The Checkup with Doctor Mike - She Doesn't Want To Cure Her Blindness | Molly Burke

Episode Date: October 12, 2025

I'll teach you how to become the media's go-to expert in your field. Enroll in The Professional's Media Academy now: https://www.professionalsmediaacademy.com/Huge thanks to  @MollyBurkeOfficial  ! Check out her new book, Unseen:AMAZON: https://www.amazon.com/Unseen-Lost-Vision-Found-Voice/dp/1419777882IG: https://www.instagram.com/mollyburkeofficial/YouTube: https://www.youtube.com/channel/UCwf9TcLyS5KDoLRLjke41HgFacebook: https://www.facebook.com/MollyBurkeOfficial/00:00 Intro01:40 Flying with dogs05:08 New Book09:05 Face Of A Charity18:10 Don't Look Blind20:55 Her Exact Condition25:38 Bullying & Family29:18 Getting "Cured"40:06 Helping Others / Showbiz47:25 Grieving Herself58:35 The Word "Disabled" / Humor1:04:09 YouTuber life / Dating1:09:42 Unusual Questions / Captions1:17:48 New Study + Cure1:32:03 Treating Any Disease1:34:56 The FutureHelp us continue the fight against medical misinformation and change the world through charity by becoming a Doctor Mike Resident on Patreon where every month I donate 100% of the proceeds to the charity, organization, or cause of your choice! Residents get access to bonus content, an exclusive discord community, and many other perks for just $10 a month. Become a Resident today:https://www.patreon.com/doctormikeLet’s connect:IG: https://go.doctormikemedia.com/instagram/DMinstagramTwitter: https://go.doctormikemedia.com/twitter/DMTwitterFB: https://go.doctormikemedia.com/facebook/DMFacebookTikTok: https://go.doctormikemedia.com/tiktok/DMTikTokReddit: https://go.doctormikemedia.com/reddit/DMRedditContact Email: [e-mail] Producer: Doctor MikeProduction Director and Editor: Dan OwensManaging Editor and Producer: Sam BowersEditor and Designer: Caroline WeigumEditor: Juan Carlos Zuniga* Select photos/videos provided by Getty Images *** The information in this video is not intended nor implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images, and information, contained in this video is for general information purposes only and does not replace a consultation with your own doctor/health professional **

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Void were prohibited. Terms and conditions apply. Please play responsibly. If you have questions or concerns about your gambling or someone close to you, please contact ConX Ontario at 1-866-531-2,600 to speak to an advisor free of charge. I live in a world that's not made for me. Not your average influencer and YouTuber diagnosed at four years old with a rare eye disease. The doctors told my parents, one day she's going to go blind, but we don't know when it will be.

I was slowly losing my vision, and then at 14, I very quickly lost the majority, leaving me now only with light and shadow. My disability has given me so much. Yes, it is taken from me, but is also given to me. I am good as I am. What I would suggest to doctors is what my doctor eventually did. She sat down with me, and she said, can I ask you a question? Does it go for it? She said, do you actually want to be cured? And I said, no. Welcome back to the Checkup podcast. Today's guest is Molly Burke, an incredibly successful creator, motivational speaker,

and one of the most recognizable advocates for the blind and disability communities. She's built an audience of millions by showing the world what living without sight actually looks like, all with honesty, humor, and a lot of swagger. In our conversation and in her new book, Unseen, Molly opens up about the eye condition that took her vision, why she doesn't want to be cured, the bullying she faced as a result of her disability, how she was taken advantage of by a nonprofit organization, and what it's really like navigating a world that wasn't built for you. From dating to tech to even falling off stage, we get into all the details. It's raw, eye-opening, and one of the most powerful conversations we've had on the show.

Do you want to coosh, baby? I know you're so excited. but you can just kush and take a nap. Okay. What does kush mean for him? Lay down. Ah, okay. There we go. There you go.

See, you just chill. You're just going to listen to Mom Naderon like you always do. How is Elton on flights? He's good. I mean, I swear the planes are getting smaller and smaller. Yeah, it's because they're trying to get the profit higher and higher. Our space shrinks. Yeah, it's like I try to do like premium economy when I can,

which is definitely really helped. It's easier when I'm traveling with somebody like my partner because then I have the leg room for both of us that he can use up. When I'm flying alone with him and I need to make sure he's just in my space, it's definitely tight. And I just pray I get a dog lover next to me. That's my question. So I've flown with Bear before because Bear was a hospital dog. So when I would bring him to the hospital, he qualified as an emotional support animal. But then they removed emotional support animals from planes.

And I just remember the few times that I did take him, people were. either all obsessed and wanted a pet and it was disruptive because of that, or the flip side where they said, you need to swap my seat. I'm not sitting in the vicinity of a dog. I remember, and I would get bear his own seat as well, just to make it even a little bit roomier for him. And his tail touched a gentleman that was sitting next to me who started yelling and saying, a German shepherd attacked me before. And now I feel like this dog is attacking me. And I'm like, sir, he's not even facing you. He waged his tail. How is that an attack? Yeah, no, I, I, I mean, I've been, I've been a guide dog user for 18 years. He's my fourth guide dog. So I've experienced all sorts of stuff traveling all over the world with them. And it's exactly where you're saying. People are like, oh my God, I hope I'm next to you. Or they are like so grumpy, so irritable. And it makes me so anxious now when I travel, especially when I'm alone. Because I can't even see necessarily when they approach to sit next to me. So it's like I can't gauge at all what their facial expression is or what their energy is going to be like. And sometimes they say,

sit down and don't even notice him because he's so quiet and he's black. So like on the ground because I pre-board, they like won't even notice he's there. And so I have to be like, just so you know there's a dog down here. And then sometimes they're like, oh my God. And so it's like you get all sorts of reactions. How do you like use this an opportunity to educate us of how we should act when there is a service dog on a plane in a supermarket. Should we avoid petting at all costs?

Should we inquire about the dog or not at all? The best thing is to just pretend it doesn't exist. Got it. Essentially, my guide dog is what a wheelchair is to somebody with other kinds of mobility issues. And so it's like the same way you're not going to go up and like start petting their wheelchair or like pushing them, which please don't. Like that's an extension of that person's body. Don't touch it. That's the same as my dog.

Like, yes, it is a dog and it's, but it's not a pet when it has the harness on. It is a piece of mobility equipment. And so the best thing is to ignore them completely. I understand for dog lovers, that's very difficult. So the next best thing is like, you can ask me about it, but don't interact with him. Sure. So like don't even make eye contact. Don't make kissy sounds.

Oh, you're so cute. I know I can't pet you because you're distracting him, which is the reason you can't pet him. So like all of those are forms of distraction, squeaking toys at him at a toy store. Like all of those things distract him just as much as petting. Yeah. Makes sense. It's been several years since we last talked. you've been on the show, very excited to have you back, obviously. We last played Operation

and you asked me embarrassing health questions. Correct. Time flies so quickly because I'm saying a few years ago, but that's like, yeah, six years ago, almost half a decade. What has happened in your life in the last six years? What have you been up to? A lot. I have a book coming out. Right. Unseen. Two and a half years, labor of love. I did not have a ghostwriter, a co-writer. There was no AI. So that was like, talk to RFK, please. I did it all on my own. And it was harder than I ever anticipated. What was the biggest challenge that made it so hard? Editing was much harder than writing. Writing was cathartic. It was just like a free flowing expression of these stories that have lived inside of me untold. And I was finally able to

like get them out and it was like freeing but then editing that was a nightmare it's almost like journaling right you probably started having an experience of positivity like starting the process putting some words down and then from there on out you started getting excited about sharing the message yeah and it's like it's creative it's fun to see like how am i going to share this story and what serves the story best and all of those kind of questions are really creative and fun like what do i want the prologue story to be how do i want to set up the story. But the editing of it, where you're like picking and choosing what parts of your life don't make the cut. Or like reading every single word and wondering, will people read this with the intention I have them to read it? Like, will they receive this message the way I've

meant it to be written? And that's weird because I know what I mean when I write something like that. But will other people take those words to mean something different? And so, So that was really weird, trying to get into other people's minds and, like, going to people in my life and being like, read this sentence. What do you think that means? Okay. What was your goal that you set out in writing this book? What did you hope to achieve?

I really wanted to share more of myself, which I think for anybody who's followed me for my social media career over the last 11 years would be surprised to hear, hi, Elton, hi, baby. It's not about you right now, my love. He's like, I don't have my, uh, he's like, where's my mic? Where's my mic? I really kept a side of my life hidden. Even being on YouTube and sharing so much. Yeah.

I'm so known for being vulnerable and open. And yet there was so much that I hadn't shared. And I felt like there was topics that I would kind of just dance around. Like if people asked, I would just give like the PR answer and not the truth. And I wanted to free myself of that. And I held a lot of these secrets out of fear, fear of hurting other people, fear of retaliation. I speak very openly about different, like, large institutions that hurt me along my journey. And I know that I'm not sharing these stories to hurt those people.

