16th April 2025
bbc.co.uk/accessall
Access All – episode 156
Presented by Emma Tracey
EMMA- Do
you know what, one of my boys came up to me the other day and said, ‘Mum, I’ve
found a YouTuber that I think you’re going to love’. And I said, ‘Who’s that?’.
And he said, ‘Um, she’s blind, I think her name’s Lucy’. And I said, ‘Oh, Lucy
Edwards, I know her’.
MUSIC- Theme
music.
EMMA- Lucy
has over 2.8 million social media followers. Her content has been viewed over a
billion time. I mean, a billion, I almost never get to say that word.
Presenter, content creator, author and friend of Access All, she lost her sight
at 17 and she’s just written her first children’s book, Ella Jones vs The Sun
Stealer. And I’m delighted to say that Lucy Edwards is here to catch us all up
on her recent shenanigans.
LUCY- Thanks,
Em. It’s always lovely to speak to you, love.
EMMA- But
tell me, do you think a billion people will read your new book?
LUCY- Ah,
hopefully.
EMMA- Ella
Jones vs The Sun Stealer.
LUCY- Fingers
crossed. I mean, maybe not a billion, but I always like to fake it till I make
it, so if I say it then hopefully it will
happen [laughs]. I love it because we’ve got braille on the cover and
there’s an audio description. Our main character, Ella, who’s lost her sight is
standing there very proudly with her guide dog, Miss Maisie, who’s based on my
guide dog, Miss Molly. And it’s got Miss Maisie here on the front cover and has
a fireball in the background, and I just think oh my gosh, I would have loved
to have seen a fireball on the front cover of a children’s book when I was this
age, or have it audio described to be rather. And then, yeah, we’ve also got a
NaviLens code. So, I don’t know, I’m just really proud of it. And I’m sitting
here like, oh my god, it’s actually happened [laughs].
EMMA- Oh,
well you deserve it absolutely.
LUCY- Thank
you.
EMMA- Tell
me about the story?
LUCY- We’ve
got Ella. Ella is just a lovely little girl who lost her eyesight a couple of
years back. She’s 12. And I didn’t want her to be a superhero; I wanted the
world around her to change because I really subscribe to the theory of just the
social model of disability where I want the world around us to be fixed and not
us as a person. There was a lot of internalised ableism that I battled with as
a young girl when I was Ella’s age and I always felt like I was the burden and
was the thing that needed to be fixed, especially when I was going to all those
eye hospital appointments. So, yeah, Ella for me is that kind of representation
that I want, and then the world around her plunges into darkness. We’ve got
this god of old that hates humanity and means to curse us. Animals can still
see though, so Miss Maisie, her guide dog can still see. And basically Ella,
her best friend Finn, her sister Poppy and Maisie go on these missions to try
and get the world to have light again. And we see this inner turmoil of Ella
really caring for her friends and family, leading the way, being really
independent, strong, resilient; all of these things that I feel us blindies are
[laughs].
EMMA- Absolutely.
Well, it’s nice to flip the script and have the blind person be in control. You
wrote it with a co-author, Katy Birchall, what was that process like of
writing?
LUCY- Oh,
so cool. I’ve had this story in my head for, like, ten years. I’ve always
wanted to write about the world going dark and there being a blind protagonist;
it was just how I would do it. So, first of all before I even spoke to Katie I
had this massive Trello board with loads of different words, imagery. So, I had
a section where it was, like, colours are feelings, and then I wrote down what
red meant to me, what yellow meant to me. We’d basically have loads and loads
of calls where she’d bed out the story and be like, ‘Luce, maybe we need to
write X here or Y here’ and as we’d write every chapter together there’d be
different details about, like, so I would write all the bits where Ella had
those really independent thoughts about blindness and really bedding out her
character, and having these workshops almost on Zoom where I’d be like, well I
want Ella to think and feel like this. I was almost talking to Ella, it sounds
a bit weird, but I wanted her to be an actual human in my head before we even
started. Yeah, it was a lot of calls. I know Katy really well now, and she knows
so much about guide dogs and so much about blindness [laughs], so it’s really
lovely.
