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Speaker 1: The hardest parts of my life aren't that I can't see.

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Speaker 1: The hardest parts of my life are society's attitude and

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Speaker 1: the inaccessibility I face. My blindness isn't a negative bad

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Speaker 1: thing about me. It's a part of what makes Molly Molly,

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Speaker 1: and there's nothing negative about it. At fourteen is when

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Speaker 1: I lost the majority of my vision. I definitely hit

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Speaker 1: rock bottom. If you change nothing in your life, nothing's

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Speaker 1: going to change. I can't be a passenger in recovery

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Speaker 1: and expect to get better. I'm going to try to

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Speaker 1: take my pain and turn it into purpose. I started

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Speaker 1: getting really into health and wellness practices, eating food that

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Speaker 1: actually fueled my mental and physical well being, and all

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Speaker 1: of that, over many years combined help me rebuild and

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Speaker 1: find new direction that felt worth living. For Cope is

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Speaker 1: one of the most powerful things we have, because sometimes

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Speaker 1: that is all you have.

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Speaker 2: We have a great episode coming up today with Molly Burke,

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Speaker 2: a creator, author and a speaker who all so happens

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Speaker 2: to be blind. We'll be right back with our conversation

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Speaker 2: after this short break. What is up, guys, Welcome back

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Speaker 2: to Post Run High. Today's guest is Molly Burke. She

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Speaker 2: is a creator and author, a speaker who has built

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Speaker 2: a massive community by talking honestly about identity, confidence, and accessibility.

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Speaker 2: Mollie is someone who has shown the power of positive

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Speaker 2: thinking and what happens regardless of the cards you have

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Speaker 2: been dealt when you just keep moving forward.

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Speaker 3: Mollie, I have been following you for years.

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Speaker 2: I've been watching your vlogs, watching your YouTube videos, and

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Speaker 2: I'm just so excited to be here with you today.

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Speaker 1: Thank you, and you absolutely slaid that intro. I feel

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Speaker 1: so honor.

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Speaker 2: Second time is a charm. I personally feel like the

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Speaker 2: first time was better. But guys, we had audio issues

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Speaker 2: and then we had to refilm it.

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Speaker 3: So no you qushed it. It was good ten out

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Speaker 3: of ten.

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Speaker 2: Okay, So Molly and I just ran a mile through

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Speaker 2: West Hollywood and then we got a little machia afterwards,

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Speaker 2: which we're gonna be a sip in during this podcast.

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Speaker 2: But how are you feeling postar one mile run?

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Speaker 1: I'm good, you know, as a non runner. I'm like,

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Speaker 1: you did it, Mollie. You made it through.

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Speaker 2: Yeah.

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Speaker 1: I feel good. I feel energized. Part of that could

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Speaker 1: be the macha.

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Speaker 2: We talked about this a little bit on the run,

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Speaker 2: but just to rego over it. Like what does movement

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Speaker 2: look like in your life currently?

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Speaker 1: So I'm a big like yoga, pilates, that kind of workout,

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Speaker 1: and then I do for cardio an uphill incline, treadmill

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Speaker 1: walk usually at like an eight to eight point five incline,

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Speaker 1: so I'll do like a pretty steep incline and then

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Speaker 1: like three point five miles an hour to three point

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Speaker 1: eight miles an hour, so like not super fast, and

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Speaker 1: I'll do that for like thirty to forty five minutes,

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Speaker 1: depending on the day. And then yeah, like mostly all

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Speaker 1: different forms of yoga. I love suspension yoga. I love

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Speaker 1: for former pilates, Matt pilates, I love classes I've been

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Speaker 1: getting into like fusion classes too, like bar meets pilates,

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Speaker 1: or like sculpt yoga where you're doing yoga with weights

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Speaker 1: a lot of the like strap on wrist and ankle weights,

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Speaker 1: mini hand weights, that kind of stuff. So I like

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Speaker 1: to mix it up. But I I've done all different

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Speaker 1: kinds of fitness. I grew up a competitive athlete, so

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Speaker 1: just being able to move my body has always been

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Speaker 1: really important to me in a big part of my life.

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Speaker 1: But of course as I went blind, I had to

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Speaker 1: change and adapt to that. And what really met my needs?

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Speaker 3: What sports did you play growing up? Like? What was your.

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Speaker 1: Oh my girl, I did it all. I'm like, how

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Speaker 1: did my parents juggle my schedule? Like every single day

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Speaker 1: I had an activity? I was truly like, let's do everything.

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Speaker 1: But my big sports where I was a competitive dancer

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Speaker 1: and I was a competitive soccer player, and I was

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Speaker 1: a like center forward or left wing or right wing

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Speaker 1: depending on the game.

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Speaker 2: So what was that journey like for you when you

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Speaker 2: started going blind? And I know it was something that

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Speaker 2: was happening. You're basically your whole life since and you

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Speaker 2: can tell the story of what age you know you

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Speaker 2: got diagnosed and then when you officially went blind. But

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Speaker 2: what was that journey like for you going from being

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Speaker 2: able to see and loving to move your body and

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Speaker 2: being an athlete to then losing your vision.

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Speaker 1: So I've been legally blind from birth, but to me,

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Speaker 1: like I was cited, I could see a lot. I

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Speaker 1: could read and write, and I could see colors and

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Speaker 1: faces and navigate the world without any mobility aid. Like

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Speaker 1: I was. I was good, you know, Like I said,

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Speaker 1: I played competitive soccer on a site a team as

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Speaker 1: a as a forward position, so even though I was

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Speaker 1: legally blind, it wasn't really impacting my ability to move.

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Speaker 1: I was diagnosed with my disease at four years old.

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Speaker 1: My main eye disease is called Reddinitis pigmentosa, which causes

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Speaker 1: progressive vision loss. So on and off throughout childhood, I

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Speaker 1: would slowly lose vision, it would stabilize, slowly lose it stabilize,

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Speaker 1: And around eight years old is when I had to

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Speaker 1: be pulled from soccer, and that was devastating to me.

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Speaker 1: Soccer was honestly like my identity. I like identified as

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Speaker 1: a soccer player. That was my passion, and so having

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Speaker 1: to be pulled was really upsetting to me. And I

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Speaker 1: had like just gone competitive that year, Like it was

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Speaker 1: like I was so excited. I'd worked my way up

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Speaker 1: through the whole system to get to like the most

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Speaker 1: competitive level, and then all of a sudden, I'm being

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Speaker 1: pulled because they started noticing that I just wasn't seeing

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Speaker 1: enough to be safe on the field anymore. And that

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Speaker 1: wasn't a call that I, at eight years old could

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Speaker 1: make for myself, you know. So my parents and my

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Speaker 1: coaches had to be like it's time and they pulled

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Speaker 1: me and I ended up transitioning because it was winter

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Speaker 1: when I stopped playing soccer, because when you're competitive, you know,

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Speaker 1: you play all year round. So it was during like

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Speaker 1: winter training that I was pulled and my parents were like,

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Speaker 1: we need to find a sport to fill that gap

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Speaker 1: for her, and so they found downhill skiing for the blind,

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Speaker 1: and so that kind of became my new love. I

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Speaker 1: fell in love with downhill skiing, and slowly, like every

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Speaker 1: time I would lose an activity, my parents would find

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Speaker 1: an accessible one to fill that void in my life,

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Speaker 1: so that I never had to be without movement. But

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Speaker 1: I'm so glad I was a part of my life

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Speaker 1: from such a young age. Because being blind, you navigate

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Speaker 1: the world so differently, and even just something as simple

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Speaker 1: as your body moving in space can be difficult to understand.

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Speaker 1: And because balance relies so much on vision, a lot

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Speaker 1: of blind people really struggle with balance, including myself. You know,

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Speaker 1: even in yoga class, right, they't to say, if you

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Speaker 1: want to challenge yourself, close your eyes when you're in

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Speaker 1: balancing poses. So in dance, right, I couldn't spot when

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Speaker 1: I was doing my turns. So, like all of these

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Speaker 1: things was constantly adapting. So I feel like having a

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Speaker 1: base level of fitness and activity that got me connected

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Speaker 1: and understanding how my body moves and really like feeling

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Speaker 1: movement in my body was super important, and then maintaining

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Speaker 1: that and finding new accessible ways to keep that up

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Speaker 1: has been a real game changer for me, just with

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Speaker 1: my body and movement in space and balance, but beyond that,

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Speaker 1: it's also really hard for blind people to maintain fitness

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Speaker 1: because it is not as easy to move within space.

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Speaker 1: You know, we can't just go out for a run,

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Speaker 1: jump on a bike, do these things that most people

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Speaker 1: could do if they want to. And even just walking,

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Speaker 1: we often like sometimes walk slower because we're navigating through

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Speaker 1: sound and through the tactile feel of our cane or

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Speaker 1: through the pull of a guide dog's harness and takes

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Speaker 1: a lot more concentration to navigate, so we're not even

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Speaker 1: necessarily walking as quickly. So it's so important to be

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Speaker 1: intentional about getting that movement in because frankly, like I'm

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Speaker 1: not just getting it in a day to day easy

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Speaker 1: way that the average person might be able to. And

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Speaker 1: then at fourteen is when I lost the majority of

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Speaker 1: my vision, and that was really hard I had to

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Speaker 1: stop dancing when I was about twelve, so like, slowly

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Speaker 1: throughout childhood, I was losing different physical activities and then

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Speaker 1: replacing them with others like horseback riding or or former

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Speaker 1: plage suspension yoga, oftentimes trying to find activities that a

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Speaker 1: either offered accessibility, like downhill skiing for the blind with

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Speaker 1: a sight of guide, or horseback riding at a stable

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Speaker 1: that specialized in disability writing, or finding things like that

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Speaker 1: reformer pilates or suspension yoga where I had a physical

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Speaker 1: tool that I was utilizing to help me balance, so

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Speaker 1: that took like one of the elements away, and then

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Speaker 1: I was stationary with this one machine, not moving and

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Speaker 1: following the verbal instructions of a teacher.

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Speaker 2: So much to unpack there, but I feel like, A,

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Speaker 2: it's so great to know how involved your parents were,

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Speaker 2: because I feel like family is so important, especially when

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Speaker 2: you're going through something that is so traumatic and causing

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Speaker 2: so much rapid change in your life at such a

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Speaker 2: young age. Like I know what it was like to

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Speaker 2: be playing a sport competitively and then having that sport

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Speaker 2: taken away from me, but I do not know what

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Speaker 2: it would be like to you know, have that sport

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Speaker 2: taken away from you because you can't physically see, you know,

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Speaker 2: and be on the field. So like, I can't even

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Speaker 2: imagine that experience was like from you, not only like

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Speaker 2: from the physical aspect of it, but also then from

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Speaker 2: the social aspect, because it's like, as young kids, you

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Speaker 2: find so much community and so much friendships in being

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Speaker 2: on these sports teams. So to constantly be like changing

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Speaker 2: the sport that you're doing and then you know, forcing

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Speaker 2: yourself to adapt to a new one, Like obviously that's

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Speaker 2: very healthy for your mindset to be like, Okay, I'm adapting,

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Speaker 2: I'm changing, you know, I'm opening myself up to this

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Speaker 2: new thing. But it's also really hard to constantly have

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Speaker 2: these things that you're passionate about be stripped away from you.

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Speaker 1: Yeah. Absolutely, the emotional impact was huge. Like I struggled

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Speaker 1: a lot with depression, with anxiety, and it was extra

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Speaker 1: difficult because I was always bullied at school. So my

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Speaker 1: activities outside of school were that much more important to

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Speaker 1: me because that was where I had community and I

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Speaker 1: felt accepted. And it was always frustrated to me that

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Speaker 1: like wait, when I'm at summer camps or I'm at

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Speaker 1: my physical activities. I'm super social. I have all these friends,

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Speaker 1: everybody accepts me and help me, and then I go

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Speaker 1: to school and everybody's like mean to me and judges me,

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Speaker 1: and it was it was really frustrating. But that's why

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Speaker 1: those extracurriculars were so much more important for me and

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Speaker 1: fact to this day, my longest standing friend was one

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Speaker 1: of my soccer teammates. We've we've played together since we

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Speaker 1: were like five. We played together on the Purple Powerpuff

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Speaker 1: Girls when I went when we both we both went

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Speaker 1: competitive the same year. We were both forward position, and

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Speaker 1: we would refuse to play if we weren't both on

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Speaker 1: the field at the same time because we always wanted

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Speaker 1: to be on the sidelines at the same time, like

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Speaker 1: eating our orange slices and like kiking on the side.

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Speaker 1: So yeah, it was really important for me socially.

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Speaker 3: It is.

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Speaker 2: And also the friendships that you make through doing something

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Speaker 2: physically challenging, I think are like the best friendships. And

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Speaker 2: that's why I love doing the running interview show because

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Speaker 2: it's like you're pushing yourself through doing something hard. You're

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Speaker 2: running together and then you know, you sit down and

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Speaker 2: you podcast after. But I don't know, just the act

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Speaker 2: of doing something physical creates.

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Speaker 3: These really special friendships.

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Speaker 2: So I love knowing that you've made pain such a

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Speaker 2: close relationship with your friend from your soccer team back

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Speaker 2: in the day. Also just speaks to her as a person,

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Speaker 2: right to not just like drop you as a friend

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Speaker 2: because you were no longer on the team, right, And

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Speaker 2: it speaks to the power of your guys's friendship and connection.

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Speaker 3: So that's awesome. What's her name so we can shout

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Speaker 3: her out page hi, page page.

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Speaker 2: Yeah.

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Speaker 1: It was really sad because you know, at eight years

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Speaker 1: old when I stopped, it's not like we had like

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Speaker 1: cell phones to text each other or I'm aging myself

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Speaker 1: like MSN to message each other. So we lost contact

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Speaker 1: for a few years, and then once we got MSN.

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Speaker 1: She she was also an incredible hockey player, so she

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Speaker 1: actually left soccer to focus on competitive hockey. And one

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Speaker 1: of her hockey teammates was my classmate and she they

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Speaker 1: started talking and realized they both knew me, and she's like,

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Speaker 1: give me her MSN and she reached back out like

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Speaker 1: years later, and you know, our connection was just exactly

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Speaker 1: the same, and she's an incredible person.

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Speaker 2: That's so cute when you say you were getting bullied

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Speaker 2: in school. Did the bullying happen as a result of

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Speaker 2: you losing your vision or was that something you were

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Speaker 2: always struggling with.

