Podcast: Assistive Technology and voice banking

The Disability Download

In this episode we spoke to Jane about how technology will empower her life: despite losing the power of speech, she can store her voice digitally – a process known as voice banking. So Jane will still be able to say what she wants in her words.


[music starts]

Steve Tyler: How do you enable somebody like Jane to carry on being Jane – in every sense of that word – using technology? And one of those fundamental pieces is her voice, and how she talks, and what she wants to say and making it as easy as humanly possible to make that happen.

Jane Wallman-Girdlestone: Oh! It was extraordinary! And I couldn't believe how close it was to my actual voice! It was, it was a joyous moment. And also quite a tearful moment because I realised something that I didn't think was going to be possible.

Nick Bishop: Hello and welcome to The Disability Download, brought to you by pan-disability charity Leonard Cheshire. On this podcast we respond to current topics, share stories and open up conversations about disability.

[music ends]

Nick: Hi everyone and thanks for tuning in. My name is Nick and I’m your guest host for this month’s episode – where we’ll be talking with our Assistive Technology Director, Steve Tyler, and firstly, Jane.

Like many people, Jane uses her voice a lot and perhaps even more so as a priest and theatre director. She has progressive multiple sclerosis (MS), which for her means she will lose the ability to speak. But thanks to technology and a process called voice banking, Jane can record her voice in advance. So, when needed, Jane can say what she wants electronically and still sound like Jane. So, let’s get into the podcast!

So I'm here with Jane and with Steve Tyler, our Director of Assistive Technology. Welcome, both of you to the podcast. So firstly, Jane, can you tell us a bit about yourself?

Jane: I'm a priest in the church in Wales. I'm a writer, I'm a poet and I'm a fine artist. And I live in a Leonard Cheshire home erm because I have progressive multiple sclerosis and I'm a recovering thalidomider.

Nick: And can you tell us about voice banking and why you wanted to do this?

Jane: One of the problems with progressive multiple sclerosis, [and] any multiple sclerosis, is that you develop lesions on your brain. And one of my lesions is right at the base of my brain. And in time, I won't be able to talk. So, voice banking is great way of putting my voice into a digital form, so that I can speak when I can no longer speak by myself.

Nick: Fantastic. Oh, that’s really good! And what was it like when you when you first heard your voice after you'd recorded it?

Jane: Oh! It was extraordinary! And I couldn't believe how close it was to my actual voice! It was, it was a joyous moment. And also quite a tearful moment because I realised something that I didn't think was going to be possible – because I've been brought up on Stephen Hawking and his synthesised voice – [I didn’t think] that that it was going to be as good as it was. And it's fantastic.

Nick: Brilliant! You mentioned synthesised voices like Stephen Hawking. So you were expecting – prior to knowing about voice banking – you were expecting voices that didn't sound like you at all. Is that right?

Jane: No. Not, not quite, quite like that. I mean, I knew the technology had moved on a lot but I wasn't expecting it to sound [like it did]...We tried various possibilities and the one that I I heard first was the one that was amazing… and caught the way that my voice goes up and down. The sort of way that I use humour is a lot in the way I use my voice and it caught it well.

Nick: How did you get involved in voice banking? Can you explain a bit about how, erm, how the process started?

Jane: Yes. Leonard Cheshire’s Information Technology Department at Hill House in Sandbach had contact with me. It was entirely through Leonard Cheshire IT that we got this up and running and going. And they put a lot of time and energy into working through what I needed, and what I'd need at different stages.

Nick: Brilliant, brilliant! So how do you hope it will help you in the future? And what impact will it have on your life?

Jane: Well I haven't actually mentioned – the other thing is, I'm visually impaired and use a guide dog. But my main means of communication is voice. And I went to drama school and had my voice trained. And I can do a lot by using good technique, but it is getting worse and I can feel it's getting worse. It [voice banking] will help me ultimately to do everything from preach a sermon, to deliver a lecture, to sit and chat with friends, to go out and order a coffee, to tell my guide dog what his next task is, to accompany him when we're out walking so that he gets commands. I mean it's, it's every aspect. I mean, I use my voice probably more than most people because to work a guide dog – it's a bit like riding a horse – you've got to constantly encourage them and give them information. And also, all the things I'm involved in are all very – uh – voice-centred.

