蜜芽传媒

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20th August 2025

bbc.co.uk/accessall

Access All 鈥� Ep 172

Presented by Emma Tracey

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EMMA-听听听听听听听听听听听听听听 Today we鈥檙e telling a story about technology and identity. Tech means a lot in the lives of us disabled people, and it can solve many of the difficulties we have. It changes over time and it gets better and better.

听听听听听听听听听听听听听听听听听听听听听听听听听听听 Can you introduce yourself for me?

SARAH-听听听听听听听听听听听听听 I鈥檓 Sarah Ezekiel and was diagnosed with MND when I was 34 and pregnant with my second child in April 2000.

EMMA-听听听听听听听听听听听听听听 Hello. Welcome to Access All. And it鈥檚 a bit of a different show this week. The voice you just heard there is Sarah Ezekiel, if you didn鈥檛 catch it. Actually more correctly it is a speech synthesiser that she鈥檚 been using which is a few years old now. It鈥檚 a bit generic and a bit monotone. Sarah has motor neurone disease and lost speech and the use of her hands pretty soon after diagnosis. I鈥檓 in her house in Hendon in London and I鈥檓 asking her about when she became disabled 25 years ago while she was pregnant with her second child:

SARAH-听听听听听听听听听听听听听 My symptoms were slurred speech and weakness in my left arm. I was in denial, thinking I鈥檇 be fine after I gave birth. In fact after Eric was born I deteriorated rapidly and was soon severely disabled and lost intelligible speech. I was very depressed and terrified of disability and death. My marriage ended in 2003 and I was given 24-hour care for myself and our children. It was difficult to watch strangers care for my kids, but I鈥檓 grateful for the help I received and being able to watch them grow up. The worst part was I couldn鈥檛 use my computer, and only got assistive technology five years after diagnosis. I felt very isolated and was struggling to communicate with my carers too. It was a very difficult time, but things did improve greatly when I could use a computer.

EMMA-听听听听听听听听听听听听听听 Unable to move or speak, computers changed her life. The voice you heard there was her most recent synthetic voice, and is not the voice she uses now. Technology has moved on, now she sounds much more human, more like herself in fact.

听听听听听听听听听听听听听听听听听听听听听听听听听听听 It鈥檚 a very posh voice you have there, Sarah. That鈥檚 your old synthetic voice. Give me a blast of your new voice.

SARAH-听听听听听听听听听听听听听 Hello, this is my voice, which was made possible by Smartbox and ElevenLabs. It鈥檚 a kind of miracle really.

EMMA-听听听听听听听听听听听听听听 Wow, that just sounds really different. The first one sounds a bit Joanna Lumley, and this one sounds incredibly different.

听听听听听听听听听听听听听听听听听听听听听听听听听听听 Right, let鈥檚 just stop for a second and I鈥檒l let you know what鈥檚 going on here. When you鈥檙e about to lose your voice nowadays you鈥檙e encouraged to record it and bank it for future use, and that鈥檚 because AI can take that recording and turn it into a fully featured computerised version of your speaking voice. Then you can use it to say whatever you want via a computer controlled maybe by eye movements or chin movements. You need a pretty big chunk of your voice recorded to create that AI voice, and when Sarah lost her voice a quarter of a century ago we didn鈥檛 tend to record our voices like that; there were no voice messages, we didn鈥檛 have smartphones. So, when the offer came up to make an AI version of Sarah鈥檚 original speaking voice the family had to dredge up some audio from 25 years ago, and all they could find was a tiny bit of low quality audio of Sarah chatting from a home video from the 1990s.

听听听听听听听听听听听听听听听听听听听听听听听听听听听 How did it feel when you heard that voice for the first time?

SARAH-听听听听听听听听听听听听听 After such a long time I couldn鈥檛 really remember my voice before MND. When I first heard it again I felt like crying and it was very emotional.

EMMA-听听听听听听听听听听听听听听 Oh gosh, I can imagine. It鈥檚 such a different voice and clearly it sounds quite a lot like your original speaking voice, which is just so brilliant.

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PAULINE-听听听听听听听听听听 My name is Pauline Marks, and I鈥檓 head of national support services at the Motor Neurone Disease Association.