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Speaker 1: I always struggled with it, but it was also always

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Speaker 1: pretty clear to my classmates that I was different. And

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Speaker 1: I think when you stand out as being different, you

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Speaker 1: become an easy target because you're more vulnerable. And kids

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Speaker 1: don't understand differences unless we teach them, and back then,

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Speaker 1: nobody was being taught. You know, even to this day,

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Speaker 1: disabled people, out of all minorities, have the least media representation,

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Speaker 1: and in twenty twenty five we have three point one

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Speaker 1: percent media representation. Most of that is written, directed, and

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Speaker 1: played by non disabled people, so it's inauthentic and perpetuate

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Speaker 1: stereotypes and misconceptions. And within that, the least of our

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Speaker 1: representation is in children's media, and media tends to be

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Speaker 1: the only way that people learn about disability. So kids

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Speaker 1: really knew nothing about disability, and a lot of us

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Speaker 1: come from generations where we were taught when you saw

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Speaker 1: a disabled person, don't point, don't look, don't stare, don't

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Speaker 1: ask questions aka ignore, And so when a kid would ask,

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Speaker 1: it'd be like sh and then they were never given

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Speaker 1: access to learning, and therefore I was different. They feared me.

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Speaker 1: I was weird because you know, I started learning Braille

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Speaker 1: at five, and I had a special teacher that sat

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Speaker 1: beside me in class growing up. So I had like

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Speaker 1: a giant desk with a lamp on it that I

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Speaker 1: would illuminate my work with. I had a big magnifying

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Speaker 1: glass to see my work. I wrote with markers instead

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Speaker 1: of pencils. I wrote large print instead of normal small font.

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Speaker 1: I had like cream colored paper with thick black lines

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Speaker 1: instead of white paper with the thin lines. So there

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Speaker 1: was like all of these little signs that I was different.

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Speaker 1: My special teacher would write on a whiteboard what the

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Speaker 1: real teacher was writing on a chalkboard at the front

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Speaker 1: of the class, So like, the kids knew I was different,

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Speaker 1: but they didn't know how or why, and so it

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Speaker 1: was just really hard. At nine years old, I started

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Speaker 1: using a cane full time, so again that made me

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Speaker 1: very obviously different, and kids just didn't treat me very nicely,

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Speaker 1: which was hard because I'm an extrovert. I'm a super

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Speaker 1: bubbly social person, and so I was not one to

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Speaker 1: be like a little wallflower and just be like, Okay,

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Speaker 1: I was always trying to put myself in the middle

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Speaker 1: of things because I always wanted to be like what's

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Speaker 1: going on, Like I want to be at the sleepover,

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Speaker 1: I want to go to the mall, I want to

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Speaker 1: hang out friends, And then I would like put myself

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Speaker 1: in these positions where I would go to a sleepover

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Speaker 1: with my friends and then they would be mean to me.

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Speaker 1: And so it was really tough, and I ended up

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Speaker 1: changing schools five times over the course of like you know,

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Speaker 1: grade one through to graduating grade twelve, just in attempts

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Speaker 1: to find better social situations and better accessibility and adaptations

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Speaker 1: for me as my needs as a blind student continually

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Speaker 1: changed as my vision loss continually happened.

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Speaker 2: Yeah, and it seems like the vision loss like to

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Speaker 2: be nine years old and already using a cane, like

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Speaker 2: it even though you completely lost it at fourteen, And

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Speaker 2: now you see shadows for its shadows and light.

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Speaker 1: Yeah, I see light and shadows, Like right now, I

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Speaker 1: can see that we have three lights around us, three

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Speaker 1: like box lights, and then I can see that there's

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Speaker 1: like a chandelier over there. When I say I can

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Speaker 1: see that there's a chandelier. I just see dots of light.

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Speaker 1: I don't see like the chandelier, so like I could

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Speaker 1: see a candle in the middle of the table. All

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Speaker 1: I see is the flame, but I know it's a

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Speaker 1: candle because context clues. So I can walk in here

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Speaker 1: and be like, oh, I like that light. Literally it's

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Speaker 1: all black to me. Everything is black. And then I

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Speaker 1: just see like all these spots of light. I'm like, Oh,

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Speaker 1: that's pretty. I like all the spots of light. So

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Speaker 1: I like it's a huge joke with my friends and

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Speaker 1: family because everywhere we go, I'm like, oh, I like

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Speaker 1: the lights. Like that is the only thing I can

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Speaker 1: ever compliment anywhere on So like, walk into somebody's I'm like,

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Speaker 1: I love your lighting.

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Speaker 3: No, but the lighting. The light.

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Speaker 2: So guys, we're just for a little bit of context too,

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Speaker 2: because this is the first time you guys are seeing

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Speaker 2: me if you're watching this podcast or if you're listening.

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Speaker 2: This is the first podcast that we're doing in la

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Speaker 2: and we're going to be here till the end of

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Speaker 2: February and then the first week of March we're going

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Speaker 2: to be in Austin, Texas filming. But this is our

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Speaker 2: first shoot in our living room here in LA And

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Speaker 2: the person that we rent from, John, his taste is

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Speaker 2: like very eclectic, so he has like.

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Speaker 3: The coolest nick knacks.

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Speaker 2: Like even just if you guys were to go to

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Speaker 2: YouTube and look at the set that we're sitting in

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Speaker 2: right now, like the couch is like really cool, Like

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Speaker 2: it's just how you'd want a podcast set to be,

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Speaker 2: because it's kind of like funky. But the light that

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Speaker 2: that Molly was referencing looks like a giant like spike ball,

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Speaker 2: Like it kind of looks like what a blowfish looks

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Speaker 2: like when like they blow up in a way and

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Speaker 2: then there's like lights on the specs. But I loved

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Speaker 2: so much when you when you compliment.

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Speaker 3: The light, because the light is really cool, just saying.

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Speaker 1: Yeah, I'm always looking for an interesting shape of light

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Speaker 1: because it's like when all you see is light, give

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Speaker 1: me something interesting to look at.

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Speaker 2: And isn't it true that your sight also there's almost

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Speaker 2: like fireworks going off in it.

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Speaker 3: So right now, what are you seeing besides you just explained?

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Speaker 1: Yeah, So I have Charles Benny syndrome, which happens mostly

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Speaker 1: to people with retinal eye diseases like mine and mostly

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Speaker 1: to people who lose their vision very quickly, and so

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Speaker 1: essentially my brain kind of panicked and was like I

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Speaker 1: need to see, and so it rerouted itself and did

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Speaker 1: this fun thing where twenty four to seven NonStop, eyes open,

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Speaker 1: eyes closed, going to sleep all the time. I see blue, green,

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Speaker 1: and purple, flashing whizzing lights in different shapes and patterns.

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Speaker 1: So yeah, very fun. It's actually the only condition that

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Speaker 1: we currently know of that causes visual hallucinations that has

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Speaker 1: nothing to do with like mental health or your brain

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Speaker 1: in that way. So it is technically visual hallucinations like

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Speaker 1: you might experience on certain drugs or with certain mental

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Speaker 1: health conditions. Some people with Charles Bonnet syndrome will actually

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Speaker 1: see like complete scenes. So like one man that I

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Speaker 1: spoke to, like walked into a room and like saw

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Speaker 1: a mid medieval scene happening in his living room, so

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Speaker 1: like you will, or like a waterfall in their bedroom,

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Speaker 1: like you will literally see full scenes that aren't there.

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Speaker 1: And so I like to talk about it because it's

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Speaker 1: very undernown and a lot of people who are experiencing

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Speaker 1: vision loss and develop Charles Bne syndrome feel a lot

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Speaker 1: of shame or embarrassment or fear so they don't tell

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Speaker 1: anybody because there's a lot of stigma around having visual hallucinations.

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Speaker 1: But it is unfortunately something that can happen for those

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Speaker 1: of us who deal with significant quick vision loss due

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Speaker 1: to retinal diseases. And I also like to talk about

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Speaker 1: it because a lot of elderly people are misdiagnosed with

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Speaker 1: things like Alzheimer's or dementia because they are dealing with

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Speaker 1: macular degeneration, which is a retinal disease that causes significant

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Speaker 1: vision loss later in life, and they develop Charles Benet

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Speaker 1: syndrome where they are seeing things and they start saying

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Speaker 1: that and people misdiagnose them. So I really like to

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Speaker 1: raise awareness because it's a super rare condition that is

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Speaker 1: not talked about. A lot of medical providers don't even

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Speaker 1: know about it. Oh yeah, I like to talk about

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Speaker 1: it and make sure people understand that this is a

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Speaker 1: totally normal thing that can happen with vision loss. There

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Speaker 1: should be no stigma around it, whether it's mental health

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Speaker 1: or not, like you should speak to a professional if

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Speaker 1: you're experiencing visual hocinations of any kind. But yeah, it's

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Speaker 1: something that can happen and it does not necessarily mean

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Speaker 1: there's any mental health or drug use happening.

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Speaker 2: It's wild what our bodies do when they're trying to

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Speaker 2: compensate for something, and like the fact that that is

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Speaker 2: something that happens is just it's crazy.

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Speaker 1: Yeah, I kind of liken it too. A lot of

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Speaker 1: my friends are amputees. You know, listen when you're disabled,

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Speaker 1: like most people don't go A lot of my friends

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Speaker 1: are amputees. But when you're disabled and your whole world

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Speaker 1: is disability advocacy, A lot of my friends are disabled.

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Speaker 1: So I have a lot of disabled friends who are amputees,

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Speaker 1: and they talk about phantom limb pain where they feel

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Speaker 1: like their foot is itchy and they aren't above the

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Speaker 1: knee amputee, they don't have a foot and they feel

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Speaker 1: like their foot is itchy or it's painful, and it's

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Speaker 1: the same thing their brain is, just like misfiring signals.

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Speaker 2: We've had a lot of amputee and just paralympic athletes

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Speaker 2: on the Running Interview show and they've talked about that

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Speaker 2: phenomena before and again, like pretty wild. When you were

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Speaker 2: growing up and going through your vision loss over the years,

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Speaker 2: what was your mindset shift? Because I know in twenty fourteen,

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Speaker 2: you started posting on YouTube, and that's where you started

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Speaker 2: growing your channel from. But I'd imagine that when it

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Speaker 2: all of a sudden hit and your vision kind of

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Speaker 2: rapidly declined, right, and you now could no longer see

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Speaker 2: what you were even used to seeing.

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Speaker 3: That comes with a lot of change.

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Speaker 2: And also, I'm sure depression and not feeling great about yourself, right.

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Speaker 2: I know you've been very open about that. So what

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Speaker 2: was the mindset shift for you to go from Okay,

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Speaker 2: I'm in a really dark place right now, this feels

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Speaker 2: like rock bottom to then lifting yourself out up out

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Speaker 2: of it.

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Speaker 1: I would love to say there's one fix it all solution,

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Speaker 1: but unfortunately that is not the case. I definitely hit

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Speaker 1: rock bottom. I was suicidal. I was struggling a lot

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Speaker 1: with depression, and I kind of like had a plan

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Speaker 1: and I was like, Okay, that's the option that's there.

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Speaker 1: I can leave this world. And the other option is

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Speaker 1: that I give myself one more chance. Because when I

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Speaker 1: went blind, I spiraled into such a dark place. I

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Speaker 1: was being so badly bullied, not just from peers, but

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Speaker 1: from teachers. I was being accused of faking it, not

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Speaker 1: from my family, not from my doctors, but from again,

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Speaker 1: like literally, teachers accused me of faking it.

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Speaker 3: And why do you think they accused you of faking it?

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Speaker 1: Because I don't fit the stereotype that society has about blindness.

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Speaker 1: And when you look up red a night as pigmentosa,

436
00:21:56,960 --> 00:21:59,080
Speaker 1: you see that it's a disease that causes tunnel vision

437
00:21:59,080 --> 00:22:02,080
Speaker 1: and night blindness. But what you don't see is those

438
00:22:02,119 --> 00:22:05,120
Speaker 1: are just the two symptoms that everybody with RP has.

439
00:22:05,200 --> 00:22:07,439
Speaker 1: Those are the two symptoms that across the spectrum you

440
00:22:07,520 --> 00:22:12,320
Speaker 1: develop if you have RP. However, there is like over

441
00:22:12,359 --> 00:22:15,000
Speaker 1: one hundred I think known forms of RP at this point,

442
00:22:15,400 --> 00:22:18,400
Speaker 1: and they all happen differently. I have a really rare

443
00:22:18,440 --> 00:22:21,040
Speaker 1: type called tulip one, and I actually recently found out

444
00:22:21,080 --> 00:22:23,760
Speaker 1: I have a second gene deformity as well, but tulip

445
00:22:23,760 --> 00:22:28,000
Speaker 1: one is my main gene deformity that causes significant early

446
00:22:28,080 --> 00:22:32,640
Speaker 1: onset blindness. So most people with RP, the most common kinds,

447
00:22:32,720 --> 00:22:36,560
Speaker 1: like E sixty four or E sixty five, go blind

448
00:22:36,920 --> 00:22:41,719
Speaker 1: later in life very slowly and typically retain some central

449
00:22:41,800 --> 00:22:45,960
Speaker 1: vision that's very different than something like me tulip one.

450
00:22:46,320 --> 00:22:49,639
Speaker 1: So it's like when you get keyboard warriors, like googling

451
00:22:49,680 --> 00:22:53,000
Speaker 1: the basic generic symptoms of a really rare complex disease.

452
00:22:53,720 --> 00:22:56,159
Speaker 1: And I also have multiple diseases. I've nystagmus, which is

453
00:22:56,160 --> 00:22:58,560
Speaker 1: what you see my eyes shaking. I had strabismus, which

454
00:22:58,600 --> 00:23:01,359
Speaker 1: was surgically corrected. Like I've all these lots of stuff

455
00:23:01,400 --> 00:23:03,560
Speaker 1: going on, but i just say RP because it's simple,

456
00:23:03,560 --> 00:23:06,639
Speaker 1: and nobody cares about my Like binder this thick of

457
00:23:06,760 --> 00:23:09,919
Speaker 1: a medical journey, so like I would have doctors or

458
00:23:09,920 --> 00:23:12,720
Speaker 1: I would have teachers being like she's faking it for

459
00:23:12,800 --> 00:23:16,879
Speaker 1: attention and stuff like that. Like my family had to

460
00:23:16,880 --> 00:23:19,080
Speaker 1: get my doctor on the phone to be like, Hi,

461
00:23:19,119 --> 00:23:22,400
Speaker 1: there's physically no way to fake this. This is really happening.

462
00:23:22,840 --> 00:23:24,440
Speaker 1: Like we can look in the back of her eye

463
00:23:24,560 --> 00:23:26,760
Speaker 1: and we can see that the tissue has died. There

464
00:23:26,840 --> 00:23:29,080
Speaker 1: is no way to fake this. They have like this

465
00:23:29,560 --> 00:23:32,560
Speaker 1: one test where they put a wire across the eyes

466
00:23:32,880 --> 00:23:35,680
Speaker 1: and it tests like how much your eye the back

467
00:23:35,680 --> 00:23:38,240
Speaker 1: of your eye is receiving and they were like, her

468
00:23:38,280 --> 00:23:42,000
Speaker 1: eye is receiving like less than ten percent, like it

469
00:23:42,080 --> 00:23:46,119
Speaker 1: was it was like three percent or something. So it

470
00:23:46,280 --> 00:23:50,399
Speaker 1: showed that my retina was like almost completely dead. And

471
00:23:50,480 --> 00:23:52,959
Speaker 1: so now like these teachers being like she's faking it,

472
00:23:53,560 --> 00:23:56,880
Speaker 1: and it was very frustrating. And then like anytime i'd

473
00:23:56,960 --> 00:24:00,520
Speaker 1: leave my house, people would treat me differently, and it

474
00:24:00,560 --> 00:24:02,960
Speaker 1: was hard because I felt like the same person inside.

