The Way We Roll
A seriously funny take on life from the disability driven duo... Simon Minty and Phil Friend.
The Way We Roll
Keep it light: Assisted Suicide update and when is hypocrisy acceptable? Plus best bits of 2024
On Friday, 29th November, Members of Parliament voted in favour of a bill to legalise assisted dying in England and Wales. Phil, who is part of Not Dead Yet, an organisation that opposed the bill, gives us an update. He was also at the demonstration outside Westminster Palace.
On our last podcast, our guest Peter Torres Fremlin said that sometimes, as disabled advocates, we need to mature and accept people’s motives, which might not be the same as ours, but a win is a win. We debate some moments of possible recent hypocrisy, i.e. funding for Not Dead Yet and the Shaw Trust Power 100 awards.
We talk about our favourite podcast of this year, plus our most listened-to show and what our best moment of disability inclusion was. All wrapped up in a bow, this is our present to you this Christmas. Thank you for listening and your support.
Links
BBC Who will scrutinise the Assisted Dying bill?
BBC Parliament votes live updates on the day
The Way We Roll podcasts we mention
International Perspectives with Susan Scott-Parker and Peter Torres Fremlin
Former CEO and Chair of Scope, Richard Hawkins and Alice Maynard
Announcer 0:00
Music.
This is The Way We Roll presented by Simon Minty and Phil Friend. You can email us at mintyand friend@gmail.com or just search for minty and friend on social media. We're on Facebook, Twitter and LinkedIn.
Simon Minty 0:32
Hello and welcome to The Way We Roll with me, Simon Minty and me, Phil Friend. We are recording in December 2024 and we've got a couple of topics, and then we're also going to have a little review of the best moments from this year's podcast that we've made, and also best moment of disability inclusion. But let's start off with you, Mr. Friend. You have been well, Not Dead Yet, assisted suicide demonstrations.
Phil Friend 1:02
I am the oldest demo'er in the universe. I have I sat all day outside parliament with all of my chums being a disability activist. It was great fun. It was bloody freezing. It just reminded me why I was always somebody who preferred to be in nice, warm rooms talking to people about protests rather than being a protester.
Simon Minty 1:27
You're a fair weather fair weather protester, absolutely.
Phil Friend 1:29
Yeah. I do it in Barbados, you know. But being serious, just for the listeners that aren't really aware, yeah, not aware. Where have you been? An MP called Kim Leadbeater, incidentally, the sister of Joe Cox, who was very sadly killed by one of her constituents. So Kim took over from her sister, but Kim put forward a private members bill, which was drawn top of the heap. So it meant it got parliamentary time, and it had its second reading on the 29th of where are we now? As part of a group called Not Dead yet, UK, and there are many others who are part of that group. We've been very as I think many of you will know, we've been campaigning against a change in the law on assisted suicide because we believe that it makes the lives of disabled people far more vulnerable and tenuous. So we organized demonstrations. We've also been campaigning fiercely to try and get MPs to vote against a change in the law. Unfortunately, that's not what happened, and Parliament voted for a change in the law. Now it's not the end of the road here, because there's got to be more parliamentary committee scrutiny and all that kind of thing. And then it's expected in about April next year 2025 that this will come back again and then be voted on again. So I may be paraphrasing some of the procedural stuff here, but it's not a done deal yet. Let's put it like that. So that's why I and many others were outside parliament, protesting and trying to get the attention of MPs to to take this matter. No, that's not they were taking it seriously. Of course they were, but we wanted them to understand the disabled person's perspective.
Simon Minty 3:28
I just want to say thank you for your Rory Stewart, little explanation. There, a little bit of background for the listener. The rest is politics. That's great
Phil Friend 3:38
if you if I was really Rory Stewart, I'd start by saying, so tell me a bit about your childhood, Simon.
Simon Minty 3:45
I mean, whilst you said, Where have you been, or how can you not know about it? I I imagine half the population don't know about it or are not that interested. And we've got lots of international listeners, so I think it's really important that that whole context is there. So thank you.
Phil Friend 4:01
I agree. And and I must have assumed everybody knows what I'm on about. I'm very passionate about this issue, but a lot of people, you know, it's not something that troubles a lot of people. And to be fair, there will be disabled people, of course, who believe that the law should change on assisted suicide, you know, but I've met some of them, so that's where I'm at, really. And I think I don't know what there is to say about that, but normally, what would happen at this point, you've asked me penetrating questions, and you'd put the opposition view, wouldn't you?
