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Redefining Blindness: Lucy Edwards on Disability, Beauty, and IVF

  • Writer: Peta
    Peta
  • 13 hours ago
  • 23 min read

Lucy Edwards is a broadcaster, journalist, and one of the most recognisable blind content creators in the world. In this episode, she opens up about losing her sight at 17, building a career online, and why she proudly says, “I love being blind now.”


We talk about the grief of going blind, how she found confidence through storytelling, and her latest venture: launching the accessible beauty brand Etia London. Lucy also shares her IVF journey and the decision to screen for the gene that caused her blindness—a deeply personal and nuanced choice.

This is a powerful conversation about disability, identity, and what it means to take control of your narrative.


Connect with Lucy Edwards

 

Connect with Peta Hooke

Instagram: @petahooke



Episode transcript:


00:00:03

Peta: Hello, and welcome to the I Can't Stand Podcast, the show that explores what it's like to live with a disability. I'm Peta Hooke, I have cerebral palsy, and I'm your host. Every week I sit down with remarkable people who's lived experiences and perspectives are reshaping how disability is understood, not just within our community, but by non disabled people too. Today's guest is someone I've wanted to speak to for a long time. Lucy Edwards is one of the most recognizable disabled content creators in the world. She is a broadcaster, a journalist, and an entrepreneur. After losing cares site at the age of seventeen due to a rare genetic condition, Lucy has built a career by sharing her life online with honesty and from her How does a Blind Girl series to launching her own accessible makeup brand, essiea London, Lucy is a leading voice in disability advocacy. In this episode, we talk about what it really took for her to get to this point, from the grief of going blind to the power of telling her story on her own terms. She also opens up about her IVF journey and the deeply personal decision to screen out the gene that caused her blindness. Let's get into it.


00:01:44

Lucy: Yes, Hello, Peta. Thank you so much for having me. So. My name's Lucy Edwards. My pronouns she her. I have long red hair and it's just below my shoulders. I'm wearing like a minky top and I'm sitting in my podcash gudio here in the UK. And I'm a broadcaster. I'm a social media content creator and I also am about to launch well next year in February, my Accessible make it brand Etia.


00:02:17

Peta: I'm so excited to talk all of the things beauty with you. I love beauty, so thank you so much for being here. Before I begin, I just want to say that I am a white woman. I have brown here down to my shoulders, and I'm wearing a cotton shit that is moved today.


00:02:35

Lucy: I love it.


00:02:38

Peta: So I'd like to begin, probably at the start of your disabled story, which is the twenty second of March twenty thirteen, the day before your surgery. Do you remember much about that day and how you spent that day. Did you think about what you wanted to Do that day?


00:02:55

Lucy: You know what, because it was such a whirlwind and throughout the whole of my childhood. I thought that I would just get my site back if I got surgery. I was in like fight orf flight coping mode. So I remember driving down with my auntie and my mom to London and Morefields Eye Hospital is at the center of excellence within the UK, and that's where I go for my treatment, and I remember just thinking, Oh, this is really sad.


00:03:31

Lucy: There's no sort of book written about how you cope with things like this, and it's such would be such a traumatic experience for you because your identity is totally changing. But as we know today, you're one of the biggest influencers in the disability community today. You're such a positive example of what it can be to be a disabled person. So I commend you in all the things that you do for the disability community. Thank you so much, Like I really appreciate it. And while I know that like disability can be sometimes connected to trauma, I think it's really important that you show and have shown the true breadth of what it is to be a disabled person.


00:04:19

Peta: I'm totally with you. Thank you so much, honestly, Like it means so much to me, especially coming from like our community, the amount of times that I have to dig deep and think, oh wow, I don't feel that great today, but you know, it'll help me to lighten the load, to just tell people what I'm thinking and feeling about my own disability. I mean, at the start, that's what it kind of was for me. Back in twenty fourteen, I started posting with my late guide dog, miss Olga, and we honestly were just doing it, me and my boyfriend now husband at the time, to find a community because I didn't know anybody in real life that had a guide dog always going through anything. So and it kind of has grown into well not kind of, it has grown into a business, which is insane. But I still love it exactly the same as I did all those years ago. It is really amazing. How did you go about navigating the mental health of losing your site, Lucy? Were you did somebody sit you down in your medical team and talk about how you navigate this big change in your life or was it more a day to day adjustment.


