Coalition of 350 disability organisations against Assisted Dying Bill

12th November 2024

bbc.co.uk/accessall

Access All – episode 133

Presented by Emma Tracey

EMMA-               I am a bit croaky this week because I was at my sister’s wedding at the weekend! And I can’t stop talking about it and weddings, and I need somebody to get this wedding chatter out of my system. And no better person than one of our guests this week, Reece Finnegan-Knight, who basically splurged his wedding all over social media, and he’s blind so it was really accessible. So, I get to talk about weddings and accessible weddings. Hello Reece.

REECE-               Hello. I’m so thrilled to talk about weddings, I can’t get enough.

EMMA-               Really?

REECE-               Yeah. How was your sister’s?

EMMA-               Oh, it was so beautiful. I was quite hard-arsed on making sure that I felt the dress and got a bit of the cake and felt the flowers and stuff like that. But it is a very, very visual day, isn’t it?

REECE-               It is.

EMMA-               And you’re blind as well, so what did you do to make your wedding more accessible?

REECE-               I couldn’t agree more with you that I’m so extra about these things now in a way that I never was before. I was always really awkward about, ‘oh no I don’t want to just impose myself too much and go and feel everything’. But now I’m like, no, I’m going to go do all that. I’ve still got a little bit of useful vision, I’ve got just less than 5% so kind of fluorescent…

EMMA-               Yeah, yeah, whatever.

REECE-               [Laughs] soz to rub it in but, you know. So, I can still see, fluorescent lights basically are my favourite thing in the world. So, we just covered the room in lights essentially. When my wife walked down the aisle I could see the big white blob of the wedding dress. Not to call her…that was bad calling her a blob.

EMMA-               The blob of the wedding dress!

REECE-               [Laughs] I’m so sorry. That sounds awful.

EMMA-               No, it was great.

REECE-               I saw the whiteness of the wedding dress. We had candles all up the aisle, lining the aisle, which was a hilarious fire hazard for a blind person navigating a wedding room.

EMMA-               Yes.

REECE-               We had an audio guest book, which I loved. So, all the guests could leave us little messages in a phone, which was very cute.

EMMA-               Oh, that is cute. My sister had a video guy and I’m really hoping that he had his sound on.

REECE-               Yeah, our videographer left the audio on for everything, where they usually don’t. I think usually it’s quite an artsy film with all the music and stuff in the background. And we were like, no, no, none of that stuff, we just want all audio; I want to hear every little thing that anyone said across the whole day.

EMMA-               Yeah. It was lovely because I was a bridesmaid, and I’ve never been a bridesmaid before because I think I kind of shied away from it – I’ve never actually been asked – but I kind of shied away from it because of all the jobs. I was her sister so I got to be a bridesmaid without all the dress fixing and all that kind of stuff.

                            Anyway Access Allers, listeners, have you don’t anything to make your wedding more accessible for you or someone in your wedding party or your wedding guests? If so let us know. Email accessall@bbc.co.uk and tell us all about it, because I could definitely run the wedding chatter business over the next few weeks on the podcast very easily.

                            Now, Reece we are going to talk to you again later about some other exciting stuff. For the now – I’m very Scottish today – for the now let’s say ‘on with the show’ together. Are you ready to try this?

REECE-               I’m so ready.

EMMA-               Three, two, one:

TOGETHER-       On with the show!

REECE-               Did I do it okay?

EMMA-               Perfect.

MUSIC-               Theme music.

EMMA-               Hello, I’m Emma Tracey and this is Access All, the podcast that likes to delve deep into disability and mental health stuff. Now, you can rely on us for the serious side of things, but we love to bring the fun too, so if you haven’t already please do subscribe to the podcast on BBC Sounds.

                            This time, on the serious side, why are 350 disabled people’s organisations teaming up to oppose the Assisted Dying Bill that’s soon to be debated in the House of Commons? And where does that leave the disabled people who oppose the bill? And I get to indulge in some Strictly Come Dancing magic with an insider. I’ll be speaking to Reece Finnegan-Knight, he’s a blind assistant TV producer on the show, and he’s also one half of TikTok sensation, Blind & Blonde with his wife, Sophy.