Simon Minty 4:31
And I mean, anyone who listens to us regularly will have, I mean, I just looked at the last year's shows, and I think it's come up twice. You are one of the key people behind not dead yet, partly because people like Baroness Jane Campbell can't be as active, but you Liz, Carr, others are really kind of at the forefront. Um, it did the fact that, I mean, think there's 55 votes in favor. So in theory, if 30 MPs change their mind at the next vote, it could swing back. What is the sort of general feeling? It must be a bit deflated, or maybe as expected, is it yes, we still go again? Or are you more about safeguards? We want to make sure this can be as tight as possible, and we're trying to prevent, you know, mission creep, almost that it suddenly becomes really vunerable or more worrying for some disabled people.
Phil Friend 5:26
Okay, let's start with the top of that, really, no, we're not giving up, and you're absolutely right there were 40 abstentions as well, if you add that to the numbers, who you we need to persuade to change their mind, it would be quite a big majority against the law change. So we're not giving up at all. And you're absolutely right that there are the Liz Carr is extraordinary, absolutely I don't know how she does it, because the amount of media and telly all that stuff the telly on she was on it.
Simon Minty 6:04
I mean, the amount of people say I saw Liz Carr. She's done more than Silent Witness now, hasn't she?
Phil Friend 6:10
Yes um, she gets royalties. But the thing about Liz, which I I want to say publicly, is you don't see what she's doing behind the scenes. I mean, she is just tireless, and it takes an enormous amount out of everybody, including Liz. So when we lost the vote, there were a lot of very, very tearful people. I mean, I don't know Liz wasn't I think Liz was being interviewed at that point, probably. But no, we were all it was a very emotional moment. And I think Jane, as you mentioned, Baroness Campbell, sadly, was in hospital across the road in St Thomas's, and she apparently could hear us so that we were kind of sending messages via megaphones or whatever. But yeah, so where are we at? Well, I think where we're at is that we believe that this bill has all sorts of issues that really would not make for good legislation, and we tend to focus on things like the definition of "terminal". For example, there isn't one, but they talk about six months to live well, doctors generally agree they can't be that precise. So what's fascinating when we think about how this bill might be expanded, our opponents always say, when we say slippery slope, say that that's rubbish. It doesn't exist, etc. I'm not going to use the term slippery so I'm going to talk about expansion, how these laws get expanded so they include more people, at the moment, as it stands, people with motor neuron disease and things of that sort wouldn't be covered until somebody says you've only got six months to live. All of the campaigning that's been done on this legislation has come from people like people with MND, and interestingly, one of the loudest voices in this recent campaign, Esther Rantzen who has got cancer, will probably be the first to be covered by it, but all the rest won't. What does that mean? It means that already conversations are going on to expand the definition to include such things as unbearable suffering. Now that changes the ballpark. Once you have a law like this, it inevitably changes everywhere you look, even Oregon, which is held up to be the absolute no, it's never changed. What's going on in Oregon is oversight has changed. People don't look much now. There aren't reports saying how many people you know would was seen by the right numbers of doctors, or they don't keep the data, so you have no idea what's actually going on in some areas Canada within three years, four years of them passing the law, they changed it twice, and they are about to talk about people with mental health conditions being covered by it. So, so that's one of the big scary things of this.
Simon Minty 9:13
I enjoyed your voice rate rising there. Uh, that's not often I hear, yeah, the passion and by the way, I am making light. But I'm not pretending this is not a terribly serious subject, and and your suggestion is the hardest part was this idea that doctors, law, legal or government can assist someone to die if that's been voted now, it's all up, up in the air. Everything's up, you know, it could, it will, it would, potentially, could change. Could potentially get broader. I was speaking to my sister about this, and she's not an expert on this. She said, listen, if I get to a point where I don't know what's going on and I'm not aware of my surroundings, you know, I'm totally up for this. Yes, and I think that's not even what it's covering, Jane, but the point is, that's what lots of people might well say. So suddenly you're right. It's like, well, we've The hardest part was, will we agree that there can be this sort of death once we've done that? And then presumably you're saying this will creep and creep and creep, and then there'll be people who have a disability, or even not a disability, some sort of mental health condition and
Phil Friend 10:25
well, one of the fascinating things that occurred while we were campaigning before the vote, was research done by a woman called Chelsea Roth, looking at anorexia, it's a particular issue with her and and the people she works with. And I'll give you a link to her organization for the show notes. Chelsea Roth has been a very has done very detailed look at this issue. And in some jurisdictions, anorexia is covered, if you can show that by stopping taking food that will cause a terminal illness so suddenly and apparently, 60 young women have died by assisted suicide who have anorexia. Now that isn't Britain, but one of the scary bits is it doesn't take much to swap, you know, certain things to become a terminal illness. At the moment, six months to live is the definition. The other thing that people don't really talk much about is the main going back to your sister and your conversation with her, the issue that's at play here is this idea of being a burden, being a burden on other people. Okay, there's two ways you can be a burden. Either you can feel like a burden because they keep telling you you are, or you can feel like a burden by watching what everybody's doing to help you and feeling it's not fair on them. So there's this kind of desire you have to end your life because of what happening to others, or that they have had enough of you and they want you to, you know, go. That is very subtle, and coercion is part of that, and what we're asking GP's to do, potentially, is to spot that. Now, they're not trained, they're not experienced in this, and I know about you, but whenever I go and see my doctor, it's a different doctor. It's a group practice. I don't have a GP. I have lots of GPs, so there's some issues like that. I mean, I know we don't want to spend the whole podcast on this subject, but it is that difficult when people talk safeguards, and I talk and the way I'm now talking, you begin to think ahead of it. Final point, there must be a judge involved, one of the safeguards, two doctors and a judge. Okay, there are apparently 18 judges in the family division that would carry the responsibility for these judgments. There are 18 of them. The estimate is 6000 cases a year. That's 400 each. And we've got to do it very quickly, because obviously six months to live. You work it out. I mean, we, I don't about you, but I hear regularly on my television the fact that people who've been raped are still waiting for a hearing five years later, this our judicial system is under enormous strain, as is the NHS and as is our social care system. So all of these things conspire to make me feel, and many others with Not Dead Yet UK to feel that this is a very, very dangerous time.