00:05:33

Lucy: Day to day adjustment. I would say it's sad because there's not a lot of provision within the NHS and things for site loss advisors. I know the Royal National Institute for the Blind in the UK have a campaign to place ET closers, which are site loss advisors in clinics, and the R and IB have been a massive help to me and I'm now an ambassador for them. How I coped I actually had a really bad mental breakdown. I was on really strong antidepressants from around I'd lost my sight at seventeen, and I finished my A level studies with an extra year, which is like higher level before I go off to university in the UK. I think because I was coping with that, and like coping with my exams, I wasn't really thinking about site loss in the same way. So then when I started to go to university, I did get into law school. I got ASTRBB in the end and got into law school. I actually dropped out of university because I just felt so mentally and well, it kind of hit me all like a ton of bricks, like all at once. Yeah, I felt like I couldn't quite be me. So I had a year out just to sit in my bed, to be honest, and eat a lot of ice cream. And I don't mind admitting that because I was so low and so ill, my parents were so worried about me that I would just kind of sit in bed like a zombie and sleep. But I think I needed that adjustment because I didn't really kind of think about me actually being blind because I had all of these exams that I had to do. And then when I was like, oh, I actually probably need to go to therapy now and understand who I am, that's when I kind of let in the fact that I didn't. I don't know. I think I was dealing with a lot of internalized ableism, a lot of stereotypes of blindness that I felt like I did take on through being a sighted person, which I felt was so wrong. But then I started to like Google and listen to Ted Talks, and this is why I always talk about the late Stella Young with her coining the term inspiration porn and that Ted talk. I just I was so so amazing for me to look at when I was in bed and just grieving, and then it was me taking on, like reading about the social model of disability and telling the world the world needs fixing, not me as an individual. And then I applied for the BBC, didn't get in for the first time, and then I kind of went to and did at age twenty one, and that was kind of then transformative for me, and I am sitting right here now.


00:08:07

Peta: Thank you for being so honest. First and foremost, it's very refreshing to hear someone speak about how difficult the transition was because I think, and I want to preface this by saying that I was born with my disability, so I don't have a before or and after. But there's such a pressure to be like, oh no, I was fine, it was fine, I'm fine now and living with a disability is great and there's nothing to complain about. So thank you for being so honest, because I think we all know it's a bit more complicated than that.


00:08:44

Lucy: I agree with you, and also it doesn't just because I had lived experience then of really being like, what is happening to my body? I think it's really important to say I do love being blind now, and people are like so shocked how I've got done a full three sixty one to eighty whatever I want to call it to how I used to feel. But I think it was that grief, it was that expectation. It was that, you know, believing what I once was and now what I've become. And grieving that sighted lucy that I no longer and then also the stereotypes of what people placed on me. So you know, when I'd go into a cab or a restaurant and people would refuse me and guide dog miss Olga, you know, I would take that to heart and that would be a grieving process for me as well, because people saw my disability before me and I hadn't obviously experienced that for the first seventeen years of my life. But I think when I saw then when I went to the BBC and saw like Damon who is you know, head of Disability at BBC News and he is blind as well with a guide dog, and I worked with other kick ass blind journalists, I was like, Okay, I love being blind. This is really cool, but because you don't see it, it's it's really hard. But I thank you because I really appreciate the fact that you said that. I'm quite transparent. I really pride myself and just not sugarcoating things, and that.


00:10:09

Peta: Is really illustrates the importance of community and being visible. I think so many people can feel hesitant to share their story because they're worried about the backlash or the judgment by people who don't understand. But for those of us in the disability community, I don't think you can underestimate how powerful it is to have people illustrate that things are.


00:10:35

Lucy: Possible absolutely and also know that I have been there, you know, I acquired my disability, and whether you have a disability, whether you're struggling, now that there are times where we just survive, not thrive. There are days even now where I'm just surviving. I have no energy. I've had a massive day at work, I've done loads of new routes. My brain's like, oh my gosh, you just need to sleep for a day. And that can be my reality as well as owning two businesses, working a lot, loving my life, being successful. Those two both of things can be true. And I think what is daunting and what I used to do is look at people online and think, oh my gosh, they've got it all together. You know, how did they get there? Or oh, it's all right for them. It's about still understanding that disability can be all overwhelming, but knowing that I don't know, we have more hurdles, We're more resilient, I feel, as a community, and when we find a way around something. We're the best asset to have in a team.