Nick: Of course, yes. And so you mentioned your, your guide dog there. Tell me a bit more about him.

Jane: Well, he's called Obi-Wan Kenobi. He's black. He's a half golden retriever, half black Labrador. He was eight yesterday. He's a triple-trained dog. He's trained to work with me in a power wheelchair. He's trained to work as a guide dog in that in that facility, and I think there's only about seven of us in the country who do that. And he's also trained by Dogs for Good: so he does things like pulling off my clothes; putting my clothes in the dirty linen bin; picking things off the floor; going and fetching things – he does all that as well. So, he's a really clever dog.

Nick: Fantastic. That's brilliant. And you mentioned about being a… being a priest and a creative artist. Tell me a bit more about both of those things.

Jane: Well, my priestly role is is quite a lot about teaching but it's also going to churches which are accessible which are remarkably few. Hint, hint! When I can find a church that I can get into, then it's great to go and take a service and preach. But again, I think it may be possible to do more online with that. But at the moment the priesthood part: I do run a service in the care home that I live in, which is great. But I don't do as much as I'd like outside and that's an accessibility issue.

The creative artist stuff is anything from doing live poetry readings. The other thing that I love doing is writing in theatre. I trained as a theatre director. And I'm just on the final draft of a play called Dying for Love, which I'm hoping to put on in Chester, which will be my first professional play for about – I don't know – 10, 12 years. And I'm very excited about that because again, it's an area I'm passionate about. But I've had a lot of illness and I'm just…. I'm using that as my, you know, thing that that really motivates me… to metaphorically get off my bottom and work.

Nick: Fantastic. Well, good luck with the play. That sounds, that sounds great. Thanks so much, Jane. And Steve – tell us a bit about yourself and, and your role.

Steve: Thanks very much. I'm Steve Tyler. I am Director of Assistive Technology and Transformation at Leonard Cheshire. And that means supporting our clients in what they want to do. Live, learn and work in the manner they choose – using technology but often using lots of other things too, including people power.

Technology isn't the panacea to everything, as we all know. It's also supporting employees, and making sure that our staff with disabilities get the support they need and deserve. But also I'm the link into the wider assistive technology community, you know, with Microsoft and Google and specialist technology providers and across government.

Nick: Right. So a bit more on that. So what work have you been doing with the likes of Google and Microsoft or technology companies recently that might impact disabled people across the UK?

Steve: Well a lot of what we've just been talking about with Jane comes out of significant work behind the scenes with Microsoft, Google and many other technology providers. How do you enable somebody like Jane to carry on being Jane – in every sense of that word – using technology? And one of those fundamental pieces is her voice, and how she talks, and what she wants to say… and making it as easy as humanly possible to make that happen. But the other end of it is, how do you enable people that don't have a voice to have one from the get-go?

So how do you translate difficult to understand speech into easier to understand speech, or more regular sounding speech? And that has impacts on all kinds of things. Not just communicating with people and your colleagues and friends and family, etcetera. But of course more and more, you know, controlling the environment through speech – because it's relatively ‘easy’ (in inverted commas) to do these days, and so on.

The other piece of work that's been going on more recently: some of your listeners might know about a development called Chat GPT. So, this is a way of so-called artificially intelligent systems being able to write things for you, even to code things for you, in software. But if I take the writing element first and link it back to what Jane was talking about. You can ask the system, at the moment, to write you a sermon. And when it produces the subject matter, and you can specify as much as you like what that subject is, you can amend it or ask it to be amended. And you might say things like: “make the tone of this piece lighter” or “I want to integrate the concept of X into, into, into my speech” and it will do that for you. These are unique. In other words, it makes it for you specifically.

