Empowering Others with Warmth, Wit and Whimsy | #IamRemarkable Week 2021

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[MUSIC PLAYING] JOANA LIBANO MONTEIRO: Hi, everyone, and welcome to the IamRemarkable Week. I couldn't be happier to be part of this amazing program. It's been an exciting week, and we have another great session for you today. We will start with the fireside chat and then have a Q&A at the end, so make sure to be adding your questions throughout the conversation. My name is Joana, pronouns are she/her, and I lead Google's LGBTQ+ employee resource group in Europe, Middle East, and Africa, representing more than 1,000 Googlers across 25 countries. My day job is to lead a team that gets Google ready for regulations in our Trust and Safety organization. Today, I am delighted to be speaking with Jessica Kellgren-Fozard, a truly inspiring creator that is best known for her YouTube channel on which she talks about her life with disabilities and chronic illness in a positive, uplifting way. Jessica has two rare genetic conditions, HNPP and EDS, which affect her nerves and connective tissues, leading to symptoms, including deafness, chronic pain, muscle wastage, paralysis, fatigue, and visual impairment. We have an interpreter with us today-- Holly-- who will be translating in real time for Jessica. Jessica lives with her wife Claudia, their newborn son Rupert, and two adorable fluffy dogs in Brighton. She is a notable figure in the LGBTQ+ community, having been highly commended as a rising star by "DIVA" magazine, listed in the 2021 "Guardian" Pride Power List, and winner for online influencer of the 2021 British LGBT awards. Wow, that's remarkable. Welcome, Jessica. It's absolutely great having you with us today, and thank you for joining. JESSICA KELLGREN-FOZARD: Hi, Joana. Thank you so much for having me. Thank you also for having me at a changed date, as well, since we had to make some little adjustments, because I had a bit of a health issue last week that's still ongoing. But we've managed to turn things around. And also now I'm wearing clothes for the first time in a week and a half, which is absolutely lovely. JOANA LIBANO MONTEIRO: No, absolutely. Thank you for making it despite actually feeling that way. So really, really appreciate you making the effort. OK, so let's start with what makes you remarkable, which is what brings us here today. Can you tell us a little bit about your story? JESSICA KELLGREN-FOZARD: Sure. So I was born with two different genetic disabilities. I actually get one from each parent, although at birth, no one knew this. My parents weren't diagnosed with their condition. They didn't know that they carried these genes. No one, in fact, knew this until the age of 17 when I was diagnosed after paralyzing both of my arms during an exam, which I realize sounds very remarkable. And you're like, my goodness. How could this not have come up earlier? But I have a condition that means the nerves in my body, the protective coating around them have holes in it. And this means that the nerves themselves, they don't have the protection. And should they be put under any kind of pressure, they can either fray, which means that they're already damaged long term, which is unfortunately what happened with things like my eye. So I can't see out of my left eye, because the vision is damaged. The nerve there doesn't work anymore, because the hole that protects that section didn't work. Or the nerve can swell through the gap in the protective coating, and that can paralyze the nerve further down, which can be for any length of time. So I live with the kind of uncertainty of facing paralysis to any degree for any length of time, and it can come back to any degree. And I don't know when that might be. So a week and a half ago, for instance, I was unpacking a food delivery from a grocery shop, putting it from the crates into the bags. And I didn't stand up enough while I was doing it-- injured my back. And in injuring my back, my nerves decided to paralyze my legs, so that's why I've spent the last week and a half in bed. And I'm currently in a motorized wheelchair, propped up with a lot of pillows. So that's how that nerve system works. But as a child, no one knew this about me. So I'd come to school and be like, my hand just doesn't work today. It's really floppy, and I can't make it work. And my teachers would be like, no, you're just being ridiculous. That doesn't happen. No five-year-old has a hand that just randomly doesn't work. You're just faking. You're making it up. And I'm like, I'm really not. This is very inconvenient for me. You think it's annoying for you? I'm five. I want to go out and play. I have a floppy hand. It's bothering me more than you. Come on here. I'm not faking this. This is annoying. So I was constantly dealing with things like this. I was constantly injuring myself. I was dislocating fingers. I was having-- just things where I'm like, I can't feel my shins, for instance. Because when I crawled on them as a baby, that stopped them from being able to feel. And growing up, I thought this was completely normal until the age of 17 when I got diagnosed. And they mapped my skin and were like, let's find out which bits of your skin you can actually feel and which bits you can't. And they were like, you can't feel your shins. And I was like-- JOANA LIBANO MONTEIRO: Should I? JESSICA KELLGREN-FOZARD: --you can feel your shins? That's a thing? Shins have failing? Oh my God, what? This is crazy. Oh my goodness, shocking. So there's a nerve condition aspect. And then