00:11:47

Peta: We have to be resilient, we have to think outside the box because we're faced with challenges on almost a daily basis that non disabled people just don't face. They can be in autopilot. They don't have the funderability to always think about safety like disabled people. Only we truly understood how much emotional labor it takes to be disabled every day, literally preach it.


00:12:15

Lucy: I'm with you, Hun.


00:12:19

Peta: So, as you've mentioned, you are a massive force on social media, and you know you're sort of recognizable I would say now within the disability community and the non disabled community as well. Does it feel different posting on social media today versus when you've first started? What are your objectives today? When you post?


00:12:46

Lucy: I have like quite a varied strategy in that a lot of the time I am just posting my lived experience and I'm very much thinking about all of the little lucies out there that are losing their sight. But I also am aware how does a blind girl or my I'm blind videos reach a wider audience? Because I know from the comments section if it goes viral, people are like, oh my gosh, how do you do X, Y ORZ and you can't see And there is a section of my brain that says, you know, I'm not just talking to the disabled community here. And I know that my videos get downloaded and shared within classrooms and with education settings. So it didn't used to always be like that. Back in twenty fourteen, I would just literally upload me and Olga like dancing or like mucking her out in the kitchen, or like just chatting. Didn't even write scripts then really, and it would do well, especially like my first how does a Blind Girl doer own makeup? Video? That was the one that I first went viral on YouTube and then literally several years later, I went on TikTok in twenty twenty and how does blind girldo? And Makeup two got twenty million, so it launched both of my channels. But yeah, the first one back in twenty fourteen, I remember me and. My husband, well what boyfriend? We did a voice over and you can hear my mother in law's washing machine in the background. So and that went viral. Whereas I don't. Know I would actually it wouldn't do the same today. You know, I definitely think of my content now as like more of a strategy, and that seems very like run focused. Like not all the time. I'm very much like what do my audience want to know? But I think I have a team now and I also have people that look at my content for education, So we're always thinking of those pillars like I need to talk about education in a two week cycle, I need to do my makeup, I need to think about you know, all these different pillars of like what who I am online and how I present myself in order to help the most people.


00:14:53

Peta: Is TikTok as accessible as it could be? Is there anything that you'd love to change?


00:15:00

Lucy: TikTok's okay. It's got a lot better since the early days, like in twenty twenty when we first started posting. I still have to delegate quite a lot to other team members. It's very clunky. It had an update like two years ago where I just started to not be able to read the comments. It seems to have got better now, but you constantly just don't know with all the different updates whether it's going to read with my screen reader or not. So to answer your question, you can point and shoot and you can use voiceover to do a video, but I would say the text ability to move the text around the screen and different stuff isn't as good as final cut pro So if you are doing it completely blind, I would recommend editing in final cut and then uploading separately, or spending time with an access work or someone to help upload for you knowing the principles of how to light yourself and know where the light is in the room. You don't have to be able to see the light in order to know those principles and get yourself in the right angle and ring. Maybe even you could take a photo and send it to be my eyes an ask AI whether you're in the frame, or you can ring a service like IRA which is especially trained volunteers that can help you point and shoot as well. So I just love technology, as I always say, Like at Radio four, I used to work and report and got a lot of advice from Piter White, who presents in Touch, and he used to say to me, Loose, it's so easy for you guys to be blind in this day and age. You want to try being blind a few years ago, like several years ago. So I never take it for granted, and I think it's the best time to be blind.


00:16:43

Peta: One of the quotes because I obviously did a lot of research about you, Lucy, and of course I watch your content. So one of the quotes that has stuck with me was my best day of my life was the day I couldn't see Instagram anymore to compare and myself. Could you speak to that?