Now these are enormously powerful new capabilities which will assist people with disabilities – and everybody else I guess – into the future. As with all these technologies, you know, there are benefits to them, which we're determined to maximise. There are challenges. No doubt about that. It's interesting for me. I reengaged with banking voices and so on. Part of my background is around creating voices in the earlier days of synthetic speech. So, I led the team that developed the voice of Alexa, as it turned out. And the voice that appears on Kindle devices for Amazon and things like that. And it's interesting going back into that space.

Nick: So what were your thoughts on hearing, erm hearing Jane’s voice banking and the successful outcome?

Steve: Well, it's spectacular in terms of what's been achieved. The test, really, in the end – however spectacular the technology is in terms of its performance and so on –in the end, is: does it really do the job for Jane? And to what degree do we need to intervene to make sure it not only does the job from the get-go, but continues exceeding her expectations? For me, the test is: does the technology actually deliver to the human at the end of it? That, fundamentally, is the point. And if it doesn't do that, then you can have the best technology since sliced bread but if it's not actually delivering the solution… well, you know, that that wasn't the right thing. So for me the test is more to do with the adoption of it and the use of it. And the ease and the delivery of what is promised and could be delivered.

Nick: Yeah. Sure. And presumably as you were saying, developments like this could help many more disabled people?

Steve: Some of that is to do with understanding the needs of the individual. Some of it is taking advantage of the mainstream technologies that have happened which were never developed for this specific reason. But as it turns out, they really do bring value to the disability community.

If I give you an example: at the moment we're experimenting with some robotic support. And there have been some real step changes in robotic support to assist people with significant physical challenges to do everyday things: like feed themselves, or, I don't know, get a teacup out of the cabinet and pour a cup of tea and drink it. Now, it's all doable. But at the moment at a very, very hefty price tag and there have to be very significant set up processes.

You have to keep things the same way that they were the last time. Otherwise the system doesn't really understand what's going on. Now, clearly, those are very, very promising propositions and we are there to push that agenda as hard as we can. A to bring the price down. B to make these systems smarter. And C to make sure that they blend in properly to genuine human activity.

Nick: Yeah. Wow. That's interesting. Jane, what are your thoughts on firstly robots making you a cup of tea?

Jane: Funnily enough, I was kind of ticking my box that I need to talk to Steve… because one of the other things that happens with progressive MS is I've lost all feeling in my hands and arms, so I've got no sense of touch. And I was thinking: “Ohh I've I tried out, at the Birmingham Conference, a hand robotic and I was gobsmacked by how good it was.”

So I think in the, but I think it is, I agree completely with Steve. I think it's very much work in progress because it's a bit like when you buy an an early iPhone. And it's great compared with what you've had before. But then a few more along the price has come down, and they've debugged it and they've sorted it out. And it's worth the wait, and I think that may well be the case with this sort of thing. It's gonna be an ongoing thing, isn't it? I mean, you know. Ten years ago we wouldn't have thought [that] what's possible now was possible so quickly. So it's all speeding up, I think.

Steve: My children, who are now 13 and 10 respectively, played a game about a year ago, which was… it effectively was a sort of table tennis style game but it was all controlled through brain actuation. This was literally brain wave patterns that were analysed by a system that took about 45 seconds, 60 seconds or so. And once it got the hang of how you think in the context of table tennis, it said: “Right. Off you go!” And they battled each other in a kind of air hockey style environment, pushing the ball from one end of the table to the other – but by thinking about it.

Now those have led, those developments have led to switch technology. If you think about what's actually going on there: it's a relatively “straight forward” (again in quotes) switch. You know. “Push left. Push right. Push up. Push down”. And once you've got a switch that you can operate like that just by thought, you can begin to think: “Well, OK. Turn the lights on. Turn the lights off. Turn the temperature up”. And these things are becoming a reality. Now as we alluded to, you know, again: these technologies are phenomenal – in the right circumstance, and in the right environment, with the right controls.