I'm sharing this story to free myself. But I know that that comes at the cost of potentially hurt. hurting people. And I've spent so much of my life being bullied and being hurt by other people that I don't want to be the cause of someone else's hurt. But sometimes in order to tell your story, you know that it is going to hurt people. And that's really hard. So that was one of the hardest parts is how do I tell this story in a way that honors my own truth, but protects people, even if they don't really deserve that protection. When you're talking about these organizations, Are you comfortable sharing some of these stories today?

What stands out to you in this journey that you haven't shared yet? When I was five years old, I became the face of a charity who was trying to fund vision research for a cure for my disease. So as soon as I was diagnosed with reddenitis pigmentose at four years old, and my family was told she's going to go blind and there's nothing we can do to stop it. they were put in contact with a charity who was kind of considered our only hope and they told my family at the time that they believed I would be cured in 10 years that was 1998 in 2008 I went blind so 10 years after they said in 10 years she'll be cured is the very year that I went blind but I spent my whole childhood as the face of this charity when I was five they asked my parents hey we need a cute little kid to come to our big

fundraiser and like do a little do a little moment on stage and it was meant to be a one-off thing but I loved the stage I grew up wanting to be an actress and a performer so for me I was a little kid who loved the limelight I loved having a microphone in my hand and getting to perform and that's what I viewed it as but eventually it became this thing where every single campaign I'm facing every single I'm on I was literally the poster child I was on all the posters all the pamphlets the photo shoots I did all the PR press I was in on TV at like 11 years old and doing all of these fundraising events standing up in front of donors telling them why it was so important that I be cured and then I went blind and they didn't cure me and my whole childhood being told if you do this

you will help cure yourself. And then you go blind and you realize there's actually no cure in sight, no pun intended. But all I've been told my whole life is you need to be cured. And now I'm realizing I'm not going to be cured. And I do actually have to live as a disabled woman. But all I've been told my whole life is being disabled isn't good enough. You need to be able to see.

We need to cure you, to heal you, to change you, to fix you. to fit society. And I had to realize at 14, that's not going to happen for me. So how, when I've been told my whole life, the only way I'll be good enough is if I can see, am I supposed to feel good enough as a blind person? So that was a really hard journey. And it led me down a lot of really dark paths.

I became suicidal. I was really badly bullied, dealt with severe depression, anxiety, complex post-traumatic stress disorder. it really impacted my mental health, which ultimately impacted my physical health. I really struggled with digestive issues from anxiety and depression. I could hardly eat. I lost a crazy amount of weight, lost my period, like really, really, really got physically and mentally impacted. And so I talk a lot about that and all of the paths that it led me down. All of the harmful ways I was set up to that mindset of feeling not good enough led me to accept less than good enough

treatment for a lot of my life. What was the organization doing that was leading you to believe that you needed to be cured? Was that a message they were putting on to you? Or did you feel that perhaps because you were younger, you were excited, you were impressionable? What led to that communication? Yeah. In the book, one of the lines I talk about is how I believed their optimism, because I was a child, and you believe adults always tell the truth. So I understand now that they were being optimistic. You don't understand that at five years old. You don't understand that at eight years old.

You think that they're telling you, and I'm sitting in these rooms surrounded by doctors and scientists and researchers who are telling me, all of what you're doing is going to help find the cure. So in my mind, like, there's going to be a cure. I mean, they literally told my parents in 10 years we believe she'll be cured. That was verbatim what they said to them. And so that was not only what I thought, but what my parents thought, because again, my parents don't know anything about disability. I was their first contact with disability, was their own child.

And so they're being told by the people that they're meant to look to, the specialists, the experts, for advice. And when they're being told there's going to be a cure, they believed it too. So you felt like it was a layer of false hope that they were putting up? on to you? Yeah. And I under, like I said, I understand now it was optimism. But I think, and I, and I also, I think, I always say I, I don't have a problem with, with medical research. I have a problem with the PR team. I have a problem with the marketing. Because a lot of times the way we market medical treatment and research is by pitying the disabled or sick person. We talk about how awful it is. that they are suffering from.

And when my whole life, the language around my blindness and my eventual vision loss was this poor girl isn't going to be able to see in the mirror, isn't going to be able to see her child's smile one day. It's all this like sad language around what became my eventual reality. I internalized all of that because that's how these organizations speak to pull at heartstrings to get the money they want. is it's a lot of like sadness, pity. Oh my God, this is awful.

We have to stop it. We have to do anything we can so that this isn't going to happen. But it happened. So was there a conflict internally within you where you felt totally fine and happy with your life? But all these people are telling you you should feel terrible because they're trying to get donations. That it ultimately impacted you to a level being an impressionable young child to feel terrible. when, had they not done that, you might have felt totally accepting and okay with your current situation. The reality is, I think, we'll never know how life would have been different if from the moment I was diagnosed, I was empowered.

And I was told that I'm wonderful as I am and I'm good enough. And that look at all of this accessibility and look at this amazing community of blind people that you're joining. And we'll never know how that would have changed my trajectory. But what I can say is when society is telling you from the moment that you have any kind of concept of yourself that you need to be changed. It's hard to feel good enough as you are. Do you think that in general society does too much fetishization of disability, of pity, My friend Pam calls it inspiration porn. I was just going to say inspiration porn, yeah.

Where they do this too often, where it may be coming from a quote-unquote good place, but it ultimately creates negativity in those who are actually disabled in their minds without intending for it to land that way. Do you feel like that happens? So I think the majority of the world is ablest, and I don't think they're doing it intentionally. I think society has always been ablest. And so we just continue the cycle. And you have to unlearn.

And a lot of able, I always say the way in which we are lucky as disabled people is that where things like racism and homophobia are rooted in hatred, abelism is rooted in ignorance. And ignorance is much easier to combat than hatred. We just have to combat it with education. But because, I mean, we live in a world where the ugly laws were in effect. not that long ago, where disabled people who looked different were literally not allowed to leave their homes. We live in a world where it is still legal in this country to pay disabled people less than minimum wage for the same work. We live in a country where people were institutionalized

and segregated for decades, removed from their families. And so the world hasn't had an opportunity to learn about disability. And when you have no access to learning about disability and the only place you're learning about it is through media, which to this day we have 3.1% representation of disability and media. And the majority of that is written, directed,

and played by non-disabled people. So they continue to perpetuate stereotypes, tropes, and misconceptions. They continue the misinformation. Give me some examples of that in media. I mean, every single day I get comments that I don't look blind. What does that mean? I get that I can't be blind because I can blink, because I can move my eyes, I have control over where I'm looking, that my eyes are a blue-green color, and I would have foggy, glossy eyes, all of these different things, that I can't be blind because I do my makeup and I like fashion, so many different stereotypes and misconceptions that I'm just that I'm looking at the camera, as if the camera is not right in front of me, that I'm not.

looking directly forward and does that ever get tiring of feeling like you need to be the one educating or do you find it as an opportunity where you can intervene in a section of society that you find problematic well when I went blind and I threw myself a daily pity party and I was resentful and I was angry and bitter and asked why me it wasn't a very good place to be and as I said I was super I really hit rock bottom. I had a plan in mind. And I looked at my life and I said, okay, so I have my option. The other option in the other hand is giving myself one more chance. But if I'm going to give myself one more chance, I have to change things because I can't expect

my circumstances to change if I don't change. And for me, it really was this realization of I can be a victim to my circumstance, or I can try to change my circumstance. And to change it, I need to get out there and proactively be a part of the solution, which is educating. And so, while I had spent my whole childhood public speaking for this charity, and I had completely stopped by 14 because of my anger towards them, I eventually decided in my teens to start public speaking again on my own terms. So I started going to schools in my neighborhood. And I would tell them about my vision loss journey and my bullying. And I would tell them about how I live life now and how I do different things, like how I do my makeup. Same kind of stuff that I now post on YouTube and TikTok,

but on live stages to my own age group. Like I was speaking peer to peer. I actually went on a reduced school schedule. So I only went to high school two and a half days a week. And the other two and a half days, I would be touring speaking. And it was empowering feeling like I am a part of the solution. I am not a part of the problem. I'm not a victim to the problem. I'm being a part of changing it. And that was really empowering for me. What moment do you remember from that time where you lost your vision? Was it an overnight change? Did it happen gradually? What was your mindset at that point? So with RP, the two symptoms that are most that are common across all forms is night blindness and tunnel vision. So I've been fully nightblind from birth. And then the

tunnel vision, you slowly lose your peripheral. So it's like goes from having full degree of vision to looking through a toilet paper roll, then a straw, then a pinhole. And it just closes up. And then every other symptom diversifies across the spectrum. So the way that my geneticist explained my disease to me was that saying the word retinitis pigmentosa is like saying the word cancer. It's just a general disease name. But what kind of cancer will determine a lot? And so what kind of gene mutation you have determines a lot? I believe. at this point, there's over a hundred known genes that cause RP. So depending on what gene type you have, will predict your vision loss. I got my gene diagnosis two years after I went

blind. So originally, it was suggested that I would lose the majority of my vision in my 30s or 40s. Do we want him to go out? No, why? We can send him out if he's being too much of a ham. He's so good. Okay, kush, my love. He might need water, actually. That might be it. Do you mind grabbing him in the water? He's a happy camper. Yeah. Sam will grab him some water. Thank you.