EMMA- Because
you have weaved in a lot of blind stuff, so the screen reading software that
helps us read what’s on our computer screens and our phones, and you’ve woven
in braille. What was your favourite blindiness thing that you wove into the
book?
LUCY- I
think I loved talking a lot about the role of guide dogs. And a lot of the time
I kept saying to Katy, ‘People think that guide dogs are satnavs’. But also the
relationship between Ella and Maisie, the little grunts that are based on Miss
Molly, my own guide dog. I just loved that a dog is such an opener in talking
to new people for the first time.
EMMA- And
it’s quite interesting because when you’re a blind person, and I’d imagine
particularly a newly blind young person, connecting with new people is probably
quite tricky, and a dog is a good way in to that.
LUCY- Absolutely.
EMMA- And
you’ve also been recently announced as an RNIB, Royal National Institute of
Blind People ambassador. What is that and what does it involve?
LUCY- Last
year we obviously had our election, and I did quite a few bits of content about
voting, how people can’t vote if you’re totally blind, not truly independently
where you wouldn’t be able to do the start to finish yourself really. So, it
was about advocating for that. And I thought oh, I’d love to work with the RNIB
more in highlighting that cause. For me, as well as doing that, I was the way
to actually a meeting and there was loads of street clutter and loads of lying
bikes just in the way and I couldn’t cross the road with Miss Molly either.
[Clip]
LUCY- Can
you not get past, gorgeous? I’m blind and I’m currently in central London with
my gorgeous Miss Molly, the guide dog. And as you can just now, I’ve just
crossed the road, I can’t actually get by. There’s lying bikes all over the
pavement Ollie’s just told me. So, I’m going to have to try and feel with my
hands to see if I can go past. But this is so bad, guys. Come on Molls, try and
find the way, gorgeous.
OLLIE- She’s
taking you back to the kerb.
LUCY- Yeah,
she’ll default to the kerb. Are you defaulting to the kerb, gorgeous? Yes, you
are. I don’t think she thinks we can get by together. Okay, I’m going to have
to take the reins. This is when I have to feel. She’s taking me to the kerb
again. I don’t think even with the best feeling in the world that there’s any
room for us to get by. That is so bad. But look at all of the bikes.
[End of clip]
LUCY- So,
those two videos were really successful, and then RNIB were saying to me they
have different campaigns. And I was just like I feel like I’ve been doing
social media for so, so long and it’s been amazing, but I think now there are
issues that we really just have to drill down to. And I think working in tandem
with the RNIB is just such a privilege in that they have a massive voice and I
just think we’re stronger together.
EMMA- I
would imagine they’re pretty pleased to have you as well. But I know what you
mean, getting in with the people who understand all the policy and to have
links in with parliament and stuff like that is a good thing. I bet you’ve been
asked before though?
LUCY- You
know what, it’s not a conversation. I’ve obviously worked with the RNIB, like,
social team and stuff before, but it’s never been a specific convo. I actually
approached them and I was like, I’d love to do it.
EMMA- They
bit your hand off.
LUCY- Yeah,
[laughter] bless them.
EMMA- So,
it’s the 200th anniversary of braille over this year, and everybody knows I’m,
like, a braille evangelist. What I’ve noticed on your socials is that braille
has become a bigger part of your life over the last year or two.
LUCY- Yeah.
I’ve learnt braille. I begrudgingly learning it at school, because we
had a visual impairment unit on my state school, and my braille teacher and I
was like, ‘Oh my god, miss, this is so uncool’. So, I did learn it when I was
younger, but I’ve always been really rusty. Like, I can never read it for
scripts or anything. So, especially in the pandemic at reading I would do it
over and over again. So, I think for me braille is amazing around the house,
labelling more things, and also screen readers are kind of the be all and end
all maybe for people almost to say our community is okay if we just have a
screen reader, when actually that’s not the case. I felt really ionate
about putting it even just on the front of Ella Jones vs The Sun Stealer, and
even though it’s like a sighted thing almost, it’s like an advocacy thing.
EMMA- Blind
people smell everything, we smell and feel everything, particularly food which
you can’t really feel all the time because it can be sloppy. So, you’re in the
fridge opening the Tupperware and giving it a sniff, if you’re like me and are
chaotic and haven’t brailled anything. I saw a video you did recently about
using braille to help you batch cook. And even after watching the video I
didn’t really understand your method. And obviously I’m always trying to be a
better person, and anyone my age and in my situation part of being a better
person is batch cooking for the week.