But you can see where it's going: that if you can begin to analyse brain wave patterns, albeit relatively “simply” (in inverted commas right now), but you know, there will come a point when those technologies become smarter and are able to do more. And we need to put controls in place to make sure that people maintain their dignity and control over their environment rather than it controlling what they do.

Jane: Gosh. It's a fascinating world ahead, isn't it? I mean, what we're seeing as sci-fi at the moment is reality in maybe five years’ time. It's extraordinary.

Steve: And I never know, you see. You know, when you think about these things. Goodness, I've been… I remember, for those of you who are as old as I am, there was this big push – you know, in the early 2000s…. And at the time Orange, the then mobile phone company, that we didn't know what it was at that time. They, and I'll never forget the set of advertisements they had. And it was Orange. “The future’s bright. The future’s Orange.” That's what's...

Nick: I remember.

Steve: That's what the… That's what the slogan said: And everybody was, “what is this thing called Orange? Ah, goodness!”. You know. And nobody knew what it was because they were releasing information about it very, very slowly and it was a very, very innovative company. And they produced a video and the video was, you know: here's the future, over the next five years, your world is about to change. And it shows a video of everyday life, but this time mediated by technology. You know.

So as you came downstairs, you know, the birthday card that your mum sent you appeared on your TV. Your coffee was made to order. Your children went on the minibus to school and you knew when they got to school. And and you knew they were safe. Your diary said, you know, there been some changes around it. And it knew you were going to be back late and so we ordered your favourite pizza in advance of you arriving home.

Now. All very interesting, but it didn't happen. And, you know, the technology there is there is…there are people like me who, I suppose, push the technology to its limits and want the technology to be as human centred as possible – to deliver a world that people can take advantage of and genuinely benefits people. And then there's the reality, you know, of: how much effort, how much processing power, how much understanding, really, is needed? Because what we're really saying is we're looking for technology to be as bright as we are, as able as we are, as human beings… but don't run away with yourself because we still want to be in control.

Jane: That's… that's kind of a big ask, isn't it? If we think about it.

Steve: It's a big ask.

Jane: And I think. I think also the bit that we've kind of missed out, but it's important, is that: while we're pushing – and you particularly – also alongside that has to go legislation. And, and supervision. And all of the things that, that look at data protection and so on. Because thank God, it's not just one aspect that, that is developing. All these other aspects are having to develop alongside. So we push. But I think the more we push for technology which is in our image, the danger is that…. I mean how can I put this? I think, I think what we need is to find… what I'm interested in, is finding technology which does what we want it to do. But isn't necessarily like us.

Steve: Yeah.

Jane: If that makes sense. So, so, it… it cannot be… I mean the kind of skeletal suit, or whatever, in very, very few cases would be a life changer. But for the majority of people: a specific, you know, glove that can be worn to, to make a cup of tea or whatever, is all that's needed. It's something about keeping…. the only way we can keep it human is by putting human at the centre.

Steve: Absolutely right, Jane. And I’m so glad. I would 100% agree with that. The human-centred design, I think, and keeping people at the centre of development, is going to be more and more of a critical component of how we create the world at the moment. And and and I mean, technologies have a habit of running away just from a technical point of view. Things become possible and people say: “Right. Well, fantastic.” You know. And it's interesting. I've been doing work recently on autonomous vehicles.

You know. Now, as you all know, if you could have a fully accessible vehicle that you could summon to wherever you are – and it would take you to wherever you want to go, and drop you off at the right place, and tell you where it is you are in relation to where you said you wanted to be, and you know all of that – fantastic! This would be a sort of heaven-sent thing to a lot of people with disabilities… and a lot of people, full stop.

What's happened here a lot of the time is that people in policy making areas have focused on really quite odd things like: “Well, we're not progressing any further with legislation around this space until you can demonstrate to us that these technologies are going to be 100% safe.” Now, right there that takes you down what I refer to as a bit of a rabbit hole… because I mean, what are you going to do about it? You can have a conversation about safety levels. Is it safer than a driver?” You know? That would do me. [Safer] than a human driver.