So you were telling me? So it causes, so yeah, those are the two symptoms. Two years after you got the genetic? So at 16, we finally got the genetic diagnosis. My blood was sent all over the world. It was finally diagnosed by Columbia. And it's Tulip 1, which is one of the rarest forms of RP. and it is known to cause significant vision loss at a much younger age.

So you lose the vision faster and younger, which made sense. We then understood why I had lost my vision so young and so fast. And in my case, it took place over about six to eight months. Now, throughout my childhood from the time of diagnosis, I was going in for regular checkups to an ophthalmologist at Sick Kids Hospital who would run tests every six to 12 months to determine like the trajectory of my vision loss. And it would plateau and then we'd have a dip. It would plateau and then we'd have a dip. But it was over the course of about six to eight months of my grade eight year. So I was

14 where it was a very steady fast decline. And in that time, in my central vision, I lost color. So all dark colors just looked black. All light colors just looked white. So I could only see extreme high contrast. I went from needing like larger and larger and larger print to eventually not being able to see print at all. And then I also have something called Charles Bonae syndrome, which

is the only disease that we currently know of that causes visual hallucinations that is not related to mental illness. So people with Charles Bonaise syndrome experience visual hallucinations that can range from seeing hyper realistic things like

walking into your living room and seeing an old timey horse and carriage sitting there, to seeing kaleidoscope of colors and light. In my case, it's blue, green, and purple fireworks that fill the entirety of my visual field. I see them 24-7. They never go away. Eyes open, eyes closed, going to sleep. It is constantly neon bright lights. And essentially what happens is it's common for people who have vision loss that happens rapidly and traditionally due to retinal diseases like mine. And you're, brain panics and it wants to see. And so it tries to rewire itself to see and it creates new visual pathways. And so it's very, very few people know about it. And it's really important to raise

awareness about it because not only do a lot of people living with retinal diseases, start experiencing it and not say anything out of fear of the stigma that comes with seeing things that aren't there, but also a lot of elderly people are misdiagnosed with things like dementia because they're actually just experiencing Charles Bonaise syndrome related to something like macular degeneration. Wow. And you mentioned bullying that was going on. Was that from your classmates at school or people in your life the close to you?

What was going on there? Yeah, my classmates at school all turned on me. And then also what was most shocking was the adults in my life. I had teachers say that I was faking it. We actually had the school guidance counselor tell my parents that it was my fault. I was being bullied because I was being dramatic about my vision loss. And it was this, it was a whole thing. She got on the phone of my psychologist and my ophthalmologist.

And they had to tell her that there is scientifically no way I'm faking this. And that also dealing with depression is not dramatic. So it was a whole thing. But yeah, she told all of my teachers not to believe me and to act like I was faking it. God, that's so toxic. How did you handle that being a kid who wants to see who's wanting to be like their classmates being promised that there is a cure and or that you should hope for a cure? And people don't believe that you have this condition. It's a really awful feeling when the most traumatic thing in your life is invalidated. especially when you're actively going through it.

I mean, being online, again, I get the comments of she's faking it every single day. I don't care at this point. I think it's funny. But when it's happening in real time as you're going through it, it is such a horrific feeling. And by people you trust. And people who are supposed to protect you

and have your best interest at heart. And this is another layer to the story that's in the book. At the time of my vision loss, I went to an extremely prestigious private school. And so it really thought, thickened the dynamics that were at play here. Private schools don't have to play by any certain rulebook in terms of providing accommodations the way that public schools do.

And so they did not want me having a vision itinerant in the class supporting me. They didn't want to give me access to accommodations and accessible tools that I needed. It was really difficult to navigate. Some of my bullies, their families, made large donations to the school, so they didn't get in trouble.

It's a lot of weird dynamics at play that made the situation worse. How did your family support you through this or go to bat for you or perhaps I'm missing part of the story there? No, my family is my absolute rock. I would not be here. Like my parents to this day are my best friends. They both work full time with me and my business supporting my goals and dreams. I am so blessed.

And that is a huge privilege. I'm really fortunate that my family, they got the diagnosis, and they were like, we're just going to run with this. And every step of the way, they let me lead. They let me tell them what I needed. They went to bat for me. They advocated when I couldn't. They taught me to advocate for myself as I grew older. But the best thing they did for me was they treated me the same as they treated my sighted older brother.

they let me go run around the park knowing that I had a greater likelihood of slipping and falling and breaking my arm and they set aside a kid can slip and break her arm but she needs to be a child and she needs to have life experiences and as I grew up I continued they just let me they let me be myself they believed that their job as my parents was not to make me who they wanted me to be but was to help me become who I meant to be and I'm forever grateful for them I'm really curious about your relationship with the word cure because in the disability community, I feel like there are different opinions and feelings on it based on people's experiences, based on how they feel about their disability, based on how they identify themselves with

their condition. I remember even watching a movie, and I'm curious on your take on that movie called The Sound of Metal, the drummer, who lost his hearing. and they were discussing cochlear implants, and there was judgment from the community, the deaf community saying that we don't need to be cured, we're part of this community. As an able person, able-body person, to me, that's confusing.

Can you help me better understand that? Yeah, and that's why I was interested to have this conversation with you because, of course, you come from a medical background where you're taught to cure. everything, yeah, and try to fix. Yeah. And so there's, there's many schools of thought when it comes to disability. The two most prominent are social model versus medical model. So the medical model is what society has run on historically, which is the treatment. It's we cure, we fix, we treat, we heal. The social model began as a part of the disability rights movement. And the

social model is the idea that disability is a systemic societal issue, not an individual issue. And therefore, the cure or treatment is changing society, not changing individuals. So that looks like becoming less ablest. That looks like giving us more equitable opportunity. That looks like building infrastructure that's accessible and accommodating to all needs. because the reality is there is so many reasons to go blind just as one disability within the spectrum of disability

there is so many ways you can go blind what would treat RP is not what would treat somebody with retinopathy of prematurity what would treat ROP is not what would treat somebody who has a severed optic nerve due to a traumatic accident

so curing or treating blindness is really complicated and ridiculously expensive and thus far we've not had any major breakthroughs and that's just one disability. Then we think of people in wheelchairs, spinal muscular atrophy, muscular dystrophy, paralysis, tethered cord syndrome. Like there's so many reasons to need a wheelchair. And then beyond that, there's people who need it because of pots. There's people who need it because of MS. There's people who need it intermittently. Like, it's such a spectrum. So when we try to cure all of those people with medical intervention, we know it's pretty unlikely.

But if we build a world where every building has ramps, has automatic buttons, has braille labels, has large print that's high color contrast, all of a sudden, I'm not disabled because I can access that space independently. I don't need help. My disability is not that I can't see. My disability is that I can't be as independent as I am capable of because society does not allow me to because it's built for people who can see. And so I am not against continued medical intervention. I'm against that that is the best solution. I'm against that that is what we should be putting all of our time effort and money into and neglecting making the world a more accommodating space for everyone who lives in it. I frequently get into a conversation with the behavioral psychologist in my medical practice, where we talk about bullying, and he says, similar to your message of how children that are bullied don't need help with resilience.

They don't need to take a taekwondo class. They don't need that. We need to approach the situation. systemically. We need to make sure that there's a reporting system in place, something that the teachers can do to act upon bullying, to change how we discuss bullying in society in general. To me, I think those are very valuable. I think we need to make systemic change. And in fact, I think I try my best to approach most psychological, physical health conditions in that same way. But I think that there is a potential benefit to also instilling resilience to doing taekwondo training because, A, there's probably no harm in that.

And there will be other benefits outside of the bullying perspective in helping someone get fit, get stronger, learn about their body. So how do we find this balance where we seek to create medical solutions for problems that can arise and at the same time improve society? to essentially evolve, because that's what we need to do with all these scenarios. I agree with you. I don't think it's this or that. But historically, it's just been this, medical model. It hasn't been this or that and that, you know? And so it's about bringing the two together. I think there's a lot of things. I think number one, we need to realize that time and time again it has been shown that when we design for disabled people, it drives innovation for everyone. So the curb cut phenomenon, right?