there's the connective tissue disorder as well, which makes the nerve condition worse, so it's much worse than it would be if I just had the nerve issue. If I just had the nerve issue, I'd probably have just like numb fingers occasionally. But unfortunately, with the muscle condition, I dislocate a lot. And therefore, the dislocation a lot means that the nerve issue is worse. And it also affects my internal organs, so I have, I think, postural orthostatic tachycardia syndrome, which is really fun to say. So if I say-- [INTERPOSING VOICES] --if anyone's really ever nosy. I get this thing a lot because of the way I dress. I'm like, here I am in my pretty, frilly pink summer dress, coming out of the disabled toilets. And maybe I'm not using a mobility aid that's super visual, so I'm just like flouncing out. And there's some busybody out there like, excuse me. That was the disabled toilet. It's only for disabled people. And I just pull this out of my back pocket and go, well, actually, I have hereditary neuropathy with liability to pressure palsy, Ehlers-Danlos syndrome, with postural orthostatic tachycardia syndrome. So I am disabled. Because it just sounds excellent, doesn't it? It's brilliant, just a lot of words. It's wonderful to say. But yeah-- [INTERPOSING VOICES] --coping with all this. Sorry? JOANA LIBANO MONTEIRO: I was saying, I'm sure nobody says anything after that. Yeah. OK. So with that, actually, it helps us going to the next question, which is how has your deafness, your disabilities in general, maybe even your identity if you want to touch on that point, shape you and shape who you are today? So you told us a bit about the background, and I would love to understand how does that impact your life nowadays. JESSICA KELLGREN-FOZARD: Yeah, so growing up I was in this very odd position of knowing things about myself but constantly being told that I was wrong and that I was incorrect, even though they were things that I innately knew about myself. So I knew that there was something wrong with my body. I knew it was different to other peoples. I knew that I couldn't run like other children could, that I was injured a lot more than them. I knew that I liked girls. I knew that when all my friends were like, oh my God, that boy, isn't me amazing? Oh my God, I love him. And I was like, no, no, absolutely not. No. But have you seen Rogue from the X-Men? I die. Isn't she beautiful? And my friends were like, no, no. So I knew I was gay. I knew that was a thing. I was like, yep, that's me. I've decided completely. And people from the outside were like, you can't know this about yourself. You're too young. You're too young. That's not possible. But I was really, really sure about myself, and I think it just gave me a lot of confidence in a lot of other ways. And it's a funny kind of misconception almost, because it could have made me feel very, very bad about myself. And I almost went two ways. There was the thinking of, I am alone in this. There is no one else out there like me, because I didn't see anyone else out there like me. I desperately wanted to be a "Blue Peter" presenter growing up, which if you don't know, is a kid's TV show in England. The presenters are amazing. They get to do all this fun stuff, like dress up in historical costumes. And they make cool little art projects that always somehow involve the inner tube of a toilet paper roll and have lots of fun doing that. And they interview fun people like elephants for some reason. Why not? And they'll go and visit some interesting old castle. And for some reason, they also then go jump out of a plane or go and hike up a mountain. And my dream was always to be a presenter on this program. And I was like, yes, all of these things I know that I can do, except for I don't think I can hike up a mountain. I don't think my body will allow that to happen. And therefore, does that mean I can't be a "Blue Peter" presenter? And I would look around on television and see these people having such fun, having such a good time, and want desperately to be like them. But think, I don't think I can, because I haven't seen anyone else who's like me. And even nowadays, there's a statistic that only 0.06% of people we see in adverts on UK television have a disability, and yet a 1/5 of the population has a disability. JOANA LIBANO MONTEIRO: That's crazy. JESSICA KELLGREN-FOZARD: It's completely unsurprising, right, that you'd think, how on Earth could I ever be on TV? How could I ever share my story? How could I ever work in the media, do these fun things? JOANA LIBANO MONTEIRO: And that's where YouTube comes in, right? Because you have I think almost 900,000 subscribers, more than 76 million views. Yes, I checked yesterday. That's impressive. JESSICA KELLGREN-FOZARD: Yeah, yeah, round me up. Go on. JOANA LIBANO MONTEIRO: Yeah. It's quite remarkable. How did it all start? And how did you even think about YouTube as an alternative? Because, to your point, mainstream would have been hard. And so I would love to understand how that clicked for you. JESSICA KELLGREN-FOZARD: Sure. So, again, growing up, this was the thing I really wanted to do. And I felt like it was absolutely impossible, and I just couldn't do it. But, again, I'm a really determined person, and I think it comes from that childhood of being told no about things that I knew were absolutely 100% correct about myself, from having to go to school and being told-- I went to a Church of England primary school, and they were quite keen on telling us about when we were older and had husbands. And I was like, I think