Simon Minty 13:50
So the first bit I'm going to say is, is a very uncomfortable bit, and there's a sort of irony that if people did take an earlier death, would that save money in another way? But that's exactly the argument, which is, like, we is it about that that's the right thing for them, or is it going to start saving money? And we're like, this is a quicker, easier way out. And my dad was very poorly in hospital on the day of the vote. And I think I said to you for a joke, you know, once the vote passed the hospital round the room and said, anybody, you know, we can, we got a green light. Um, the thing that was really curious, it span through my head. My dad was not in a great place. It's very difficult for us as a family. You can make very instinctive, quick decisions. I mean, by the way, my dad wouldn't even qualify, as it stands, but it's more about that little at the moment, you can't even think about it being an offer. It's not an option, but then it will become an option. And so is it the family start thinking in a different way, even beautifully. This is the best thing for them as well as us, but just even. And then does the individual start feeling some sort of guilt burden all of those? Things. I have a friend. We've had her on the show, seeing a consultant in geriatrics Francis, and she said, at the moment, we do have to take a view. We will have families. And we kind of, with experience, you get an idea what most families, of course, are fabulous, but occasion, you'll get a family that will go well, is it best that we let them go is that bit and you're like, Oh, the motive seems something sort of slightly misplaced it, but, yeah, you're right, four, 6000 I was trying to work it out with something like two a day. But if that's only six months ago, you know, that's four a day on top of what they've already got. It's
Phil Friend 15:38
Since when has death been a treatment, you know, since when? Well, this has been, yeah, one of the biggest issues in this bill is that doctors can raise it. So at the moment, you as a family, looking at your relative, can say whatever you want. The doctor says, Look, you know, I cannot. You can tell me not to treat them. You can tell me not to give them resuscitation, and so on, exactly, but, but after this passes, if it does without amendment, a doctor can say to you, well, there is, of course, the option of assisted suicide. Now you as a family now are thinking, Oh, what are you thinking? I mean, I don't know. At the moment that would not be allowed.
Simon Minty 16:26
I kind of, I don't know. I never thought that. This is me shooting from the hip here, not thinking it through. I imagine death has been a treatment since the very start, but it's never been legally sanctioned or part of healthcare. Well,
Phil Friend 16:40
Well doctors don't administer it. What you're now asking them to do is to fill a hypodermic with something or give you a handful of some things and help you, if necessary, take it. That's not what doctors have ever done. They might not give you enough of something, or they might over, you know, overdo morphine. It happens, but they might not fight tooth and now to keep you alive, that's not the same as actually ending your life, which is what we're talking about here
Simon Minty 17:09
It's a more formalized way which the proponents you agree with this want that. They want it more formalized to reduce the confusion, but it does give a green light, open door and all the other things. Bloody hell, I just want to say Happy Christmas to everybody. Yeah, they have a lovely holiday. Um,
Phil Friend 17:30
let me just say this. Oh, yeah, say it. Anybody's been affected by BBC thing? But people will be affected by what we're talking about here, of course. And if they feel that they want to talk to their MP about it, I would strongly urge them to do so, because I think the MPs are the ones that are going to make the decisions here, and what we need as constituents is to make sure they are aware that many of us are really seriously frightened by what's going on and Not Dead Yet. UK is we'll put the link you can look at our stuff and the advice we offer and all that kind of thing.
