance, you feel out of control. You might stumble and get frustrated. When you stand up and walk with not being dizzy or not losing balance, you're in control.

And with that comes a sense of comfort and empowerment. So when I can confidently walk into a board meeting, because I have my walker, I'm not having to focus on one cane, second cane, first left foot, right foot. It's a different way of liberation than now I'm just engaged in being in the room rather than being lost in every step.

I don't get lost in the disease because these aids are allowing me to just, just flourish, just get on with things. Yeah. That makes a lot of sense, actually, when framed that way. At some point, do you have to eventually entirely come out of the field? I am out of the field now, although I'm hoping to go to Bangladesh later in the year. I'd like to do assignments. So I am engaging with a couple of UNICEF country offices around the world. I've started my own company so that I could stay in the United States. So now I have a contract of doing public speaking with UNICEF in the United States.

But yeah, absolutely, I plan on getting to the field. Yeah. So tell me more about starting your own company. What was motivating? Mortifying. It's like everything I've ever done. An entrepreneur. Oh my goodness.

Send me to South Sudan, but starting a company? Well. What I was talking about before about my calling, being a voice for children with disabilities. Every time I give a speech, whether it's a small event or a large event, people line up to come and talk to me afterwards. I have had so many people be so brave to share their story, their adversity with me, and it was because of something I said

that helped them connect in that moment. And I don't think there could be any greater gift that someone could give me or any stronger sense of being in this world than actually connecting with people. And so by starting my own company, I'm able to continue serving UNICEF, but I'm able to help other organizations, disability organizations, other charities, whether it's in their fundraising or marketing, but also in just outreach to families. It gives me the flexibility to be in a

lot of places. So are you focusing some of your energy now within the U.S. in terms of who you're serving? Or is it still a U.S.-based company that's really focusing outside? It's all U.S., actually, right now. That's got to be a really big shift. It is huge. The United States, my 10th country, the most difficult to transition to.

This was the first. I had lived in developing countries for 13 years without all of the frills, let's say. Coming to the United States, which is abundant luxuries and comforts everywhere you turn from the moment you switch on the light to opening the tap and water comes out that you can drink. Those are basics that people take for granted. And for me, not having had it on a regular basis for over a decade, and even then when I did have it,

it was a luxury because I was better off than most people in the country. Coming here and seeing one so much waste, people so unhappy, and they have so much, the safety, the security, you have rights here you can actually say i have a right this is law in this country you can go to police officers you can go to people in

uniform and they will help you you can seek a lawyer who will help defend your rights you you know so these things that the grocery store goodness, going in and just the selection. I mean, it was nauseating for me. I would literally become dizzy. They told me I had PTSD when I came to the U.S. because I just want plain yogurt. I just, fat-free, 1%, 2%, this, organic, blah, blah. It was too much. And then on top of that, the technology.

I had my first smartphone when I came to the U.S., my first elevator fob, which is this plastic that makes go to my floor. Everything. Things were so new and being so connected all the time. And it was just like this flurry of choices and selection and excess. It was a complete flurry of excess that I just thought, my goodness, if we could take just a tiny percentage of some of this and spread it around the world. And it's not to say that Americans are not generous, absolutely are incredibly generous and giving for causes around the world. But just there is no other country that has so much of everything. Yeah, I often, I think about that on a pretty regular basis. I think we do take so much for granted, you know,

and I think traveling to different places in the world where they don't have what we have, even the most basic things that we just assume are, you know, that's just, you can't live without this, is a game changer. You know, I think it's so important. In my mind, that's, you know, I, you can't live without this. It's a game changer. You know, I think it's so important. In my mind, that's, you know, I think you can travel for so many different reasons. You can travel for fun, for culture, for food, whatever it may be.

But, you know, traveling to open your mind to the realization that you were born into some good fortune in a place. You know, by no means of yours and no choice of yours, you just happen to land in the right place at the right time. And the rest of the world doesn't have a lot of what you have and that what you take for granted is, I think it's important to sort of, to slam into that on a fairly regular basis to just kind of make you realize, kind of rattle you into a state of gratitude and compassion that I think it's so easy for us to lose. You know, it's kind of like it makes me,

whatever I've been bitching and moaning about in my life, when you have an experience with somebody or an entire village or entire culture, you know, with dramatically less fortunate, you just kind of take a step back and like, oh, I need to rethink my values a little bit. And that could then, you just kind of take a step back and like, oh, I need to rethink my values a little bit. And that could then, you're right, completely changes the way we treat others.