you'll find-- no. But I'm older and have a wife, which, by the way, is still very traditional of me. But here we are. I do have a wife. We do have a child, so did go down a very traditional pathway. Slightly off-center but still very traditional. And I was just very determined. I decided that this was what I was going to do, even though I knew it was going to be quite hard. And I have a lot of family who work in media, in the film and TV areas, but none of them were, to be fair, that supportive of the idea of me doing it, because they knew how hard it was. And they all said, well, you've got to start from the bottom up. You start as a runner, and it's really difficult. You start from the intern, and you're getting people coffee and running around. And it's the tough jobs that you're up till midnight. And, Jessica, you fall over after standing up for half an hour. It probably isn't the thing for you. It's not really going to end well. And when I injured my arms at 17-- say injured. So I was sitting in an exam, and I leant on my arm for 20 minutes whilst I was writing. And in doing that, I got a crick in my neck. I'd also been on crutches for six months a few months prior to this, which had made the muscles in my neck a bit unstable. And then the leaning on my arm, during this exam, was I guess the straw that broke the camel's back, literally. And by that evening, my hand had started to go numb. The numbness had spread all the way up my arm. I woke up the next morning. My arm was completely paralyzed all the way up to the shoulder. Being a teenager, I it was quite funny, for some reason, because I didn't know that there was anything wrong with me. And I thought that this would just get better in a few hours. What a funny dead arm that I'd apparently slept on. My friend came over. We lined up a number of items for me to attempt to pick up and then drop. My mother was not pleased that we were doing this on her kitchen table-- dropping like buckets of sugar everywhere. But, hey, you teenagers are going to teenage, I guess. We did raisins as well. The dog was there, like, this is great, guys. Keep going. Why not? Drop everything. Drop those biscuits. Go for it. Yes. And then the next morning, my other arm wasn't working either. We were like, oh. Ooo, might be time to go to the hospital. Gosh. And at hospital, I did a whole barrage of tests thinking that this was going to be meningitis, a brain tumor. Could be any kind of very disturbing thing. And actually found that it was this genetic thing I have-- hereditary neuropathy with liability to pressure palsies-- and told me that probably my arms would come back, but they didn't know when it would be. And it was a year and a half until they did. But during that time, obviously I was having exams. I got to where I wouldn't be able to do my exams, because I couldn't write. I wouldn't be able to continue to take my classes. My entire school education was completely messed up. I'd also had a test in the hospital, and they were checking to see whether I had a brain tumor or anything-- a lumbar puncture that takes the fluid from your spine. And it unfortunately went wrong. And they tried to take a tiny bit of spinal fluid using a needle in my spine. And-- so sorry, should give a needle warning before I talk about needles. I always do that. I'm like, here's a warning, but afterwards. Sorry. And unfortunately, what happened was the spinal fluid leaked out through the hole, because it's supposed to close up as soon as the needle comes out. But unfortunately it didn't, and it bled out. And my father took me home, because it was a Friday when I'd had it done. And I'd been in the hospital for a few weeks, and I'd been going home every weekend. And I had this test done on a Friday. He took me home for the weekend. And unfortunately, by the time I got back to the hospital on Monday, most of my spinal fluid had bled out. And it hadn't been picked up on that I'd been getting progressively iller, and iller, and iller. I wasn't able to lift my head. And because I'd lost so much spinal fluid, I essentially wasn't able to sit upright at all without dehydrating my brain, which is incredibly dangerous because it can kill you. JOANA LIBANO MONTEIRO: Wow. JESSICA KELLGREN-FOZARD: And I suffered some brain damage from the dehydration in my brain. And so every time I did sit up, I would vomit, pass out, slump back. And I had to spend a long time-- it was two years all in all-- on bed rest, lying down. I also had to be in a dark room, because any light hurt me. I couldn't have sound, because the tiniest sound hurt me. Fortunately, I was, at this point, losing my hearing, so that was good. That was working in my favor fortunately. Even touch, the tiniest-- I remember being in my hospital bed and someone pressing gently their fingertips to the end of this hospital bed. And it sent shock waves of pain through my head. And just the extreme pain that I was in for about two years with this was exceptional. It was definitely the worst-- the hardest time in my life. And as I was going through it, I was just thinking like, is this it? Is my life over at the age of 17? This feels a little premature. I feel like there's perhaps more I should have done with my life here. I think I've got more to do. I think I've got more to say. Definitely other things I'd like to try in the world. "Blue Peter," call me. And I kept myself entertained by creating little television shows in my head. I would play myself episodes every week. I spaced them out, so I was very harsh with myself. So I played one episode on a Monday, and