Simon Minty 18:10
Forgive the slightly self promotion on Google box. We do news packages from time to time, and this one was the vote was a news package that we did. The episode was shown on Friday. And what I thought was very interesting is a couple of the families like, thank goodness This has finally been passed. There was one person who was so tearful, and her partner was saying, is this you remembering your mom? And she's, yeah, my mom wanted me to help and that good and and stuff. And there was two or three others, including me, who were like, you know, where's this going to end up? I know a lot of people who don't want this to happen. This could be really difficult in the future, and so on. And it was a little snapshot of the variety. So I whilst you say lots of people are affected, you're right. There's people who are going to be pro and against. And that is the nature of this absolutely topic. And it's, it's so hard. I mean, I'm a bit wishy washy on it. I I was debating about coming on the demo. My fear was I'd get interviewed, and I kind of get, well, sometimes it's okay, all of you guys, yeah,
Phil Friend 19:21
Yeh keep going across the Parliament Square where the pros were, and then coming,
Simon Minty 19:32
I will say, Well done all of you for the work, because it sounded relentless and exhausting, and it's very hard going against something that people without thinking just say, Oh, this is a great idea. They have to think harder.
Phil Friend 19:49
I think your goggle box audience is interesting. Because I think what happens is that when people like me sit down with people who are in favor and have a proper conversation. About it. They quite often go, oh, blimey I hadn't thought about that. So, you know, that's what I hope we'll see happening. The MPs will do that. They'll go, hang on a minute. Many of them haven't had a chance to read the bill. They only had it two weeks before it's been there are all sorts of issues about parliamentary time here as well. Anyway, we're opening up again. This
Announcer 20:20
This is The Way We Roll Presented by Simon Minty and Phil Friend. You can email us at minty and friend@gmail.com or just search for minty and friend on social media. We're on Facebook, Twitter and LinkedIn.
Simon Minty 20:34
There's a sort of lovely segway that our next topic on our last podcast, the International Day of disabled people. What's going on around the world. One of our guests was chap called Peter Torres Fremlin, who writes for disability debrief. Do sign up for it. He said, We need to be a bit more sophisticated as disabled people. And he said sometimes a win is a win. And it stuck with me this, because I think this is a perennial debate. Let me give a couple of examples, and then we can go into what we think about it. I recently went to the shore Trust, the disability power 100 they had a lectern that moved up and down. Amazing. The winner, I really like she's She's fabulous. Celia Charteris Harris, and at the same time, the ramp they put on wasn't good. Someone fell out of their wheelchair. I heard two or three comments from people, and I thought, Oh, this is still old school charity model. This is not this was celebration of influencers and power, and yet the organization still has got a way to go to catch up on getting their head around this. So there already was a conflict. I felt weird being there at times. Now, you know, hypocrite me, I was there, but then the flip side was, I know in The Guardian, there was a big article about not dead yet, taking some money from Christian organizations and and then finally, compare it to that dinner I had with the unflinching, unwavering disability activists that, you know, they just close everything off unless it's absolutely exactly what they want. So long way of me introducing this, how do we find the level of compromise is there? Compromise is a win, a win. So it's not so much about how we got there, it's about the result. Could you answer that for me, please? Phil,
Phil Friend 22:29
well, I think when, when we met with Peter, and he's, he's a really interesting guy. I mean, a fascinating person. And if you haven't read his stuff, he really should. The Disability debrief is an excellent way of finding out what's going on around the world. But I thought Peter also talked about the award, didn't he, and he wondered whether the money could be put to better use, ie that the costs of putting on something like that might be sent to, I'm being really simplistic here, but to local DPOs or something where it might do a real change so I kind of, I won one of the Shaw trust awards years ago. I know you did too. And I do get a bit uncomfortable, because I think that, well, back then, it was, I don't know who voted. I mean, I had no idea. So I suppose the winners, I'd be interested to know how people become winners. How does it How does it work? Do disabled people vote for their best disabled person? I don't know.
Simon Minty 23:52
People are nominated, and then people can vote. And there's a panel of about 15/20, people all involved in disability stuff, and they will. And I think next year might be this year, you can self nominate as well. You don't have to be, right? It is a curated list. I mean, it is curated in the sense of it is not pure in the it is who's the most powerful and influential. There'll be lots of other things that go in there. So, you know, it might be someone who works very locally that's changed three shops to make them better compared to a real international advocate. You know, it they move that around.