The curb cut in the sidewalk, that slant when you cross the street was designed for wheelchair users. Now everybody riding a bike, pushing a stroller on a skateboard with a trolley benefits. We have so many more examples of that. Captions. Designed for the deaf community. Now everybody on their commute is watching scrolling Instagram with the captions. I mean, it's how I learn English. Literally, when I came to America, I watched friends. friends with captions. And that helped me learn the language.

Good choice. Best show. But no, my sister-in-law is French. And she lives in France. My brother and her live in France together. And whenever they come to visit and we watch family movies, we have the captions on for her because it makes it easier for her to follow along as a not native English speaker. So there's so many uses for those captions. Alexa, you're welcome. That was designed for blind people. Now everybody, Alexa, set the alarm. Alexa, play Taylor Swift. Alexa do this. Sorry for everybody whose Alexis are going on. right now at home. But, you know, there's so many examples of how something that was designed to be inclusive for disabled people actually benefited society at large. So I think it's really

important to understand that we're not thinking of making the world more accessible. We're thinking about making the world more universal, better for everyone. And that deserves to have budget allocated. That deserves people's time, money, attention, and energy. Now, are you talking about this scenario in terms of improving systemic resources, making things more universal from the time you were diagnosed or even still to this day that you don't feel like there's enough emphasis or budget placed in this space? I mean, there definitely isn't.

Right now, it's currently looking to be rolled back the mandate for accessibility in buildings. So, as I said, right now we still live in a country where it is legal to pay disabled people less than minimum wage. And we know minimum wage is not even a livable wage So to pay them less than that. We live in a world where government assistance for those with disabilities is not only being jeopardized, but is still not livable. Disabled people are in systemic poverty, are not able to get opportunities.

We look at the unemployment rates. 80% of disabled people in this country are employed. One in four Americans are disabled. So it is a huge problem. And a lot of it comes down to fear. I think, A, it's important for everybody to remember that disability is the only minority community that anybody can join at any time.

The majority of disabilities are acquired through age, accident, or illness. You are temporarily non-disabled. You can join us at any time. So we're not talking about a community that doesn't affect you. And I don't think you should be waiting until you or one of your loved ones is impacted to care.

But B, I think that a lot of it comes down to the fact that many of us were raised to don't look, don't stare, don't point, don't ask questions, right? As little kids, when we saw somebody with a prosthetic leg, wearing hearing aids, with a facial deformity, an upper limb difference. And we said, Mommy, what's that? so what we taught kids from a young age is ignore that that's a topic we don't talk about so you grow up ignoring you grow up scared because you don't know what to do or say now because you were never taught and so we really need to change that what would you do in that scenario as a parent how would you handle that or how would you recommend parents handle it So what I do, any time a kid asks, why is there a dog in the grocery store? And I hear, sh, I bend down and I say, hi, this is my guide dog. He's a really special dog.

And I just tell them. I just, glasses don't work for me, so my eyes don't work. And so he sees for me, and I can ask him to find things like doors and stairs and chairs. And he does that to make sure that I'm safe because it's like walking around with your eyes closed. I explain it to them in a way that it makes sense for them. Right. And you know what? They're always like, oh, my God, cool.

never are they like that's weird but they're going to think it's weird when you never tell them because I grew up being the different kid that's why I was bullied I wasn't bullied because I'm blind I was bullied because they knew I was different but they didn't know how or why and difference equals vulnerability I stuck out and so it was easy to make me a target but I I think that if kids had just been more educated and aware and disability had been normalized, had been humanized from a young age, I think society would treat disability a hell of a lot different. Given that you were going through so much at that time from gaslighting by your peers, by people you trusted, feeling let down by the organization that was making promises to you,

you still made the decision to say, I'm going to go on to YouTube in 2014, I believe, and you said, I want the world to hear this message. How does one find the motivation to do such a thing when they're at one of their darkest moments? And I say that, and from my own experience when I've been in dark moments, finding it difficult to find motivation. But also in speaking with my patients who are in their darkest moments, seeing and feeling that they have, very little motivation to brush their hair, to brush their teeth, to take a shower. And you said, forget all that. I'm going mainstream and reaching everyone at home.

How did you find that? It's very multi-layered. You know better than everyone that there's no fix at all solution, right? There's no magic pill. Right. So I'm not going to sit here and be like, oh, it just happened overnight. It was a multi-year-long journey of healing, which is never linear. So lots of up and downs. Lots of different interventions. I really leaned into both Eastern and Western medicine. So it really looked like changing my life entirely. It meant a lot of therapy, both talk therapy and cognitive behavior therapy. It looked like finding a physical outlet. So getting exercise, right, which is good for mental and physical health. For me, that became yoga.

It looked like finding some form of spirituality because I did not have any belief in God at that point because I didn't believe if there's a higher power, he would put somebody through this. So it looked like going on my own journey of spirituality and trying to find what spiritual beliefs resonate with me to allow me to feel less alone. It looked like reading self-help books, like you can heal your life by Louise Hay and leaning into positive self-talk, affirmations, every single. day telling myself, you're strong, you're beautiful, you're talented, you deserve to be happy,

you deserve to be healthy, even if I didn't believe it. Um, making vision boards as hokey as they sound, like just, just putting down on paper all of my dreams and believing that maybe it could happen for me, it looked like, um, healing my gut health. I had significant IBS. Um, so it looked like finding, finding healthy foods that, like, suited my body and gave me energy, made me feel good inside out. So it looked like a lot of different things. But there was a lot of ups and downs. And it wasn't easy. But it was knowing that I didn't want to feel miserable anymore. And I deserved better than that. But that it wasn't going to just happen. And I I also couldn't be passive. I couldn't be a passenger in my recovery because I can seek

every intervention I want. But if I'm clocking in and out and not actively engaging, it's not going to work. And so it was really being a part of my healing proactively. And I didn't start my YouTube channel until I was 20. I went through all of this at 14. So there was many years. in between when I began struggling to when I started helping other people, because I knew I couldn't help people until I had healed and helped myself enough to be in a place where I could actually share. But as I said, I grew up wanting to be an actress. At five years old, I told my parents, I'm going to move to L.A. and be an actress. I begged them for acting classes. I did improv and stage performance. I was a competitive dancer. I took vocal lessons.

I idolized Hillary Duff. Like, I wanted to be that triple threat. So working in entertainment and performing was always a vehicle I loved. I was also the kid who went home and didn't watch SpongeBob but watched Oprah. And then I wonder why I was bullied. I loved Oprah. And I think instinctively, even though I didn't necessarily know it at the time, I loved her because I saw a minority woman who was using entertainment as a vehicle to talk about topics that were important but weren't.

being given the time of day yet. And I really loved that. And ever since I was a young child, I had such an interest in learning about other people who live in a way that I don't understand because I knew what it was like to live differently to most of society and have people not care to understand me. And so growing up, wanting to work in an industry that is historically extremely exclusionary and not seeing myself represented in it, I knew that following the traditional path of entertainment would be very difficult. But social media, there's no gatekeepers like there is in Hollywood. The gatekeeper is the public, right? You either resonate with the viewers or you don't. And when I started in 2014, there wasn't like a huge disability community

online the way there is now. But I was like, why not? Why isn't there? And at the time I had been touring is a full-time motivational speaker. From 18 to 20, I toured to stadiums of 20,000 people, sharing my story alongside A-List celebrities and famous world change makers like Malala and Richard Branson. And that was on the outside, a very glamorous experience, on the inside, a very toxic one, which is another big thing that I get into in the book. And I believe I was set up to accept that toxic behavior because of my childhood. And, the toxic behavior I had accepted for so long. So I'd already been sharing my story publicly, but after two years, I had a workplace accident. I walked off a five-foot stage, full speed

ahead, blind girl moment, severely injured my neck, had a re-emergence of C PTSD, really struggled, quit my job, and moved back into the dreaded suburbs from the big city with my parents. And I was like I'm 20 years old. I've peaked. Everything's downhill from here. And I just looked and I was like, what am I going to do with my life? And I knew I was still passionate about sharing my story and raising awareness. I knew I was still passionate about entertainment. I loved social media as a viewer ever since I discovered it at 14 when I no longer had friends in real life. The girls I watched online felt like my friends. So I already had all of these kind of intersectionalities going on. And I was like maybe it's my time to just start posting. And posting really allowed me to share more

of myself than being on stage did. People are never going to book me to do a makeup tutorial on stage. But I still think it's important to show people how I do my makeup because I get asked every day. So I just started and 11 years later, here we are. Yeah. With Amex Platinum, access to exclusive Amex pre-sale tickets can score you a spot trackside. So being a fan for life turns into the trip of a lifetime. That's the powerful backing of Amex. Pre-sale tickets for future events subject to availability and varied by race. Terms and conditions apply.