But by taking the argument off into the realms of, you know, philosophical theorising about the level of safety etcetera, in the meantime you've got technologists delivering on this stuff. One way or another, we need to take control of what the technologists are delivering. And make sure that it remains human-centred rather than, you know, going off on interesting but pointless philosophical discussions. I say pointless because it's going to happen.

Jane: Oh yes.

Steve: The question is, you know: let's make sure that we get what we want out of it, rather than…. because one way or another it's going to be delivered. And you've got an opportunity to influence how it's going to be delivered, versus not. This happened in the mobile domain. You know, a lot of standards were developed where… there's very onerous standard setting mechanisms in Europe and the US around the world. And a lot of the time, you know, companies get fed up with waiting for the standards processes to work. So they get in the room and an hour and a half later there you are: “We've manufactured a standard and it may not be what you wanted but it works for us. So there you go.”

Jane: And that's where the money is. So it will happen. That's why the more person centred our stuff is that's aimed at disability the better, because it can't, that room cannot be complete unless disabled people are in it as well.

Nick: Steve. Are there any other technologies that you think are particularly promising for disabled people that you'd like to talk about that we haven't touched on?

Steve: Well as you know, things are changing all the time. There is work going on in an area, you know, known as material science. So this is about how do you create tactile environments? Or how do you bring about a tactile effect to something like a screen?

So from our point of view, you know it might be Braille delivery… or it might be a raised diagram or picture of something. And there's a lot of work going on in that at the moment. A lot of work going on in some of the mainstream arenas to, to develop battery technologies. As we all know, but from an accessibility point of view, again, it's it's even more poignant. We carry around more and more powered things with us and the amount of charges and so on that everybody has to have… or connectors to make sure that, you know, you've got enough juice in your thing to keep it going. It's all very well having these robotic systems and you know smart devices and all the rest of it. But if they lose power… well it's all over in a really, very fundamental way.

There's work going on in monitoring technology. So how do you monitor people’s activity for the purposes of support? So if somebody falls over, if somebody needs help, that there are these smart systems that can help you or trigger support. These are great as propositions but challenging because, you know, we don't want them to be invasive and people don't want to be invaded. They don't want things watching over them without knowing quite what's being deduced from the information they're getting. And, you know, all of those things. And then finally, there's a lot of work in biomedical areas where that, that blend that Jane alluded to earlier – around, you know, the link between the human body or human brain and, and, and technology. You know, being able to control things around you – either physically or as an addition to your body or as part of your body. Those things are… they're rapid growth areas, but again right at the edge of…we've not developed ethical moral guidelines to deal with these emerging technologies adequately, I think. And we need…we're gonna need to focus quite a bit on that.

Nick: Sure, yeah.

Steve: I have to say too working with Jane has been a real, a real pleasure for the team. One of the most rewarding parts of my role is when you find a challenge and then the solution, however partial it is, that makes the world just slightly better for somebody. And the massive change that brings: not just to the immediate kind of life-changing element of it, for somebody… but actually it's more to do with the way they think about things. “Well, OK. If I can do this, that means I can do the other.” And that to me is, erm, one of the, one of the great powerful benefits of doing the work that I'm doing.

Nick: That's brilliant. And you and you said at the beginning that you particularly enjoyed working with Jane on this. What, what was it about working with Jane that was, that was so good?

Steve: What was good about working with Jane that was so good was: she was not just, “I can do this.” But she laid down, right up front: “This is what I want. This is, this is who I am. This is what I do. You know she talked at the very beginning of, of the podcast about, you know, her interests: her as a vicar, her life as an artist, her life as an author. That she wants to put a play on. She's got ambition, she wants to do this stuff and she's damn well going to do it. “Now the question is: are you with me or not?” You know. That was her thing and we're with her, you know!