Phil Friend 24:27
your question is around, how do you separate out genuine achievement and massive contribution to x from the charity model approach? Yeah,
Simon Minty 24:38
Yeah and I mean, I don't want to be, and I don't want to force you to talk about something that you you may not be comfortable with. But there is also that bit of Not Dead Yet, did take money from a Christian organization. The the point of it is this conflict. It's you accept, whether it's the Shaw trust and the Power 100 whether it's Christian organizations and not dead yet, or there's. Something else is a winner to win. So is it more about the end result than it is about the well, the quality of this resource
Phil Friend 25:07
on the Christian money thing that set the record straight. We had two supports from Christian organizations. And, by the way, for those who don't understand this, not dead yet, UK is not affiliated to, or it's a secular organization. We do not approach the issue of assisted suicide from a religious point of view. So that's that's that. But there are like seven or eight of us, we're skint. We had £10,000 putting it bluntly, 10 grand in the bank against Dignity and Dying with two and a half million right a year. So would we sleep with anybody to get more money? No, we wouldn't. We did not take money from a Christian organization. They helped us put together a postcard campaign, which they paid for we wrote the words we got the pictures, the whole text was ours. Nothing to do with them, and they agreed to that. Two years ago. They paid for a researcher to work with Jane Campbell on the Not Dead Yet UK agenda, part time, so we had some financial support to help with that. Those are the two bits of funding that we've ever had from Christian now, the fundamental point is, of course, on the demo day, there were lots of religious groups there, Care Not Killing, you know, Christian Concern, various organizations that there are posts to the bill from a religious point of view. But on that day, they were working as our supporters, unfortunately, once or twice, some individuals burst into singing hymns so it's very difficult to control some of that. But in the main, the people that were at the demonstration, although they were Christian, of the Christian faith. I think there may have been other faiths there too, to be fair. So this gets even more complex, doesn't it? Because we can't stop them coming to the demonstration. Well,
Simon Minty 27:11
Well obviously, but, but I don't think that's right. And if they're allowed to sing hymns, and if that's what they believe and that's what they want, my point is, you can have two people, two groups that generally may not have the same group. Can you come together on an issue and you respect each other's differences, but on this single issue, you bang on in the middle? I
Phil Friend 27:30
That's exactly right, Simon, we're not in disagreement. That's exactly our line,
Simon Minty 27:35
yeah. And I am I, I met with a close relative who is religious recently, and we started chatting about this, you know, a month ago, and him and his wife were in agreement, and we both started saying the same things, and I'm like, Well, this is really interesting. And mine is completely around disability and the concerns, and theirs was based on religion. He said it really interesting. He was very poorly not that long ago, and he said, I saw angels on the window sill. And he said, If someone had come around that day and said, We got an option for you, he said, like taking it, absolutely taking it. And it's a year later, he has a monthly injection. That's not a lot of fun, but he has a good life. So he's like, but anyway, his is religiously driven, and mine is not. But we were absolutely in harmony. It was almost like we were singing from the same hymn sheet
Phil Friend 28:22
God, there's a joke there, Simon, so
Simon Minty 28:25
it does go back to, is it about us being as when I say us, I'm trying to make out there's a disability movement that I'm not sure that there is. But is it about disabled people? Back to the Shaw Trust, the Power 100 massive celebration there's a couple of younger people there, and I said to them, does this make a difference to you? And I mean, oh my goodness, yes. It means that I get invited onto things. It means when people introduce me, they this gives me kudos, gives me influence. It changes. Lots of disabled people I see now. Younger ones are like, award winning. They get you. And I never used to go around saying award winning, maybe because we didn't win one, but it wasn't, it wasn't a measure of promotion or validity. So it's sometimes you might go, I mean, people like Liz Carr and Baroness Jane Campbell could win the disability Power 100 every year. Yeah, they would never go, Well, I know Jane Campbell was on the chair of judges for a few years. I don't see that Liz would ever go to the event. So it's, I don't know. It's me doing that constant pragmatism, nuance or and Peter's point. Sometimes we gotta say win is a win, because otherwise
Phil Friend 29:41
In Not dead yet. UK, we had real, real heart searching moments over this, because some of our members, some of the our supporters, are so opposed to the religious right and all that stuff, it was incredibly difficult. And one of the people were really, really opposed. Did not want to know now, at the end of the day, we came down on the side of we have to win this fight. We have to we have to maximize what resources we have. Otherwise, many more 1000s of people will be at risk. We felt so that, in some ways, justified it. I think, you know, I don't know if there is a war analogy, but you know, when you have allies, you don't agree with all of what they're up to do you, but you're all fighting a common enemy. So it's a bit like that. I think you don't. What we were always clear about is we're not signing up to your values and beliefs at all. What we're saying is, over this issue, we're agreed that you're coming in it from a different point of view. Now the Shaw Trust thing, I think, what I have difficulties with is the fact that the ramps not right, and people are falling out their wheelchairs to go and receive the awards. I mean, come on, yeah, and some of the Shaw Trust, I don't know them well. I have to be careful here, because I haven't looked at them for a very long time, and I know, I'm sure they do some good stuff. But in order to make those awards really valid, the organization that's behind them has to be pretty squeaky clean. I would suspect.
