Podcast: Our 2023 Highlights

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Transcript

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

My name is Isaac, and this month we’re focussing on some of the brilliant guests we’ve had over the course of the year. 2023 has been a year of huge advances in technology and artificial intelligence, but as accessibility improves, it also highlights the areas with room to grow, and there’s still so much work to be done.

For our first clip, we’ll hear from Disability Download host Nick, as he caught up with Jane – a priest, poet and creative artist who has multiple sclerosis – and Steve, Leonard Cheshire’s Director of Assistive Technology.

We join them as they’ve been discussing Steve’s work with some of the biggest companies in accessibility, and the technology that’s working to empower Jane by storing her voice digitally – a process known as voice banking – which will allow her to keep her voice, despite losing the power of speech.

Nick: 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.

Isaac: Next up, we’ll drop in on former host and good friend of the podcast, Erin, when she spoke with visually impaired actor and theatre maker, Alice Christina-Corrigan. As we join them, Alice is describing the possibilities of creative captioning.

Erin: You mentioned a bit about creative captioning, so can you tell me like what, what is that? What’s your work on that and what does it entail?

Alice: Wow, creative captioning. If anyone has gone to the theatre that is listening to this and has potentially seen or happened to go on one of the only days they potentially might have captioning on in a run, very often captions are put on the side of the stage. And use like a system that kind of just creates the captions kind of as we go. Which is, which is great in theory. We've got the captions. 

But what I and a load of others are, are kind of trying to advocate for is looking at how we can technologically advance how captions exist within a piece. And for me, that is through the means of creative captioning and how captioning itself is just as important and integral to a theatres landscape as sound design and set and costume, and the words that we're saying on stage. When I created it for Past Life and I'm only now kind of looking at changing and kind of adapting my practice and kind of scaling up, but back then I mean I still think it's a massive grey area creative captioning in general, like how the hell do you even start? 

But it was about kind of radically going, ‘what is captions and how do they exist and what happens if they're a character’? And I kind of viewed it like that. The technological landscape of Past Life was very much a character and part of the rehearsal room, which is like, really, really cool. To really just create an immersive language within what the captions are.

And if we look, if we look at it logistically and why, why we're kind of advocating for creative captioning to be seen, to be seen as this, as this creative thing, it's because if you're watching a piece of theatre and being able to have the captions appear in certain places on stage, or react to the actors on stage, helps visually for the the deaf or hard of hearing community or anyone that doesn't maybe identify in that community but actually uses captions on a day-to-day basis, be able to kind of keep with the action on stage and have an element of storytelling happening alongside the story that can aid each other. 

So that's the process in which I'm kind of advocating for and the more I mean now, whenever I watch anything, anything like any kind of theatre, I'm like, well there's a way you could have made that creatively accessible. There's a way the captions could have appeared here and on those screens, and it's interesting. A good example of someone that’s done it recently was the Solid Life of Sugar Water, which had captioning throughout the run. And it was, it was really, really accessible.

 I'm visually impaired and I could see them, which was incredible. And in moments of high-stake emotion, the captions would alter their fonts and become quite chaotic just to aid what was going on on stage. So it's about creating a parallel between the captions and the action. So that's logistically why I want to be able to kind of look at that and why I think there is a need for it. But then the creative side of things is actually looking at how it can aid the design and the world that we're creating on stage.

Isaac: Another feature from our host Nick comes next, when he delved into the hard-hitting topic of disability hate crime. Nick’s guest Sapphire Beamish joined us from United Response – a charity which provides support to autistic people and adults with learning disabilities and mental health needs.

Here’s a clip of Nick and Sapphire discussing disability hate crime: what is it, and how can we be allies to disabled people?

Nick: So explain to us a bit about the project from Leonard Cheshire and United Response. Give us a bit more background.

Sapphire: Our disability hate crime awareness campaign is a joint project that launches ahead of Hate Crime Awareness Week in October. As some of you may already be aware, we research numbers of reported disability hate crimes each year by sending Freedom of Information requests to police forces to gather a lot of statistics. 

These include the overall number of disability hate crimes… as well as the number taking place online or involving violence against person… and then how many actually result in a charge, or summons to a court, for the offenders. So this year and last year, we also asked about crimes with an intersectional element. And that's because hate crimes are also motivated by other characteristics such as race and gender and religion. And so this has been a hugely successful project for the last few years and it's raised a lot of awareness about disability hate crime.