Jane: And and I think… I think I felt that right from the beginning… that, that they… they appreciated the upfrontness about the journey. That I wasn't sort of asking, as it were, expecting them to say no. But also recognising that, you know, there are massive limitations. Finance, time, energy, technology. And I went in knowing that this was a journey. It wasn't a one thing fixes all. And I think one of the things we have to get used to as a disabled community, and that is the revolution, is decide what. And one of the things that that I work on a lot when I'm talking to friends who are disabled is: what are the three things in your life that you don't want to stop, no matter what? And start with that.

Steve: I'll never forget one of the clients at Hill House who, you know, absolutely didn't want to engage with all this technology malarkey. Not for him. Not… really not interested, didn't want to do it. And didn't see – because he wasn't technical, he wasn't interested – he didn't see what it could add to his life. He's perfectly happy. Then he discovered the benefits that other people are getting out of Alexa. And all of a sudden it was like lighting the blue touch paper. There was a sort of: “yeah, OK!” No I could…. I could do that. I get it!”

You know. And before you knew it, I mean he became one of our biggest advocates in Hill House. Just because he not just once he’d got Alexa he was like: “OK. Well. It can do X, Y, Z. Now I can control other things around me. And now that I've got that sorted out… Goodness, I could do a whole host of other things! And even that very (quotes) “basic” (quotes), thing, of I don't know, listening to any radio station on the planet.

You know, listening to audio books just by asking. That, I don't think we realise sometimes that for some people this, these, as long, once it's set up for you… because part of the heartache is setting out properly, making sure it matches your requirements, having it set up in a way that you can genuinely use and all that. But once…these things for a lot of people are every day. And they don't see that actually, the benefits that it's brought are… they’re, they're so embedded in our culture so very quickly.

But people forget. They just move on and think: “Well, no, of course I've got Alexa. Yes, why wouldn't I have?” Whereas for people that haven't benefited from it, and that really could [benefit from it]… you know, it's enormous. I don't know. I often use this phrase, you know: “Google has become a verb in the English language.” You know. Online shopping is just a given: of course you can online shop! And if you can't offer me an online shopping experience… well, I don't know: I’m not sure that I want to deal with you anymore. Or I want to access music. Not very long ago – 20 years ago, 25 years ago – people like me had a CD collection.

Nick: Yeah. I remember. [laughs]

Steve: Now. Now you just ask for it and it magically appears and we just accept that, of course, you know, we've lived through the revolution. And those of us who have adopted it and run with it are in one place. Those people that, for whatever reason, haven't been able to or haven't been encouraged to – or simply never knew, they just never knew it was possible – are in another place. And we need to sort of make sure that we all benefit from these things.

Nick: Absolutely.

Jane: I couldn't… I really couldn't agree more. Absolutely right.

Nick: Yeah. Completely. Well. Thank you so much, both of you. As expected, this has been a fascinating discussion. And I hope we can have one again sometime soon because I want to hear what the what the voice banking's been like towards the end of the setting up process.

Steve: The ultimate test. The real test. We made the technology work. The question is, does it actually do the job and now what do we need to do to make it do the job now?

Nick: Absolutely Yeah. But it, it sounds, it sounds very promising so far. And I'm delighted that it's been such a good process for you and I hope it continues to go well. Thank you so much for spending so long giving such fascinating answers!

Thanks so much to Steve and Jane for their excellent feedback. Their understandable enthusiasm for technology is infectious and I hope that really came across. I think Steve and Jane gave very insightful feedback on how technology can help disabled people to communicate, to express their views, to control their environment. And I’m so pleased for Jane that voice banking is going so well and will enable her to retain the unique sound of her own voice. With all the fantastic new technologies available, for me they also gave reassuring insight that they are well aware of the challenges and the need for strong data protection…while still being understandably excited about the future.

We’d love to know what you think. Get in touch by emailing us at disabilitydownload@leonardcheshire.org or contacting us on Twitter or Instagram @LeonardCheshire. And if there’s a guest you really want to hear, reach out and let us know! And don’t forget to like, share and subscribe to the podcast!

Thanks for listening. I’m Nick and this has been The Disability Download.