475
00:24:03,040 --> 00:24:07,040
Speaker 1: I still had the same interests, humor, sass, intelligence, Like

476
00:24:07,080 --> 00:24:09,600
Speaker 1: I still had the same feelings, the passions, the interests.

477
00:24:10,040 --> 00:24:11,679
Speaker 1: I just couldn't see and I had to adapt and

478
00:24:11,720 --> 00:24:13,639
Speaker 1: do things differently. But all of a sudden, everybody was

479
00:24:13,680 --> 00:24:16,199
Speaker 1: like ignoring me. I'd go to a restaurant with my

480
00:24:16,280 --> 00:24:18,520
Speaker 1: family and they would be like, what does she want

481
00:24:19,119 --> 00:24:21,399
Speaker 1: instead of saying what do you want? It was like

482
00:24:21,480 --> 00:24:23,199
Speaker 1: I couldn't see the world and the world could no

483
00:24:23,280 --> 00:24:26,280
Speaker 1: longer see me, and that was just so frustrating, and

484
00:24:26,280 --> 00:24:30,840
Speaker 1: I felt like such despair, like how how is this

485
00:24:30,880 --> 00:24:32,840
Speaker 1: ever going to get better? And that's why I got

486
00:24:32,840 --> 00:24:34,439
Speaker 1: to that place of just like having this plan in

487
00:24:34,480 --> 00:24:38,439
Speaker 1: mind and being like, Okay, that's an option, And then

488
00:24:38,480 --> 00:24:40,480
Speaker 1: I was like, Okay, the other option is just like

489
00:24:41,200 --> 00:24:45,479
Speaker 1: trying because as I said to you at the end

490
00:24:45,520 --> 00:24:47,360
Speaker 1: of our run, like if you change nothing in your life,

491
00:24:47,359 --> 00:24:51,160
Speaker 1: nothing's going to change. So I need to be intentional

492
00:24:51,240 --> 00:24:55,320
Speaker 1: about changing, Like I can't be a passenger in recovery

493
00:24:55,359 --> 00:24:58,440
Speaker 1: and expect to get better. I need to be proactive

494
00:24:58,480 --> 00:25:02,680
Speaker 1: and be involved and want to get better and give

495
00:25:02,720 --> 00:25:06,280
Speaker 1: myself a chance. And so I kind of took it

496
00:25:06,320 --> 00:25:09,359
Speaker 1: one day at a time. That was all I could handle.

497
00:25:09,960 --> 00:25:12,520
Speaker 1: Was like, Okay, I'm going to wake up today and

498
00:25:12,840 --> 00:25:16,960
Speaker 1: today I'm going to try to take my pain and

499
00:25:17,000 --> 00:25:19,760
Speaker 1: turn it into purpose. I'm going to try to educate, motivate,

500
00:25:19,840 --> 00:25:22,919
Speaker 1: or inspire one person today with my story. So if

501
00:25:23,320 --> 00:25:26,439
Speaker 1: if I go out and somebody makes a stupid comment

502
00:25:26,600 --> 00:25:29,520
Speaker 1: or asks an ignorant question, I'm going to give them

503
00:25:29,520 --> 00:25:31,280
Speaker 1: grace and be polite and I'm going to answer it

504
00:25:31,359 --> 00:25:34,679
Speaker 1: and I'm going to educate them. And that feels empowering.

505
00:25:34,760 --> 00:25:36,879
Speaker 1: Instead of feeling like a victim to my circumstance and

506
00:25:36,960 --> 00:25:40,119
Speaker 1: like nobody gets me in society doesn't understand and doesn't

507
00:25:40,119 --> 00:25:42,440
Speaker 1: care to, I'm going to turn my mindset around and

508
00:25:42,440 --> 00:25:44,240
Speaker 1: be like, well, I have the ability to help change

509
00:25:44,240 --> 00:25:47,399
Speaker 1: my own circumstance. And so I started doing that and

510
00:25:47,440 --> 00:25:53,000
Speaker 1: I started getting really intentional about my health mentally, physically, spiritually.

511
00:25:53,080 --> 00:25:55,400
Speaker 1: I started getting That's when I started getting into yoga

512
00:25:55,480 --> 00:25:58,280
Speaker 1: and finding new ways to move my body. I started

513
00:25:58,840 --> 00:26:03,439
Speaker 1: exploring spirituality, I started getting really into like health and

514
00:26:03,480 --> 00:26:06,960
Speaker 1: wellness practices, eating food that actually fueled my mental and

515
00:26:06,960 --> 00:26:10,320
Speaker 1: physical well being, and all of that, over many years,

516
00:26:10,400 --> 00:26:16,800
Speaker 1: combined to help me rebuild and find a new direction

517
00:26:17,160 --> 00:26:18,359
Speaker 1: that felt worth living for.

518
00:26:18,680 --> 00:26:20,640
Speaker 2: Yeah, and I know you've talked a lot about positive

519
00:26:20,680 --> 00:26:22,280
Speaker 2: affirmations too during that time.

520
00:26:22,480 --> 00:26:24,679
Speaker 3: How did positive affirmations help you?

521
00:26:25,000 --> 00:26:27,199
Speaker 1: So when I was sixteen, I read Louise Hey, you

522
00:26:27,200 --> 00:26:31,440
Speaker 1: can heal your life, and it completely changed the way

523
00:26:31,480 --> 00:26:36,199
Speaker 1: I spoke to myself. And I didn't have to believe it.

524
00:26:36,280 --> 00:26:38,560
Speaker 1: I just had to say it. So instead of like

525
00:26:38,600 --> 00:26:42,000
Speaker 1: telling myself like I can't do that, I'm useless, this sucks,

526
00:26:42,040 --> 00:26:46,959
Speaker 1: it was just like I can, I will telling myself

527
00:26:46,960 --> 00:26:49,520
Speaker 1: every single day, you're smart, you're beautiful, You're strong, you

528
00:26:49,600 --> 00:26:51,919
Speaker 1: deserve to be happy, you deserve to be healthy, you

529
00:26:52,000 --> 00:26:56,160
Speaker 1: deserve to find success and love and friendship. Telling myself

530
00:26:56,160 --> 00:26:57,960
Speaker 1: that regardless of if I believed it or not, and

531
00:26:58,000 --> 00:27:01,600
Speaker 1: eventually telling myself that every single day. It just became

532
00:27:01,720 --> 00:27:02,359
Speaker 1: second nature.

533
00:27:02,600 --> 00:27:04,520
Speaker 2: And I think one of the things that I always

534
00:27:04,680 --> 00:27:07,720
Speaker 2: have loved about your YouTube. And you know, I discovered

535
00:27:07,720 --> 00:27:09,639
Speaker 2: your channel when I was in college, so I was

536
00:27:09,680 --> 00:27:13,560
Speaker 2: you know, in my late teens early twenties. And what

537
00:27:13,640 --> 00:27:18,040
Speaker 2: I always loved about it was you didn't just talk about, oh,

538
00:27:18,080 --> 00:27:19,719
Speaker 2: I'm blind, these are my limitations.

539
00:27:19,720 --> 00:27:21,439
Speaker 3: This is what I ken and can't do like you know.

540
00:27:21,480 --> 00:27:24,440
Speaker 2: And of course that was like an underlying theme because

541
00:27:24,680 --> 00:27:26,600
Speaker 2: you would talk about it in specific ways, whether you're

542
00:27:26,600 --> 00:27:30,119
Speaker 2: reorganizing your your whether you're reorganizing your makeup or you know,

543
00:27:30,200 --> 00:27:31,879
Speaker 2: doing your makeup and showing how you put it on

544
00:27:32,000 --> 00:27:33,720
Speaker 2: by touch, right, what we were talking about before we

545
00:27:33,760 --> 00:27:36,919
Speaker 2: started filming. But a lot of your videos were just

546
00:27:37,200 --> 00:27:39,520
Speaker 2: you know, you vlogging and being a girl and loving

547
00:27:39,520 --> 00:27:42,960
Speaker 2: fashion and clothes and putting on makeup and talking about

548
00:27:43,000 --> 00:27:45,720
Speaker 2: beauty and wellness. And I always thought that was really

549
00:27:45,720 --> 00:27:50,240
Speaker 2: cool too, because it just normalizes your situation. And I

550
00:27:50,240 --> 00:27:53,040
Speaker 2: think that is the most important thing with disability, is

551
00:27:53,119 --> 00:27:56,840
Speaker 2: just normalizing it in society. And I know you've talked

552
00:27:56,880 --> 00:27:59,560
Speaker 2: a lot about the word ablest. Can you explain to

553
00:27:59,680 --> 00:28:00,760
Speaker 2: us what that means.

554
00:28:01,160 --> 00:28:04,280
Speaker 1: Yeah, So, ableism is like what racism is to the

555
00:28:04,280 --> 00:28:08,040
Speaker 1: bipop community, or what a homophobia is to the gay community.

556
00:28:08,119 --> 00:28:12,880
Speaker 1: It is when people intentionally or unintentionally make a comment

557
00:28:13,359 --> 00:28:19,520
Speaker 1: or do something that you know, is discriminatory or hurtful

558
00:28:19,640 --> 00:28:24,320
Speaker 1: to disabled people. So an example of like a microaggression,

559
00:28:24,840 --> 00:28:28,560
Speaker 1: a microableism would be asking my partner what does she

560
00:28:28,680 --> 00:28:33,240
Speaker 1: want when I'm sitting right there. That's like one small example.

561
00:28:33,600 --> 00:28:36,240
Speaker 1: A big example of ableism would be saying you can't

562
00:28:36,240 --> 00:28:37,960
Speaker 1: come into my restaurant with your service dog.

563
00:28:38,000 --> 00:28:40,480
Speaker 2: And you bring your service dog pretty much everywhere, right

564
00:28:40,480 --> 00:28:42,400
Speaker 2: like on planes, your service dog goes with you.

565
00:28:42,600 --> 00:28:45,600
Speaker 1: Yeap, my guide dog. If I'm there, nine times out

566
00:28:45,640 --> 00:28:47,240
Speaker 1: of ten, nine point five times out of ten, my

567
00:28:47,240 --> 00:28:47,760
Speaker 1: guy dog's there.

568
00:28:47,840 --> 00:28:48,960
Speaker 3: Yeah, shout out Elton John.

569
00:28:49,840 --> 00:28:51,200
Speaker 1: He's a beast. He's a cute twist.

570
00:28:51,360 --> 00:28:51,640
Speaker 3: Yeah.

571
00:28:51,920 --> 00:28:54,200
Speaker 2: But you know, back to your content, like when you

572
00:28:54,240 --> 00:28:57,560
Speaker 2: were originally deciding to post content, like what inspired you

573
00:28:57,720 --> 00:29:00,680
Speaker 2: to make it? Have such a rain, you know, and

574
00:29:00,720 --> 00:29:02,440
Speaker 2: not just talk about one specific thing.

575
00:29:02,840 --> 00:29:07,520
Speaker 1: Normalizing and humanizing disability was a huge goal of mine.

576
00:29:07,800 --> 00:29:12,720
Speaker 1: So it was really like part education, part normalization. I

577
00:29:12,800 --> 00:29:17,080
Speaker 1: really wanted to show people that beyond my blindness, most importantly,

578
00:29:17,120 --> 00:29:20,080
Speaker 1: I'm just I'm just a girl, Like I'm just a person.

579
00:29:20,720 --> 00:29:23,800
Speaker 1: I have the same interests and passions as you do.

580
00:29:23,880 --> 00:29:27,000
Speaker 1: I might just access them slightly differently. And if that's

581
00:29:27,000 --> 00:29:30,080
Speaker 1: true about me one blind girl on the internet. Maybe

582
00:29:30,120 --> 00:29:33,200
Speaker 1: that's true about the deaf girl in your class, and

583
00:29:33,240 --> 00:29:36,360
Speaker 1: you should give her a chance. Maybe that's true about

584
00:29:36,640 --> 00:29:40,960
Speaker 1: the wheelchair user who comes in for your job interview,

585
00:29:41,040 --> 00:29:42,800
Speaker 1: and you should give them a chance for that job.

586
00:29:44,080 --> 00:29:47,320
Speaker 1: I really think most people it's us in them. You know,

587
00:29:47,360 --> 00:29:49,560
Speaker 1: it's like they're over there and we're over here. We're

588
00:29:49,560 --> 00:29:53,560
Speaker 1: not like you, And people don't realize that the majority

589
00:29:53,600 --> 00:29:57,760
Speaker 1: of disabilities are acquired through age, accident, or illness. Majority

590
00:29:57,800 --> 00:30:01,120
Speaker 1: of disabilities are not from birth. Most of my disabled

591
00:30:01,120 --> 00:30:04,880
Speaker 1: friends became disabled later in life because of an accident,

592
00:30:05,760 --> 00:30:09,240
Speaker 1: because of an illness. And then, as I said, aging

593
00:30:09,480 --> 00:30:12,960
Speaker 1: is huge. Most people aging become disabled in some way

594
00:30:13,080 --> 00:30:15,680
Speaker 1: or another. And so it's so important to realize that

595
00:30:15,800 --> 00:30:18,240
Speaker 1: it's not us in them. We are all on the

596
00:30:18,280 --> 00:30:22,360
Speaker 1: same team, and you should care, you should want to learn,

597
00:30:22,440 --> 00:30:25,000
Speaker 1: you should get involved, because you never know when it

598
00:30:25,040 --> 00:30:26,720
Speaker 1: will be you or when it will be one of

599
00:30:26,760 --> 00:30:30,360
Speaker 1: your loved ones. So I really wanted to create that

600
00:30:30,520 --> 00:30:34,640
Speaker 1: space and create a safe space for people to learn

601
00:30:34,680 --> 00:30:36,880
Speaker 1: the things they've always wanted to know. But I've never

602
00:30:36,960 --> 00:30:39,680
Speaker 1: had access to learning because, like I said, like I

603
00:30:39,680 --> 00:30:42,080
Speaker 1: think education is the key and being able to do

604
00:30:42,120 --> 00:30:46,560
Speaker 1: that through entertainment on a free platform that anybody can access,

605
00:30:47,480 --> 00:30:49,720
Speaker 1: it felt like the space to do it. I found

606
00:30:49,800 --> 00:30:53,400
Speaker 1: YouTube in two thousand and eight after going blind after

607
00:30:53,440 --> 00:30:57,000
Speaker 1: losing all my friends, and I would watch like all

608
00:30:57,040 --> 00:31:01,000
Speaker 1: the og beauty and fashion and lifestyle girl and I

609
00:31:01,040 --> 00:31:04,480
Speaker 1: loved their content so much and it felt like friends

610
00:31:04,560 --> 00:31:07,200
Speaker 1: through a screen, which I thought was so powerful. But

611
00:31:07,320 --> 00:31:09,400
Speaker 1: the big thing missing was none of them were disabled.