                            350 disabled people’s organisations, led by Disability Rights UK, have announced that they’re forming a coalition to oppose the Assisted Dying Bill. The bill has been in the headlines for a few weeks now, and if it makes it into law it will give terminally ill people in England and Wales the legal right to end their lives. MPs will initially debate and vote on it on 29th November, although there will need to be further debates and votes before it can come into law. If it does pass it will give the choice to end their lives to those with a life expectancy of six months or less, provided their decision is approved by two doctors. The organisation leading the coalition is Disability Rights UK, and up to now it has had a neutral stance on the topic. But on 12th November it announced that it would be opposing the bill. Bethany Bale, policy and campaigns officer with Disability Rights UK joins me. Hi Bethany.

BETHANY-         Hi, Emma. It’s lovely to be here. Thank you for having me.

EMMA-               And Tom Shakespeare joins me too. He is an author and a professor of disability research at the London School of Hygiene and Tropical Medicine, and he’s part of a group of eight disability rights campaigners and academics who have written to MPs and peers urging them to back the bill because, in their words, everyone deserves the chance of a good death. Hi Tom.

TOM-                   Hi there, nice to be back.

EMMA-               Here are some facts about how the bill will work. It’s called the Terminally Ill Adults End of Life Bill. The bill would make it legal for over-18s who are terminally ill to be given assistance to end their lives. There are requirements, including having the mental capacity to make the choice away from coercion or pressure; they must make two separate declarations about wishing to end their life; two independent doctors must be also satisfied seven days apart from each other; then a High Court judge needs to make a decision; and after that there are 14 days of a cooling off period before anything else can happen. Bethany Bale, you’re from Disability Rights UK and you oppose the bill. Why is that?

BETHANY-         Because we want to be assisted to live before we are assisted to die. There are rights violations in practice and in policy, and all of this lack of choice really leads us to concern around safeguarding, particularly that it is a private member’s bill that doesn’t give us appropriate time to scrutinise this. It lacks crucial detail. And why not focus on fixing the foundations first, like the NHS in crisis,  like palliative care not being funded, to support us to live before you allow us to die?

EMMA-               So, better healthcare and better social care first before this bill?

BETHANY-         Absolutely, yes.

EMMA-               Professor Tom Shakespeare you are in favour of the bill. Why?

TOM-                   I back Kim Leadbeater’s bill because I believe that disabled people should have choices and should have their voice heard.

EMMA-               Now, Bethany, why has Disability Rights UK changed its stance?

BETHANY-         Our shift in position has come from a very rights based political standpoint. A decision that has been made on the understanding that we feel like we must be assisted to live before we are assisted to die, and that in practice actually our rights are so violated in this country, both through policy and in practice through failing public services meaning that we can’t access those basic necessities.

EMMA-               Tom?

TOM-                   Disability Rights UK is not in this case the voice of disabled people because disabled people are more likely to support this act than oppose it. In the general public it seems to be about three-quarters of the public support this act, and among disabled people it’s more like four-fifths according to an in-depth survey in March. So, I would like to ask Bethany whether Disability Rights UK has any data at all showing that disabled people oppose this end of life dying bill?

BETHANY-         Our coalition though is made up of 350 disabled-led organisations, that is a fact that can’t be disputed. And those organisations have members, and all of their members have carefully considered this position.

TOM-                   I don’t think that’s true. All the constituents of DRUK have carefully considered this? I don’t think that’s true.

EMMA-               Well, Tom, why should they have considered it more in your view? What’s your view on this?

TOM-                   My personal take is that this bill has all the safeguards we want, is restricted to end of life, and therefore should be supported. As a disabled person I do not have a terminal illness, but if I did I would welcome this bill. And of course nobody has to avail themselves of these options; it’s a choice. And I believe in independent dying as well as independent living.

EMMA-               What about some places in the world adopting a bill around terminally ill people and then the restrictions being loosened and loosened and it becoming unbearable suffering, which would potentially include disabled people who don’t have  like a six-month life expectancy?

TOM-                   That was the case in Canada, and it’s also been widened in Belgium and in the Netherlands. However, this bill does not state suffering is a reasonable cause of assisted dying; it’s any for assisted dying. And that’s where the difference between this and Canada exists. In Canada they were able to say look, disabled people are suffering even if they’re not dying, therefore they should be included. The criterion is dying.