I'd be like, oh, got to wait till next Monday for the next episode. I couldn't watch actual TV, because that hurt too much, but I could play TV in my brain. So got to make it up as we go along. So I did that instead. So I made up this little life that I was going to have in the future and what it was going to look like. And I just remember thinking, I can't be alone. I can't be the only person who's going through this. I can't be the only person who's living a life like this. I didn't know anyone else who was disabled. I didn't know anyone else who was living in a similar way to me. I kept thinking, if I get through this, if I get to the other end, I've got to turn around, and help other people, and pull them through it, too. Because I didn't see anything. I didn't get any media of how I could get through this. And people would give me books, like special stories of people who became disabled. And they're all like super worthy. They were awful. They were terrible. My God, there was like, oh God, some girl who'd had got some virus, and then she became disabled. And, oh, tragedy. Oh God, no, goodness. But a boy still went to a dance with her. He was so sweet. Oh, he held her hand. I'm like, oh, Jesus Christ. He held her hand. That's all she gets now. She's in a wheelchair. She gets the boy that holds her hand. Delightful. So this is rubbish, absolutely atrocious. I'm not having this. So I decided I was going to create something new. If I got through this, if I was going to get to the other side, I was going to create something new, something representational, something that could actually be inspiring to actual disabled people. Not something inspiring for non-disabled people that's supposed to make non-disabled people feel good about their lives, something for people who are struggling. And, granted, it doesn't have to be people who are struggling with a disability related thing. It could just be people who are struggling with something else. But just something that's there to say, yeah, life is hard, but also there can be so much fun in it. There can be so much beauty within that struggle. So yeah, I got through that bed rest, thank goodness. And I was like, I'm going to make it through. I'm going to get through this. And I decided to try out university. That was hard. I was like, I'm going to do this. Maybe this will help me skip that whole runner job in the film industry. And then through that, I started my university's first ever television society. It was like an online TV society where I made very little videos. So I taught myself to video edit, and I did the presenting, and the editing, and came up with the stories. I basically just made YouTube videos but on the university's platform. I was like, yeah, this is really fun. My God, this is amazing. And then through that got head hunted by a local TV station. They were like, hey, come work for us. It'll be really great. We're not going to pay you, but it would be really great. You'll be working for us. We'll totally take your money. But it'll be really great. Do it. Yeah. So I went to go work for them, and I found that it was not the easiest thing to work for someone else when you have a body that doesn't work for you. It just does its own thing. Because I can't control my body myself, so how on Earth am I going to control it around someone else's schedule? Doesn't necessarily do that. And if they tell me that I can only film on Wednesdays between 9:00 and 11:00, I can't promise that my body is going to be capable of doing that on Wednesdays between 9:00 and 11:00. However, when I had the freedom before and I was doing my own videos, I could film whenever my body felt like filming. And I could edit when I had to be lying down, because I can edit on my laptop, and it's just on my lap. And I could come up with creative ideas whenever I felt like I could. And that flexibility was amazing. I started running myself into the ground and getting iller, and iller, and iller, and iller. And at this point-- this is the up point in the story. Don't worry, we've got there. We've got there. I had just met my amazing fiancé, who had just become my wife. And she was like, hey, tell you what. We just got married. How about I give you six months and fully support you, and you just don't do that job anymore and become a YouTuber? And I'll give you six months. You just try this YouTube thing, see how it goes, work around your body, your schedule. And if it works out for you, great. And if it doesn't, we'll see. And fortunately, it did, and we've never discussed the alternative. She's never told me what I would have had to do if it hadn't worked out. JOANA LIBANO MONTEIRO: That's impressive. It's so inspiring just to hear your story. Thank you for sharing. And I hope others understand the options they have and the flexibility. Sometimes, it's not easy, though. It's hard. So I guess this is IamRemarkable Week, and we are reflecting about how we can challenge modesty norms, how we can boost people's confidence. And you're certainly the epitome of confidence. So what's one piece of advice that you would give people in the audience to boost their confidence today? JESSICA KELLGREN-FOZARD: I think the best piece of advice, when it comes to confidence, is just that you know yourself. Even if you feel like you don't, you do. You know yourself better than anyone else does. So even if you feel like you've got to take a moment, you've got to think about yourself, you know what you need. You know what you like. So if someone is trying to work you to do something that you don't want