LUCY- Yeah.
EMMA- So,
I need to know your method.
LUCY- Yeah,
honestly I really try to batch cook [laughs]. I kind of got in it in January.
January is really quiet for me.
EMMA- So,
you started to batch cook.
LUCY- Yeah,
I did.
EMMA- And
you used magnets?
LUCY- Yeah,
so I just bought these magnets and then I stuck braille on them, and then I did
one, two, three, four and put them on this magnet board, stuck it all, and then
corresponding I have braille one, two, three, four on these little tags almost.
And I bought these silicon bags and basically it corresponds to my magnet
board. And I’m very proud of myself because there’s loads of different magnets
with all sorts, like lasagne, curry or whatever, and I just stick it next to
the one. And then the corresponding one in the freezer is like the curry that’s
there.
EMMA- Oh
okay, I get it now. This is genius.
LUCY- Thank
you. Honestly, I took ages doing it so yeah, I’m really happy with myself [laughs].
EMMA- Well,
next January maybe I’ll give it a try.
LUCY- There
you go. Love it [laughter].
MUSIC-
EMMA- Listen,
a little bit of a step change, Lucy, because something else you’ve been talking
about a lot on social media and have been really open about is trying to
conceive, and losing weight for IVF.
[Clip]
LUCY- [Running]
I’m blind and I’m on a fitness journey because I’m losing weight for IVF. And
this is how me and my husband run, we have a tether.
OLLIE- Yes,
like this.
LUCY- And
we’ve just done the furthest we’ve ever done. We’re just running, we haven’t
stopped. I’m so excited, guys, I’ve got 9kg to go until my BMI’s 30, so then I
qualify for NHS IVF. I’m so excited.
[End of clip]
EMMA- Is
it okay to ask you about that journey from wanting to have a baby and through
to now and what’s happening there for you?
LUCY- Yeah,
totally. I think yeah, I’m so happy to be. So, basically I have a really rare
genetic condition, it’s called incontinentia pigmenti, that’s how I lost my
eyesight. And it runs through the female line of my genes, so my mum actually
has IP although isn’t blind, and my late grandma also had IP and her sister
actually is blind in one eye I think. Anyway, it culminated within myself that
I am totally blind from it. But if I was male I wouldn’t have actually survived
with IP because it's on the X chromosome and obviously women have two Xs – my limited
knowledge [laughs] – and males have XY, so obviously if the X is affected then
the male miscarries. And my grandma actually had nine miscarriages. So, I think
it’s just number one, I don’t want to put my body through that if in today’s
society we can have IVF. And I think the other thing is that this condition not
only causes blindness but it can cause epilepsy, it can cause so many different
things, I guess I just don’t know what the future holds. And also I think for
me, just as a body thing, I’m just glad that we’ve got IVF. So, yeah I qualify
for IVF on the NHS, three rounds. But apparently once you have one round and if
that’s successful then the other two go away, so basically I qualify to have
one baby, which is lovely. But that just means I need to be a BMI of 30, and
I’m very open in that I need to lose 9kg. I’ve already lost 15 so I’m very
happy.
EMMA- Wow!
LUCY- Yeah.
EMMA- Wow,
that’s loads, you’ve lost loads!
LUCY- I’m
so excited, I know. I’m really happy about it. In the most positive, like, I wanted
a really positive representation of losing weight online because it’s all about
this blinking jab and weight loss and all these horrible things, and I just
wanted to lose it healthily, have lots of nice food, apples – I’m vegetarian –
talk about meal prep and just smile, and run [laughs].
EMMA- And
can I go back to a couple of things you said there? Because I can’t not really.
First of all about choosing to have IVF instead of going naturally due to the
condition that you’ve got, have you had any pushback from anyone in
conversations about that?