EMMA-               Yes, it is in this bill, but once the bill is in wouldn’t it be easier then to loosen the criteria?

TOM-                   I don’t think so. There’s a speed limit of 20 or 30 or 50 or whatever miles an hour, we don’t change that every year, we don’t have more votes on it. I think this will settle the case and it will be restricted, and so it should be.

EMMA-               Okay. Bethany?

BETHANY-         I think it’s completely inappropriate to say that this bill has sufficient safeguards. This bill is a private member’s bill which means that there is much less time for scrutiny, there is five hours to debate. We haven’t debated this for a long time in the House of Commons. There is very little detail on the safeguards. It does of course prohibit coercion, as it should, but actually it is incredibly difficult to identify coercion taking place. And there needs to be more detail on how that is prevented and people are protected.

EMMA-               Let me just talk to you about coercion, Tom. Obviously it’s built into the bill that people shouldn’t be coerced or put under pressure. How can doctors and the judge involved in this, because it’s a High Court judge as well, be sure that there hasn’t been coercion from a person?

TOM-                   I honestly think that if you’ve got six months or less to live that’s not your main concern. Your main concern is dying well and without suffering. And the whole point of this is there’s lots of safeguards. Like, for example, a doctor cannot be a relative or potential beneficiary of the death; there is a seven-day cooling off period; then there’s an independent doctor; and then judging things like eligibility, capacity, any absence of pressure or coercion; then there’s the High Court, and again they’re checking that there’s no coercion; then there’s another 14-day cooling off period; then there’s a second declaration. And this bill makes coercion or pressure a legal offence, so if you’re found to have coerced or pressured anybody you are liable in law for that. And that’s very strict.

EMMA-               Okay. Bethany?

BETHANY-         There is, as I say, in terms of insufficient detail on safeguarding and insufficient detail on how we would prohibit coercion. It also allows proxy signatures, which there’s again insufficient detail given on how that would be safeguarded. And really what this needs is an independent commission. We have not really had enough done on this to provide us independent information and research.

EMMA-               So, like a royal commission where they spend some years on it?

BETHANY-         Yes, absolutely.

EMMA-               What I’ve been told in the past is that royal commissions don’t necessarily lead to bills and action etc. So, is that just not kicking it down the road?

BETHANY-         I think so. It’s not about kicking it down the road; it’s about doing it properly and making sure that our rights are protected.

EMMA-               Tom, were you surprised at this coalition? Were you surprised at the 350 disabled people’s organisations coming together? That’s a lot of organisations.

TOM-                   I was very disappointed, yes. I think it would be much better if disabled people’s organisations recognised that disabled people are divided, some support, some don’t, and therefore they should not come out on one side or the other, as Disability Rights UK previously had it.

EMMA-               But it’s quite a big group though, Tom.

TOM-                   Well, only 10% of disabled people are actually in their organisations we found. And lots of ordinary disabled people support the bill. So, I’m afraid on this case disabled people’s organisations are out of touch with what ordinary disabled people think and feel.

EMMA-               But can you understand why there is a disabled voice against the bill?

TOM-                   I literally have looked at the evidence and I think we are safe. I’ve been speaking to disabled people who are in favour of the bill; I’ve been speaking to disabled MPs and peers who are in favour of the bill, and who are reassured by the provisions that make sure that there is no pressure.

BETHANY-         I would just like to say as well on Tom’s point about fear and that we are safe, I think that we cannot say that when we are not currently safe as disabled people in this country. We have benefit related deaths, our rights are violated not only in practice but also in policy in the political choices that are made by the government day in, day out. And so I think that when we talk about choice we completely agree that disabled people should be empowered to make choices about their lives. They should the centre of their life and what happens. And I think at the moment they can’t make that choice, and that’s really the key thing.

EMMA-               Bethany Bale, from Disability Rights UK, and professor Tom Shakespeare, thank you.

BETHANY-         Thank you very much.

TOM-                   Thank you.