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Lift with confidence. While Peloton IQ counts reps, corrects, form. and tracks your progress. Let yourself run, lift, flow, and go. Explore the new Peloton Cross-Draining Treadplus at OnePeloton.C.A. Was there ever a moment during that time or perhaps earlier where,

unexpectedly, perhaps, you felt most seen? When I was 16 years old, was the first time that I was told by somebody you don't need to be cured. And when it happened, my school had promised that they would do a fundraiser for the Vision Research charity. And then they changed their mind and decided to do the same fundraiser they had been doing for over a decade, which was for cancer. And I was really hurt. I was really upset.

And I was venting to my special education teacher about how much this hurt me. And she was like really probing. You know, like, why is it hurting? Like, why does that bug you so much? And I was going on and on about how, like, no, I'm not terminally ill, but, like, I had to grieve the death of myself. I had to lose myself at 14 and discover a whole whole. new person and a whole new way of living and build a new life again. And like I, I want to be like

everybody else. I want the easy path. I want to be able to see. And it had never, not a single person in 16 years of my life had ever told me that, A, I don't need to be cured. And B, I'm fine as I am. and she was like you know you don't you don't need that like you can put all of that energy you're putting into finding a cure into accepting yourself and to be honest

that made me really mad I thought she was crazy and so I understand when I say that I say that I don't want to be cured, that that's really hard for sighted people to understand. Because when somebody suggested, dare suggest it to me, I thought they were crazy. So I get it. And I can say it took me years to understand and to not just understand social versus medical

model and the disability rights movement, but to unpack my internalized ableism. and to learn to love and accept who I am and to get to a place where truly I am good as I am. And that doesn't mean life's easy. And that doesn't mean I don't still grieve. My life is harder because I am disabled. That is just facts.

But my life's not harder because I am a problem. My life's harder because society hasn't cared. And I'm doing everything I can to change that. Would it be hard to have that message land because someone else is saying it to you as opposed to you coming to the realization on your own? I feel like it's different if an individual says you don't need to be cured versus you deciding to say, I don't need to be cured. Someone else saying it is like, why are you making the decision for me?

and it takes that empowering feeling away from you. So if that person, your special education teacher, said, do you need to be cured, would that have been a better way to approach it? Or do you think that it needed to be as direct as it was? I think it needed to be as direct as it was because what I had been told my whole life is you need to be cured. And so I needed to hear the very opposite. But that didn't mean I understood it, right?

I was like, what are you saying? My whole life, society, whether they're saying it directly or indirectly, what I'm being told, the messaging I'm receiving from society is that I need to be able to see to live a fulfilling, successful, happy life. And so somebody suggesting that I could do everything I've ever wanted and be blind didn't make sense to me. But it opened the door, and I'm so glad it did. because wanting to be cured did not free me mentally.

It kept me trapped in hating myself and in pursuing something that may or may not ever happen. But opening that door to explore that perhaps the cure is self-acceptance and is learning to move forward. and not stay stuck. It was huge for me. Do you feel like to get to the mindset that you're at now, you have to close the door on ever wandering or being open to the possibility of being cured?

For me, I did. I had to. Because that was the only door I saw as a possibility for the first 16 years of my life. And the door I wanted to walk through for probably the first 20, 21 years. So for me, I did have to shut that door and lock it completely in order to move forward. That does not mean everybody does. What I will say is I am not against a treatment that will stabilize. I think the word cure is also misrepresentative a lot of the time.

And I think you could probably agree with that, that when we hear cure, we think Molly will see 2020. We know that. That's very unlikely, and that most cures are treatments that will slow progression, that will plateau progression, that will maybe improve slightly. It is very unlikely in most cases that treatments are actually curing completely. So when we say cure, it's really misleading, not only to disabled people, because I grew up thinking cure meant seeing. That was the messaging that I was receiving. I didn't understand that cure most likely meant more so a treatment of sorts. And I think when we say cure to the average person, they think a paralyzed person will walk and have no disability.

They're not thinking a person with paralysis will get minor sensation back, minor muscle strength that will allow them to stand for 10 seconds to transfer easier. But that's really most likely what we're looking at with a lot of treatments, at least at this stage. I want to reference something that was mentioned on one of our previous podcasts where we were talking about research that looked at individuals who have lost a limb and they compared how they judged their quote-unquote happiness level before the injury and how some people imagine if they were to lose a limb what their happiness level would happen to it and then also asking people who have lost a limb what their happiness level was and there was some

discordance there people assume that when they lose a limb their happiness level would drop significantly or their joy in life would drop significantly and it didn't match what was actually happening in society first of all I'd love your take on that And then second, when I presented that to one of my podcast guests, he said, sure, but you don't see people wanting to lose a limb. Yes, the average person doesn't want to lose their limb. And look, I don't recommend going blind. I'm not out here like we should all go blind. It's so fun.

It sucked. I don't wish this on my worst enemy. But I also want to be so clear that I can live just as full of life. just as happy, be just as successful when given access to opportunity, to accommodations, to community. And that's what we need to realize is that so much of not wanting to be disabled and so much of the struggle when you become disabled is ableism. and a lot of people who become newly disabled deal with internalized ableism just as I did

and it's again that journey of unlearning unpacking all of that and relearning and there's a lot of a lot of narratives that really play into this like inspiration porn ableism saying things like I'm not handicapped I'm handicapped I'm handicable I'm not disabled I'm differently I'm not differently abled. I am disabled. And that's not a dirty word. But when we tiptoe around it, when we don't even want to say the word disabled, and for the record, it's not special needs. I have needs. Like everybody has needs. And my needs are individualized just as yours are. You need glasses. That's one of your needs. But we don't call that a special need. because more people wear glasses than are blind. My needs aren't special. I'm a human with needs. And so being a part of the proud disability community,

I own the word disabled that comes with a beautiful community beside me. I own the word blind. These are not bad words. They are only bad words if we assign negativity to them. And I actually argue that by using terms, differently able, handicapped, special needs, we are neglecting to see the problems that exist. We need to say the word disabled. I am disabled and that's okay. But what disables me is society and we need to talk about that. We need to talk about the issues that exist in order to change

them. So is it fair to say that when we're afraid to use the word disabled, we're really giving credence to being ableist. Yes. Because we're finding it such a dirty word as if we're harming you by saying it. Correct. And I can tell you, I'm not unaware that I'm blind. Like when people don't want to say blind out loud, I'm like, you're not the first to let me know. Don't worry.

Like, it's okay. And I think that there is power in just saying it as it is and being unashamed. How do you feel about humor related to disability? I use disability humor all the time. And obviously, like, I want to be so clear. I'm one disabled person with one perspective. Of course. The community is not a monolith.

I'm speaking from my perspective. So my opinion is that comedy is comedy. I love disability humor. What I will say is there's things that I can say as a disabled person that I don't think you can say as a non-disabled person. Like what? Like me and a bunch of my disabled girlfriends were going out for sushi and he was like the waiter or the like the guy the matriety or something. Yeah.

Was like, is your whole party here yet? And she's like, no, the Crip crew ain't here yet. And he was like, can you say that? And she was like, I can. You can't. Got it. You know, like there's certain things that it's like we can kind of use the words. It's like how different communities have reclaimed certain words, right?

where it's like they can use it as the community. Like a lot of the gay community will use the F slur, but they're doing it. Right. So it's empowering. We're not doing it. And so it's kind of like that. But there's also,

my kind of line is like if I'm included and involved in the joke, it's okay. If everybody else is laughing and I'm not, because I don't know the joke is happening, it's not okay. Got it. So like me reaching for a cup on the table and you slowly pulling it away from me, where everybody else can see that you're doing that and is laughing because now I'm struggling to find it. But I'm not in on that joke.

That's not funny. That's just me. I remember when we were filming Operation, I went to give you a high five and everyone just roasted me in the comments. Like, I can't believe Mike did that. I think my editor even added some extra roasting in there where, um, they're like what are you doing mike and you're not the only one ryan c crest had the same experience with the blind guy once where you went to shake his hand these are ingrained behaviors from a human

perspective but we made it a joke on the channel obviously as part of the video do you find that as part of just being you and it's like a silly moment as if i was really tall eight feet high high and people were trying to high five me and jumping to high five me? Or do you find that as demeaning of sorts? Absolutely not. I love that you did that because you know what? It shows me that you think of me as anybody else. I don't want you to change your behaviors. I don't want you to change your language. When I say things like look and see, oh, I saw this movie over the weekend. Oh my God, look at that over there. People actually, I'm not allowed to say that because I'm not physically seeing it. So you want me to say, I heard this movie the other thing?

night what so I can separate myself further from you so I can make my differences more obvious than they already are and I think it's so ridiculous like language has multiple meanings right we will often say oh I heard about when we read an article right you didn't cure it you read it but we still say I heard it's the same thing are people policing your language online like that these days all the time forever and not just not just online my whole life like in person people will even say like am I allowed to say the word C around you? I'm like, yes. You can say C. You could use the language. Like my blind friends and I went to the school for the blind for grade 9 and 10. All my classmates were blind. We would say to each other, okay, see you later and not even think twice. We would do

blind high fives and we just wave our hands in the air until we made contact. Like, I want you to treat me the way you would treat anybody else. That's the point. I am a normal person. I just do things a little bit differently. I perceive the world in a different way. I see the world through my hands. I see the world through my ears. But that doesn't make the way I see the world any less valuable. When do you like we have this subset of humanity that bullies, that is mean, that is rude. We see that in the comments on YouTube all day long. There's also a part of society that is worried about being offensive, worried about saying see you later perhaps to you. are they having one of these instances of good intentions with bad outcomes because perhaps

they're leaning into something that is ablest in their hesitation of wanting to use that language? Yeah, I think it goes back to a lot of ableism is unintentional. A lot of ableism actually comes from a good place. They think they're doing the right thing, but they're accidentally being offensive. And so I think that's why seeking edutainment around disability is important. There's so many disabled creators making incredibly entertaining content, sharing their lives and how they do things and what accommodations look like for them and what their challenges are. It's free.