to do, if they're trying to make you agree to something, if it doesn't feel right for you, don't. And you can always adapt things in a way that does work for you. And you'll be actually really surprised how flexible people can be if you're just open and honest about what does work for you. I think it is truly great how amazingly open people can be once we start opening up to each other. I think once we have the confidence to bear our souls a little bit with other people, people are willing to bear their own souls with us as well. JOANA LIBANO MONTEIRO: I absolutely agree with you. And who in your life has inspired you to be this way or to have that awareness of yourself and then confidence in yourself? Who or what-- maybe it was a situation, or a community, or a person. It doesn't have to be just a person. JESSICA KELLGREN-FOZARD: Well, I think the most inspiring person in my life was my grandmother, who was a children's nurse in Boston at the outbreak of the Second World II. And decided that she was going to sign up to become a nurse in the Army, and came over, and then met my grandfather across an operating room table. He was a sergeant with the British army. He was actually Swedish, but he was a surgeon in the British army. And they met across an operating room theater-- table-- on some battlefield in the middle of France. And she was like, hey, you seem absolutely amazing. You also appear dedicated to saving people's lives. He was like, yes, I am. I am dedicated to saving people's lives, making the world a better place. She was like, fabulous. Me too. Do you want to get married? And he was like, yeah, let's. And three weeks to the day they met, they went ahead and did that in the middle of a war, despite the fact it was actually illegal for American servicewomen to get married. So they did it in secret illegally in the middle of the war. And then didn't see each other for years, because, again, there was a war going on, and they were actually in different armies, got posted to different places. She's fabulous, by God. So she got posted all around Europe, where she was busy saving people's lives and one day was patching someone up. And he said, oh, nurse, nurse, you're so amazing. You're so gentle. You're so wonderful. Tell me your name. Tell me your name. Please, please. I know I'm dying. I just want to know the name of this wonderful nurse who's saving my life. And so she decided to give him her married name rather than the actual name that she should have given him, which was her American name. So she was like, oh, I'm Nurse Kellgren. And he was like, I knew it. So funny, I just saw a Doctor Kellgren. She was like, you did? Where? That's my husband. I haven't seen him in years. Where is he? And so he told her, and she was like, well, I'm off. Let's go. And told her commanding officer-- was like, look, I should've told you this before, but I got married two years ago. And yeah, I know it was illegal, but it's legal now. And I know it was secret, but I've got to go find my husband. Can I go? So she got in the back of a lorry, got smuggled across occupied Europe, found my grandfather. They were reunited, celebrated together at the end of the war, as that happened, came to England together, had a lot of children, and were together for 60 years. And she completely made this entirely new life, because she was like, yeah, I'm dedicating my life to service of people and saving lives. And she created this family that-- so many of my family have gone into medicine and care greatly about saving people, making the world a better place, and are really inspired by her and by my grandfather as well. But they were just amazing, inspirational people who thought that, while we're here, it's our job, our duty to help as many people as we can I suppose. JOANA LIBANO MONTEIRO: I guess you do it now with your own means, and it's incredible to see how YouTube and other social networks also hopefully help you get the message through. What are some of the most inspiring experiences you have gotten from getting yourself out there? Because essentially, you're exposing your own vulnerabilities. How does that bring out the best, or not, in people that you interact with? JESSICA KELLGREN-FOZARD: Yeah, I think so often we hear about how social media, as a whole, the internet is a negative thing. That's a topic of discussion that comes up very often. And I think it's always from people who aren't seeing just how amazingly, wonderfully representative and diverse new media is compared to old media. If we're looking at YouTube, if we're looking at YouTube's top creators in terms of who people really love and cherish and who's risen up there, it's amazing. It's people who wouldn't really have had a chance if they were being on the more gatekeeping old media, like film and television. And that's really beautiful, and that's really wonderful to see. And I always say to people when they ask me about creating a YouTube channel-- they're always like, I don't think there's anyone would be interested in me. I really want to make a YouTube channel, and I really want to share my passion, but I don't think that there's anyone who would care. And I'm like, I thought that there wouldn't be anyone who would be interested in the intersection, the niche of disability and LGBTQ+. I was like, that's a tiny niche, when I started my YouTube channel. And then come to find out down the road, 1/3 of people who identify as LGBTQ+ have a disability, and 1/5 of the population, as a whole, have a disability or chronic illness. It's a massive, massive part of the