LUCY- Difficult
convos yeah. I mean, it’s such a personal decision, and I think I know that I’m
opening myself up for a possible like, designer baby discussion, when even
talking about this. But I think there’s extremes to that in that I know I’m
doing it for the right reasons to preserve my body and not go through that
miscarriage if I don’t have to. I mean, I might still have a miscarriage, we
don’t know what the future holds. But I think by opening up this it’s for me a
positive way to talk about that issue in that people these days with IVF can go
too far in understanding let’s remove this, or remove with all these different
conditions. I don’t know how far is too far, and I think opening up that
discussion is a good thing. But no, I have not yet had backlash.
EMMA- So,
what will they do?
LUCY- So,
in a couple of months I’ll be like, hi, I’m the right weight. Maybe it’s a bit
longer than that actually, but yeah. And then my consultant will say hello, you
need to come in with your mum and you need to spit in a cup. I’m like, okay,
cool, we’ll do that. So, me and mum are going to go in because we both have IP,
and then they make a bespoke test to find the gene within my eggs. So, they’ll
take three months to do that, and while that’s happening I am giving myself
these trigger shots to stimulate my follicles and produce lots of eggs and then
what they’ll do is they’ll get those eggs out of me via a procedure, and then
they will freeze the eggs for two months while they wait for the test. And then
as they go to unfreeze my eggs I think they’re going to make them into embryos
first with myself and Ollie, and then they will test them with this like little
tool thing; which again I sound very novice in talking about this, but that’s
my understanding thus far [laughs].
EMMA- Well,
you’re a few months out from it so you’ll know everything about it when it
comes to it.
LUCY- Yeah.
EMMA- That
sounds so interesting. I don’t think you thought I was going to ask you that
question today.
LUCY- No [laughs].
EMMA- Sorry. It’s just
if they didn’t remove the gene at all, if you just had a baby naturally how
likely would it be that the kid would have it?
LUCY- 50%.
EMMA- So,
only a girl would survive?
LUCY- Yeah,
only a girl. So, there’s four chances: first chance would be unaffected girl;
second chance, unaffected boy; third chance, affected girl – that sounds
horrible doesn’t it, that’s me [laughter]; fourth chance, affected boy – and
most likely the affected boy would miscarry or be severely brain damaged.
EMMA- Okay,
so they take out the embryos that have the gene, and then once they’ve done
that you’ve still got a 50/50 chance?
LUCY- Yeah,
50/50, down the middle. And I don’t know whether there’s going to be a boy or a
girl, and it’ll be very cool. And I’m excited and I’m very broody, Em.
EMMA- It’s fascinating.
LUCY- Yeah. I
actually did a podcast episode on my channel with Ollie, my husband, about the
whole decision of me thinking about IVF and understanding that it is removing
that part of me that makes me me, and having this whole, like, oh am I removing
a part of myself. I love being blind and I’m so positive. When I have conversations
to, I guess, maybe more the older generation who grew up in a very, very
different world, I think being blind, I’m very proud to say that I love it
because it’s taken me a long time to be able to say that. Maybe because I’m so
disability positive people don’t necessarily go, oh well why would you want a
blind baby. I think when my videos go more viral, so I did a video when I was
in a tactile museum in Japan of feeling different embryos, there was a lot of
people there who don’t necessarily know me, I get a lot of abusive comments
that go into my spam filter questioning why I would be a mother. I know that
I’m going to get a lot of abuse but I’m just going to block them. I’m going to
be okay, Em. All I think about is you and other mothers that have come before
me who are component, capable and resilient, and all these people can get in
the bin [laughs].
EMMA- You’ve
been broody for a while, bless you. It’s been a journey.
LUCY- It
has, I’ve just needed to lose weight. And to be honest, I’m very ready to be
healthy and happy. I’ve run round the track so many times in my local area, and
I can now run 25 minutes straight, and I’m so happy with my little self.
EMMA- You
wear a t-shirt with Blind on the back. Do you think I should wear one of those?
LUCY- Yeah,
you know what, I’ve struggled with that over the years. The amount of people
who go, oh my gosh, hi, you’re blind. But I love it on park run now because
people get to know you, and also they move out the way, because without that
they don’t see the tether between me and my husband and I have tripped over.
So, I kind of like it. It’s like another cane for me. And being fluorescent,
having the word blind it’s, yeah, it’s a part of me. It’s not the only part of
me, but I don’t care at this point. I am what I am.