Simon Minty 31:21
And I think what we're talking about the two examples, I would say this, wouldn't I? Because otherwise we're, you know, absolutely hypocrites. I don't think where they are at is fundamentally wrong or morally bankrupt or whatever it might be. You know, they're coming from a good place, just as different approach. You're little line. You know, when you've got a mutual aim, my enemy becomes my friend, because you're strong together. I think what I'm trying to do is I'm looking at major cultural institutions in the UK that are reviewing their funders. Is it from oil? Is it from opioid manufacturers in the US governments, these people offer millions and millions of quid, and, but they're saying publicly, we can't do this, because it is again and there is that question, and I think these goes to boards, and they have to debate it, ours is slightly less? Yeah, less questionable, I would say. But nevertheless, there's still that element of okay, you're becoming you're joining up with something that you may wince about.
Phil Friend 32:31
Well, I suppose things, things have moved on. And I think when I was at RADAR all those years ago, before it came Disability Rights, UK, we used to have an annual award ceremony called MAn of the Year. Never won. Yeah, I never won it. Police officers won it for diving into lakes to save dogs and things. But only male police officers, only men who could win this award. And when we came into RADAR, I don't mean me particularly, but the board then changed it to People of the Year. Yeah, you know, suddenly there was this whole bunch of people called women, who might actually be doing some good stuff. The awards that we gave were based on, similarly, I think, to the Shaw Trust, where people, were nominated, and we looked at them, and then we had a big evening celebration and invited all sorts of people, but Disability Rights, UK, as it was, was run by disabled people. We were the board, and we had staff, and we had all that stuff. Is Shaw Trust run by disabled people? I don't know, but it would be one question I'd ask, because I think that's what I mean about, in a sense, being squeaky clean, that if you're going to put up awards, and I'm not saying DRUK didn't have his issues, it did, but I think there are, there are standards, like,
Simon Minty 33:59
it's, my question is, should we be going there? It's not. It's both, both sides of the same coin. You're not an audience well, you or me, or, as I said, Not Dead Yet, and the money or me going to the Shaw trust. It's should we be going there. But your point is the same. What are the changes, if there does need to be changed? Yeah, yeah.
Phil Friend 34:17
What would make it credible for everybody?
Simon Minty 34:21
Which is a tough one. Thank you. Listener, if you have a view, if you want to be critical, we'd love that. Tell us what your thoughts are, because it's back to, you know, it's almost like, does the ends justify the means? It's kind of what we're playing with here.
Announcer 34:36
This is The Way We Roll, presented by Simon Minty and Phil Friend.
Simon Minty 34:40
Let's do a little review of this year now. Our two topics are best moments of this year's podcast and best moment of disability inclusion.
Phil Friend 34:50
Well, one that stood out for me, okay, was the Alice and Richard one, the one we did with Alice Maynard and Richard Hawkes, who were the Scope people, yeah, and I just, I still think about it, because I thought it was a really, really good discussion. Yeah, it had all sorts of interesting and actually it attracted a lot of interest from listeners. So I think for me, that was the one that we made some. Actually, when you go through the list, you think, blimey, we've been going since 2017, Simon, 16.
Simon Minty 35:32
That was, I got the it was in August. We came out late August. It's probably, it's definitely in the top half of all I listened to podcasts this month. Was there anything specific that stayed with you?
Phil Friend 35:44
The friendship between them, interesting, the warmth, the warmth and the genuine respect they had for each other. And these were two people, very, very bright, strong minded individuals, who found a way to not only work incredibly well together, but also to to have a relationship which was incredibly positive for Scope. I think, I thought it was impressive conversation, impressive people.
Simon Minty 36:15
I liked the fact that Richard, as chief exec, was very happy to learn from his chair and say, I didn't know some of these topics, so I needed to sort of bring it up to speed by Alice and her uncompromising approach to this that was really powerful to allow me to get on and do my job. I also think the line about the petting zoo, so Scope had clearly got a bit too much money at one point and come up with this zoo for disabled people to visit, and they found it in the books. Thought, what the hell? I don't think that's gone. I think there are still disability charities and organizations that sometimes have a bit too much money go What are we going to spend it on? And so although they said we whittled it right down, I imagine that still is kicking around. I agree with you. I thought it was, it's in my top three.