population. It's actually the largest minority-- people who have disabilities. It's hugely underserved. And it's wonderful that nowadays we are seeing people across social media platforms, and especially across places like YouTube-- Which I think YouTube's wonderful, because it allows us to really form the connections that we're seeing, that we wouldn't really be getting on television. Because we're actually able to leave a comment and inspire our creators to make a video responding to something that we've asked them to talk about, that really connects to us as an audience. We're essentially commissioning the television we want to see rather than just being fed what, from the top down, they think we should watch. And that's amazing. And then on the other hand, I also love looking in my comments and seeing people that I know have been watching my videos for years, and years, and years and have made really strong, really passionate friendships-- and even some relationships. I'm not going to take full credit. I just put them together. I didn't light the romantic spark, but I got them in the same room. JOANA LIBANO MONTEIRO: That is incredible. That is absolutely incredible. JESSICA KELLGREN-FOZARD: Yeah, I just love things like that. Absolutely love to see it. JOANA LIBANO MONTEIRO: And how do you keep the creativity up? It's crazy how you continue to create new videos, and all of them are more inspiring than the other. JESSICA KELLGREN-FOZARD: Oh my goodness. Yeah, people love asking that question. "How do you get ideas for videos?" I have an issue with that actually in that I have too many ideas. I use Google Calendar, which is my favorite resource ever, so props to the creator of Google Calendar. I use it as my daily to-do list, calendar tool. It's not just Google Calendar. It's not just to be used as a calendar, guys. You should also use it as your to-do list. It's really excellent for that. So I have different slices within my calendar which is like, filming, writing, editing, to-do, what to do today, all of that. It's all in there. It's perfect. But I also have one that is just videos. And then I can easily drag and drop them around. So whenever I have a new video idea, I just create a new calendar thing for it, and I put the video idea as the name of the event. And then in the notes, I'll write down what I think the video is going to be about. And I might be inspired off of a conversation with a friend, might be from an article I read, might be from another video that I watched, an Instagram post, might just be randomly from a walk. Ideas, they come to me, a lot. I think I've got 200, at the moment, in that Google Calendar. JOANA LIBANO MONTEIRO: Wow. JESSICA KELLGREN-FOZARD: I have to keep dragging down as we approach the day. JOANA LIBANO MONTEIRO: Well, that's great, because we realize that you need the pipeline for us to continue to be able to watch you. So I'm glad you have 200 plus, and I hope the pipeline doesn't go dry anytime soon. OK. So let's give the audience the chance to ask some questions as well. We have a question from Ines Kovako. "What are the best ways that those in the LGBTQ+ community can support each other?" JESSICA KELLGREN-FOZARD: Great question. Really good question. I think that the best way that we can support each other, as a community, is being vocal and educating ourselves on the parts of the community that we are not part of. So I have a series on my channel that does historical profiles. So I'll look at different people through history who were part of either the LGBTQ+ community or had a disability, just covering the people that we didn't talk about in history class-- or the people that we did talk about in history class but the parts of their lives that we didn't talk about. That type of thing. And one thing that I'm really trying to do with that is also inject and therefore learn more about the parts of the LGBTQ+ acronym that I'm not a part of and therefore learn more about, and spread awareness of, and share support for. Because I think it's really important to be vocal not just on day of. So if it's Bisexual Awareness Day, it's great to be like, yeah, it's Bisexual Awareness Day. Woo! Let's post that flag. But what about every other day of the year? Let's talk about bisexual pride. Let's talk about bisexuals on other days. Let's support them every other day of the year as well. So being vocal and supportive and making sure that we have got all of the knowledge up here, that we've got all the education so that when we are in a position where someone else starts spouting something. And we're like, oh, hm, hm, hm-mm-mm-mm--mm. That's misinformation right there. No, no, no, no. Let me come and hit you with a correct fact. That's wrong. That's the stuff that we need. We need people who've got their facts right. We need people who can stand up and say the right thing. Or it's also totally OK if you don't feel all right in that situation, if you're putting yourself at harm. Please don't put yourself at harm to stand up for something. But also, go ahead and do it online. Go for it. Go for it. JOANA LIBANO MONTEIRO: I really, really like that, because essentially, the way for us to support each other is to actually educate ourselves first and then support others better. I really like that. So second question of the day, question from Monica-- "First things first, I love your channel. It brought me so much joy during this pandemic. You talked about the flexibility YouTube gives you to work when your body is able to work. How do you give yourself permission to rest and take care