It's entertainment just as much as any other content is. And I think that that will help dispel a lot of the fear and the ignorance around disability. And I really think that that is the key to creating the change we need to see. What are some interesting moments that have impacted you throughout your career as a YouTuber? Like from a day-to-day perspective, what is it like making a YouTube video for you? Because I'm sure it's different than what it's like for me. So how is that process different? I do have a wonderful team around me. I do have somebody that sets up my camera and makes sure all the lighting looks good and the technical stuff.

But most creators at our levels have that, right? Like that's not necessarily like a special thing for me. There's plenty of blind creators who film and edit all their own content. Using assistive technology, using screen readers, using Zoom. This is a huge misconception that blindness is nothing, right? I think we think of disability as black and white. You can either walk or you have no sensation. Right.

There's ambulatory wheelchair users who sometimes need their wheelchair and can sometimes walk. They're not faking it. They're just, have a different level of disability on the spectrum. And it's the same with blindness. It's not black and white. It's not like you have 20-20 or you've seen nothing. 90% of blind people have remaining vision.

That does not mean they are sighted. If you were missing 90% of your vision, I'm sure you wouldn't call yourself cited. And so for them, they can still use Zoom. They could still zoom in the screen, make the font. bigger, higher color contrast, use different forms of assistive technology to film and edit. If you film on your phone, our screen reader actually tells us when we're in frame. You can also use different technology like the Belkin, where you attach your phone and

it uses AI to center for you so I can move around and it'll actually track me in real time. So there's a lot of ways, there's a lot of workarounds. And that's why accessibility and universal design matters because it allows us to live just as independently and have just as much capability back as you have without a disability without being cured. What about dating? What's that like? You know, I have all the normal dating and relationship struggles and then obviously like a different layer of unique issues. I'm in a long term relationship. I've been living with my partner for almost a year and a half. We've been together for two and a half years. He is not disabled. I've had disabled partners. I've had

non-disabled partners. I'm 31. I first started dating at 14. So I've had a lot of experiences. And I would say they span the same spectrum as a lot of people. I've had really toxic relationships and I've had really incredible ones. And I would say the best relationships are the ones where I feel like my partner doesn't treat my disability as something that is a challenge in our relationship or a struggle, but they actually see it as something that makes me more interesting that enhances our lives, that that brings a unique element to our relationship. And that's how my partner makes me feel, and I'm very lucky. Perhaps this is a question from my lack of knowledge.

Is it, can a person who is dating as a blind person be superficial? Absolutely. How so? You can be just as shallow as anybody else can be. And I think it's important to talk about these things because back to inspiration porn, we often have this narrative around disability of praise or pity.

We're placed on a pedestal and admired for simply existing. Oh my God, it's so inspiring to see you get out and get your coffee this morning. You ran a 5K. It's a 5K, calm down. You know, like we see disabled people being like praised for simply like living.

or we see them pitied. Oh, well, I thought I had it hard. Thank God I'm not you. If I went blind, I'd kill myself. And so those are really the only two narratives we see. We rarely see disability humanized. I'm just a person with just as many flaws, just as many beautiful parts to me as anybody else, right?

And so I always say it's important to realize disabled people can be shitty too. Disabled people can be just the same spectrum of, of, humanity as anybody else. And so yes, disabled people, blind people can be shallow. I have a certain height that I like. I know when a room full of tall men, my apologies, all the women like the tall men. I like shorter guys because I'm 4 foot 11. And when I'm around a tall person, I feel very intimidated because I can't see them. So it just feels like a really big looming presence over me. So I prefer somebody who is shorter. It makes me feel less intimidated. That's just a preference I have. And I'm allowed to have that preference as much as a sighted

person as allowed to have a preference. I always say I can't see you, but I can still feel you. So like I'm an arms girl over abs. Like I love a good arm. My got a bicep. That gets me. Like I love a man when his sleeve is like rolled up just below the elbow and he's got a good arm. He's giving me sighted guide. I can feel what's going on there. Like that's my first moment when he's giving me sighted guide to the bathroom on a date. Like I know what you got going on under that. So, yeah, I'm allowed to have preferences just as much as anybody else does.

My preferences just don't tend to be the color of your skin or your eye color or your hair color. Those visual things don't matter as much to me. It's more sensory things that I can experience. The sound of your voice. How you smell. Those things matter to me. At Desjardin, we speak business. We speak startup funding and comprehensive game plans.

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Free access ends August 24th. Visit Ancestry.ca for more details. Terms apply. That's really cool. Are there people in the YouTube comments that ask you questions that actually you get excited to answer? And what are those questions? Interesting. I've been doing it for 11 years. So I feel like I've gotten every question I can. So I think I'd be excited if somebody finally gave me like a new question. But that's also why I love getting to go deeper on kind of larger topics like cure culture

and medical versus social model. Like these are. deeper conversations. They're heavier topics. And I really like getting to sit down with somebody and really going head to head on that. And I also, I don't mind being questioned and prodded on that. Like, you don't need to accept what I'm saying. I appreciate that you're like, this doesn't fit what I've been told as a doctor. Like, I want to understand. And you might walk away from this and still not understand and that's okay. Because like I said, it took me a long time to understand. So yeah, I would say when somebody gives me a new question, I'm excited because I've heard that, how do you know when to stop wiping? Question a few too many times. How do you know when you have your period?

All of these questions is sex the same if you can't see? I don't know. Have you ever done it with the lights out? In terms of the medical model and my education, for me, I think about it so holistically because I'm a family medicine doctor and I don't just treat one organ like let's say cardiologist does. They get very zoned into thinking about the health of that organ and making sure it's performing perfectly. But being a family medicine doctor, I have to really zoom out and think about how every organ interacts with every other organ, how it interacts with mental health, how it interacts with social situation, cultural situation, friendships, work, all of these dynamics. So for me, when people discuss medical versus social in terms of disabilities, to me, it's not one

or the other, just like you said. It's going to be different for each individual based on, A, how that disability impacts their life, be their past experiences that have shaped their perception of their disability, and see also what they want. Yes. Because some people know the risks of a certain activity. For example, I'm a doctor that box is professionally. It's terrible for your health to get punched in the head. I don't recommend that to anyone.

And yet I'm doing it. So while it can come off hypocritical, we need to understand that you can have two simultaneous beliefs that seem like they're in contradiction to each other, but we're not good at that as a society. And you mentioned something about that earlier where you said, I'm under no illusion that I have a disability and that it sucks, but I'm also happy that I have it, or some, I'm paraphrasing obviously exactly what you said, but you're almost like happy with the disability, but also you would not want someone to have this disability. Those two things seem like they can't possibly coexist together in one's mind, but you're obviously an example in

saying how it happily coexist in your mind. I think it's good for the audience to continually see examples of that. Because whether we're talking about politics or health, those situations arise quite frequently. Yes. And as you said, issues of lack of understanding, issues that we were raised with abelism and pity for those who have disability. I remember even when I got invited to this MIT conference, where the purpose of the conference was leadership in the digital age. And when I got the invitation, I was excited to go because I want to be a leader in the digital age.

But what I didn't know was it was a disability conference. So I was the only one without a disability. And everyone in the group assumed I had an invisible disability. And it was a very awkward conversation on day two where I had to say, hey, look, I'm a doctor and I'm hoping to bring my knowledge of what I pick up during this week to my medical community, to my following. But that was awkward. I felt like I didn't belong. So I could only imagine how those who are disabled feel in a situation. Exactly.

And, you know, we made small changes as a team after that. before we said why would we pay for captions, we have the Google automatic captions. And while there were actually some people who are working on the Google captions as part of that disability conference, so not throwing any shade their way to the quality of those captions. Yeah, they reference those quite often. We invested in professional transcription services and finding ways that we can improve our content to make it more universal and make it more watchable. Do you use Camel case hashtags?