EMMA-               This is a massive issue for disabled people and this bill will be going through parliament for a while, so Access All will be keeping across it and we would love to hear what you think. Please get in touch in all the usual ways. You can email accessall@bbc.co.uk, and you can find us @BBCAccessAll on Instagram and X.

EMMA-               Reece Finnegan-Knight is one half of the popular TikTok duo Blind & Blonde, which has amassed over 4 million likes, as Reece and his wife Sophy share their lives and what it’s like to be in an inter-abled couple. Let’s find out what that is in a minute. Spoiler: Reece is the blind person in that couple. You already knew that from the intro to the show. But yeah, he’s the blind in the Blind & Blonde. If you follow them you might have also got a sneaky peak into Reece’s other job recently, because he did a video about being a blind TV producer, assistant producer on none other than Strictly Come Dancing [Strictly music], which I absolutely love at the moment. It makes my heart flutter. Reece, we’ve known each other for a while, we’ve had a chat at the start, we’ve even played some sport together, which basically nobody else has done with me. You are so, so welcome to Access All. Thank you for joining me.

REECE-               Thank you so much for having me. I’m so excited to be here.

EMMA-               Let’s talk about your Blind & Blonde TikTok.

REECE-               [Laughs] it was all Sophy’s idea really. We started it back in 2021 in the madness of post/present lockdown, and we just really wanted to start making content about our lives together. As you know yourself, Emma, there’s a lot of funny scenarios that come out of being blind, and also lots of scenarios where people who’ve never met a blind person I don’t think they really understand how blind people do normal, everyday things. So, we were like let’s make some hopefully funny content about it and try and raise some awareness, but mostly just make people laugh really. And that’s how it all started.

EMMA-               And make yourselves laugh I’d imagine as well?

REECE-               Yes [laughs].

EMMA-               Now, Reece some of your videos have had millions and millions of views. Just to give people a flavour of the type of stuff you make here’s a clip of one of them:

[Clip]

SOPHY-              A day in the life of my blind boyfriend, stereotype edition.

REECE-               This morning I woke up like all blind people and bats do, hanging upside from the ceiling.

SOPHY-              We got up and ready for the day. I wanted to try out my new perfume, but I think it confused Reece a little bit.

REECE-               Who the hell are you?

                            Today was such an exciting day because we went Christmas shopping, and Sophy took me the blind equivalent of Disneyland, the candle aisle at TK Maxx.

[End of clip]

REECE-               These are our absolute favourite videos to make, the stereotype stuff is so much fun. They take absolutely ages, but I think for me they absolutely encapsulate what we’re trying to do with TikTok I think, and Instagram and all the socials. I think showing people the funny side of being blind, and taking the everyday stereotypes that often as a blind person make you feel quite small if someone was to treat you like that in the real world, I think it’s turning that on its head and putting the power back in my hands. Do you know what I mean?

EMMA-               Yeah.

REECE-               And having a joke out of it.

EMMA-               Totally. And you did something about colours once and you were just really silly about it, and I think sighted people are absolutely just obsessed with how blind people see and understand colour.

REECE-               Yeah.

EMMA-               And making fun of that in that is not such a big deal. I think it was about laundry, wasn’t it?

REECE-               Yes.

EMMA-               And I just love that because blind people do laundry too. Now, most recent video I saw was you at work. And I didn’t know until I saw this video that you are an assistant producer, a blind assistant TV producer on one of the biggest shows, Strictly Come Dancing. I mean, what’s it like working there?

REECE-               Do you know what, it’s amazing. I’ve worked in telly now for I think it’s seven years this year. I’ve done Strictly for the last two or three years, and it’s just the most lovely environment to be in. And I think this year more than any I’m just super proud and privileged to be on it. Obviously we have the representation of Chris McCausland being the first blind contestant, so as someone who’s worked on the show for a couple of years like that that obviously means a lot to me, and having that representation and seeing someone with my own condition actually on the show and smashing it that’s a huge deal.

EMMA-               So, he’s got the same condition as you?

REECE-               Yeah, we’ve both got RP.

EMMA-               Oh wow, retinitis pigmentosa for those of you who don’t know.

REECE-               That’s the one.

EMMA-               And were you involved in getting Chris on? What’s your involvement in Chris McCausland, blind comedian, cultural event of the year situation going on here?