Nick: Fantastic. So what can we expect to see from this year's project?

Sapphire: So despite all the work we've done, there is still an aspect of under reporting in hate crimes. The trend over a number of years is showing high levels of hate crimes committed. And last year's figures were particularly high, though this may be driven by improvements in crime recording by the police. We've been also looking at the outcome of these reports.

 And sadly the number of reports ending in a charge or summons being very low, in fact lower than the national average for crimes types. So not just hate crime. So that [all crime charge rates] usually sits around 5.7%, which means that you're less likely to get an outcome of a charge or summons for a hate crime than other crimes, which is something that we really want to improve.

Nick: So this year we're focusing on the importance of allyship. Can you explain why that's so crucial?

Sapphire: So United Response and Leonard Cheshire ran focus groups to talk to people with lived experience and knowledge of the campaign. And one of the outcomes from this focus group was the idea of allyship, and wanting allies to have a better understanding of the long-term effects that disability hate crime can have. So being an ally can include offering support in a way that's safe –by offering to be a witness and just being in the area to help. This can help the person by showing that they do have support in their community. And it can also show that that if they do want to report to the police, then they already have a witness statement to support their case.

Nick: Sure. Yeah. That's great. Is it fair to say that the two main political parties haven't made any commitments on disability hate crime?

Sapphire: Unfortunately so. We have engaged with a number of MPs across the government and opposition benches. So earlier this year we met with the Minister of State for Disabled People, Health and Work, Tom Pursglove, and his team at Westminster. And then we met with the Shadow Minister for Disabled People, Vicky Foxcroft. It was equally stressed to them both the need to tackle reporting values and to increase disability awareness. And we’ll continue to push this. Crime is on the political agenda. We need to make sure that disability hate crime is not forgotten.

Nick: Of course. And what else are campaigners calling for this year?

Sapphire: The government has recently announced its intention to merge proposals to tackle hate crime into a broader crime strategy. So we're calling on the government to reverse this decision and focus on developing and publishing the bespoke hate crime strategy, in close consultation with stakeholders and their families. We are also continuing to push for police services to receive more funding to have a dedicated Disability Liaison Officer that's trained in disability awareness and engagement.

Nick: Right. Excellent. Where can people get support if they're affected by hate crime?

Sapphire: Hate crime can be a really difficult topic to talk about for many people. So if you or anyone you know is struggling with abuse, it's important that you do something to help. Then you can contact a number of organisations, such as one called Victim Support. And there's a full list of charities who can support in relation to hate crime on the Leonard Cheshire and United Response web pages.

Nick: Thanks very much, Sapphire. That's really useful.

Isaac: Our next clip comes from October’s Black History Month episode. Hosts Peter and Beth caught up with comedian, author and educator Fats Timbo, to discuss identity, intersectionality and cyber bullying.

Peter: I've got a question about sort of identity. What's it like being a black woman with a disability, how do you challenge the stereotype?

Fats: To be honest with you, I feel like my disability has been more of the challenge than being black because I grew up in Newham where basically everyone is a minority, you know, no one stands out because everyone's different. So, it kind of helps with knowing that, OK, I'm black and that's fine, but having a disability was like an added layer right. And I found it very difficult because everyone would question why am I so small? Why am I this? Why am I that?

Which was difficult to deal with because it was like I can relate to everyone, but obviously I can relate to people who are black, but I couldn't relate to people in terms of my disability, so there was this, disconnect that I had from everyone really because I'm the only one that is the only little person that's around, you know, obviously having parents that are average height and then having all my siblings that are average height you just feel alone most of the time. So I would say my disability is what made me the most lonely.

Peter: I grew up in Newham as well, so I can sort of resonate with it being a bit of a melting pot, but then at the same time, you know, disabilities isn't necessarily something that is discussed or you don't really get to see the visible disabilities or any kind of disabilities in Newham. And so I can totally relate to that.

When I first met you (at an event), we were talking about sort of social media and you were doing a really good talk about social media and sort of social media bullying and trolls. Do you, do you ever experience it and if so, how do you, how do you deal with it?

Fats: I experienced it like every day to be honest with you and how I deal with it is knowing the fact that I've made it this far through physical, mental, verbal bullying.