EMMA-听听听听听听听听听听听听听听 What is motor neurone disease, Pauline? Lots of us will have heard about it via Rob Burrow, the ice bucket challenge, that sort of thing. But can you tell us a little bit about exactly what it is?

PAULINE-听听听听听听听听听听 Of course. So, motor neurone disease, or MND as some people refer to it as, is a fatal rapidly progressing neurological condition, and it affects more than 5,000 adults in the UK at any time. So, the disease causes messages from the nerves, so the motor neurones in the brain and spinal cord that control movement, to gradually stop reaching the muscles. And what that means is that they gradual weaken, stiffen and waste. What can happen, the result is that people become locked in a failing body; they鈥檙e unable to move, talk and eventually breathe. Some people might experience changes in thinking and behaviour in rarer forms of motor neurone disease, but it doesn鈥檛 usually affect the senses, so things such as hearing, touch and sight.

EMMA-听听听听听听听听听听听听听听 Sarah has two children. Eric was in her tummy when she got her MND diagnosis 25 years ago, and Aviva is a couple of years older. I met them both and first I asked Eric, after a lifetime of having a rather robotic sounding mum, what was it like hearing her actual speaking voice?

ERIC-听听听听听听听听听听听听听听听听听 So, when I first heard my mum鈥檚 original voice it was almost like any other afternoon, it had just sort of come through. And I didn鈥檛 quite believe it at first, I was quite sceptical because I had no idea what mum sounded like. So, it was only when I saw how pleased and excited mum was that I was really happy and I was like, we鈥檙e clearly on to something here. And it鈥檚 made a very big difference so I was very happy, very excited.

EMMA-听听听听听听听听听听听听听听 And Aviva, what emotions went through your mind when you heard the voice?

AVIVA-听听听听听听听听听听听听听听 The first time, it鈥檚 taken me a while to process it, but really hearing it in the house has 鈥� especially today, I鈥檓 not home as much 鈥� but hearing it in the house it has made me really happy and quite emotional. It鈥檚 really made her present in the space. Like, mum isn鈥檛 just a disabled person in the corner with a robot that doesn鈥檛 relate to her. She鈥檚 here, we can hear her, we can feel who you are as a person. And you take up space in a more personable way, it鈥檚 really lovely. It still surprises me.

EMMA-听听听听听听听听听听听听听听 Is it what you expected?

AVIVA-听听听听听听听听听听听听听听 No [laughs].

EMMA-听听听听听听听听听听听听听听 What did you expect?

AVIVA-听听听听听听听听听听听听听听 Well, [laughs] I guess like me, but I don鈥檛 know what I sound like, so.

EMMA-听听听听听听听听听听听听听听 You鈥檝e got two children, Eric and Aviva, what did they think when they heard this new voice?

SARAH-听听听听听听听听听听听听听 My kids couldn鈥檛 remember my voice, and I think they were thrilled to hear the real me. Maybe a bit surprised too.

EMMA-听听听听听听听听听听听听听听 How close is it to your original speaking voice, do you think?

SARAH-听听听听听听听听听听听听听 I don鈥檛 really remember my voice and only have a video where I say one line. I think it鈥檚 pretty good, although I wonder if I would sound older now.

EMMA-听听听听听听听听听听听听听听 There鈥檚 no harm in being a bit Peter Pan I reckon when it comes to a new voice. Why not?

This version of Sarah鈥檚 voice was made using tech from startup AI company ElevenLabs based in New York City. But how did the brief bit of audio they found of Sarah get turned into a computerised voice which could say anything she typed into it with her eyes? I spoke with Simon Poole. He鈥檚 the chief technical officer at assistive technology company, Smartbox, and he made it all work with eye-gaze for Sarah. He opened up his laptop and showed me.

听听听听听听听听听听听听听听听听听听听听听听听听听听听 What鈥檚 happening here, Simon?

SIMON-听听听听听听听听听听听听听听 So, what I have here is an old home video that Sarah sent me. When we told her about the technology that would allow her to create a replica of her voice we asked her if she had any old footage of her voice from before she lost it, which was over 20 years ago. The only thing she had was this home video of her changing her baby鈥檚 nappy. Eight seconds of her talking with a TV on in the background.