of yourself when you need to? The culture of busy and productivity is so hard to escape." JESSICA KELLGREN-FOZARD: Oh, this is a great question. Oh, wow. Yes, I will admit my personality isn't great at resting, as you can tell. Here I am propped up with my pillows. I don't tend to enjoy doing nothing. I like to be doing something. That's how I rest. So I discovered-- not discovered, but-- like I discovered it, I found it under a rock. "The Sims 4"-- excellent, an excellent game. Fabulous, fabulous. That is how I rest. So for those of you who don't know, "The Sims 4" is a life simulator where you can make little people do things, be productive for you. So I lie down, and rest my body, and essentially rest myself, regain my spoons by making a little pixelated version of myself do things. JOANA LIBANO MONTEIRO: That is fantastic. JESSICA KELLGREN-FOZARD: I should see a therapist about that. I realize that it's not probably very healthy. Now that I'm saying it out loud, it sounds terrible. But yes, find a thing that you can do that makes you feel-- if you're one of those people that needs to feel like you're doing something-- makes you feel like you're doing something. Maybe it's threading beads. Maybe it's coloring in. Maybe it's embroidery. Something that's very small, very calm activity, so you are actually resting as much as you are physically able to rest. But you're still doing it just a little bit at a time, little thing. And then at the end of it, you're like, ah, look, a thing. I was productive. But you weren't really. You were resting. Shh. JOANA LIBANO MONTEIRO: That's fascinating. I don't think I have played "Sims" in like 10 years now, but I do play other games. So I can see how that could be a very interesting one to go back to. Question from Alessandra-- "Jessica, love your story, love your resilience. I know film and TV, as an industry, are challenging to break into to say the least. It's so great to see how you managed to make it your own path. If you wouldn't have found your path in YouTube and content creation, what else would you have loved to do?" I guess this is the plan B from before. JESSICA KELLGREN-FOZARD: Ooo. Well, obviously be a "Blue Peter" presenter, obviously. But if they wouldn't have had me, the other thing that I would really love to do-- and would still love to do actually and hopefully will get to do at some point-- is write books. I really would love to write books for children, both the under sixes, but also young adults. I want to write a book series about our dogs and how they live in a little family. And it has two moms, and also include some disability in there. And just make books that are-- I think because when I became disabled and I got given these books about disability, and they were so depressing, and awful, and very much that kind of book of the week vibe, where it's just about this one issue. And there's just no joy in it. There's no happiness. It's just to make people who do not have disabilities understand disabled people, but there's nothing about how you can be disabled but also have fun. You can be disabled but also have love in your life. You can be disabled but also do whatever you want to do with your life. There is the books that I'd like to write, just the idea that you can live your life and be happy. That's what I'm going to write. JOANA LIBANO MONTEIRO: I cannot wait for those books to come out. And in that context of the books, there's a question from Mariana. "Thank you, Jessica, for being such an inspiration and sharing your story. As a fellow mom, I would like to know how best you are planning to educate Rupert on disabilities. Any recommendations for me to talk to my daughters about this and maybe any other books that are more inspirational and positive than the ones we traditionally would have?" JESSICA KELLGREN-FOZARD: Hmm. Yeah. OK. Oh wait, sorry. Can you repeat that question? Are we on question one? JOANA LIBANO MONTEIRO: I will say again. I will also repeat that, "You're an inspiration and thank you for sharing your story. But as a fellow mom, I would like to know how best you are planning to educate Rupert on disabilities. And any recommendations for me to talk to my daughters about it?" JESSICA KELLGREN-FOZARD: Oh, sorry. I think I got too deep into thinking about my answer there. And then I was like-- right. Yeah, so first thing is that I have a lot of friends who have disabilities. So that's obviously one way that Rupert's life will be opened to disabilities is that there will be people in his life around him who have disabilities. And we're going to be very open and discuss those with him. I think that one thing I found quite difficult growing up was that people tended to assume that I understood things, because they had just been in my life the whole time. And I think this happens with children a lot, the way that people assume you understand the relationships between people because they've always been there. So obviously you understand which cousin belongs to which aunt, because you've always known them, right? And I was like, well, no, I don't. I have seven aunts, and I have 19 cousins. How the hell am I supposed to remember which goes with which? I don't know. Also, they look quite similar to be honest. I needed a refresher course occasionally. So Claudia and I were talking about this, and we thought that, with him, we can't just think that he is going to, by the process of osmosis, somehow understand everything we know. We can't just think, oh, it's OK. Because we have this level of understanding ourselves about LGBTQ+ history, because