I can deal with cyber bullying as well. That's what I think to myself. I'm like, OK, I can deal with the cyber bullying if I just push through and you know, just because Tom said ohh, I'm not worthy enough to be on social media or I can't dance when I know full well I can dance I'm not gonna listen to Tom. I'm gonna keep going and pursue my dream. 

So that's kind of the attitude that I have. And then also having social media tools that protects you from seeing negative comments kind of help as well. There’s keywords that you can block from seeing on your actual social media. So now I pretty much don't see any hate at all compared to the first, I don't even know. Maybe 3-4 years. That's kind of how I deal with it. And when I do see it, I don't look at the full sentence I just block and delete and keep moving.

Beth: I think that’s really good because you always hear people say you can get like a thousand positive comments and then you know a lot of people, that one negative comment can just be  the one that they'll fixate on. So I think it's really good that you kind of like set your wards in place and yeah, you don't even entertain it. Because what’s the point?

Fats: What is the point? What is the point? I don’t need to listen to Sally or whoever, who hasn’t even got a picture up and is just cussing everyone. No, they’re the sad ones not me.

Beth: Yeah, I always think it just says more about them anyway than it does about anything else. It's like... it's projection. That's what it is.

Fats: It really is. It's projection and I can't afford to listen to that at all. I know if I listen to that I can’t go far in life, you know.

Isaac: Our last clip features Nick again, as he spoke with Dr Hannah Barham-Brown – A GP who has Ehlers-Danlos Sydrome and uses a wheelchair. In this clip, we join as Dr Hannah discusses disabled representation in our electoral system.

Nick: how do we get more disabled people involved in UK politics? And while we talk about that, you can probably tell me more about your own background in politics as well.

Hannah: Yeah. So I've been known to dabble in politics! So until December last year I was Deputy Leader of the Women's Equality Party in the UK, which we think made me the first visibly disabled UK political party deputy leader ever – which is great, but also bloody horrific. It shouldn't have taken until 2021 to have a visibly disabled like Deputy Leader of a UK party. 

And it's kind of devastating that none of the main parties managed it yet. So I've contested various elections. I've contested local council in Leeds. I've contested the EU parliamentary – the last ones we had for the EU Parliament. I contested the North Yorkshire Police, Fire and Crime Commissioner election about 18 months ago, which was fascinating. And every single time I've contested an election I've come up against so many barriers in our political system. 

So, you know, the first time I contested [an election] was Leeds City Council. I turned up to the briefing for candidates and said: “Has there ever been a wheelchair user on Leeds City Council? And can you tell me if the council chamber is accessible? So if I get elected, will I be able to actually take part?” And they had to go away and find out the answer and get back to me, which I think tells you everything you need to know.

Nick: [Laughs]

Hannah: It was just such a shock to this political system that a disabled person would do this. When I then did the North Yorkshire election… Like York – many people listening to this may be aware that York is an incredibly inaccessible city at the moment. They've basically banned Blue Badge users from the city centre. They've got rid of a lot of the parking, they're not even allowing taxis in. It's been a huge, huge issue. And so I was in this position where I'm sort of like: “I could become the Police, Fire and Crime Commissioner of a city I can barely get into.” Like that's… that's bonkers to me. And so I came across all that. 

And then, like, just our very basic systems…The way we get elected is you go out and you canvas, you knock on people's doors and you say: “Hi. I'm contesting this election. I'd like to know what you think are your priorities for the area. Blah, blah blah.” You don't generally say the “blah blah blah” bit – they don't take you seriously if you do that. It's really hard getting to people’s doors and being able to knock on them if you're a wheelchair user because: lots of people live upstairs; lots of people have gravel drives! And so it got to the stage where I'd go out with a team canvassing. And I would basically be rolling up and down the road that people were canvassing on… and, they'd kind of go and knock on the door for me. And I'd be waving from the pavement – like, 10 metres away – going: “Hi! I'm the candidate. Please vote for me! If only out of guilt that I can't even get to your front door!”

Nick: [Laughs]

Hannah: Like… it's so, so difficult! But then we kind of look at the… more meta level… and I was…. So I'm currently writing a book (I think possibly one book; possibly six books…. so I don't know how big this is going to be) on disability rights. And kind of creating a manifesto for change for disabled people, looking at lots of different sectors of society and interviewing lots of disabled experts. And I couple of weeks ago I went and interviewed Lord Shinkwin. 