EMMA-听听听听听听听听听听听听听听 Wow. Can we hear it?

SIMON-听听听听听听听听听听听听听听 Yeah, sure. Let me play it. See if you can hear what she鈥檚 saying:

SARAH-听听听听听听听听听听听听听 [Muffled speech] she wasn鈥檛 getting enough milk and she was miserable.

EMMA-听听听听听听听听听听听听听听 I don鈥檛 know about you but I can barely make anything about here.

SARAH-听听听听听听听听听听听听听 I thought, you know, I gave her a bottle one night and she was so much happier.

SIMON-听听听听听听听听听听听听听听 That鈥檚 all we got.

EMMA-听听听听听听听听听听听听听听 Let鈥檚 rewind that and listen again.

SARAH-听听听听听听听听听听听听听 She wasn鈥檛 getting enough milk at all and she was miserable so, um, I thought, I鈥檒l go for a bottle one night, and she was so much happier.

EMMA-听听听听听听听听听听听听听听 I think I heard, you know, I gave her a bottle one night.

SIMON-听听听听听听听听听听听听听听 Yeah, she said a little bit before that. let me play the first bit again. It鈥檚 really hard to hear:

SARAH-听听听听听听听听听听听听听 She wasn鈥檛 getting enough milk at all and she was miserable.

EMMA-听听听听听听听听听听听听听听 Oh, it鈥檚 the breastfeeding conversation.

SIMON-听听听听听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听听听听听听听 She was saying鈥�oh my goodness.

SIMON-听听听听听听听听听听听听听听 Yeah, we鈥檝e all been there [laughs].

EMMA-听听听听听听听听听听听听听听 So, she鈥檚 just talking about how Aviva wasn鈥檛 getting enough milk and she gave her a bottle one night and she was so much happier.

SIMON-听听听听听听听听听听听听听听 Exactly, yeah.

EMMA-听听听听听听听听听听听听听听 Gosh, it鈥檚 kind of like a key sentence. That鈥檚 amazing.

SIMON-听听听听听听听听听听听听听听 Yeah. So, when Sarah sent me this video my heart sank because I thought there鈥檚 no way we鈥檙e going to be able to create a voice using audio that is that bad. But ElevenLabs have an AI tool called the Voice Isolator, and what this does, because it knows what voices sound like, it鈥檚 able to extract a voice from a noisy background, no matter how bad the audio is.

EMMA-听听听听听听听听听听听听听听 Let鈥檚 go back a bit though, Simon. Tell me what the technology does and how it was used to make Sarah鈥檚 voice?

SIMON-听听听听听听听听听听听听听听 Essentially you have synthetic voices generated by a computer, and there鈥檚 a new technology available with the new generation of AI which can create a voice from a recording of your existing voice.

EMMA-听听听听听听听听听听听听听听 So, you did that, you got the recording. Then this was eight seconds of a background of a video. How does it pull that forward and then what did you do with it then?

SIMON-听听听听听听听听听听听听听听 There鈥檚 two different AI tools in action here. So, one of them was able to isolate a voice sample from an existing audio clip. And the second one is able to then create a replica voice that you can use to speak anything with the sound of that voice. So, I want to play you the cleaned up version. You鈥檝e heard the version where it鈥檚 really, really hard to see what鈥檚 being said. And this is really the latest in AI audio cleanup technology, which made it sound like this:

SARAH-听听听听听听听听听听听听听 [Cockney accent] she wasn鈥檛 getting enough milk because she looked miserable. And I thought, you know, I gave her a bottle one night and she was so much happier.

EMMA-听听听听听听听听听听听听听听 Ooh, it鈥檚 a bit weird, isn鈥檛 it?

SIMON-听听听听听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听听听听听听听 It鈥檚 clear but it鈥檚 also missing some of the key sounds in the sentence. So, how did you take that and make a full voice with all of those different vocal sounds that we need, the s鈥檚 and, do you know what I mean, all the different intonations and everything?