Yeah. Because it's the way that we, when we have that understanding of I am so fortunate, it fills us up. Yeah, no doubt. And then it changes our, when you have knowledge, it changes your attitude. And when you have a certain attitude, it changes your behavior. And I find that just the fact that we have that luxury to travel for whatever the any reasons that you so many people don't have the luxury to travel because they want to. They're fleeing

conflict, they're fleeing natural disasters, or people who can't leave their country, they don't have passports or who are caged in because of political reasons. I mean, it's just we live in a completely different mindset than so many people in the world. So what was it? Why? Why did you stay? Where? Here.

The opportunity to share my voice and my message is the opportunities are here. I'm not saying I don't want you here by the way well if you don't like it no I'm just I mean I'm just curious if this is really so jarring because you probably could have been in a lot of different places because again it's yes

could be in a lot of different places but the opportunities that are provided in the United States because of technology because people are more open and accepting for people with disabilities, because the United States being the most powerful country in the world, it's like the more and more advocates that we have here, I feel, the more and more philanthropists that we have here, it can have a ripple effect in other countries. It does make a difference. And so who knows? I mean, I don't know that I'll always say, I do love traveling around the United States. It does make a difference. And so who knows? I mean, I don't know that I'll always stay.

I do love traveling around the United States. It's a beautiful country. And there are things, sure, that I miss about being in the field. But I'm very grateful, even if it does make me dizzy. I'm very grateful for everything that there is here. So the most powerful country in the world, you still believe that? Yeah, absolutely. I do believe that the, I think economically, obviously, China is a tiger that with the US and China working closer together, what could make greater change if they could agree on politically,

it would make a huge difference in many struggles around the world, Syria, for example. But the influence of the United States, because of its power, economic power, but also of its military, the role of the President of the United States, I mean, Barack Obama is a celebrity all over the world. But absolutely, it has the clout. And I think that's another reason why it's so important to get the United States on board in especially social justice areas. For example, the United States has not ratified two international human rights treaties, that the Convention on the Rights of the Child. It was just ratified by Somalia. US is the only country in the world that hasn't ratified it. And then the Convention on the Rights of Persons with Disabilities. If the United States doesn't sign and ratify these international human rights treaties, then on the international stage, this country that has so much clout, other countries can turn around and say, but you're not walking the talk. So it's another reason to sort of be here and be a part of the movement.

Which you are clearly passionate about. Thank you. You mentioned when we were in the early part of our conversation that the powerful sense of confidence, which I'm feeling sitting across from you, was relatively new, really just the last few years. What's it arisen out of? Probably having to redefine myself as a woman. Imagine a woman, 30, prime of your life. You want to be beautiful. You want to have a partner.

You want to have children. And so we identify so much of our attractiveness of physical looks. I mean, when you first meet someone in a bar, you're looking at them. It's that first physical sort of attraction. And then afterwards comes the personality, intelligence, et cetera, et cetera. And I think that having, when you lose yourself, I mean, my body isn't what it used to be. And it's not that I'm, I just don't have the physical strength. And I wobble when I walk.

My legs kick out. You know, people have described me as Pinocchio or, you know, a doll or Gumby. And it's just sort of you have to look at yourself and say, where is my real beauty? It's not because I can or cannot walk straight anymore or because I can't do a fancy turn in salsa. The real beauty comes out of who I am inside and what I believe and how I treat others and my relationships. And I think, again, when I had to actually identify myself as a woman with a disability, I looked at other women with disabilities and I'm like, they're beautiful just the way they are. So it was really ideas that I had about other people my entire life, applying them to myself.

And for some reason, I hadn't done that before in the same way. I lived a double standard. Everybody else was beautiful and I wasn't good enough for some reason, I hadn't done that before in the same way. I lived a double standard. Everybody else was beautiful, and I wasn't good enough for whatever reason. And this, which people would say has taken away so much, it's given me that strength and confidence, given me that perspective. And now I'm really so happy in my life. It's just there's such a sense of calm, again, not feeling lonely, not feeling alone, not feeling insecure. It's, I don't know, it's almost like I think when people find their truth. Yeah, the word that comes to mind is grace, just sitting across from you.

Thank you. Sort of an energy. How do you define the word disability? Disability is not an impairment. People do have impairments, physical, cognitive, mental, psychological. But the disability is when there is a barrier in front of us, whether it's physical or some stigma or discrimination, that prevents someone with an impairment from engaging fully in society. This is what we call a human rights-based approach, and it's about putting the person first. So simple things that we can do to follow this is language.