00:17:02

Lucy: Absolutely so instantly. I know there's a comparison culture within our society today, and I feel it's so harmful and toxic, and I think that's like a lot where a lot of our mental health struggles come from. And I love that I can just read people's captions, understand people's audio descriptions when they add them, obviously, and interact with Instagram in a completely different way that people don't. So obviously there are annoying things in if the you know, if it doesn't if there's no labeled buttons and different stuff. But I think ultimately I am really glad that I can't consume stories or watch someone's i don't know, Instagram photo be photoshopped to oblivion and not understand whether it's been aied or not. I think I'm really glad that I can be elevated out of that, and I think my mental health hasn't suffered because of it. Like, I feel really happy in my own skin and my own body. I think that's why I'm able to post like such. But I don't know, like videos on just my own body. Like I know that I stand there sometimes in my pants, and that's fine because I like myself no matter whether I'm slimmer or you know, I think it doesn't matter whether I've got stretch marks or not, because I just I love the body that I'm in because it works. And I'm always so grateful that those parts of me work because I do have quite a significant eyesight issue, and I know what it's like to lose something, and I'm celebrating everything i haven't lost. I think there's a part of me that wants to rebel against that traditional stereotype of beauty and what beauty means. I think I think stretch marks are beautiful. I don't know why we should be getting like all sorts of stuff to our body. It doesn't make sense to me. I think bodies beautiful, you know. I want to be the representation I'm out there anyway. I talk so much about my everyday life. I'm it's like I'm standing in a bikini, Like, does it matter that I'm standing in my pants? If it makes someone else feel better, that's what I want to do. And I don't know, Like my body's just a normal body, even though my eyes don't work, And this is what I always say, like, through no fault of my own, my eyes stopped working and people just have to see me as Lucy.


00:19:34

Peta: You've said in the past that if you had have had better representation of disability growing up, the adjustment to your oneness would have been easier. What representation do you believe is still missing today?


00:19:48

Lucy: I think we've got a lot better as a society in representing disability because of social media, but I think in traditional forms of media, so like traditional Telly, I think we always need to make sure there's lived experience behind the decision making processes. Even just in my work in the past two weeks, there's been things projects that I've had to drop out of because they weren't authentic. They didn't you know, consult people with lived experience, and I just can't put my face on things like that. And there's constantly, you know, constant brands that do approach me and if their their website isn't accessible. Unfortunately. I'm happy to consult behind the scenes on how to make it accessible, but I can't, you know, be the face of that brand if they if they're not gonna be authentic with my community and aligned. There's a lot of advocates now out there, like myself, like yourself, putting out amazing content like this that are speaking directly to our community. So and we can get followings, we can produce, edit upload on our own, and I think that's where more meaningful because people we're going to be the people that actually change the rhetoric and the misconceptions around it ourselves, and unfortunately, I think it has to come from the community. I mean, even the Pan ten commercial, I was the face of two Pan ten adverts and the lady who hired me, who is such a good friend of mine within p ANDNG herself, she has blindness and you know she's amazing. But within a lot of companies there still isn't a dedicated person who is a disability lead. So I guess the answer to put a little neat bow on it is that there's a lot of tokenism out there and people don't often know that they're being misguided with what they're putting out until it's actually out there, and it's just such a shame.


00:21:49

Peta: Very well said.


00:21:50

Peta: I totally agree with you. It's all very well to put us at the front of the camera and we appreciate it, don't get it. Don't get me wrong, but it would be nice to also know that there are people working with even the company, that have lived experience too, and that's where there's a real gap, particularly here in Australia. You mentioned, and you quite rightly are a very accomplished businesswoman, Lucy. You're creating a beauty line and I'd love to talk to you more about it. You started through a Catalyst program. Talk to me about that.


00:22:26

Lucy: So the Catalyst was and is a venture like a new incubation New incubation ventures part like the investment arm of Esdale Order, and they were hosting a competition to pitch your business idea in order to get grant funding for two winners. Initially, actually there ended up being three and I was the third person and we split the grant funding between us. All and I had to go to Paris last year in October and we presented a pitch doc and we had to do a seven minute presentation. I did it with my business partner, Clo, she's my manager as well, and we stood in front of twenty judges within the prestigious names within the beauty industry in Paris and presented my idea and we won the funding. So since then, when the money was plopped in my bank account, it's been a whirlwind of hiring our head of product Chris, understanding like all the different things about the beauty industry, knowing that the amount of money that you need to produce a makeup brand is crazy, but then also just making sure that the brand values and Ettia is always going to be honored. So Etia means well, it's derived from the name Lampetia, which she's the goddess of light, and it means inner shining. So everything about Etsier is about inner beauty and talking to that inner self. And it stems from me being seventeen, losing my eyesight and being in front of my makeup mirror and not being able to see my reflection and feeling so sad because i'd, you know, dip my hand into my makeup bag and just have no idea what I was holding. And poor husband, well he says he doesn't mind doing it, bless him. But every time I go to Boots or super Drug or Selfridges or wherever, he's always spending hours brow labeling all of my products and has done for twelve plus years now with me, and I just don't want it to have to be that way anymore. So when I won that grant funding, it really was the start, the catalyst for wom chair of me doing this, and we launch in February with our first product.