Camel, I don't even know what that is. So when you hashtag, make sure you're capitalizing the first letter in every single multi, in a multi word hashtag. So the first letter of every word. Oh, interesting. And that allows screen readers to read it. Okay. Instead of gibberish where all the letters just garbled together, it can actually

distinguish each word. And it also allows for people with things like dyslexia or low vision to more visually easily distinguish each word. Interesting. I remember having that issue when I was trying to do hashtags and, After I would write the hashtag and then hit space, it like auto-formatted it to whatever the hashtag that existed in that space. Where I wanted it to actually have the capitalization. So I wonder if that's still happening.

As long as you don't like click it, like as long as you type it out yourself, but don't select it. Got it. Okay. Also like hashtags are becoming a little bit less valuable in the best data world. Yeah. Are there any features that you want that are missing? in the text space? Widespread audio description is huge.

Audio description is to the blind community, what captions are to the deaf community. It has a secondary audio track that overlays, and in the gaps of dialogue, it describes visually what's happening on screen. It's almost like a script for movies where it says, like, John visibly started crying. Yes, exactly, exactly.

So if there's a joke that's like, Oh, nice dress. I don't know what the dress looks like. I don't know why people are laughing. But if it's like, Phoebe walks in wearing a dress with a bow on it, like with a big Christmas bow tape to the front. You know the episode where they're going out and she gets hummus or something on her dress? And then she like just froze.

I wouldn't have understood without the audio description telling me what just happened. Do services like that exist? They do. It's not on everything. And it's not on social media. Who does that? Like Netflix, Disney, HBO, they all have it on a lot of, they all have it on their originals and then on some of their licensed and then on some of their back catalog of older stuff,

but not all. And then social media, of course, doesn't have it. So I really hate as a beauty and fashion girly when like beauty and fashion content creators are like, look at this. Isn't this so cool? I love how this look. What? Just describe it. Just describe it. Um, or when you're like, What do you do in those situations? How do you handle that? Do you have someone that watches along with you or what's the usual process? I swipe away. It's just not for me, you know, which is why accessibility matters because you're missing out on viewership if you're not captioning well. If you're not using camel case hashtags, if you're not being using descriptive language, if you're doing visuals that are low color contrast or difficult fonts to read, you're missing out on opportunity.

So it's important. You said you like new questions. I'm trying to think of a good new question to ask you that I can ask as a doctor. What if we do a hypothetical if researchers approached you and said, we're really close to coming up with a treatment, not a cure, because they've heard your messaging from unseen and they want to be respectful. and they say we want to work alongside you. Is there ever a scenario where you would take them up on that offer? I just did it. No way.

Yes, Ocugent with the limelight trial. It is the first ever RP trial for my disease that is a treatment option regardless of your gene type. So historically for RP, we're looking at gene therapy, retinal chips, things like that. But a lot of it is stem cell therapy and gene. So as somebody with one of the rarest gene types, that was another strike against me because they're looking for the E65s, the most common forms of RP. They're not looking for the ultra rare kind that's going to impact less people. So this is the first trial that's happening where they're actually doing eye injections regardless of your form.

For people with more remaining vision, they are getting a slight increase in their vision. for people with less vision, they are getting stabilization of vision loss. When they approached me, obviously they approached me because I have a very large community of people with RP. You get diagnosed, you search RP,

I will come up. So I have a lot of captive RP audience, which is a real niche audience to try to reach. So it made sense for them to approach me. And I got on the phone with the doctors and the medical researchers. Do you think they're intimidated by you? I don't think so.

No? But I think... Well, I mean, like you're technically way more experience than them. Not just because you have the condition, but because you've been living this state of dealing with researchers, doctors, how they're talking about it, how they're not talking about it. So do you think they feel some type of way? I don't think they knew my opinion. Okay. So I made my opinion very clear.

Actually, before I was even willing to get on a call with them myself, I had my team get on a call and make my opinion known. Okay, got it. So my team was like, look, she doesn't want to be cured. This is her opinion. She has a bone to pick with the marketing and PR teams of a lot of medical research and charities that fundraise for it. And I jumped on a secondary call with them after because they seemed to respond well to that. I gave it to them super straight, told them my thoughts.

And the only reason I worked with them is because they said, we want you to shape the marketing we want you to tell us how to do this and so I made a video and I can tell you overwhelmingly people commented and said thank you for approaching this with so much empathy and compassion for those of us who still can't be treated because usually things like life changing are the phrases we use devastating diagnosis suffering from giving them life back that is all extremely ablest harmful language all right now i'm going to give you a devil's advocate okay if they through marketing use the ablest language that you just described life changing devastating condition et cetera and they're able to raise

a hundred x more money by pulling on those ableist heartstrings and therefore potentially create some sort of improvements in our medical knowledge or treatments. Or they do it more empathetically and therefore basically guilt those who are able to less, and therefore they raise less money. Which one do you choose? I would still choose to raise less money.

Because what I can tell you is that I would be a candidate for this trial. This is the first trial ever that I could do. I've now known about this trial for months. I have not submitted to do it. And this was a test for me, right? Like, this was a moment where I was actually given that option. And I've not cared to look.

I don't care to do it. It does not mean I'll never do it. But for the months that I've known about it, I have not bothered to put myself forward for it. And that, for me, I never knew, like, when the opportunity arises, would I actually be like, you know what? Oh, my God, I thought I didn't care anymore, but still deep down in me, I do. I don't.

And it was actually really incredible for me to see that, to say I'm not just saying this. I actually mean it. And I've lost more vision in the past year. The first half of this year, I was really grieving that and really struggling. And all of a sudden, this opportunity came up. And I still haven't bothered because I just don't feel like I need to. And that's freedom. And I shared it because A, it gave me an opportunity to help shape the marketing of the thing I'm very critical of and hopefully set a precedent.

and B, it'll reach the people who do still want that information. And I'm not here to gatekeep that. I'm not here to say we shouldn't do it. If you want that, I'm happy for you that it exists and you can do that. And maybe one day I'll choose to. But right now, I'm okay with who I am. And I know it's so hard for non-disabled people to grasp that. That yes, my life is harder because I'm disabled, but also I'm okay with being disabled.

My disability has given me so much. Yes, it is taken from me, but is also given to me. And I am good as I am. And I think for me, what I would suggest to doctors is what my doctor eventually did. From the moment I was diagnosed, her assumption was that I wanted to be cured. and through some traumatic events of her own in her personal life she really had an awakening and in my 20s

she sat down with me and she said can I ask you a question does it go for it she said do you actually want to be cured keep in mind this is a world-class ophthalmologist who has spent her entire career being a part of the research to reverse RP. That's her whole life.

And I said, no. And she said, okay, then I don't need to tell you anything else about what we're doing. Ask the patients. don't assume ask them do you want to know about this do you want to know about treatment options and research

or do you just want to tell me want me to tell you about resources about rehabilitation about the community doctors only give us pamphlets about medical treatments they don't give us pamphlets about adaptive skiing

why not because rebuilding your life starts immediately. Treatments and cures don't. And one thing that was really difficult for me when I went blind is that growing up in Canada, where I'm from originally, there is no medical intervention when you go blind. You are sent to a charity. So immediately, you're, you know, we have a spinal cord injury. You're sent down the hall at the hospital to rehab, to OT, to PT. When you go blind, you're sent to a charity who is supposed to give you all the resources you need. ROT and PT is through charity. So you're immediately a charity case, which holds a lot of stigma for a lot of people.

So a lot of people who go blind don't seek help. They do not get O&M trains. They do not get O&M to learn how to use a white cane. They do not learn about assistive technology. They do not learn about Braille. So the only thing they've been given is resources about treatment that doesn't yet exist for most people. And they are not given access

to tools to rebuild life today. And that's really problematic. And that keeps a lot of blind people stuck. I want to seek to understand more about the fact that you've seemed determined at this stage of your life to not want the cure. Is that because, like the driving force behind that, because you're so comfortable with where you are in life that there's no added benefit to a quote-unquote cure? Is it because this is part of who you are in your identity and you feel comfortable in this

identity? Or is it something that I'm not referencing? I think it's a bit of both, but I think more so than anything, it's that I lost myself once. And I found this person. I don't want to lose this person now. And I think a lot of people don't realize that there would be just as much trauma in regaining site as there wasn't losing it. I would have to go through just as much rehabilitation. At 31 years old, I would have to learn how to read and write. I would have to learn my colors. I would have to learn how to function, how to decode the world visually again. I don't know how to do any of that. I have zero visual memory. I can't close my eyes and picture anything. So re-learning to see would

take a lot of work. I think I would feel the loss of my community. I've learned how to live my best life this way. And I'm comfortable in that. And it doesn't mean it's easy. A lot of things take me longer. I do need help with certain things. I have to do a lot of my own accommodations and workarounds, but I'm doing great. My life is better than I could have ever dreamed it to be. Having sight wouldn't mean I no longer have problems. It would just mean I have different problems. And I've learned how to live with the problems I have.