612
00:31:09,640 --> 00:31:11,160
Speaker 1: So there was like that big key part of my

613
00:31:11,200 --> 00:31:14,040
Speaker 1: identity that I still didn't see, and I also didn't

614
00:31:14,040 --> 00:31:19,080
Speaker 1: see in mainstream media. So for me starting YouTube as

615
00:31:19,120 --> 00:31:21,440
Speaker 1: one of the first disabled content creators eleven and a

616
00:31:21,480 --> 00:31:25,720
Speaker 1: half years ago, it was also about bringing representation and

617
00:31:26,320 --> 00:31:29,320
Speaker 1: creating space where other people in my community, other service

618
00:31:29,320 --> 00:31:32,080
Speaker 1: dog users, other disabled people, other people with mental health

619
00:31:32,120 --> 00:31:36,200
Speaker 1: issues or who were blind, could find content that was

620
00:31:36,360 --> 00:31:40,440
Speaker 1: for them and about the life that they live. And

621
00:31:40,480 --> 00:31:43,680
Speaker 1: then non disabled people could find it and learn about

622
00:31:43,720 --> 00:31:45,479
Speaker 1: a life that they don't know anything about but might

623
00:31:45,520 --> 00:31:47,760
Speaker 1: have maybe always been curious about. So it was kind

624
00:31:47,800 --> 00:31:50,720
Speaker 1: of like double duty. And it was as important to

625
00:31:50,720 --> 00:31:53,960
Speaker 1: me to make those very poignant like this is disability

626
00:31:54,080 --> 00:31:58,960
Speaker 1: education content as it was to make totally normal content

627
00:31:59,200 --> 00:32:01,920
Speaker 1: that any other non disabled creator would be making. And

628
00:32:01,960 --> 00:32:05,360
Speaker 1: that's that balance of advocacy and normalization.

629
00:32:05,600 --> 00:32:09,240
Speaker 2: When you first started posting, and as you continued to post,

630
00:32:09,400 --> 00:32:11,760
Speaker 2: what for you was always the hardest part about putting

631
00:32:11,760 --> 00:32:12,800
Speaker 2: yourself out there online.

632
00:32:13,560 --> 00:32:16,320
Speaker 1: You know, I faced a lot, and I still do

633
00:32:16,440 --> 00:32:18,720
Speaker 1: a lot of those same misconceptions I faced in real

634
00:32:18,720 --> 00:32:23,840
Speaker 1: life when I went blind, She's faking it, And constantly

635
00:32:23,880 --> 00:32:28,760
Speaker 1: hearing that, constantly having strangers on the internet invalidate your

636
00:32:28,840 --> 00:32:33,360
Speaker 1: lived experience, invalidate one of the most traumatizing thing that's

637
00:32:33,440 --> 00:32:37,920
Speaker 1: ever happened to you is really frustrating. But instead of

638
00:32:38,000 --> 00:32:41,600
Speaker 1: letting it pull me down into a negative mindset, I

639
00:32:41,680 --> 00:32:44,520
Speaker 1: let it fuel my fire. And I think that came

640
00:32:44,560 --> 00:32:47,680
Speaker 1: from this shift that I'd experienced earlier in my healing

641
00:32:47,720 --> 00:32:50,360
Speaker 1: journey of saying, I can be a victim or I

642
00:32:50,360 --> 00:32:53,520
Speaker 1: can empower myself. I can be negative, or I can

643
00:32:53,640 --> 00:32:56,400
Speaker 1: choose positivity. I can I can look at a glass

644
00:32:56,400 --> 00:32:58,880
Speaker 1: and see it half empty at first, and then catch

645
00:32:58,880 --> 00:33:01,280
Speaker 1: myself and say, nope, flip, it's half ful. This is

646
00:33:01,280 --> 00:33:05,000
Speaker 1: what that mindset shift is. Happiness, I realized is an

647
00:33:05,040 --> 00:33:09,320
Speaker 1: active choice, and I chose to not let that like

648
00:33:09,800 --> 00:33:13,600
Speaker 1: judgment and negativity and misconceptions pull me down like I

649
00:33:13,720 --> 00:33:17,080
Speaker 1: had previously. I was like, Great, one more video I

650
00:33:17,120 --> 00:33:20,080
Speaker 1: need to make educating on why. Yes, not all blind

651
00:33:20,120 --> 00:33:23,920
Speaker 1: people have foggy gray eyes. Yes, blind people can still blink. Yes,

652
00:33:24,000 --> 00:33:26,440
Speaker 1: blind people can still move their eyes. Yes, blind people

653
00:33:26,440 --> 00:33:29,200
Speaker 1: don't all wear dark sunglasses. Yes, we don't feel faces

654
00:33:29,360 --> 00:33:32,640
Speaker 1: like trying to make all of those different videos being

655
00:33:32,640 --> 00:33:34,560
Speaker 1: like all right, I see your negative comment, I see

656
00:33:34,600 --> 00:33:38,840
Speaker 1: your ignorance fuel for my fire. That's one more person

657
00:33:38,880 --> 00:33:40,640
Speaker 1: I need to educate, and I'll do it in a video.

658
00:33:41,160 --> 00:33:42,920
Speaker 2: And I also feel like one of the comments that

659
00:33:42,960 --> 00:33:45,240
Speaker 2: you get sometimes is like, well, how can she make

660
00:33:45,280 --> 00:33:47,920
Speaker 2: such good eye contact? And it's like and you can

661
00:33:47,960 --> 00:33:49,640
Speaker 2: correct me if I'm wrong, But it's also like, being

662
00:33:49,680 --> 00:33:51,360
Speaker 2: blind doesn't mean you can't look in the direction of

663
00:33:51,440 --> 00:33:51,840
Speaker 2: the camera.

664
00:33:52,120 --> 00:33:55,280
Speaker 1: The camera is generally sitting in front of me, Like

665
00:33:55,320 --> 00:33:58,720
Speaker 1: this is what I don't understand. I'm looking forward if

666
00:33:58,760 --> 00:34:02,600
Speaker 1: the camera's there, and I'm like, okay, God, Like that

667
00:34:02,600 --> 00:34:05,800
Speaker 1: would take more effort than just looking forward at the camera.

668
00:34:05,920 --> 00:34:09,520
Speaker 1: It's so confusing to me. And then there's ways of

669
00:34:09,560 --> 00:34:13,240
Speaker 1: working around it, like previous to doing YouTube I hosted

670
00:34:13,239 --> 00:34:16,400
Speaker 1: TV shows and I would be on set and the

671
00:34:16,440 --> 00:34:20,879
Speaker 1: intro my producer like really wanted a panning shot, and

672
00:34:20,960 --> 00:34:23,400
Speaker 1: so I had to track the camera as I would

673
00:34:23,400 --> 00:34:27,759
Speaker 1: do my opening monologue every single week, and so she

674
00:34:27,800 --> 00:34:30,359
Speaker 1: would send a script over the day before. I would

675
00:34:30,400 --> 00:34:34,879
Speaker 1: have to fully memorize the entire hour of content in

676
00:34:35,040 --> 00:34:38,080
Speaker 1: like two hours because I can't use the teleprompter. And

677
00:34:38,080 --> 00:34:40,120
Speaker 1: then I would get to set. And what we did

678
00:34:40,400 --> 00:34:43,160
Speaker 1: was because I can see light, they rigged the camera

679
00:34:43,280 --> 00:34:45,560
Speaker 1: to have a little light right above the lens, and

680
00:34:45,640 --> 00:34:48,680
Speaker 1: so when the camera would move, I would just follow

681
00:34:48,719 --> 00:34:51,080
Speaker 1: and track that little tiny light that was right above

682
00:34:51,080 --> 00:34:52,640
Speaker 1: the lens, so it made it look like I was

683
00:34:52,680 --> 00:34:54,800
Speaker 1: making eye contact with the camera. So it's just about

684
00:34:54,800 --> 00:34:57,840
Speaker 1: finding like little tips and tricks and hacks that work

685
00:34:57,920 --> 00:35:01,719
Speaker 1: for you, and that worked for me, So yeah, that

686
00:35:01,920 --> 00:35:04,920
Speaker 1: there's always ways of working around things. Even if I

687
00:35:04,960 --> 00:35:07,560
Speaker 1: had no light perception, I am certain I could find

688
00:35:07,640 --> 00:35:11,200
Speaker 1: a way to do it. People are designed to be resilient.

689
00:35:11,400 --> 00:35:13,319
Speaker 1: All the time. I get comments like if I went blind,

690
00:35:13,360 --> 00:35:14,799
Speaker 1: I could never do it. If I went blind, ID

691
00:35:14,840 --> 00:35:18,160
Speaker 1: off myself, And like, I get where they're coming from,

692
00:35:18,200 --> 00:35:21,080
Speaker 1: because I did have that feeling at one point. But

693
00:35:21,360 --> 00:35:23,960
Speaker 1: I can tell you humans are so resilient. We are

694
00:35:24,000 --> 00:35:26,800
Speaker 1: designed to rebuild, We are designed to be flexible to

695
00:35:28,000 --> 00:35:31,960
Speaker 1: adapt to our new circumstances. It doesn't mean it's easy,

696
00:35:32,880 --> 00:35:35,200
Speaker 1: but once you do it like this is my normal.

697
00:35:35,520 --> 00:35:38,760
Speaker 1: To me, doing makeup by touch is just as easy

698
00:35:38,800 --> 00:35:41,399
Speaker 1: as you doing makeup in the mirror. It's what I'm

699
00:35:41,480 --> 00:35:43,200
Speaker 1: used to. I do it every single day. I don't

700
00:35:43,200 --> 00:35:48,839
Speaker 1: even notice. Where I face barriers is when things are

701
00:35:48,840 --> 00:35:52,879
Speaker 1: inaccessible and haven't been designed with everybody in mind. When

702
00:35:52,920 --> 00:35:55,320
Speaker 1: I go to the gym and the treadmill is entirely

703
00:35:55,360 --> 00:35:59,720
Speaker 1: touch screen, then yes, I feel disabled because my partner

704
00:35:59,760 --> 00:36:01,520
Speaker 1: has go and hit all the buttons and set me

705
00:36:01,600 --> 00:36:04,239
Speaker 1: up before he goes off to do his workout. But

706
00:36:04,880 --> 00:36:08,160
Speaker 1: if that had tactile buttons, or if that had a

707
00:36:08,200 --> 00:36:10,040
Speaker 1: screen reader on it that I could turn on, then

708
00:36:10,080 --> 00:36:14,440
Speaker 1: I would not feel disabled. It wouldn't feel difficult being blind,

709
00:36:14,719 --> 00:36:17,160
Speaker 1: which is why to me, I often talk about like

710
00:36:17,239 --> 00:36:21,400
Speaker 1: the cure for disability is designing accessibly. It's not curing

711
00:36:21,480 --> 00:36:25,400
Speaker 1: each individual person through medical intervention. I'm perfectly fine as

712
00:36:25,440 --> 00:36:27,839
Speaker 1: a blind person. The hardest parts of my life aren't

713
00:36:27,880 --> 00:36:30,400
Speaker 1: that I can't see the hardest parts of my life

714
00:36:30,440 --> 00:36:35,080
Speaker 1: are society's attitude and the inaccessibility I face.

715
00:36:44,800 --> 00:36:46,880
Speaker 2: What are some of the other instances that you feel

716
00:36:46,920 --> 00:36:49,359
Speaker 2: like society could like just easy changes that you think

717
00:36:49,400 --> 00:36:51,880
Speaker 2: about every single day in your daily life that you're like,

718
00:36:52,520 --> 00:36:53,759
Speaker 2: how is this not fixed? Yet?

719
00:36:54,640 --> 00:36:59,080
Speaker 1: Such a hard question because like there's so many And

720
00:36:59,200 --> 00:37:01,400
Speaker 1: here's the thing, Like I can only speak as one person.

721
00:37:01,560 --> 00:37:03,040
Speaker 1: I want to make it so clear that like I

722
00:37:03,040 --> 00:37:06,880
Speaker 1: don't speak for a whole community. I speak for myself,

723
00:37:06,960 --> 00:37:13,040
Speaker 1: my lived experience. What I really hope the non disabled

724
00:37:13,080 --> 00:37:17,160
Speaker 1: people in the room could do is learn, like seek

725
00:37:17,239 --> 00:37:23,120
Speaker 1: out the education. Don't remain willfully ignorant. There's no reason to. Now.

726
00:37:23,440 --> 00:37:26,080
Speaker 1: There are so many disabled content creators with different lived

727
00:37:26,080 --> 00:37:31,920
Speaker 1: experiences making free, entertaining content that you can learn from,

728
00:37:32,280 --> 00:37:35,560
Speaker 1: and it's so important that you do so because then

729
00:37:35,920 --> 00:37:41,200
Speaker 1: you don't make those awkward microableism mistakes. And when you're

730
00:37:41,239 --> 00:37:44,239
Speaker 1: in positions of power, like in the hiring room, or

731
00:37:44,480 --> 00:37:48,960
Speaker 1: when you're in the design room or you're writing those commercials,

732
00:37:49,239 --> 00:37:52,279
Speaker 1: you're making sure that you're doing it with intention and

733
00:37:52,280 --> 00:37:54,279
Speaker 1: that you're doing it right. At the end of the day,

734
00:37:54,960 --> 00:37:57,319
Speaker 1: disabled people also need to be in the rooms. That's

735
00:37:57,320 --> 00:38:00,479
Speaker 1: a huge thing. Like if you hire inclusively, you will

736
00:38:00,480 --> 00:38:03,800
Speaker 1: design better. If you hire inclusively, you will market better.

737
00:38:04,040 --> 00:38:06,560
Speaker 1: And right now companies are missing out on a huge

738
00:38:06,560 --> 00:38:09,839
Speaker 1: market because they just forget that we are consumers as

739
00:38:09,920 --> 00:38:11,080
Speaker 1: much as anybody else.