00:24:50

Peta: So exciting. My goodness, you must be pinching yourself. You're going to be the disabled version of Selena Gomez.


00:25:01

Lucy: Oh, bless you. That's so sweet you just said.


00:25:03

Lucy: Honestly, I was crying so so much when I got that funding, and even now there's so many hurdles to be a business owner, but you know, I just every single day I am so honored to be doing what I love. Ettia is very much like a labor of love at the moment. But I've had this idea in my mind for like twelve plus years, and I'm finally doing it. I actually got samples about a month ago and I've been testing them and holding them in my hand, and yeah, it's a long process, but it's so cool, amazing.


00:25:36

Peta: I presume you can't tell us any more than that, So I will be looking forward to next year, and everybody please make sure you go follow Lucy if you're not already, because will certainly want to get behind you and support.


00:25:50

Lucy: Thank you, lovely


00:25:52

Peta: Recently shared the decision to undergo I've yf Now you might not know this, Lucy, but I froze my eggs last year and it took three hundred and eleven days to gain approval. I had major ableism experience. It was one of the hardest experiences of my life. If I'm big honest, it was nothing to do with my fertility, thank goodness. It was to do with gating or hoist. I can't stay, walk or trades fit myself, so I needed a hoist to lift me from my wheelchair to the bed. So I'd love to hear about how you're finding the system.


00:26:29

Lucy: That's crazy. I'm just I'm so sorry. That hurts my soul. I cannot believe that such a simple ask is met with that much ablism. It's hard, isn't it. It's like I know that there's so much ableism in front of me. You know, even just my experience at the doctor's over the past several years says that this isn't going to be easy, and it isn't easy for us disabled women. I come out and like in camaraderie with you. I think it's just so lovely that we can share these experiences because it just feels so earth shatteringly horrible and heart crushing. I've lost a lot of weight, which means that unless you've got a BMI of thirty within the National Health Service over here in the UK, they don't think that the treatment works as successfully. So I did that and as of I think it was June or July. I can't remember when I've hosted the video. I messaged my clinic and they emailed me two days ago and they said, we are opening up the clinic in a few weeks and we will give you appointment in due course. So it's literally imminent for me. But I did have like the first standard appointments when they were signing me up for the waiting list for IVF and they said that you're going to have a questionnaire and I don't want you to be alarmed, but the questions might be a little offensive on the form. I'm like, what do you mean? But we will ask about your ability to parent because you have your blind And then I don't know, like that sets my mind spiraling. And he was very apologetic. I think he thinks it's a very archaic form, but I just think just the way that it's set up, it just triggers me. I haven't even read the form yet, but I so, no, it's not going to be screen reader accessible, but next few weeks we'll let me know about all of that.


00:28:28

Lucy: And then also, you know, my best friend's a midwife, and she says things like we don't have any specific training on disability. I'm like, right, so when I come in with my guide dog, what are they gonna say? And you know, I've had so many different idea you know, I know it's all to come. Also, there is a lot out there of like even only in the past few years, like sterilization within the disabled community, and oh, it's just it's honestly horrendous. So if we can if we can win and actually go through with the process and and document it. I think this is why I just adore social media and why it gives me so much hope, because there are people like us out there. Yeah, so it's amazing. I'm so glad that you've succeeded. And yeah, I think we're going I always tell myself, we go through the hard moments to hopefully make people not have to go through it again.