EMMA- Why
do you love being blind?
LUCY- I
think it’s given me a voice that I wouldn’t have otherwise necessarily had. It’s
given me a perspective of the world that I wouldn’t have had. I understand
myself even more. I have better relationships with the people around me, that I
don’t know whether I would have delved into different communication styles with
my husband. My husband’s sighted, I’m blind, so we have to be very, very understanding
with each other’s world view because it’s obviously very different. Also being
very loyal to a lovely mobility aid, having that relationship, I never would
have known what it’s like to be with a guide dog. So many things.
EMMA- That’s
so lovely. I mean, something you understand and I don’t really as a blind
person is beauty and fashion. We’ve had this conversation loads of times. I
suppose I want a totally pure indulgence question: any recent beauty of fashion
blindy hack that you’ve discovered that you would like to share with poor old
me?
LUCY- So,
what I would say, Em, is that I think the beauty and fashion world has shut us
out, so it’s not your fault that we aren’t able to participate. The only reason
I know how to do my face is because I’m very, very lucky and I’ve got a sister
who is literally 15 months younger than me, and she’s willing to sit next to me
when I’m like, ‘Alice please! Please let me Facetime you’. And I think blindy
tip: holding the mascara wand on a stable surface; this is what I’ve been
doing. I actually poked my eye yesterday, and I was just a bit like, right I
need to stop using these really long, faffy mascaras. I have basically banned
them from my make-up bag. Now I’m literally just purely using travel size,
which I always preach anyway, but it’s just about the depth perception nearer
me. And I keep using, there’s like a silicon stencil now that you can hold up
to your eye that I’ve seen recently. But I am creating a make-up brand so we
won’t have this problem soon [laughs].
EMMA- Oh,
you’re creating a make-up brand?
LUCY- Etia,
E-T-I-A, which derives from the word Lampetia, which is the goddess of light.
So, it’s all about your inner self and feeling beautiful just the way you are.
EMMA- That
is a very cleverly thought through name.
LUCY- Thank
you, Em.
EMMA- Well
done, super-duper. What products? What tools? What’s happening? When?
LUCY- I
can’t reveal loads, but we want a spring launch next year. And I want it to be
accessible for everybody. I am very excited. I got funding from Estée Lauder
and TikTok last year. We went to Paris in the final rounds. It was fully
Dragons Den, in front of 20 judges. I was so scared. We got some funding,
although I am now learning that it’s a drop in the ocean for what make-up
brands need. But there we go, it’s very, very, very, very grateful and
gratefully received, and it’s a start. And I’ve now hired my first employee who
is the ex-head of packaging at L’Oréal and he’s amazing. I’m just absorbing
everything in his brain. And yeah, we’re just really excited. I want it to be
modular, I want it to be tactile, I want it to be all the things, and we’re
very excited.
EMMA- Modular,
what does that mean, so one eye shadow clicked into another? Or what’s modular?
LUCY- Maybe
[laughter]. I don’t want to reveal too much.
EMMA- If
you could create one accessible make-up product or tool what would it be?
LUCY- I
want it to be eyes first, that’s what I’ll give you. Because that’s how, like,
how does a blind girl do her make-up, the most comments were about my eyeliner
and my eyes and just eyes in general as a thing, so that’s what we’re starting
with, something for the eyes.
EMMA- Oh,
I feel like if I keep asking you questions you’ll keep bending [laughter], but
I think that’s brilliant.
LUCY- Yeah,
no more.
EMMA- What
is next for you, Lucy Edwards-Cave?
LUCY- Ooh,
so we’ve got my second book, Ella Jones vs Her Next Adventure in October,
published by Scholastic.
EMMA- What!
Already?
LUCY- I
know! It’s literally almost written now. I’ve just had a draft in, and Katy
emailed me the other day, so I’m so excited. So, yeah there’s that.
EMMA- Ah,
listen, Ella Jones vs The Sun Stealer is out now in all good
bookshops/able book areas. And it’s been an absolute pleasure to talk
to you, Lucy Edwards.
LUCY- Thanks,
Em.
EMMA- Thank
you for spending the time with me.
LUCY- Thanks,
Em, always a pleasure with you too, love.
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