we have this level of understanding about disabilities, what we should say, the correct way to address people, things, the correct way you should talk about mobility aids. That we should just think that, yes, he'll definitely understand how to talk about that, we shouldn't say that. We shouldn't think that. What we should be doing is having open and honest discussions and conversations with him about them. Now, currently he's only three months old. But yeah, I have actually had a conversation with him about why I'm lying in bed right now and why I'm not able to help him as much as I normally would do. And I've said, I'm really sorry. I wish I could be doing a nappy change for you right now, but I can't. Because unfortunately, I've injured my back, and that led to some semi paralysis. Now, semi paralysis means-- because, yes, I know, he's three months old. But, hey, why not? Maybe it'll sink in. JOANA LIBANO MONTEIRO: Starting early is important, so why not? Why not start early in that area as well? We have a bit more than five minutes and many questions. So for the final ones, what I will do is we'll go through them fast so that we can tackle all of them hopefully. So question from Lauren Jones-- "I'd love to find more disabled creators as it's so underrepresented in traditional media. Can you or anyone recommend any disabled creators?" JESSICA KELLGREN-FOZARD: Yes. Yes. OK. That is an excellent question. Let's just throw some good ones out there, although I am so sorry. This isn't going to be a highly curated good list, because I'm throwing them out there. People who are amazing-- Little Pine Needle, who makes wonderful garments. Really love. Talks about different sewing techniques on YouTube, really interesting. Is currently making a bra on Instagram. And I'm like, oh, I'm intrigued. I've never thought of hand sewing my own bra before. And now I'm like, oh, wow. Also uses a mobility aid, has some really cool videos about that. Annie Elainey-- really excellent. I think is Annie Segarra on Instagram, might be wrong. But I think it's Annie Elainey on YouTube. Does really amazing work in the Latinx side of YouTube, as well as disability YouTube, and also LGBTQ+ YouTube. Brilliant. Stevie Boebi, who has just started talking more about her ADHD, which she was diagnosed with as a really small child, actually at the age of two, but hasn't talked about openly online since recently. So that's really interesting. And is talking more about her diagnosis. That's great. Oh my God. I don't want to use up all the time talking about amazing people. But yeah, check those three out. I'll do a follow post on Instagram. I should do that. JOANA LIBANO MONTEIRO: That's a great idea. That's a great idea for others to also access folks with disability. Question from Mikhail-- "Hey, Jessica, you once said in your video about Quakerism-- that you avoid arguing with people. So I would just want to know how you are able to avoid getting angry when people disagree or disregard things, like your sexual identity or, in general, disrespect your opinion?" JESSICA KELLGREN-FOZARD: Yeah. Yeah. It's true. I do indeed avoid arguing with people. I never argue with people, because I feel that it brings nothing to any situation to get angry. Yeah, I'm of the mindset that a negative emotion brings nothing but negativity to myself and doesn't ever win me anything. So if I'm trying to have a reasoned debate-- I know, I hate the idea that we have to be rational, and calm, and so like nice-- I'll call it ladylike-- to ever win a discussion with someone. But unfortunately, that's kind of how the world works. So I don't ever raise my voice or tell someone that their opinion is stupid, because that's not going to help anything. However, I try very hard to dismantle their argument and very politely and helpfully show them where they may be possibly incorrect. Because from past experience, I've learned that people really only change their mind when they feel like they're changing their own mind. Unfortunate. You can show people videos, which I think is a really great way. People like to watch videos. And then feel like they found the video, and then it changed their mind. Not that the video changed their mind but that they were able to change their own mind from the inside. Not that you did it by sending it to them, they did it themselves. I think it's always very useful to know that you can do it that way. Send them lots of articles, and then they can make up their own mind. JOANA LIBANO MONTEIRO: Why not win an argument through deconstructing the other side? If the world were to follow your advice, we would have certainly way less conflict. Just saying, maybe listen to Jessica. JESSICA KELLGREN-FOZARD: It would take forever, though, just to be clear. It would take forever. JOANA LIBANO MONTEIRO: True. True. That's true. But we could at least start. We don't have more time, but, Jessica, it has been a true honor speaking with you today. Big, big thank you for taking the time and for sharing with us your incredible journey. And to everyone in the audience, I hope you felt as inspired as I did. Thank you so much, Jessica. JESSICA KELLGREN-FOZARD: Thank you so much for having me. JOANA LIBANO MONTEIRO: Bye. [MUSIC PLAYING]
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Channel: Google
Views: 27,665
Rating: undefined out of 5
Keywords: #IamRemarkable, Allyship, Driversity, Inclusion, Selfpromotion
Id: QHLNb7qOQyw
Channel Id: undefined
Length: 59min 16sec (3556 seconds)
Published: Wed Sep 15 2021
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