REECE-               So, in terms of stuff with Chris, it’s been great to be able to advise wherever I can in terms of stuff specifically to do with blindness or how’s this all going to work. But to be honest, there’s not a massive amount I need to advise on just because I’m very lucky to have producers and executive producers who are just incredibly good at their jobs, and they just get it instantly. You know what I mean? Like, they know how they want this to come across.

EMMA-               To be fair, you have put the groundwork in. So, you’ve been a blind person in their faces for the last two or three years.

REECE-               [Laughs] I have very much been.

EMMA-               And they’ve seen the support that you’ve put in place. So, what kind of access stuff is in place for you at work?

REECE-               Yeah, work have always been brilliant with access requirements. Stuff like there’s a tactile line on the ground around the site which I can basically follow with my cane, which is amazing.

EMMA-               That’s amazing!

REECE-               It’s really cool.

EMMA-               That’s actually a big deal.

REECE-               I love it. Again, it’s a big old compound where we film at Elstree, and again it is often packed to the brim with people and dancers and glitter and stuff. I tend to try and, where I can I need quite a bit of help getting around, but that line is super useful. And it’s just nice that they’ve thought to do that.

EMMA-               I could talk to you about this all day.

REECE-               I know.

EMMA-               But on a recent episode Chris McCausland and Dianne Buswell, his partner, did their couple’s choice, which is like basically a really personal dance where you don’t necessarily have to do specific Latin or ballroom, you can do what you want basically. They did it to Instant Karma by John Lennon, and the audience went absolutely wild:

[Clip]

PRESENTER-      [Cheering] dancing their couple’s choice, Chris McCausland and Dianne Buswell.

[End of clip]

EMMA-               And the biggest cheer came when Chris put his hands over Dianne’s eyes

[Clip]

GEORGINA-       As Chris brings his hands over Dianne’s eyes the lights go out. When they come up again Dianne is lying on her back across his shoulders [cheering]. He spins round with his arms outstretched, and she swivels around his body as he continues to turn until she’s back on her feet.

[End of clip]

EMMA –              The sightees definitely thought it was a really special moment. [laughter]

REECE-               Yeah [laughter].

EMMA-               I was just like, amazing she’s on his shoulders and he’s spinning, that’s awesome.

EMMA-               What I really loved about that couple’s choice was that it wasn’t a sob story. It was fun, really fun.

REECE-               That was exactly it. I think what Chris wanted was that this is not a sad dance, this isn’t a kind of heartbreaking story of sight loss and all this stuff; it’s very much a joyful moment of Chris celebrating that he’s doing the show and that he’s the first blind contestant, and that he is changing perceptions. And I think that’s the one thing that I’ve loved so much about his dance. You’ve kind of alluded to it there, actually watching the dance for us doesn’t really do much, I couldn’t really get goosebumps from it because it was like, well I can’t see what’s going on.

EMMA-               Yeah.

REECE-               But hearing that reaction and hearing the song and knowing what they’re doing and the impact that’s having for people, audiences at home that maybe have never seen a blind person or met a blind person before, I think that’s what’s goosebumps about it. Do you know what I mean? That’s what’s amazing.

EMMA-               Can we get geeky about the audio description for a second?

REECE-               Please, yeah.

EMMA-               Because I’ve talked to loads of people on this podcast about it but not another blind person. What difference did that make when they brought that in to Strictly Come Dancing?

REECE-               Look, I don’t know much about dancing. Everything I know about dancing is from working on the show. But just to be able to watch the show, and the way that Georgina describes the dances she gets the tone over so perfectly, like, just with the words. The eloquence of it is so amazing. And the timing that they have to get right to make sure that you enjoy the music as well as know what moves they’re doing. Do you know what I mean?

EMMA-               Yeah, it’s incredible.

REECE-               It’s just so incredible.

EMMA-               And then she has to break script if they get it wrong or whatever.

REECE-               I know! Those are my absolute favourite bits; I love the chaos when something goes a bit wrong, and it’s like, ‘They look very uncomfortable as they nearly drop their partner on their head’. Do you know what I mean?

EMMA-               Yeah [Laughter].

REECE-               I love that stuff.