740
00:38:11,320 --> 00:38:13,200
Speaker 2: And I think also, you know, we talked a little

741
00:38:13,200 --> 00:38:16,720
Speaker 2: bit about what was the hardest part about you creating

742
00:38:16,719 --> 00:38:19,120
Speaker 2: content online when you first started out, But I also

743
00:38:19,120 --> 00:38:21,120
Speaker 2: feel like, based on what you're saying, and like obviously

744
00:38:21,160 --> 00:38:23,760
Speaker 2: just knowing from experience, the internet can be both negative,

745
00:38:23,960 --> 00:38:26,759
Speaker 2: but it also can be so positive and it is

746
00:38:26,840 --> 00:38:29,680
Speaker 2: so cool and inspiring knowing that you were one of

747
00:38:29,719 --> 00:38:33,839
Speaker 2: the first blind creators on YouTube, you know, and I'm

748
00:38:33,840 --> 00:38:36,719
Speaker 2: sure you got so much positive feedback and it probably

749
00:38:37,200 --> 00:38:39,520
Speaker 2: gave you a sense of community that you didn't feel in,

750
00:38:39,600 --> 00:38:41,440
Speaker 2: you know, in I don't know if you grew up

751
00:38:41,480 --> 00:38:43,359
Speaker 2: in a small town, but like in a small town

752
00:38:43,440 --> 00:38:45,600
Speaker 2: or a city where you don't see yourself as represented.

753
00:38:45,640 --> 00:38:48,040
Speaker 2: So you know, what was that like for you finally

754
00:38:48,120 --> 00:38:51,520
Speaker 2: at a large scale, connecting with so many people that

755
00:38:52,239 --> 00:38:55,239
Speaker 2: have experienced disability and maybe a similar disability to you.

756
00:38:55,440 --> 00:38:59,680
Speaker 1: The thing about representation with disability and why it is

757
00:38:59,680 --> 00:39:03,440
Speaker 1: so so important is that it's not just that we

758
00:39:03,480 --> 00:39:07,279
Speaker 1: don't see ourselves in media, it's that we don't see

759
00:39:07,280 --> 00:39:12,759
Speaker 1: ourselves period. We don't see ourselves in toy design, we

760
00:39:12,840 --> 00:39:18,360
Speaker 1: don't see ourselves in the accessibility of clothing or products,

761
00:39:18,760 --> 00:39:22,040
Speaker 1: in the accessibility of physical environments. We don't see ourselves

762
00:39:22,400 --> 00:39:25,040
Speaker 1: in real life like we don't. Growing up, I was

763
00:39:25,080 --> 00:39:26,920
Speaker 1: the only blind student at my school. I would go

764
00:39:26,920 --> 00:39:28,719
Speaker 1: to the shopping mall on the weekends, I was the

765
00:39:28,719 --> 00:39:30,920
Speaker 1: only blind person. I would go out for dinner with

766
00:39:30,920 --> 00:39:34,960
Speaker 1: my family, only blind person, Like I never saw myself ever,

767
00:39:35,760 --> 00:39:41,080
Speaker 1: And how lonely and isolating that feels. Is such a

768
00:39:41,160 --> 00:39:44,319
Speaker 1: huge way to bear at such a young age. And

769
00:39:44,360 --> 00:39:47,080
Speaker 1: that's the case for many disabled people because disability is

770
00:39:47,120 --> 00:39:49,799
Speaker 1: such a wide spectrum. Even now, I have so many

771
00:39:49,800 --> 00:39:52,719
Speaker 1: blind friends. We all have different lived experiences, we all

772
00:39:52,760 --> 00:39:56,840
Speaker 1: have different levels of vision loss, experiences of how or

773
00:39:56,880 --> 00:39:59,600
Speaker 1: when or if we went blind, or we're born blind. Like,

774
00:39:59,640 --> 00:40:02,400
Speaker 1: it's so so diverse, and if you're going to have

775
00:40:02,440 --> 00:40:05,640
Speaker 1: connections with blind people, you typically need to like really

776
00:40:05,680 --> 00:40:08,719
Speaker 1: seek it out. And having access to that depends on

777
00:40:08,840 --> 00:40:11,359
Speaker 1: where you live, as you said, like if you live

778
00:40:11,360 --> 00:40:14,880
Speaker 1: in a small or even rural community, access to in

779
00:40:14,960 --> 00:40:18,000
Speaker 1: real life community of blind people is going to be

780
00:40:18,040 --> 00:40:20,160
Speaker 1: next to nothing, versus maybe if you live in a

781
00:40:20,160 --> 00:40:23,200
Speaker 1: city like la or New York or Toronto, where there's

782
00:40:23,239 --> 00:40:26,279
Speaker 1: bigger community that you could find if you're intentional about it.

783
00:40:26,719 --> 00:40:31,319
Speaker 1: And so when I started making videos, it was incredible

784
00:40:31,360 --> 00:40:35,960
Speaker 1: to see so many people who said, like, I'm in

785
00:40:36,000 --> 00:40:38,880
Speaker 1: my late twenties or my thirties or even my fifties,

786
00:40:39,239 --> 00:40:42,120
Speaker 1: and I've never met another blind person in my life.

787
00:40:42,800 --> 00:40:47,760
Speaker 1: I have never felt so seen. That for me felt

788
00:40:47,800 --> 00:40:50,800
Speaker 1: so emotional because I did grow up in the suburbs

789
00:40:50,840 --> 00:40:54,320
Speaker 1: of Toronto. I did grow up doing activities for the blind.

790
00:40:55,239 --> 00:40:57,360
Speaker 1: I did briefly go to a school for the blind.

791
00:40:57,640 --> 00:41:01,520
Speaker 1: My family really immersed myself in the community, and we

792
00:41:01,520 --> 00:41:03,239
Speaker 1: were lucky that we had access to do that. And

793
00:41:03,280 --> 00:41:05,680
Speaker 1: so for me, I did grow up around plying people

794
00:41:05,719 --> 00:41:07,799
Speaker 1: my whole life in one way or another, even if

795
00:41:07,840 --> 00:41:10,560
Speaker 1: not on a daily basis. But to know that some

796
00:41:10,640 --> 00:41:14,839
Speaker 1: people in my community have literally gone forever never seeing

797
00:41:14,840 --> 00:41:20,800
Speaker 1: themselves represented anywhere, including real life ever, was so powerful

798
00:41:20,840 --> 00:41:22,240
Speaker 1: to know that I could be a part of bringing

799
00:41:22,239 --> 00:41:22,799
Speaker 1: that for them.

800
00:41:23,600 --> 00:41:26,520
Speaker 2: Yeah, I mean, everybody needs to see representation online in

801
00:41:26,560 --> 00:41:28,760
Speaker 2: whatever way it is. And I feel like the hardest

802
00:41:28,760 --> 00:41:31,839
Speaker 2: part about your journey too, and what everybody lives with,

803
00:41:31,960 --> 00:41:34,080
Speaker 2: you know, regardless of having a disability or not, is

804
00:41:34,120 --> 00:41:36,880
Speaker 2: this idea of living with uncertainty, and yours was in

805
00:41:36,880 --> 00:41:38,960
Speaker 2: such a big way because you're born with this illness

806
00:41:39,160 --> 00:41:41,520
Speaker 2: and you know that with time it's almost like a

807
00:41:41,560 --> 00:41:43,279
Speaker 2: ticking time bomb and then you're going.

808
00:41:43,239 --> 00:41:43,959
Speaker 3: To lose your sight.

809
00:41:44,120 --> 00:41:47,359
Speaker 2: Right, So what was it like for you growing up

810
00:41:47,360 --> 00:41:50,600
Speaker 2: in those early years living with that level of uncertainty.

811
00:41:50,840 --> 00:41:53,919
Speaker 1: My parents were always honest with me from the time

812
00:41:53,960 --> 00:41:57,680
Speaker 1: of my diagnosis, and of course I knew something was

813
00:41:57,719 --> 00:42:00,319
Speaker 1: going on. I've been seeing specialists since I was six

814
00:42:00,360 --> 00:42:03,799
Speaker 1: months old. I went to a children's hospital and was

815
00:42:03,840 --> 00:42:08,319
Speaker 1: always getting like exploratory tests and some surgeries, and I

816
00:42:08,400 --> 00:42:10,360
Speaker 1: knew that other kids weren't doing that. I knew that

817
00:42:10,560 --> 00:42:13,640
Speaker 1: was different. And then the older I got, the more

818
00:42:13,680 --> 00:42:16,600
Speaker 1: I knew I was different. As I started to learn Braille,

819
00:42:16,640 --> 00:42:18,080
Speaker 1: and I went home one day and I said, what's

820
00:42:18,080 --> 00:42:22,319
Speaker 1: wrong with me? Like why is this all happening? And

821
00:42:22,400 --> 00:42:24,440
Speaker 1: I was five years old, and my parents told me.

822
00:42:25,200 --> 00:42:26,920
Speaker 1: They just told me as it was, and I can

823
00:42:26,960 --> 00:42:29,080
Speaker 1: remember them teaching me how to say the word so

824
00:42:29,120 --> 00:42:31,200
Speaker 1: that if anybody asked me, I would know how to

825
00:42:31,239 --> 00:42:35,120
Speaker 1: say it. And Red Nights Pigmentosa, I would run around

826
00:42:35,239 --> 00:42:36,840
Speaker 1: like pig man, pig man. I thought it was like

827
00:42:36,840 --> 00:42:40,040
Speaker 1: the funniest thing that it has pig man in it.

828
00:42:40,120 --> 00:42:41,719
Speaker 1: And they got me like a little stuffed pig and

829
00:42:42,000 --> 00:42:43,680
Speaker 1: like it was you know, they just made it like

830
00:42:43,719 --> 00:42:46,480
Speaker 1: a normal thing. And I'm really grateful that they did

831
00:42:46,560 --> 00:42:49,480
Speaker 1: normalize that for me, and then it was something they

832
00:42:49,680 --> 00:42:53,000
Speaker 1: always told me about. I think there is so much

833
00:42:53,080 --> 00:42:56,640
Speaker 1: potential risk and harm in hiding a diagnosis from your child.

834
00:42:57,000 --> 00:43:00,680
Speaker 1: It robs them of community, it robs them of self standing.

835
00:43:01,040 --> 00:43:03,400
Speaker 1: Kids are way more perceptive than you may give them

836
00:43:03,440 --> 00:43:06,200
Speaker 1: credit for. This is a conversation that I frequently have

837
00:43:06,280 --> 00:43:09,600
Speaker 1: had with my ophthalmologist who sees all the time in

838
00:43:09,640 --> 00:43:13,200
Speaker 1: her practice parents wanting to not tell the child and

839
00:43:13,280 --> 00:43:16,680
Speaker 1: asking her to not tell the child. And these are

840
00:43:16,680 --> 00:43:19,640
Speaker 1: like eight, nine, ten, eleven year olds, and the future

841
00:43:19,680 --> 00:43:23,319
Speaker 1: is inevitable they will go blind. How shocking is it

842
00:43:23,400 --> 00:43:27,400
Speaker 1: if you give them no heads up? And the reality

843
00:43:27,520 --> 00:43:33,200
Speaker 1: is these kids can tell something's different. They know, and

844
00:43:33,280 --> 00:43:36,839
Speaker 1: so to hide that from them is I think detrimental,

845
00:43:37,800 --> 00:43:41,640
Speaker 1: and as does my ophthalmologist, and she's always like asking me, like,

846
00:43:41,680 --> 00:43:45,600
Speaker 1: how do I communicate this to these parents, like that

847
00:43:45,920 --> 00:43:49,120
Speaker 1: they will thrive if they are empowered with the knowledge.

848
00:43:49,440 --> 00:43:53,000
Speaker 1: And I think a lot of people fear diagnosis. The

849
00:43:53,040 --> 00:43:56,520
Speaker 1: word doesn't change anything. The symptoms are still the same.

850
00:43:57,600 --> 00:44:00,239
Speaker 1: The word actually gives you power because all of a

851
00:44:00,280 --> 00:44:03,400
Speaker 1: sudden if that if you find out you're autistic or

852
00:44:03,440 --> 00:44:09,360
Speaker 1: have ADHD or hearing loss or whatever it might be. Knowing, Okay,

853
00:44:09,400 --> 00:44:12,680
Speaker 1: there's a word for this thing that I'm feeling, and

854
00:44:12,719 --> 00:44:16,960
Speaker 1: I can find people who also have that word, and

855
00:44:17,040 --> 00:44:19,880
Speaker 1: now I have community. I have people who understand me.

856
00:44:20,160 --> 00:44:23,000
Speaker 1: I can understand myself and that I am not broken,

857
00:44:23,040 --> 00:44:25,799
Speaker 1: I'm not weird. There's nothing wrong with me. I just

858
00:44:25,840 --> 00:44:29,000
Speaker 1: have this thing, and what I'm experiencing is totally normal.

859
00:44:29,080 --> 00:44:32,160
Speaker 1: Given I have that thing, and that is power.

860
00:44:32,400 --> 00:44:34,520
Speaker 3: It would be worse to not know what you were

861
00:44:34,560 --> 00:44:35,000
Speaker 3: dealing with.

862
00:44:35,040 --> 00:44:37,400
Speaker 2: And if it was like this unusual thing that nobody's

863
00:44:37,440 --> 00:44:40,000
Speaker 2: ever had before and the doctors can't figure it out,

864
00:44:40,040 --> 00:44:41,680
Speaker 2: like that is really challenging.

865
00:44:41,840 --> 00:44:45,839
Speaker 1: And when you hide it, it makes it a bad thing, right,

866
00:44:45,960 --> 00:44:50,239
Speaker 1: Like when you don't tell your child. You're making it

867
00:44:50,320 --> 00:44:54,320
Speaker 1: a negative, bad, taboo thing, and it's not. My blindness

868
00:44:54,360 --> 00:44:56,239
Speaker 1: isn't a negative, bad thing about me. It's a part

869
00:44:56,280 --> 00:45:00,920
Speaker 1: of what makes Molly Molly. And there's nothing negative about people.

870
00:45:01,000 --> 00:45:03,120
Speaker 1: Often I joke like blindness is like the B word.

871
00:45:03,239 --> 00:45:05,080
Speaker 1: They don't want to say it. The amount of people

872
00:45:05,120 --> 00:45:07,680
Speaker 1: that tiptoe around the word blind in front of me,

873
00:45:08,360 --> 00:45:10,440
Speaker 1: and I'm like, girl, I know I'm blind, Like I

874
00:45:10,520 --> 00:45:12,200
Speaker 1: use a guide dog and I read Braille, I know

875
00:45:12,280 --> 00:45:15,720
Speaker 1: I'm blind. You're not the one telling me. People tiptoe

876
00:45:15,719 --> 00:45:18,320
Speaker 1: around the word disability and find all these like stupid

877
00:45:18,360 --> 00:45:21,799
Speaker 1: ways to say it, like differently abled, handy, capable, and

878
00:45:21,840 --> 00:45:24,759
Speaker 1: it's like, no, I'm not differently abled. I'm disabled. And

879
00:45:24,800 --> 00:45:27,759
Speaker 1: there's literally nothing wrong with that. It's not a dirty word,

880
00:45:27,800 --> 00:45:30,360
Speaker 1: it's not a bad thing. It's a part of my identity.