SIMON-听听听听听听听听听听听听听听 Yeah, I get that, because you鈥檝e only got a very limited clip, and really you want a good hour of somebody鈥檚 voice to create a really high quality recording. But what the AI technology does is it knows what typical voices sound like. They鈥檙e built from hundreds or thousands of original voices that the AI has been trained on, so it鈥檚 listened to those voices and how they sound, saying all sorts of different phrases. So, then from a very small sample it can then guess what that voice would sound like if it was saying other words based on how most people speak.

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EMMA-听听听听听听听听听听听听听听 Sarah, what does it mean for you and other people you鈥檝e heard from like you, who have motor neurone disease, to speak with a voice that sounds like their and your original speaking voice?

SARAH-听听听听听听听听听听听听听 I feel like myself again. And I don鈥檛 sound like a robot. My Facebook friend Esther, who has MND, heard about my voice and had hers made. She鈥檚 really happy. And we didn鈥檛 even have to pay, which is amazing. My carers and friends love my voice, which is really nice.

EMMA-听听听听听听听听听听听听听听 I mean, everyone鈥檚 voice is so much part of their identity, isn鈥檛 it? But you鈥檝e had your mechanical voice for so long, probably different ones and better and better over time, but you鈥檝e had that mechanical voice for such a long time, do you miss it?

SARAH-听听听听听听听听听听听听听 I do kind of miss my synthetic voice and turn my voice off sometimes. I was very posh and people didn鈥檛 know I was cockney with a slight lisp. I feel a bit more exposed because I didn鈥檛 really like my voice before, and wondered if people looked down at me because I was from the East End. I don鈥檛 care about that now and I鈥檓 glad to be back.

EMMA-听听听听听听听听听听听听听听 Oh, that鈥檚 so amazing. All the emotions and all the different feelings.

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EMMA-听听听听听听听听听听听听听听 Now that you鈥檝e heard what your mum鈥檚 voice sounds like what were your thoughts around her voice and your voice and the similarities?

AVIVA-听听听听听听听听听听听听听听 So, when we were looking through home videos I noticed that, I was probably about four, I had a little cockney accent when I was singing a song in the video, which is really cute [laughs]. And yeah, I was talking to myself in my car as you do, [laughs] and I was just saying something and oh, I sounded like mum there. It鈥檚 been really nice to connect to mum in that way because yeah, without the physicality figuring out how we鈥檙e similar is quite nuanced and something I鈥檝e been thinking about my whole life, so it鈥檚 really nice to connect in that way.

EMMA-听听听听听听听听听听听听听听 I can hear, Sarah, that you love that.

SARAH-听听听听听听听听听听听听听 I think you really sound like me.

EMMA-听听听听听听听听听听听听听听 Finding a bit of Sarah speaking on video tape and turning it into a voice she can use has helped Sarah to recapture her identity. It鈥檚 her in there, a woman with a bit of a cockney accent. Dr Susan Oman is a senior lecturer in data AI and society at the University of Sheffield. We showed her some videos of Sarah.

SUSAN-听听听听听听听听听听听听听 I have to say I don鈥檛 often get asked to do interviews about a positive use of AI [laughs].

EMMA-听听听听听听听听听听听听听听 Okay. What are you usually asked?

SUSAN-听听听听听听听听听听听听听 Well, normally, especially with things like voices and even replicating an actual individual鈥檚 voice, the stories we might hear in the news are of those scam phone calls where someone鈥檚 son or daughter has been replicated and they鈥檙e calling them to ask for money. Or I鈥檝e been asked to comment a lot recently on an MP that鈥檚 created an artificial version of his voice to communicate with his local constituents, which the people who live in his local area aren鈥檛 really a fan of it turns out. So, often it鈥檚 very negative implications from these technologies rather than the positive ones. So, this is a rather lovely turn of events for me, Emma [laughs].

EMMA-听听听听听听听听听听听听听听 Yeah. And it actually reminded me of another aspect of the story, Susan, which is Sarah鈥檚 son said that before the new voice Sarah would be trying to ring organisations and companies and they wouldn鈥檛 engage with her because the voice wasn鈥檛 natural enough for them to believe she was a person. And her son had to do it for her, which lessened her autonomy and stuff. So, they were hoping that it will help with stuff like that as well.

