Award-winning television presenter, author and disability activist Lucy Edwards lost her sight aged 17 due to incontinentia pigmenti. She chats to Enable magazine about her life in front of the lens
What are you most proud of, among all of your achievements?
Being a role model for all the little Lucys out there who haven’t had a voice. When I was younger, I couldn’t see myself represented. Being on social media, not using filters, showing my true self – it shows young people that they should love who they are. Going blind was the best thing that happened to me because I see life in a completely different way. I’ve lost my eyesight but I haven’t lost my vision, in that I truly see what life is meant to be like.
What makes you so resilient?
My age helps with the online trolls. I’ve got my own sense of self, an inner peace I’ve never felt before. I’ve worked hard for my mental health to be as good as it is now. When I lost my eyesight, I lost sight of who I was. My resilience comes from always comparing bad things in my life to ‘it’s not as bad as losing my eyesight’. I’ve already dealt with the worst day of my life, so every day from now on is good, no matter what happens.
Are you surprised by some of the reactions you receive?
Yes. There are still a lot of people who don’t know about blindness – we keep the ‘How does a blind girl…?’ series going for that reason. There’s still a lot of ableism, but sometimes it doesn’t come from a place of hate. It comes from a place of misunderstanding, because we’re not taught about disability in the workplace or in school. My TikToks are used by teachers in class, and I get a lot of great comments and messages from them.
How did you get into presenting and media work?
I was the little girl with the hairbrush who presented talent shows with her sister in the dining room – I’ve always wanted to be a performer in that sense. But when I lost my eyesight, I thought maybe it wasn’t my destiny. I started doing YouTube in 2014, initially to find a community where I could chat to like-minded people. I was trying to find some friends! I learned how to edit, produce and how to create a viral video, so it turned into a portfolio for my BBC journalism work which was amazing. I then founded my own company offering social media creation and diversity and inclusion consulting. I went from being really low having just lost my eyesight, to doing this as a job – it’s a pleasure to do something every day that I love.
Your book, Blind Not Broken, was released on 28 March…
It’s the best thing. It’s my little mind baby being released into the world! Some of the things I’ve written in there are things I’ve never shared before. I love that my family and my husband Ollie have shared their feelings from when I lost my eyesight – Ollie’s chapter always makes me cry. I wanted to make it part-memoir, part-guide. Anyone who goes through trauma, loss and grief, we can all come together in that grief, no matter what you’re losing. You see me now being really successful, but it’s taken me 10 years to get here. Grief doesn’t go away overnight – I’m still grieving even now after losing my sight 11 years ago. That’s okay.
Which of your projects do you feel has had the most impact?
My Pantene commercials. People seeing a blind person feel their hair, and understanding that marketing isn’t always about what something looks like – it’s about how something feels. We can all relate to that. Previously, many campaigns used disabled people as a tokenistic thing. But now I get to help design their products to be accessible to my community, using true universal design principles. That’s what mattered with that campaign.
You often share tech and AI advances on your socials. Tell us more.
Universal design needs to be incorporated everywhere. I live in a sighted world not made for me, so I plug the gaps by having a lot of sighted help around me – my husband and I still spend hours Braille labelling! I use AI every day – I use Be My Eyes to separate my light and dark washing, or I scan different barcodes with NaviLens. Tactile measures are needed as well [Pantene maker Procter & Gamble now adds tactile notching to its product bottles]. We’re only just at the beginning of this revolution, but I’m so excited to see what’s to come.
You might recognise Lucy from the adverts she did with Pantene, or from her BBC travel programmes. Her ‘How does a blind girl…?’ videos have gone viral, with one TikTok showing how Lucy does her own make-up attracting 20 million views. You can follow Lucy on TikTok at @lucyedwards or on Instagram via @lucyedwardsofficial.