881
00:45:30,360 --> 00:45:32,920
Speaker 1: It's a part of an identity that in many ways

882
00:45:33,120 --> 00:45:36,439
Speaker 1: I'm proud of. I embraced. It gives me community. And

883
00:45:36,680 --> 00:45:39,920
Speaker 1: when we ignore the words, when we tiptoe around it,

884
00:45:39,960 --> 00:45:42,160
Speaker 1: when we pretend the diagnosis isn't happening, and we shove

885
00:45:42,160 --> 00:45:44,680
Speaker 1: it in a closet and close the door, were intentionally

886
00:45:44,800 --> 00:45:50,279
Speaker 1: or unintentionally giving it negativity. We are assigning negativity and

887
00:45:50,320 --> 00:45:54,800
Speaker 1: taboo and badness to it, and so it's so important

888
00:45:55,080 --> 00:45:57,239
Speaker 1: to dispel that and say there's nothing bad about this.

889
00:45:57,360 --> 00:46:00,319
Speaker 1: It's reality. It's as much normal as having blonde hair

890
00:46:00,680 --> 00:46:03,600
Speaker 1: or brown eyes or being short. It's just a part

891
00:46:03,640 --> 00:46:03,920
Speaker 1: of life.

892
00:46:03,960 --> 00:46:05,480
Speaker 2: Yeah, And I think it is so important to have

893
00:46:05,520 --> 00:46:08,120
Speaker 2: people like yourself saying that because it.

894
00:46:08,080 --> 00:46:10,680
Speaker 3: Is hard, right, It's like you don't like as like myself.

895
00:46:10,719 --> 00:46:12,200
Speaker 2: I'm like, I'm such a people pleaser, Like I don't

896
00:46:12,200 --> 00:46:13,520
Speaker 2: want to say the wrong thing, Like I don't want

897
00:46:13,520 --> 00:46:15,520
Speaker 2: to upset somebody, you know, just because I don't know.

898
00:46:15,600 --> 00:46:17,120
Speaker 2: But at the same time, like I like that you

899
00:46:17,160 --> 00:46:19,000
Speaker 2: said you like to educate people, So even if they

900
00:46:19,080 --> 00:46:21,360
Speaker 2: say something that like slightly triggers you, because you're like,

901
00:46:21,400 --> 00:46:23,160
Speaker 2: well you should know that, it is nice to have

902
00:46:23,200 --> 00:46:26,799
Speaker 2: you explain it, you know, because we all can use like.

903
00:46:26,880 --> 00:46:30,760
Speaker 3: A little bit of teaching a lot exactly exactly.

904
00:46:30,800 --> 00:46:32,680
Speaker 1: And that's what it is, Like, that's why I do

905
00:46:32,719 --> 00:46:35,280
Speaker 1: what I do because I realized people don't have access

906
00:46:35,320 --> 00:46:39,400
Speaker 1: to learn this. And because we had this kind of

907
00:46:40,040 --> 00:46:45,920
Speaker 1: society that essentially ignored and avoided disability, people grew up

908
00:46:45,960 --> 00:46:48,440
Speaker 1: not knowing, and now I want to give them that

909
00:46:48,480 --> 00:46:50,600
Speaker 1: safe space to be like, hey, safe space, like let's

910
00:46:50,600 --> 00:46:54,120
Speaker 1: talk about these things. And I want people to feel

911
00:46:54,120 --> 00:46:58,960
Speaker 1: empowered to reach out and to you know, talk to

912
00:46:59,040 --> 00:47:01,080
Speaker 1: us like I don't. I don't want to be ignored.

913
00:47:01,920 --> 00:47:05,759
Speaker 1: I want to be integrated into society. To me, inclusion

914
00:47:06,040 --> 00:47:11,120
Speaker 1: isn't giving disabled people a table. It's just having us

915
00:47:11,200 --> 00:47:15,879
Speaker 1: at your table. It's actually just having us involved. Inclusion

916
00:47:16,000 --> 00:47:20,319
Speaker 1: isn't having a disability panel at a conference. It's having

917
00:47:20,320 --> 00:47:25,280
Speaker 1: disabled people on the DEI panel, which for so long

918
00:47:25,640 --> 00:47:29,080
Speaker 1: we were completely left out of those conversations. And that's

919
00:47:29,120 --> 00:47:31,440
Speaker 1: what I'm advocating for. I don't want a special thing.

920
00:47:32,120 --> 00:47:34,799
Speaker 1: I want equal access to your thing, and sometimes that

921
00:47:34,880 --> 00:47:36,320
Speaker 1: just means I need accommodations.

922
00:47:36,520 --> 00:47:38,200
Speaker 2: And You've been able to do so much good with

923
00:47:38,239 --> 00:47:40,160
Speaker 2: your platform, and I'm just so excited to see what

924
00:47:40,200 --> 00:47:41,239
Speaker 2: you continue to do.

925
00:47:41,280 --> 00:47:42,600
Speaker 3: I would love to see you come out with like

926
00:47:42,800 --> 00:47:44,720
Speaker 3: clothing brands. Have you done a clothing brand before?

927
00:47:45,000 --> 00:47:47,600
Speaker 1: I did a lot of merch, like classic old school

928
00:47:47,640 --> 00:47:50,800
Speaker 1: YouTuber merch, which I loved doing. I loved designing my merch.

929
00:47:51,160 --> 00:47:52,840
Speaker 1: It was really fun. I would have a lot of

930
00:47:52,880 --> 00:47:55,879
Speaker 1: like tactile braille and like really fun silly things which

931
00:47:55,880 --> 00:47:57,720
Speaker 1: I really enjoyed. But I haven't done that in many years,

932
00:47:58,080 --> 00:47:59,879
Speaker 1: you know, if the right opportunity strug.

933
00:48:01,080 --> 00:48:02,920
Speaker 2: I just saw one of your last videos though, and

934
00:48:03,000 --> 00:48:06,160
Speaker 2: I feel like you might have been teasing something, right.

935
00:48:06,239 --> 00:48:09,080
Speaker 2: You were like trying on was it bras like different

936
00:48:09,080 --> 00:48:10,880
Speaker 2: bra tops or something or tank tops? I?

937
00:48:11,160 --> 00:48:13,600
Speaker 1: Yes, I was trying I'm a bra hater, Okay, So

938
00:48:13,680 --> 00:48:16,600
Speaker 1: I was trying on like bra free brands, like brands

939
00:48:16,600 --> 00:48:19,640
Speaker 1: who claim to make clothing that you can wear without

940
00:48:19,640 --> 00:48:21,520
Speaker 1: a bra. So I was like giving it a go,

941
00:48:21,760 --> 00:48:22,839
Speaker 1: seeing what it was like.

942
00:48:22,920 --> 00:48:24,560
Speaker 3: Okay, got it. I was like, is she teasing something?

943
00:48:24,600 --> 00:48:26,000
Speaker 1: I don't know? No, I wish I was. Okay, I

944
00:48:26,080 --> 00:48:26,879
Speaker 1: wish I was. All right.

945
00:48:26,920 --> 00:48:30,120
Speaker 2: Well, what I was getting to too is you recently

946
00:48:30,120 --> 00:48:32,399
Speaker 2: came out with a new book, Unseen Guys twenty twenty

947
00:48:32,440 --> 00:48:36,279
Speaker 2: five just launched, and the book is called Unseen How

948
00:48:36,280 --> 00:48:38,680
Speaker 2: I Lost my Vision but Found My Voice. Can you

949
00:48:38,719 --> 00:48:40,080
Speaker 2: talk to us a little bit about your book and

950
00:48:40,080 --> 00:48:40,759
Speaker 2: what inspired it?

951
00:48:40,880 --> 00:48:43,279
Speaker 1: Yeah, So it's it's a memoir. I won't say it's

952
00:48:43,320 --> 00:48:46,359
Speaker 1: my entire life story. It's the stories I felt were

953
00:48:46,400 --> 00:48:48,520
Speaker 1: important to tell for the message I wanted to tell

954
00:48:48,560 --> 00:48:52,080
Speaker 1: with this book, which is really a conversation around themes

955
00:48:52,239 --> 00:48:56,080
Speaker 1: of representation, universal design, a lot of the stuff we've

956
00:48:56,120 --> 00:49:00,160
Speaker 1: been talking about today. And it's been really incredible to

957
00:49:00,880 --> 00:49:04,720
Speaker 1: see so many people in the disability community talking about

958
00:49:04,760 --> 00:49:07,440
Speaker 1: like how much it resonated with them and how validating

959
00:49:07,480 --> 00:49:10,120
Speaker 1: it was for them and their own life story. I'm

960
00:49:10,160 --> 00:49:13,520
Speaker 1: hoping more non disabled people will also choose to pick

961
00:49:13,520 --> 00:49:16,480
Speaker 1: the book up because it is a learning moment and

962
00:49:16,560 --> 00:49:19,560
Speaker 1: I like to think in a fun and entertaining, interesting way.

963
00:49:20,520 --> 00:49:25,279
Speaker 1: It's very my voice, Okay, Like it's super sassy. There's

964
00:49:25,320 --> 00:49:27,600
Speaker 1: a lot of like random side notes, and like it's

965
00:49:27,640 --> 00:49:32,000
Speaker 1: like really dry humor. So if you don't get sarcasm,

966
00:49:32,120 --> 00:49:34,799
Speaker 1: highly recommend the audiobooks so you can like hear the

967
00:49:34,840 --> 00:49:40,040
Speaker 1: tone shift. But I read the audiobook. Yeah, it's it's

968
00:49:40,120 --> 00:49:43,879
Speaker 1: kind of just about my journey from my first job

969
00:49:43,920 --> 00:49:46,719
Speaker 1: at fifteen to building my own business and moving to

970
00:49:46,880 --> 00:49:50,719
Speaker 1: LA and all the crazy Hollywood antics of trying to

971
00:49:50,719 --> 00:49:53,239
Speaker 1: make it as a blind person in the entertainment industry

972
00:49:54,000 --> 00:49:58,319
Speaker 1: and the ways in which kind of society's actions have

973
00:49:59,080 --> 00:50:00,560
Speaker 1: harmed or made my life harder.

974
00:50:00,680 --> 00:50:02,200
Speaker 3: And we talked about this during The Runner.

975
00:50:02,239 --> 00:50:04,799
Speaker 2: You mentioned this on the Run, but you had been

976
00:50:04,800 --> 00:50:07,319
Speaker 2: getting requests to write a memoir for a while and

977
00:50:07,480 --> 00:50:09,759
Speaker 2: about two years ago, right you finally were like, I'm

978
00:50:09,760 --> 00:50:11,560
Speaker 2: going to take on this journey and do it, write

979
00:50:11,560 --> 00:50:14,880
Speaker 2: and put the pen to paper. Why did it finally

980
00:50:14,880 --> 00:50:15,799
Speaker 2: feel like the right time.

981
00:50:15,880 --> 00:50:18,160
Speaker 1: It's really funny going through all my twenties, people being like,

982
00:50:18,160 --> 00:50:19,600
Speaker 1: you need to write a memoir, and I was like,

983
00:50:19,600 --> 00:50:21,520
Speaker 1: I'm in my twenties, Like I can't write a whole

984
00:50:21,600 --> 00:50:24,640
Speaker 1: life story. And I even felt that in my late

985
00:50:24,640 --> 00:50:27,799
Speaker 1: twenties going into writing this book and turning thirty, you know,

986
00:50:27,840 --> 00:50:30,000
Speaker 1: you reach that end of the decade. And I looked back.

987
00:50:30,040 --> 00:50:32,600
Speaker 1: I started my YouTube channel at twenty, so I was like,

988
00:50:32,640 --> 00:50:34,720
Speaker 1: what have I accomplished in my twenties? And I was like, Okay,

989
00:50:34,920 --> 00:50:37,279
Speaker 1: I'm really proud of everything I've done. So what do

990
00:50:37,320 --> 00:50:39,040
Speaker 1: I want to look back at forty and say I did?

991
00:50:39,320 --> 00:50:41,560
Speaker 1: And I knew that to achieve what I wanted to

992
00:50:42,000 --> 00:50:43,600
Speaker 1: I needed to write the book, but I was still like,

993
00:50:43,640 --> 00:50:45,840
Speaker 1: I can't write my whole life story. And then I

994
00:50:45,880 --> 00:50:48,799
Speaker 1: met my incredible literary agent, Courtney, and she was like,

995
00:50:48,840 --> 00:50:50,360
Speaker 1: you don't have to. You don't have to write your

996
00:50:50,400 --> 00:50:52,320
Speaker 1: whole life story. A memoir doesn't have to be everything.

997
00:50:52,960 --> 00:50:54,680
Speaker 1: It can just be like whatever you need to tell

998
00:50:54,719 --> 00:50:59,480
Speaker 1: for this. And so I wrote it, and I honestly

999
00:50:59,480 --> 00:51:01,480
Speaker 1: didn't even know necessarily what it was going to be,

1000
00:51:02,360 --> 00:51:04,320
Speaker 1: what it was going to become, but it became the

1001
00:51:04,320 --> 00:51:08,279
Speaker 1: book it needed to be. I think other themes, really

1002
00:51:08,400 --> 00:51:12,359
Speaker 1: universal themes, are like the theme of duality, that good

1003
00:51:12,360 --> 00:51:15,600
Speaker 1: and bad coexist in all of our lives and that's unavoidable.

1004
00:51:16,080 --> 00:51:18,440
Speaker 1: I used to think that I went through my midlife

1005
00:51:18,480 --> 00:51:22,080
Speaker 1: crisis early and I was like, good to go. And

1006
00:51:22,120 --> 00:51:24,680
Speaker 1: the more I continued to face challenge and have those

1007
00:51:25,800 --> 00:51:29,319
Speaker 1: those really hard periods, the more I realized that, no,

1008
00:51:29,480 --> 00:51:33,040
Speaker 1: that's actually just life. Life is a series of challenges

1009
00:51:33,160 --> 00:51:35,800
Speaker 1: and figuring out how to navigate and overcome and adapt

1010
00:51:35,880 --> 00:51:39,440
Speaker 1: and pivot and build strength and resilience every single time.

1011
00:51:39,920 --> 00:51:42,879
Speaker 1: And that is something all of us have to face

1012
00:51:42,920 --> 00:51:47,759
Speaker 1: in our lives, no matter what your circumstances. So a

1013
00:51:47,800 --> 00:51:51,680
Speaker 1: lot of duality is also throughout the book. I think

1014
00:51:51,719 --> 00:51:54,880
Speaker 1: a lot of what I talk about is shared minority

1015
00:51:54,920 --> 00:51:58,080
Speaker 1: experience as well. I've had a lot of like other minorities,

1016
00:51:58,160 --> 00:52:00,759
Speaker 1: whether it be people of color or people in the

1017
00:52:00,840 --> 00:52:04,239
Speaker 1: LGBTQ plus community say like, you know, I'm not disabled,

1018
00:52:04,280 --> 00:52:07,080
Speaker 1: but as a minority, like I felt like I have

1019
00:52:07,120 --> 00:52:10,080
Speaker 1: so many of the same feelings and that's the reality

1020
00:52:10,160 --> 00:52:13,000
Speaker 1: is like the minority experience is a shared experience. What

1021
00:52:13,000 --> 00:52:16,879
Speaker 1: we're all looking for is equity in this world. And

1022
00:52:18,280 --> 00:52:20,440
Speaker 1: the reason we need it and want it might be different,

1023
00:52:20,680 --> 00:52:23,120
Speaker 1: but we want the same goal and I really believe that,

1024
00:52:23,200 --> 00:52:26,040
Speaker 1: like coming together, we are so much stronger.