SUSAN-听听听听听听听听听听听听听 It must do, yeah it must do. But then if it鈥檚 good enough to do that then does that mean it can get through those banking encryption technologies?

EMMA-听听听听听听听听听听听听听听 Well, maybe I鈥檒l ask Sarah to try that for me [laughter].

SUSAN-听听听听听听听听听听听听听 It鈥檚 about you as an individual and your connection with who you are. So, for example, accent is really important; it betrays your class, it betrays your origin, it kind of betrays a little bit about who you are. If that doesn鈥檛 feel like you then you don鈥檛 feel like you. I suppose the other side of it is how people relate to you. If you are speaking to people in a voice that sounds mechanical that voice is in and of itself quite alienating, it鈥檚 quite robotic, or perhaps it does sound like another person. But essentially that person isn鈥檛 the person you鈥檙e speaking to; it might be replicating someone else, such as Joanna Lumley, as you mentioned. I do think what we鈥檙e talking about here is an individual鈥檚 relationship with themselves and who they feel like, as well as the relationship they have with the people around them.

EMMA-听听听听听听听听听听听听听听 It鈥檚 interesting that you talked about identity earlier. Sarah said that her friends and her carers love the voice. You saw the piece with her son. Sarah鈥檚 daughter actually said that because growing up Sarah didn鈥檛 have physicality she struggled to find things that they had in common that had been passed down from Sarah to her daughter, and now that the daughter has heard Sarah鈥檚 new voice her daughter, Aviva, says that it actually shows her that Sarah鈥檚 voice is a bit like her voice.

SUSAN-听听听听听听听听听听听听听 Ah.

EMMA-听听听听听听听听听听听听听听 And that actually their voices are similar. And that meant so much to Aviva. Is that something you find in your work, that connection and the importance of that?

SUSAN-听听听听听听听听听听听听听 I mean, definitely the connection between families. I have never studied a story quite like this before where someone, a technology like this has made this kind of impact in their life. But what I would say is the restoring of something lost between people in the same family or other kinds of relationships is incredibly important.

EMMA-听听听听听听听听听听听听听听 Yes.

SUSAN-听听听听听听听听听听听听听 But that鈥檚 a really lovely aspect of this story.

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EMMA-听听听听听听听听听听听听听听 Aviva, as a small child when did you realise that your mum did have something going on, that she was ill?

AVIVA-听听听听听听听听听听听听听听 Yeah, I just have this memory, I must have been quite young, but just asking her to prepare some strawberries, and she wasn鈥檛 able to cut them, she had to ask someone to cut the strawberries for her.

EMMA-听听听听听听听听听听听听听听 And Eric you said you don鈥檛 remember her not having motor neurone disease?

ERIC-听听听听听听听听听听听听听听听听听 No, so mum was diagnosed in April 2000 and I was born in June. And I think that her deterioration was quite rapid following that and that period of time. So, my memories are always mum being paralysed. It鈥檚 quite moving hearing what Aviva just said about the strawberries, I hadn鈥檛 heard that before.

EMMA-听听听听听听听听听听听听听听 When you compare your family to your friends鈥� and their parents how did your family do things differently? How did you guys do things in your house?

AVIVA-听听听听听听听听听听听听听听 We had a carer in the afternoons after school to look after me and Eric. My friends鈥� mums would often give me a lift home from school, and they鈥檇 always ask how mum is, and I鈥檇 always say yeah, she鈥檚 okay. They鈥檇 be like, she鈥檚 amazing, I went yeah. So, I felt really looked after by all my schoolfriends鈥� mums in the area, which was really nice. And that felt quite different.

EMMA-听听听听听听听听听听听听听听 And Eric, what about interacting with your mum, like doing stuff together was different because you had carers at home, but what kinds of different ways did you guys bond and have the chats and that kind of thing?

ERIC-听听听听听听听听听听听听听听听听听 So, having chats I would say in the way that other people do with their parents has always been quite different, but we have great chats. I sit next to her, she will use her computer and hearing her new voice is really helpful with that because a lot more emotion comes across.