Not the blind boy, but the boy who has a sight impairment. She's not the deaf girl. She's the girl who has a hearing impairment. We put the person first. So we see the child or we see the mother or we see the man first because they're a human being before anything i was corrected a couple years back when i spoke about somebody as either bipolar like you know the bipolar person or you know like or you know like she's schizophrenic

and somebody in their family said stop um it's not like that does not define the body of who they are. You know, she is living with schizophrenia or living with bipolar disorder. And at first I kind of like I felt a little defensive. I was like, wow, but, you know, I'm trying to think of all these other examples where we say it the other way and it's okay. And then I was like, but you know what? They're not the same.

And it took me a little bit to wrap my head around that, to be honest with you, and to kind of check myself when I think about my own language. It's true, and it's hard. I mean, in the United States, Canada as well, we're so politically correct, and the verbiage is changing all the time. But think about confined to a wheelchair.

Well, that person isn't confined. You can physically take them out of that wheelchair. They're a wheelchair user, you know. It's even just when we look at the source of where do, it's more about where does the word come from and what does it imply. We don't use the word handicap. It's not an accessible word in the English language in North America anymore. Why? Handicap.

Hand. So if I take my hand to grab a baseball cap on my head, take the cap off and put it towards you, begging you for money. Is that the origin of the word? Yeah, that's the origin of the word. And we don't use it, as mentioned, the disability community won't use it in English anymore. In French, they still say handicapé, but it's accepted in the language. And that's the negative connotation, that I am begging you. I cannot do something myself. You have to help me.

I have no power. So this is where, you know, it's just little things like that. You'll never think the same again when you hear the word handicap. But it took our beautiful conversation today to learn that. And so I think, again, when you ask, like, what do I want to do? Share. Share everything that I'm learning, because it's all new to me, too, with as many people as possible.

Yeah. How much of your work and your advocacy now is devoted towards this conversation versus a lot of the sort of more international human rights-based issues? I'd say 50% is probably disability work and consciousness work, versus a lot of the sort of more international human rights-based issues? I'd say 50% is probably disability work and consciousness work, whether it's through other disability-related organizations, or it's also tying it in. I mean, we can talk about any humanitarian emergency, whether it's the earthquake in Nepal, water and sanitation, health, nutrition, violence.

I was at UNICEF headquarters today having a conversation about violence against children. And a lot of people who would be really interested in joining a campaign to stop violence against children. Well, did you know that children with disabilities are three to four times more likely to experience violence? So it's always something that we can bring into a conversation because they're part of society. They're not a separate part of society.

Yeah, no, that makes perfect sense. Anything else that's important to you? Just seeing people first. Be kind to each other. I love experiencing kindness every day. Looking forward, what do you want to build? I would love to build a society of people who are aware that so many other people in the world are suffering. Not that they're only aware, but they want to do something about it.

I mean, I really believe in that. We follow icons. And it's not that I want to be an icon, but people are inspired by Gandhi, Mother Teresa, Martin Luther King, people who make a difference and do good in the world. And so if I can somehow be a little bit a part of that, that's, yeah, what I'd love to build.

Consciousness. Which segues beautifully, actually, into the question I always wrap up with, which is the name of this is Good Life Project. So if I offer that term out to you, to live a good life, what does it mean to you? I think for me it means living a life of service where in that service you're actually making a difference in people's lives. And that can be a one-minute moment of reflection where something you've said has touched their heart and given them hope or strength, or it can be actually, you know,

in completely changing their opportunities and empowering them, whether it's with, you know, finances for their family or to build a new school or for an organization, but service, absolutely service. Thank you. Thank you. Thank you. Hey, I really enjoyed that conversation. If you found it valuable as well, would so appreciate if you would just head on over to iTunes, take a couple of seconds and let us know, share,

share a review or rating, always honest. And if you found this episode, the conversation valuable and you think other people, maybe friends or family would enjoy and benefit from it, go ahead and share it with them as well. And as always, if you want to know what's going on with us at Good Life Project, then head over to goodlifeproject.com. Check it out. We're enrolling our annual camp GLP, Summer Camp for World Shakers, Makers, and Entrepreneurs right now. Really, really awesome stuff going on in August of this year. And that's it for this week. I'm Jonathan Fields, signing off for Good Life Project. Thank you.