1025
00:52:35,719 --> 00:52:39,160
Speaker 2: What was something that you left out of the book

1026
00:52:39,680 --> 00:52:41,600
Speaker 2: that you're still itching to talk about.

1027
00:52:41,760 --> 00:52:44,560
Speaker 1: I plan to write a whole book on dating, romance,

1028
00:52:44,640 --> 00:52:47,200
Speaker 1: love as a blind person. So I didn't talk about

1029
00:52:47,239 --> 00:52:50,040
Speaker 1: that at all in the book because I have too

1030
00:52:50,160 --> 00:52:53,600
Speaker 1: much Like that is a whole memoir just on dating,

1031
00:52:53,640 --> 00:52:58,080
Speaker 1: love and relationships. So that is like you know in

1032
00:52:58,120 --> 00:52:59,839
Speaker 1: the back, gotta do that.

1033
00:53:00,080 --> 00:53:01,759
Speaker 2: Yeah, And you post a lot of videos on dating

1034
00:53:01,800 --> 00:53:03,560
Speaker 2: as a blind person, right, yeah.

1035
00:53:03,360 --> 00:53:05,920
Speaker 1: I do. It's definitely something I've talked about throughout my

1036
00:53:06,040 --> 00:53:09,160
Speaker 1: whole journey on the internet. I now talk about being

1037
00:53:09,200 --> 00:53:12,600
Speaker 1: in an interabled relationship. My partner is cited non disabled.

1038
00:53:13,080 --> 00:53:18,600
Speaker 1: Obviously I'm blind and we live together, we often work together,

1039
00:53:18,840 --> 00:53:23,600
Speaker 1: so kind of sharing our experiences as an introbled couple,

1040
00:53:23,680 --> 00:53:26,799
Speaker 1: which is another thing that you know needs representation. There's

1041
00:53:26,840 --> 00:53:29,400
Speaker 1: not enough talked about from that perspective.

1042
00:53:29,000 --> 00:53:31,439
Speaker 2: That would be such a good memoir, and people would

1043
00:53:31,440 --> 00:53:33,000
Speaker 2: be so interested in just seeing, Like the views on

1044
00:53:33,040 --> 00:53:34,759
Speaker 2: those videos, you can tell that people want to know

1045
00:53:34,800 --> 00:53:35,160
Speaker 2: about it.

1046
00:53:35,200 --> 00:53:37,200
Speaker 1: People love the love. Everybody loves love.

1047
00:53:37,320 --> 00:53:39,279
Speaker 3: Yeah, they love the personal life the love.

1048
00:53:39,960 --> 00:53:41,279
Speaker 2: What was the hardest thing for you to write in

1049
00:53:41,280 --> 00:53:44,360
Speaker 2: this memoir, Like, was there one chapter topic that you

1050
00:53:44,400 --> 00:53:47,120
Speaker 2: had a hard time writing and putting into words.

1051
00:53:47,600 --> 00:53:53,120
Speaker 1: I think it was realizing that people will read what

1052
00:53:53,160 --> 00:53:57,600
Speaker 1: they want. I can write it with the intention of

1053
00:53:57,600 --> 00:54:00,319
Speaker 1: how I would like people to perceive my words, but

1054
00:54:00,360 --> 00:54:03,680
Speaker 1: that doesn't mean that's how they will receive them, And

1055
00:54:03,920 --> 00:54:07,080
Speaker 1: that's a hard thing to deal with. I'm so used to,

1056
00:54:07,120 --> 00:54:11,080
Speaker 1: like over explaining myself on the Internet because I've seen

1057
00:54:11,239 --> 00:54:13,000
Speaker 1: so much of how your words get taken out of

1058
00:54:13,040 --> 00:54:16,839
Speaker 1: context or twisted and misconstrued and somebody reads something into

1059
00:54:16,880 --> 00:54:20,000
Speaker 1: it that you didn't mean at all, And so I'm

1060
00:54:20,000 --> 00:54:22,359
Speaker 1: like always over explaining myself. But with a book, I'm

1061
00:54:22,360 --> 00:54:24,440
Speaker 1: not going to do that, Like, I don't that takes

1062
00:54:24,440 --> 00:54:29,040
Speaker 1: away from the interesting literary experience, and so I didn't

1063
00:54:29,080 --> 00:54:31,799
Speaker 1: over explain myself, which was really hard for me, to

1064
00:54:31,880 --> 00:54:33,239
Speaker 1: just be like, you know what, I'm going to put

1065
00:54:33,280 --> 00:54:34,840
Speaker 1: it in a way that makes sense to me and

1066
00:54:34,920 --> 00:54:37,680
Speaker 1: hope people understand what I'm saying. And if they don't

1067
00:54:37,760 --> 00:54:41,919
Speaker 1: and they misunderstand, I can't do anything about that. Also, knowing,

1068
00:54:41,960 --> 00:54:44,799
Speaker 1: like a YouTube video I can delete, a book is

1069
00:54:44,840 --> 00:54:48,279
Speaker 1: out there forever and it is a time capsule of

1070
00:54:48,280 --> 00:54:52,359
Speaker 1: my thoughts and feelings and beliefs at that time. But

1071
00:54:52,400 --> 00:54:53,960
Speaker 1: that doesn't mean if somebody picks it up in ten

1072
00:54:54,000 --> 00:54:58,040
Speaker 1: years and reads it, they'll realize that, like I might

1073
00:54:58,040 --> 00:55:01,160
Speaker 1: have completely changed my mind just and the eleven years

1074
00:55:01,160 --> 00:55:03,759
Speaker 1: I've been posting on the internet, I've absolutely changed my

1075
00:55:03,760 --> 00:55:07,360
Speaker 1: mind about things. But if you read the book in

1076
00:55:07,400 --> 00:55:10,280
Speaker 1: ten years, you will assume that is still how I feel,

1077
00:55:10,560 --> 00:55:12,799
Speaker 1: even if it's not. And all of those things are

1078
00:55:12,800 --> 00:55:15,120
Speaker 1: really big things to wrestle with. The other thing that

1079
00:55:15,200 --> 00:55:18,080
Speaker 1: was hard for me was realizing that in order to

1080
00:55:18,080 --> 00:55:22,200
Speaker 1: write an authentic, honest, powerful memoir like I wanted to,

1081
00:55:22,960 --> 00:55:26,360
Speaker 1: you need to be brutally honest, which means not painting

1082
00:55:26,400 --> 00:55:32,080
Speaker 1: yourself out to be an angel. It means sharing embarrassing

1083
00:55:33,280 --> 00:55:37,320
Speaker 1: parts of yourself that we've been taught to hold shame

1084
00:55:37,400 --> 00:55:41,400
Speaker 1: over and sharing them honestly and being like this is

1085
00:55:41,440 --> 00:55:43,919
Speaker 1: just who I am, and like, yes, I have made

1086
00:55:43,920 --> 00:55:45,879
Speaker 1: these mistakes and I'm not proud of them, but I'm

1087
00:55:45,880 --> 00:55:48,120
Speaker 1: still telling you them. I'm not going to hide them.

1088
00:55:48,280 --> 00:55:52,560
Speaker 1: I'm going to be completely transparent, because that's what makes

1089
00:55:52,920 --> 00:55:55,280
Speaker 1: a good book is being like, I'm human and humans

1090
00:55:55,280 --> 00:55:58,640
Speaker 1: are flawed. I'm not perfect, and that's the real life

1091
00:55:58,680 --> 00:56:01,799
Speaker 1: experience and realist like our failures and our flaws are

1092
00:56:01,960 --> 00:56:03,240
Speaker 1: really where we learn the most.

1093
00:56:03,960 --> 00:56:06,120
Speaker 2: Yeah, And I feel like that's what makes an influential

1094
00:56:06,160 --> 00:56:10,200
Speaker 2: person is being able to show people that you aren't

1095
00:56:10,200 --> 00:56:12,120
Speaker 2: perfect and you are a human and there's things that

1096
00:56:12,160 --> 00:56:14,279
Speaker 2: happen to you, the good and the bad. Right. I'm

1097
00:56:14,320 --> 00:56:16,960
Speaker 2: curious for you, like, you know, looking at your life

1098
00:56:17,000 --> 00:56:20,200
Speaker 2: now and how everything has transpired, and you know everything

1099
00:56:20,200 --> 00:56:22,440
Speaker 2: that you do, do you feel like looking back at

1100
00:56:22,440 --> 00:56:24,600
Speaker 2: your childhood it makes sense what you're doing now.

1101
00:56:24,760 --> 00:56:27,160
Speaker 1: I am so confident that I am exactly who I

1102
00:56:27,200 --> 00:56:30,960
Speaker 1: was meant to be, and to have such conviction of

1103
00:56:31,000 --> 00:56:34,000
Speaker 1: your purpose and your position in life is such a gift.

1104
00:56:34,120 --> 00:56:37,200
Speaker 1: And that gift is because of my blindness, and I

1105
00:56:37,200 --> 00:56:39,799
Speaker 1: think we often in society look at disability and we

1106
00:56:39,840 --> 00:56:42,919
Speaker 1: only see the negatives. There's so much beauty that comes

1107
00:56:42,920 --> 00:56:45,799
Speaker 1: with this experience if you choose to look for it.

1108
00:56:46,520 --> 00:56:50,440
Speaker 1: And I am so grateful to be in the position

1109
00:56:50,480 --> 00:56:53,280
Speaker 1: that I am. And I know that whoever the heck's

1110
00:56:53,280 --> 00:56:55,640
Speaker 1: out there in the universe, whatever you believe in, like

1111
00:56:56,400 --> 00:56:58,719
Speaker 1: I was designed this way for a reason, and I'm

1112
00:56:58,719 --> 00:57:00,840
Speaker 1: going to continue to follow that path and just trust

1113
00:57:01,719 --> 00:57:03,600
Speaker 1: that it's all going to work out. That's all I

1114
00:57:03,600 --> 00:57:06,560
Speaker 1: can do is trust, because I don't have a crystal ball.

1115
00:57:06,800 --> 00:57:09,719
Speaker 1: I've learned time and time again I can't control most

1116
00:57:09,760 --> 00:57:11,960
Speaker 1: of what happens in my life. I just need to

1117
00:57:12,000 --> 00:57:15,440
Speaker 1: surrender and go with it and trust that even when

1118
00:57:15,480 --> 00:57:17,600
Speaker 1: I don't see it, it's pushing me in the direction

1119
00:57:17,680 --> 00:57:18,440
Speaker 1: that I'm supposed to go.

1120
00:57:18,520 --> 00:57:20,200
Speaker 2: And I feel like the really beautiful thing about you

1121
00:57:20,480 --> 00:57:23,000
Speaker 2: is just knowing that you're a voice for so many

1122
00:57:23,080 --> 00:57:25,840
Speaker 2: people other than just yourself, which I think is really

1123
00:57:25,840 --> 00:57:28,760
Speaker 2: really powerful when it comes to being a speaker and

1124
00:57:28,840 --> 00:57:30,960
Speaker 2: being an author and being a content creator.

1125
00:57:31,240 --> 00:57:34,760
Speaker 1: It's also something that like I take so seriously and

1126
00:57:34,800 --> 00:57:38,600
Speaker 1: like honestly weighs very heavy on me constantly thinking like

1127
00:57:38,600 --> 00:57:41,600
Speaker 1: like I'll think of a like fun video idea and

1128
00:57:41,640 --> 00:57:45,080
Speaker 1: then be like, Okay, but how might that harm my community?

1129
00:57:45,160 --> 00:57:49,280
Speaker 1: Like I'm always like taking my responsibility to do right

1130
00:57:49,360 --> 00:57:52,600
Speaker 1: by my community so seriously, and that's like a very

1131
00:57:52,640 --> 00:57:55,200
Speaker 1: heavy weight to bear that I don't know that I'll

1132
00:57:55,200 --> 00:57:59,880
Speaker 1: ever fully be able to remove, because, as you said,

1133
00:57:59,880 --> 00:58:02,480
Speaker 1: my work is so much more than just me, Like

1134
00:58:02,560 --> 00:58:04,600
Speaker 1: I'm not here telling you like by this lip gloss.

1135
00:58:05,440 --> 00:58:09,360
Speaker 1: I'm telling you like change the way you view disability

1136
00:58:09,600 --> 00:58:13,720
Speaker 1: and like reassess how we design products and like really

1137
00:58:13,760 --> 00:58:17,000
Speaker 1: big things that are super heavy. And I take that

1138
00:58:17,120 --> 00:58:18,320
Speaker 1: so so so seriously.

1139
00:58:18,560 --> 00:58:21,200
Speaker 2: You guys know that I'm pregnant. I'm fifteen weeks pregnant

1140
00:58:21,200 --> 00:58:25,120
Speaker 2: with a baby girl coming in June. Mollie was talking

1141
00:58:25,120 --> 00:58:27,320
Speaker 2: about and you posted a video on this recently saying

1142
00:58:27,520 --> 00:58:30,120
Speaker 2: you don't want to have kids, So talk to us

1143
00:58:30,160 --> 00:58:32,200
Speaker 2: about why you don't want to have kids.

1144
00:58:32,360 --> 00:58:34,960
Speaker 1: Another thing that I think we need more representation on,

1145
00:58:35,160 --> 00:58:38,520
Speaker 1: like more women coming out and just like being able

1146
00:58:38,520 --> 00:58:40,880
Speaker 1: to confidently say they don't want kids and there being

1147
00:58:40,920 --> 00:58:43,480
Speaker 1: no like shame or guilt around that. So I talk

1148
00:58:43,640 --> 00:58:46,720
Speaker 1: very openly about the fact that I don't want kids.

1149
00:58:47,080 --> 00:58:49,640
Speaker 1: And there's a lot of reasons, but I think one

1150
00:58:49,680 --> 00:58:51,320
Speaker 1: big one is to be honest, like, most of my

1151
00:58:51,400 --> 00:58:54,920
Speaker 1: childhood was pretty traumatic. I had a really hard childhood

1152
00:58:55,480 --> 00:58:59,400
Speaker 1: and there was great, beautiful moments within that. I have

1153
00:58:59,520 --> 00:59:02,680
Speaker 1: a credible family. My parents are my best friends. My

1154
00:59:02,720 --> 00:59:05,080
Speaker 1: brother is such a superstar, like I adore my family.