00:29:20

Lucy: Absolutely, that's for all I have to hope, right at least, all this hard work can't be in fine, has to be for somebody else's benefits. Literally, So you are so honest, as I've said on social media, but you actually flawed me a little bit with what you spoke about a few months ago about IVF and the process of screening up certain things you know IVF. I'd love to speak to you about that and why you decided to share that as well publicly.


00:29:55

Lucy: Yeah, it's very vulnerable because it's so nuanced for me, so so nuanced, I think mainly the main reason why I'm screening out the gene for my blindness is number one in today's world. I don't necessarily want to have a miscarriage if I don't have to. It is a very very very high rate of miscarriage for me. If I could say to you tomorrow, maybe I have a condition like retinitis pigmentosa or another blindness condition that I pass on to my kids. I'd be like, Stella, I don't need to do this process. It's amazing. And my best friend Reese and his partner soph who is cited Reese is blind, they're not undergoing any kind of fertility treatment because his sight loss is sight loss, you know. So I think maybe for me, it's very much about the miscarriage side of things. It's very much about my own body. It's not necessary ver really about removing. I'm still like a question mark. I'm like, oh my gosh, I'm removing a part of myself. But my grandma had nine miscarriages and I know how much trauma she went through and I don't have to put my body through that. So that's the main thing. Really, it's not really even about removing. It's about preserving the body that I have right now and not putting myself through it. And if I can choose to do that, then yeah, that's what I'm doing.


00:31:31

Peta: One hundred percent. And I think that's why it's so important to always approach things with kindness rather than judgment, because I'm sure if people didn't fully appreciate your perspective and where you were coming from. That video could have gone on the wrong side of TikTok very quickly.


00:31:52

Lucy: Absolutely, Yeah, it's such a hard thing to talk about. But then equally I wanted to talk about it because it was hard, and I think that people can come at me like why would you remove your blindness? You're amazing. I know that I'm amazing, and I know that I wouldn't want to change a thing about my story. I just cannot guarantee with my genome that it's going to be the same as my experience if it was. I always say, like Stella coffee paste, like I love being blind and I love disability, but I just I don't want to have to miscarry. I just don't. And maybe that's like I don't know different of me to admit, but I think if I don't, if I don't have to go through it, then I don't want to.


00:32:41

Peta: You know, well said, I totally agree with you. To your body. You deserve to do whatever you feel comfortable. Thank you so much for talking to me today, Lucy. It's been such a pleasure. I want to end this conversation on a question I ask everyone. I guess I started the Arkansan Podcast in twenty twenty one, and it was because I was sick of strangers asking me stupid questions in public. For me, it was always what happened to you? And I never really know how to answer that question, because technically I was just born like this. But of course, then regardless of how you explain it to people, your life just comes across as a tragedy. So I want to ask you, what's one question you wish people never asked you.


00:33:35

Lucy: I wish we got to a place within our society where people didn't have to ask me how I pour a glass of water. They just expect that the first question would be is you know what job do you do? Not how have you even got a job, or you know, how do you use your phone? There needs to be an expectation that, like you said, I really resonate with you know, how did this happen to you? It's like it's like fair game to ask us whether all about our disability, even though we didn't necessarily consent to that. And I think that's why I started social media too, So I love the ethos of your podcast. I think ultimately I hope that people watch my videos and we come to a place in society where we don't have to answer those basic questions. And I know sometimes like I really want to just say that I knew nothing about disability until I became disabled myself. So maybe sometimes it is coming from a really genuine place where they have no lived experience and they just are curious. But I think when you live it every day and you get oh, your guide dog can probably smell my dog ten x times a day, sometimes it's like, oh my god, I don't want to I roll, but I'm I rolling so hard in my mind right now.


00:34:53

Peta: Thank you so much for listening to this episode of the I Can't Stand Podcast. If you enjoyed today's commas, the best way you can support the show is by sharing it with a friend or posting about it on social media, and if you have a moment, leaving a rating and review helps more people find these stories.


00:35:14

Peta: Don't forget. You can always send me an email I Can't Stand Podcast at gmail dot com, or you can follow me over on Instagram at Peterhook. I'll see you next week. I would like to respectfully acknowledge the wondery and Bunner wrong people of the Call and Nation of which I record the podcast today, and I pay my respects to both elders past and present Along with and especially to those in the First Nation's communities who are disabled themselves

 
 
 
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