EMMA-               On Saturday night it was like, ‘JB almost falls over’.

REECE-               Yeah, [laughs] obsessed with that.

EMMA-               Absolutely brilliant. But listen, even though the audio description is fantastic, I have to be very honest with you, I really don’t know what they’re doing. They could have sounded patronising the judges on Saturday night because they were like, ‘I don’t actually know how you’re doing it’. But I was sitting there going, I don’t actually know either.

REECE-               [Laughs].

EMMA-               So, blind person to blind person, can you imagine doing what Chris is doing?

REECE-               I think everyone had no idea how this was going to work; Chris has said it quite a few times. And it was all very much trial and error, like, let’s get to the training room and Dianne will see how she’s going to… She’s never taught a blind person how to dance before and Chris has never learnt how to dance before, so it’s all a massive learning curve. And I think his whole thing this whole series has been, I want to do everything the same as everybody else, and let’s just see if Strictly works for a blind person. And I guess we’ve got the answer that it does. But you’re absolutely right, it’s so difficult. The only way that I feel that I can maybe visualise what’s going on is because since I’ve started working on the show I’ve asked to have a few lessons…

EMMA-               Have you?

REECE-               …to find out what the dancers actually feel like. So, that helps me visualise it a little bit more.

EMMA-               But hang on a second now. I still need to know, do you know how they’re doing it? Like, are they literally sitting down at the table and learning the footwork on his hands? What is he doing? Do you know or is that a really big secret?

REECE-               I don’t think it’s a big secret. I think it’s different depending on each dance. I think the main thing that they’re doing is very much a tactile thing: they’re getting in the training room and Dianne is showing Chris, like moving his body around, and Chris is feeling Dianne’s body, feeling where her legs are and where her feet are. And they’re just running it through over and over again. Chris has a really good memory, in the same way that I think a lot of blind people do, because we have to. And it’s all kind of just learning something through muscle memory over and over again, and trying to replicate what Dianne is telling him through trying to turn that into actual movement and dance. Do you know what I mean? I mean, it’s incredibly hard, so, so incredibly hard. And that on top of the fact that he has to then move around the floor.

EMMA-               Oh, my spatial awareness is terrible! I wouldn’t…

REECE-               Oh my god, same.

EMMA-               Oh my goodness.

REECE-               It’s crazy. And then it’s so loud in there as well. I don’t even know if he can really hear Dianne across the floor when she’s shouting instructions. So, again there’s so much, they talk about it all the time, but there’s so much trust there; they have to really trust that they’re going to do everything to the second and to the letter that they did in practice.

EMMA-               I could talk to you, Reece Finnegan-Knight, all day.

REECE-               Oh, same to you.

EMMA-               Thank you for being so nerdy and geeky about Strictly with me. It has been an absolute joy. Wedding chats and Strictly, I mean honestly, could it get any better?

REECE-               Oh mate, what more could you ask for?

EMMA-               Absolutely. Reece Finnegan-Knight, thank you so much for joining me.

REECE-               Thanks Emma.

MUSIC-               Strictly Come Dancing theme tune.

EMMA-               That is it for this episode. Thanks to my guests and thank you to you for getting in touch. It has all actually got a bit political this week. Anya emails – I hope we got your name right there, Anya – and Anya is very frustrated with the Labour government’s first budget which came out a few weeks ago. And she hopes that there will be a stronger focus on employment regulations in the future. Michaela McDougal got in touch, she was listening to our episode on the US elections, and she’s concerned that the election of Donald Trump will mean that disabled Americans won’t get a say in the policies which affect their lives. We also had Melissa Ortiz on that episode and she believes that Donald Trump will be good for disabled Americans and that he will engage with policymakers who will advise him on the best policies to help disabled people fully integrate into their communities.

Dopa mining and doom piling, they’re the watchwords from last week’s episode. If you’re curious to know what they mean then listen to our episode with Dr Mine Conkbayir and her comedy actor husband, Paul Whitehouse. I’ll give you a clue: they’re ADHD related.

                            Subscribe to us on BBC Sounds and please do get in touch. You can email accessall@bbc.co.uk, and we are @BBCAccessAll on Instagram and X. See you next time. Bye.