Phil Friend 37:04
Okay, what was your number one then
Simon Minty 37:06
Mine was actually his last month I don't know if this is recency bias, but has our daycome, International Day disabled people with Susan Scott Parker and Peter Torres Fremlin. The reason I say that it's a bit like Richard and Alice. It was two people who were really smart. They know what they're on about.what I liked about Peter and Susan was there was a variety. They had different experiences, different approaches, but still the same aim. And it was one of those. There was lots of quotable lines. There was moments that made me pause and think almost I'd registered to go to the Global Disability Summit next April. I think it is. And I I kind of given up on those sort of gigs, and I'm like, Okay, there's something this good work, maybe not as much as we want it just made me think a lot. I thought it was a it was an intellectual conversation, and I liked the challenge and making me think, and also you and I were asking really pertinent questions, but they were the one giving all the stuff.
Phil Friend 38:14
Yeah, I would certainly put it up there too. I think what really struck me was how we become we are very parochial, aren't we? We tend to think about what we just talked about, not dead yet, and all the legislation in Britain, when you get Peter and Susan in the room, you suddenly realize that there's a world out there that's in Peter's stuff Peter concentrates on in the conversation, I talked about him being at street level and Susan being at policy level, which is a bit unfair in many ways, because Susan's hanging out with people that are thinking strategically and all that stuff. I'm not saying Peter isn't, but his journalism and the way he talks is about people on the street trying to get on busses and all that stuff in parts of the world which we've forgotten about, it's a real struggle.
Simon Minty 39:07
He was also rooted in lived experience and was more strategic. So the other one, which I really liked was going back to May of this year, and it was our show on disability and shame. And the reason I really liked it is one of our most listeners to shows this year. It was an idea that Damon Rose and I talked about years ago when BBC Ouch, which is now Access to Areas, was around and we'd never got around to doing it. So the fact that you and I hijacked it was a coup. I remember when I first muted it to you as an idea, and forgive me, I'm slighly over sharing and you went, Oh, there's no point. I don't have shame, and I don't really see what the point of this show is. And then we talked about it. And again, it's two blokes of a certain age, given. Ages, but certain ages, and gradually we started opening up and talking about some quite personal things, and about our history and moments where, whether it's internalized, shame, disability, shame, whether it's external, all those bits. And I kind of, I think it's a topic. One minute, we're campaigning. We're fearless, we're strong, we can and then we go, You know what? Sometimes it's a bit hard work. And I liked that. I thought there was a lot of power in that.
Phil Friend 40:30
Yeah, I do remember it, you're right, the swimming pool going swimming. Yeah, I'm feeling ashamed again now.
Simon Minty 40:38
So very recently, Susan and Peter International Day disabled people. That was November, August, the one Phil said about the former CEO and Chair of Scope, Alice and Richard. And then disability and shame is May. Yeah, I agree with you. It's a lovely bundle this year. There's some really interesting ones. And in January, we will tell you about our guest. We've already got six months planned out and a few guests lined up. So you said you didn't have a best moment of disability inclusion? .
Phil Friend 41:10
I couldn't reflect on something that's jumped off the page. But I'm sure if you say something, of course, yeah, I think part of my issue is that I'm not as directly engaged now in some of these conversations about what's going on. So I can't think of a stand up moment, but enlighten me. What did you come up with?
Simon Minty 41:34
Well, I've got a couple of ideas, and then I'm going to ask you a question that might help. So I will go back to the Power 100 and despite my hypocritical misgivings, the woman, or the person who won the Celia Charteris Harris, if you don't know her, she's a government, government, Special Advisor, lobbyist, researcher, legal expert, I'm trying to read it was disability equity works globally, policy, strategy, development, implementing International Disability Law. Celia was born with a rare terminal genetic condition and lives with multiple organ failure. I didn't know that before. I might have come across her name, maybe from Susan. She came up on stage to take her award. She did her talk very brilliantly, smartly. Said, I just want to say I don't know how old she is, but she's younger than you and I. And she said, I'm continuing the work of a lot of brilliant disabled people before me. Always smart when you got a couple of oldies in the audience. Then she said, all the people in this room who've won or been nominated, you're doing amazing work, but I'm campaigning for law. The law underpins everything that we do, and without it, we are screwed, we need to get it and we need to update it, and we need to make sure it's strong. Now I banged the table because I really agree with her. People just looked at me as a unusual person, I wrote to her afterwards and said, I completely agree. And I go to events, I do my training. I do these talks. People don't talk about the law. This reasonable adjuments is just a throw away line. We got to remember this was really hard for for it's not perfect, but all of these bits, and in other countries, you know, the UN convention or not quite law, but all of these things are really fundamental, because otherwise, governments and organizations, it can slip back and they go, we're not interested. You has not dead yet really important about what the law is. First of all, we don't want it, but if it's going to happen, what does it say? And I just really felt inspired, for want of a better word, but I just liked the way this was a new generation, and she's saying this is my number one priority, because it's the thing that sticks.