AVIVA-听听听听听听听听听听听听听听 I鈥檇 always miss the fact that we couldn鈥檛 have phone calls when I was at uni. But texting each other provided a way to communicate. And I realised that we have a similar sense of humour, and I鈥檝e learnt a lot. Like, I wasn鈥檛 sure how I was similar to my mum because of the lack of physicality, but through the texting and the humour and the style it felt familiar.

ERIC-听听听听听听听听听听听听听听听听听 Well, whenever my phone pings I have to check to see if it鈥檚 a text from mum or not, because if not I鈥檒l end up with three or four messages quite soon afterwards.

AVIVA-听听听听听听听听听听听听听听 Yeah, it鈥檚 always a pleasure to text mum. It always feels like that can be鈥�I鈥檒l never be being rude, I鈥檓 just like, I鈥檓 messaging my mum and that鈥檚 the priority. That鈥檚 always the best thing, being able to chat.

ERIC-听听听听听听听听听听听听听听听听听 Because it鈥檚 such a key part of how we communicate when mum texts me I want to answer quickly.

MUSIC-

EMMA-听听听听听听听听听听听听听听 Technology isn鈥檛 just there to create a voice for Sarah, it has many other uses too. It allows her to work with the MND Association, to paint again, and recently she put on a show where she turned her experiences of being without technology, then becoming a technology user, and then getting her original speaking voice back again into a stage show using drag, AI and animation.

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SARAH-听听听听听听听听听听听听听 When I lost intelligible speech I felt like I鈥檇 lost my identity. Though I can still speak most people can鈥檛 understand a word I鈥檓 saying. Thank goodness for high- and low-tech technology. If I was living with MND in 1925 I鈥檇 be totally screwed. Before MND I was a right proper cockney and spoke really quickly.

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EMMA-听听听听听听听听听听听听听听 Sarah, you鈥檙e also an artist and you produced a recent stage show. Tell me a bit about your art and what part having motor neurone disease has played in your work?

SARAH-听听听听听听听听听听听听听 I studied art and history of art for A-level. I went to art college, but I think I was too immature at 18 and wasn鈥檛 ready for it. I dropped out and became a PA, mainly in publishing. I was still creative after dropping out of art college and did evening classes in life drawing and sculpture. Other artists and nature inspire me. I love flowers and painting them. When I lost the use of my hands from MND I really thought I鈥檇 never create again. Eye-gaze technology changed that and I started using art software to paint in 2012. I was so happy, and even though it was painstaking and tiring I loved painting again. I started exhibiting my work and sold it online. I used the proceeds of my sales to buy eye-gaze technology for other people with MND because funding wasn鈥檛 available then.

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SARAH-听听听听听听听听听听听听听 I just wish I could sing again. And maybe AI will make that possible in the future. But we鈥檙e in the magical world of theatre where I can do whatever I want. I鈥檝e always loved music from a very young age and I鈥檓 always singing in my head. What would the world be without music?

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EMMA-听听听听听听听听听听听听听听 You鈥檙e an absolute legend, honestly, buying eye-gaze technology for other people, volunteering, working on your art, raising your children. I鈥檓 properly impressed, and if I can do half of what you do I鈥檇 be delighted with myself. Sarah, is there anything else that you want to tell me, either about your plans for the future or something maybe that you want to say to people with motor neurone disease?

SARAH-听听听听听听听听听听听听听 I鈥檓 now working on the Co-Creative MiND project funded by the Wellcome Trust. We are working to enable people with MND to create by writing, film, theatre, animation and much more. They don鈥檛 have to be artists. And I鈥檓 really excited about this project which is until 2030. Creativity gives me so much pleasure and I forget about the difficulties of living with MND. I really hope that the MiND project will do the same for other people living with this awful disease and allow them to explore their inner worlds.

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SARAH-听听听听听听听听听听听听听 The real Sarah Ezekiel is back again. AI can be used for good, so people who diss it can sod off [audience laughter].

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EMMA-听听听听听听听听听听听听听听 Thank you very much for listening to this week鈥檚 episode of Access All. Please do get in touch with me. You can email accessall@bbc.co.uk. And please do subscribe to us on 蜜芽传媒 Sounds. See you next time. Bye.