1155
00:59:05,120 --> 00:59:08,120
Speaker 1: They were my bright spot. But I had an overall,

1156
00:59:08,160 --> 00:59:12,200
Speaker 1: like a pretty hard childhood. And to be honest, like

1157
00:59:12,280 --> 00:59:15,120
Speaker 1: my adult life is for me, like I am healing,

1158
00:59:15,320 --> 00:59:18,960
Speaker 1: I am living my adult life getting to have the

1159
00:59:19,320 --> 00:59:24,040
Speaker 1: care free joy and freedom that most kids get to experience,

1160
00:59:24,040 --> 00:59:26,479
Speaker 1: because that's what childhood is like, just being this care

1161
00:59:26,560 --> 00:59:30,000
Speaker 1: free freedom child who just gets to be innocent. I

1162
00:59:30,120 --> 00:59:33,480
Speaker 1: wasn't innocent. My innocence was absolutely robbed for me. Very

1163
00:59:33,520 --> 00:59:37,680
Speaker 1: young life was not care free. Ever, when you're going

1164
00:59:37,720 --> 00:59:41,200
Speaker 1: blind actively your whole life, that ain't care free. And

1165
00:59:41,600 --> 00:59:45,560
Speaker 1: I want to live my adult life for me. A

1166
00:59:45,600 --> 00:59:48,520
Speaker 1: lot of my work is for other people, you know,

1167
00:59:48,600 --> 00:59:51,760
Speaker 1: a lot of my work is about so much more

1168
00:59:51,800 --> 00:59:54,520
Speaker 1: than just myself. And so even in work, I feel

1169
00:59:54,560 --> 00:59:57,520
Speaker 1: like I'm giving so much and that doesn't mean I

1170
00:59:57,520 --> 01:00:00,120
Speaker 1: don't receive a lot from it. It's a gift, but

1171
01:00:01,160 --> 01:00:04,160
Speaker 1: my life. Truly, I feel like in adulthood, like I

1172
01:00:04,240 --> 01:00:06,840
Speaker 1: just need it to be about me. And if that's selfish,

1173
01:00:07,080 --> 01:00:09,680
Speaker 1: fine let it be, because I know that I'm not

1174
01:00:09,720 --> 01:00:13,480
Speaker 1: a selfish person overall, but I really need to just

1175
01:00:13,520 --> 01:00:17,919
Speaker 1: like live for myself. And I also do think that, well, yes,

1176
01:00:18,000 --> 01:00:21,120
Speaker 1: there is a chance that raising a child could heal

1177
01:00:21,160 --> 01:00:24,120
Speaker 1: my inner child. I don't want to have a child

1178
01:00:24,200 --> 01:00:28,080
Speaker 1: to heal myself. The risk is also there that raising

1179
01:00:28,080 --> 01:00:29,920
Speaker 1: a child could also dredge up a lot of my

1180
01:00:30,000 --> 01:00:32,920
Speaker 1: own trauma that I've chosen to file away and forget about.

1181
01:00:33,360 --> 01:00:35,680
Speaker 1: And I if, like if I had a daughter and

1182
01:00:35,720 --> 01:00:38,880
Speaker 1: she was being bullied or like struggling with stuff like that,

1183
01:00:38,920 --> 01:00:40,720
Speaker 1: like that would just weigh on me so heavy and

1184
01:00:40,760 --> 01:00:43,280
Speaker 1: like bring up a lot of my own trauma. Again,

1185
01:00:43,600 --> 01:00:46,240
Speaker 1: I don't we don't need to bring up again. Like,

1186
01:00:46,720 --> 01:00:49,120
Speaker 1: I just feel like I want to be a cool aunt.

1187
01:00:50,080 --> 01:00:52,760
Speaker 1: You know, I just had a niece. My partner has

1188
01:00:52,760 --> 01:00:54,640
Speaker 1: a niece and a nephew. Like I just want to

1189
01:00:54,680 --> 01:00:57,520
Speaker 1: be a cool, fun aunt to them and to my

1190
01:00:57,640 --> 01:01:01,000
Speaker 1: friend's kids. And I want to continue to live a

1191
01:01:01,040 --> 01:01:03,480
Speaker 1: life of purpose with my work and live a life

1192
01:01:03,480 --> 01:01:06,440
Speaker 1: of fun and freedom and joy and innocence when I'm

1193
01:01:06,440 --> 01:01:09,479
Speaker 1: not working, and like live the life that I didn't

1194
01:01:09,480 --> 01:01:13,200
Speaker 1: get to as a kid. And I ultimately, overall like,

1195
01:01:13,240 --> 01:01:15,400
Speaker 1: if I could sum it all up, I would rather

1196
01:01:15,440 --> 01:01:18,880
Speaker 1: regret not having kids than regret having kids, because one

1197
01:01:19,240 --> 01:01:21,880
Speaker 1: implicates an innocent child who did not ask to be

1198
01:01:21,920 --> 01:01:26,479
Speaker 1: brought into this world. And sadly, I think too many

1199
01:01:26,520 --> 01:01:30,960
Speaker 1: people idealize having a child, and I think a lot

1200
01:01:31,000 --> 01:01:32,560
Speaker 1: of people are guilty of being like, oh, I hope

1201
01:01:32,560 --> 01:01:34,840
Speaker 1: they have your eyes and my smile and your sense

1202
01:01:34,840 --> 01:01:39,760
Speaker 1: of humor, and they don't talk enough about and what

1203
01:01:39,800 --> 01:01:42,720
Speaker 1: if they have down syndrome and what if they get cancer?

1204
01:01:43,280 --> 01:01:46,320
Speaker 1: And what if they struggle with depression or develop an addiction?

1205
01:01:47,240 --> 01:01:51,800
Speaker 1: And those are equally real things that can happen. And

1206
01:01:51,840 --> 01:01:54,240
Speaker 1: I've seen too many people in my community born with

1207
01:01:54,240 --> 01:01:59,520
Speaker 1: a disability, who are put up for adoption, who are

1208
01:01:59,640 --> 01:02:03,280
Speaker 1: sent to institutions. I have been told to my face,

1209
01:02:03,320 --> 01:02:06,120
Speaker 1: you're so lucky your parents kept you. I wouldn't keep

1210
01:02:06,120 --> 01:02:09,960
Speaker 1: a disabled child. That's the reality. If you choose to

1211
01:02:09,960 --> 01:02:12,760
Speaker 1: be a parent, you choose to be a parent if

1212
01:02:12,840 --> 01:02:16,920
Speaker 1: the child is disabled or not. And so for me,

1213
01:02:17,280 --> 01:02:21,480
Speaker 1: like it just breaks my heart, and yeah, I just

1214
01:02:21,520 --> 01:02:24,400
Speaker 1: think it's it's so unfair how much we idealize children

1215
01:02:24,440 --> 01:02:27,520
Speaker 1: instead of looking at at it realistically. And when I

1216
01:02:27,560 --> 01:02:31,080
Speaker 1: look at it realistically and really like sit with myself

1217
01:02:31,120 --> 01:02:33,120
Speaker 1: and say, do I want kids because society is saying

1218
01:02:33,120 --> 01:02:35,240
Speaker 1: it that that's like the path we're supposed to go

1219
01:02:35,240 --> 01:02:37,720
Speaker 1: on and check all these boxes, or do I molly

1220
01:02:38,400 --> 01:02:41,440
Speaker 1: want kids? When I sit with myself, the answer is

1221
01:02:41,480 --> 01:02:44,200
Speaker 1: I molly do not want kids, and so therefore I

1222
01:02:44,200 --> 01:02:45,080
Speaker 1: shouldn't have them.

1223
01:02:45,320 --> 01:02:48,200
Speaker 2: It's obviously very responsible thinking, and I agree. I think

1224
01:02:48,240 --> 01:02:50,480
Speaker 2: more people should think that way and think about it

1225
01:02:50,520 --> 01:02:53,640
Speaker 2: really hard before trying to have kids or getting pregnant

1226
01:02:53,720 --> 01:02:54,720
Speaker 2: or having kids.

1227
01:02:54,440 --> 01:02:57,160
Speaker 1: But lots of parenting books, but there is no parenting

1228
01:02:57,160 --> 01:03:00,240
Speaker 1: books for raising a disabled child or very if you

1229
01:03:00,320 --> 01:03:03,160
Speaker 1: there certainly wasn't any around when my parents were raising me,

1230
01:03:03,760 --> 01:03:06,440
Speaker 1: and like my parents got thrust into this, like you know,

1231
01:03:06,560 --> 01:03:09,040
Speaker 1: like six months old, my granddad was like, I think

1232
01:03:09,080 --> 01:03:11,840
Speaker 1: something's wrong. And then four years old we finally had

1233
01:03:11,880 --> 01:03:15,000
Speaker 1: all the diagnoses and they just had to figure it out.

1234
01:03:15,440 --> 01:03:18,080
Speaker 1: And hats off to them, like they did an incredible job.

1235
01:03:19,200 --> 01:03:20,840
Speaker 1: My mom and I actually really want to work on

1236
01:03:20,840 --> 01:03:24,480
Speaker 1: a parenting book, not as parenting professionals, but it's just

1237
01:03:24,520 --> 01:03:28,360
Speaker 1: like more like a mother daughter memoir that shares our

1238
01:03:28,440 --> 01:03:33,760
Speaker 1: experiences of you know, raising a blind daughter. And yeah,

1239
01:03:33,800 --> 01:03:37,800
Speaker 1: because it's there isn't enough information and access and parents

1240
01:03:38,520 --> 01:03:42,960
Speaker 1: are their kids first teacher, and parents can either instill

1241
01:03:43,600 --> 01:03:48,640
Speaker 1: internalized ableism into their child or they can raise an empowered, confidence,

1242
01:03:48,640 --> 01:03:52,040
Speaker 1: strong disabled child who does not believe that their disability

1243
01:03:52,080 --> 01:03:55,920
Speaker 1: is a negative, bad thing. And that is so important

1244
01:03:56,440 --> 01:04:00,520
Speaker 1: and so finding. I always encourage parents, like, yes, it's

1245
01:04:00,640 --> 01:04:04,920
Speaker 1: great to watch content from other parents of disabled children.

1246
01:04:05,000 --> 01:04:07,880
Speaker 1: It's great to be in support groups of other parents,

1247
01:04:08,280 --> 01:04:12,480
Speaker 1: but you need to be reading, watching and learning from

1248
01:04:12,520 --> 01:04:16,240
Speaker 1: disabled adults because we are the ones with the lived

1249
01:04:16,240 --> 01:04:19,280
Speaker 1: experience and we are the ones who can actually tell you,

1250
01:04:19,920 --> 01:04:23,520
Speaker 1: like what words we do and don't like what like

1251
01:04:23,640 --> 01:04:26,800
Speaker 1: get into the nuance of like disability rights movement, uh,

1252
01:04:27,400 --> 01:04:29,880
Speaker 1: social verse, medical model, verse, charity model, you know, like

1253
01:04:29,960 --> 01:04:32,400
Speaker 1: all of those things, like really nitty gritty stuff that

1254
01:04:32,440 --> 01:04:33,240
Speaker 1: actually matters.

1255
01:04:33,440 --> 01:04:36,360
Speaker 2: Molly, knowing what you know, now, what would you tell

1256
01:04:36,760 --> 01:04:38,400
Speaker 2: your fourteen year old self.

1257
01:04:40,960 --> 01:04:43,760
Speaker 1: She needed so much support? I mean, first off, I

1258
01:04:43,800 --> 01:04:46,520
Speaker 1: want to give her a hug. All the time my

1259
01:04:46,560 --> 01:04:49,240
Speaker 1: mom and I talk about, like when we look back,

1260
01:04:51,760 --> 01:04:54,760
Speaker 1: I don't know how I did it, Like God, I

1261
01:04:54,800 --> 01:04:57,760
Speaker 1: could never do that again. The fact that when I

1262
01:04:57,760 --> 01:05:00,080
Speaker 1: see fourteen year olds now, I'm like, you're a baby.

1263
01:05:00,560 --> 01:05:03,720
Speaker 1: Like the fact that I did that at fourteen, I

1264
01:05:03,840 --> 01:05:05,560
Speaker 1: do not know how I did it. And so I

1265
01:05:05,600 --> 01:05:07,800
Speaker 1: first just want to give her like the biggest hug,

1266
01:05:09,880 --> 01:05:11,360
Speaker 1: and I would just tell her like hope is one

1267
01:05:11,400 --> 01:05:15,440
Speaker 1: of the most powerful things we have, because sometimes that

1268
01:05:15,600 --> 01:05:18,960
Speaker 1: is all you have, Like hope was the only thing

1269
01:05:19,040 --> 01:05:21,760
Speaker 1: that got me through, Hope that there would be better days,

1270
01:05:21,800 --> 01:05:23,800
Speaker 1: hope that my life would get better and change, and

1271
01:05:24,320 --> 01:05:27,400
Speaker 1: that things would get easier, And so hold on to

1272
01:05:27,560 --> 01:05:29,360
Speaker 1: hope when you've got nothing else left.

1273
01:05:29,400 --> 01:05:31,240
Speaker 2: Well, thank you so much for being on post run

1274
01:05:31,360 --> 01:05:35,080
Speaker 2: high with me today. I hope you're feeling good and

1275
01:05:35,240 --> 01:05:38,280
Speaker 2: I am so excited to dive into your book Unseen.

1276
01:05:38,560 --> 01:05:40,680
Speaker 1: Thank you. I'm ready for a post run snack.

1277
01:05:40,880 --> 01:05:44,000
Speaker 3: I know same, I'm in a post run bathroom break,

1278
01:05:44,040 --> 01:05:45,960
Speaker 3: because girls gotta go. Both girls gotta go.

1279
01:05:51,560 --> 01:05:54,280
Speaker 2: Thank you guys so much for listening to today's episode

1280
01:05:54,320 --> 01:05:57,520
Speaker 2: with Molly Burke. If you loved this conversation as much

1281
01:05:57,560 --> 01:05:59,960
Speaker 2: as I did, Please make sure you follow the SHO

1282
01:06:00,080 --> 01:06:03,800
Speaker 2: show wherever you're listening, and if this conversation spoke to

1283
01:06:03,840 --> 01:06:05,560
Speaker 2: you and you think it could help somebody else in

1284
01:06:05,600 --> 01:06:09,760
Speaker 2: your life, please share this episode with them. Your support

1285
01:06:09,840 --> 01:06:14,160
Speaker 2: helps us continue bringing you inspiring conversations. I hope you

1286
01:06:14,160 --> 01:06:17,240
Speaker 2: guys are enjoying Season two of Post Run High so far,

1287
01:06:17,880 --> 01:06:20,480
Speaker 2: I know we are. My team has loved being in

1288
01:06:20,520 --> 01:06:24,040
Speaker 2: California and we cannot wait to see you next week

1289
01:06:24,200 --> 01:06:26,560
Speaker 2: and show you who's coming on the show.