He's a disabled peer in the House of Lords – which is lovely because I got to go and have a drink in the House of Lords and. Interview a fascinating human being. I was talking to him, like: “OK. Like, tell me what it's like. What's the kind of disability ratio?” And we have about 800 peers in the House of Lords. Very few of them actually turn up regularly, but we have 800 who have the right to be in the House of Lords. Ten of them have long term experience of disability. 

Now remember that we make up nearly 24% of the population. And out of 800 peers, there are 10 of us. That's kind of terrifying because these are people that inspect our laws. These are people that, you know, get stuff from Parliament from the Commons and go: “Yes. No, no, no, no. You're not doing that” Or “Hell's, yes! that can go through. Thank you very much.” We are not represented. Like… we make up 0.3% of MPs, I think. We’re massively underrepresented in the Lords. And I think what needs to happen… and having had a long conversation with him… We need the major parties to all sign up to say: “Yeah, actually. We need to do more about diversity.” They're doing far better when it comes to gender. It's by no means representative. I think 34% of our MPs are female. 

But, you know, we've got better at gender representation. We're getting better at minority ethnic representation. But we are not there at all, like even in the stratosphere, when it comes to disabled people. And yet we have so much that we need legislative change on, and that we need support for. So I think we need the major parties to all kind of sign up. And there's a general election coming up next year. So if people want to start writing to their MPs now about what they want to see in the various party manifestos, it would be a great time! 

Saying: “Yeah. We want you to commit to having X percent of disabled MPs, with X percent of disabled peers. Because they're the people that get to choose who gets to contest elections. They're the people that get to choose who Labour or the Tory party, or whoever, put forward to be their peers. They have the opportunity to increase diversity in Parliament in both houses. So we need to do that. But I think we also need to kind of make sure that we're supporting disabled politicians when they’re there… because it is incredibly hard to contest elections. 

I'm so lucky that I was part of a party that's been hugely supportive and really prioritised supporting disabled candidates. That is not the case in many major parties, but we need to kind of collectively come together and go: “Actually, we're going to get behind as many disabled candidates as we can.” And you can do that from wherever you are in the country, in the world. There are ways to support people on the local and national level. And I think we need to come together and say: “Actually, where's our representation? We want more. What are you going to do about it?” And support those who are contesting elections because it's bloody hard work.

Nick: So how would we support the disabled MPs that we like that are contesting [elections]?.

Hannah: Yeah. So find them, first thing! There aren't many of us, but we're there! I mean… When I contested, like, the police fire and Crime Commissioner election, I was really overwhelmed by people who…. like had followed me on social media, who were like getting behind [me]. Sharing stuff to their [social media] stories.

You know. Leaping on TikTok going: “if you're in North Yorkshire, please go and vote for this woman.” Random people who were in the area, who were sort of like: “I've never met you before but I really like your policies. I really want to support you. I'll go and drop some leaflets off.” You know, there are various ways people can get involved. And you know, I know times are tough right now - there's a cost of living crisis. 

But if financially you're able to support candidates – because it costs a small fortune to contest elections and that's a massive barrier for disabled people as well – that sort of thing can be really helpful. So there are various ways you can do it. But I think you know a really key way that everyone can do is write to their MP and say: “I have serious concerns about the lack of disability representation in the Commons and in the Lords and in local councils. What is your party doing to address this?” And if we all did that then the message would get through that actually there is… there are votes in in this. And that's the thing. If people realise that 16 million of the population want this as disabled people, that's one hell of a lot of votes they don't want to lose. We have massive electoral power as a community that we very rarely access.

Isaac: That’s all from us for 2023, but we hope you’ll stay tuned next year as we have some very exciting guests to be announced soon!

A huge thank you to all of the guests who have featured this year, and of course to you, our listeners!

We’d always love to hear what you think, so get in touch with us by emailing us at disabilitydownload@leonardcheshire.org – or you can contact us on Twitter or Instagram using the handle @LeonardCheshire. If there’s a guest you’d like to hear from, reach out to us and let us know! And don’t forget to like, share and subscribe to the podcast. Thank you for listening to The Disability Download!