So I don't need to reintroduce new ones into my life. I know you can't speak for the blind community as a whole, but obviously you're more well-versed. of that community and what they think, do you believe that most would feel in a similar way as you feel about the concept of a cure? Or do you feel like your situation is very individual to how you feel? It's very nuanced. I think oftentimes it depends on how early on in their diagnosis journey they are. It often depends on the access they've had to the community. So are they still mostly around non-disabled people who are ablest?

Or have they joined the empowered disability rights movement and seen the other side, seen what life can be? Have they been given access to learn how to ski again, to learn how to use a cane, to get a guide dog, to learn how to use a screen reader, to get a job? Or have they not been given access to any of that? all of that's going to change their experience. I think oftentimes it also depends on whether you've been blind from birth or not.

Most people blind from birth, that's the only life they've known. They're good. Like, they're happy as they are. That's the life they know. Whereas a lot of people who go blind over time or through a traumatic accident, they know the other side. So often in that grieving process, they do want their vision back. So it's a huge spectrum.

How does your family, how do your parents feel about your decision on the current cure of things? They were so relieved. When I went to them and said, I don't want to fundraise anymore, I don't want to be a part of the narrative that disabled people need to be cured through medical intervention, they were like, thank God, because they felt like I was under so much. pressure to change. And when I told them I'm okay as I am, they were like, good, because you are. Like, we think you're good enough as you are, but we thought our job as good parents was to help you be cured because that's what society told us. And if you feel like you're happy as you are, we're happy for you.

if we were to the condition that you were diagnosed with in medicine we would call this a pathology because we have physiology which is how the body functions quote unquote at normal and then pathology if something goes wrong with a body part so diabetes as an example is pathology of how your body processes sugar now if a patient comes to my office and says doctor like I want to get my blood work we do the blood work we find out that they have diabetes I explain to them the treatment for diabetes and I explain the reason why we should treat diabetes because it raises the risk of heart attack stroke because I function under the assumption that they're here to see me as a doctor that they want to prolong their life improve their quality of

life that's kind of my predisposition as a physician right and the difference is my disease isn't fatal, right? I'm not going to die from being blind. Nothing's going to negatively happen if I don't treat myself, right? I'm not going to develop secondary issues like vision loss, like losing a limb, right, which are all things that can happen with diabetes that goes untreated. I'm not suggesting we don't treat disease. Cancer, we should continue to seek treatment for terminal illness, right? Disability and chronic illness are not the same. Chronic illness can be disabling, but not all disabilities are chronic illness. What about, again, playing devil's advocate here, the fact that you're at a higher risk for injury,

like you had walking off that five foot stage and having a fall. Does that create some sort of risk for you that you might need to think about or no? I could fall if I was cited. People have accidents every day. That's why they're called accidents. Right, but I do have patients who tell me people have heart attacks all the time. time. So I smoke. People have heart attacks, not that big of a deal. So it's like we're trying to figure out the risk tolerance. Right. But there's a lot of things that I put in place to reduce that

risk, right? Those are the accommodations. I use a cane or a guide dog. They help me navigate safely. My guide dog gets me around obstacles, stops at stairs so I don't fall down them. He does what he needs to do to keep me safe. That's my accommodation. So that's like your risk reduction. Correct. Got it. Doesn't mean it's foolproof. But I can say when I walked off the stage, that's because I wasn't using my cane or my guide dog. That was my poor choice as a blind person.

If I had been using the tools that I'm supposed to, that wouldn't have happened. And so it's all about making sure that you're using the different resources to help reduce those risks. Makes sense. What's the plan for the rest of the journey? Where do you want to go from here? Well, I hope that unseen is the first book of many. I went into this book thinking I've got one book in me and I've left thinking I've got eight books in me.

So hopefully the first book of many. When I turned 30 last year, I looked back at my 20s. You know, I started YouTube at 20. So when I turned 30, it had been 10 years. And I looked at everything I had achieved through that. And I was really proud. Because as I said, when I started, there was no disability community on YouTube. And I helped be a part of creating that.

I'm by no means solely responsible, but I was a part of it. And I'm proud of that. I'm proud of helping forge a path for other disabled content creators who are now making a full-time living, a community that is vastly under-employed, is now making a full-time living, and doing it well-actively educating society. That's huge.

I'm very proud of that. And I thought when I turned 40, what do I want to look back on and say I accomplished in my 30s? I want to be a part of making tangible change. And that's formed its path into product consulting. I now consult Fortune 500 companies on product design to make products and their packaging more universally accessible. and to make their advertising more inclusive. There's a lot of NDAs. This is not a lot I can say.

But what I can say is one recent example is a person was going to have foggy eyes to represent their blindness. And now, thanks to me, they will no longer. That's huge. My community has always been portrayed for having foggy eyes in every show When we're represented, that's pretty much always how we're represented.

And the only disease that really causes that is cataracts. That is one form of blindness. And it leads to people like me being not believed that we're blind because we don't have foggy gray eyes. So being able to be a part of creating a blind character who will not have those eyes but was originally going to, that feels like tangible change that will positively impact my community. knowing that I've been a part of creating, say, a beauty product, that somebody will walk into Alta and buy that product and have no idea that I'm the reason they have an easier time purchasing and using it, that's a real way I can impact my community and build a world that's more inclusive for them.

And that's really exciting. So doing a lot more corporate consulting, corporate speaking, to get into the source, right? It's so much easier to make change from the inside. And these are the companies that have the budgets to make the change. So it's really exciting to be working with them. That's awesome. Well, I'm excited to sit down for round two where the next book is coming out. Everyone, obviously, will check out Unseen.

We have it sitting right here in the middle between us. Where can people follow along your journey? At Molly Burke official on every platform. And the book Unseen, How I Lost My Vision, But Found My Voice, is available everywhere you buy books. And yes, the audio book is being read by me. I've had that question so much. Yes, it is.

Well, you know what's funny, going back to what we said earlier, people misuse verbs all the time. I frequently say I've read books that I've absolutely not read. I've listened to on a lot of them. So that further strengthens the conversation that we had today. And one thing that I did with this book, because I consult on accessibility and universal design is all of my design elements were extremely intentional. So you'll find tactile braille on the cover.

It says the title in my name. You'll see bold, high-color contrast font. You will see easily legible fonts. You will see that the gold metallic foil, which pays homage to the fact that I still have light perception and can see metallic foil when light hits it. On the inside, we've chosen to use the Braille Institute hyper-legible Atkinson font instead of the traditional font

that books use, which is designed to be more legible for those with print reading disabilities like dyslexia and low vision. I've chosen to use bold instead of italics, which is also easier to read for print disabilities. I've increased the font size and the spacing between letters and words. And the entire crew who did the cover shoot were all disabled women. So my makeup artist was a quadriplegic. My hairstylist was legally blind. And my photographer was an amputee.

And it's really important to me that if I'm advocating to hire inclusively, that I hire inclusively. And if I'm advocating to design inclusively, I'm designing inclusively. So I'm having a lot of people say, I have dyslexia, so I never read a book. I'm going to get your book and read it along while I listen to the audio book. Or I'm blind. I can't read the book, but I want to buy a book that has braille on the cover so it can sit on my coffee table. And it's really important to me that people feel seen in unseen.

That's awesome. Look, thank you for sharing your journey with me because I think that there's a lot for me to learn as a physician, I think there's a lot for my community to learn, both from your shaped experiences and your unique perspective on this. Because I will say when I listen to the aspect of that movie where they said, why would you get a cochlear implant? You're going to lose your space in the community. That's foreign to me. And hearing it from your perspective opens up my perspective of understanding how one could feel comfortable in their scenarios, how they can use risk reduction as opposed to chasing a cure, and it's not necessarily mandatory.

But again, it could be for someone, but it totally makes sense in the way you say it. And I didn't expect for that to happen. So I thank you for that. Thank you. And thank you for me, open-minded to it. Again, I know it's a really foreign idea to a lot of people. And I think it's all about giving patients access to both sides because we've really only been given access to the medical side, but the medical is our first intervention.

So being able to say here's the other side, here's access to community, to culture, to accommodations is really important because the deaf community is a beautiful, thriving culture, and who are we to say that that culture is wrong? Because it's different from ours. Very true. Well, thank you so much, Molly. Appreciate your time. Thank you. Hope you get a chance to check out Molly's book Unseen. It's available anywhere you get your books.

And as she said, there is an audible version. You know, Molly has certainly overcome a lot. Also, another guest who has overcome a lot was Bia, who came onto the show last year to tell me about how an unlicensed med spa nearly killed her with vitamin B12 shots. Scroll on back through the feed to check out that episode. And if you enjoyed this one, please don't hesitate to review us. Give us five stars.

Ask a question in the comments. And as always, stay happy and healthy.