Phil Friend 43:55
I think I wish I'd been there, because I agree with you that is a pretty powerful presentation. I didn't hear her, but clearly through you, it rattled your cage. No question, it would have mine too. And let's go back to 1995 Shall we in the Disability Discrimination Act, which the people she mentioned fought tooth and nail to get transformed the landscape without question. Absolutely, that wasn't what we wanted. It transformed the landscape. So she's what makes her for me, at least. And I'm going to say something now that may not be true, but I'm going to say anyway, I don't remember many disabled lawyers Caroline Gooding, who sadly died, she was the standout. She worked really hard on the DDA. But someone like Caroline, this person you're talking about, it's so important that we have disability lawyers, lawyers who are this. Disabled and get the disability movement.
Simon Minty 45:04
She's not a lawyer. She's a Special Advisor, lobbyist, policy and legal expert, right? She's, a campaigner.
Phil Friend 45:13
Okay then she needs to be a lawyer.
Simon Minty 45:17
Maybe implementing international disability it doesn't say that she's a pure lawyer ,
Phil Friend 45:24
She clearly knows her stuff. I think it doesn't detract from what I've said, though I think that to have more lawyers who have lived experience would make a real difference, because it would put the law in a slightly different place for those people who aren't disabled. But well, that sounds extraordinary,
Simon Minty 45:40
It reminded me when I talked about my disability activist dinner, and the one who goes out there and, you know, screws every company when they fail to assist her on a train, she's got her legal expert. She goes to and says this is what's happened. They write back with all the Gumpff, and off she goes, . And it was that change of not throwing yourself under a bus, throwing paint, chaining you use the law. And that's what she was saying. And that's what my only other one, and I think it might allude to you. It's a one line. I was in Barcelona. I was with my friend, and then we there's another short person in town. She'd spotted that I was there on Instagram. She came and met the three of us. Took another chat, so it's three people with dwarfism different countries sitting up in our coffee in a little accessible coffee shop. I love that stuff. I adore that stuff. It's why I'm suggesting, could your moment of the year be a personal one, in the sense of, when you were doing the demo and you're outside the house of parliament, didn't you have a moment of, pride or or strength or modes, emotion
Phil Friend 46:45
. Yeah. I mean, I haven't been. I was saying to people my last demo was an education act demo back in the 1970s gave up demos, but I I did feel. I felt, I felt, I felt the people that I was with. I felt a real kind of affinity with the people I was with. Whatever we believed about the world in general, on that day, we believed unitedly about this. We'd come together. And in that sense, earlier, we're talking about the religious side of all of this. All of the people that were there, were there, focused on, can we stop this bill going through? And there is something about being, you know, going back to the days of the very early days of the disability movement, which was brought about largely by people who'd had lived experience which are similar, like special schools and long stay hospitals, that kind of thing. When you're in a big group with lots of disabled people like you are, when you have the small people's conventions that you go to, when I used to go to sports events with lots of paras, you know it was, there was a sense of belonging. I always remember the pubs in in near Aylesbury, when Stoke Mandeville games were on, they took all the seats out because everybody going in the bar were in wheelchairs so they didn't need the seats, and you suddenly saw these non disabled people desperately looking for somewhere to sit.
Simon Minty 48:16
A lovely story, but that's not the last 12 months. You've only gone back 40 years.
Phil Friend 48:19
I wondewr if they still do it, you know, when the games happen if they do, I think it's got much, but we have the Paralympics now for God's sake. Anyway. No, there is something to be said for being with your people. Absolutely something to be said for that.
Simon Minty 48:41
Our last one was just to say our most listened to podcast. Did you look at that as well?
Phil Friend 48:46
And I, I It's interesting. The figure of the most listened to one that I could see was one we did on communication, yeah, with Sarah Brown Fraser, my old charm at Activity Alliance, who talked about the importance of comms and how making that much more accessible, in the general sense, to everybody, but obviously to disabled people. She's a genius at this stuff, and that seems to have gone down pretty well with our listeners too, because she she was listened to the most.
Simon Minty 49:17
I think it was a brilliant show. I have a couple of suggestions of why it is the most listened of this year. One the title talking loud and clear, which is a song titled by Orchestral Manouvres in the Dark. And I'm sure that's made it very popular. You see what I did there this was also January of 2024, so it is the longest one. It's been up there the longest. And I, I did wonder whether you know it's been there a long time. The second one was March 24 and that one was tied with effective campaigning. We talked about the change and how people campaign, but also specifically around ticket offices, if you remember, the campaign to close them Rights on flights. Bristol Council, and they also talked about assisted dying and assisted suicide. That was another topic. I cheated slightly, because it anything in December gets lost on either the sort of year now, the show we did in December 23 Andrew Miller, Chief Executive, Motability, it's two or three times more listened to, partly because every time I do any training at Motability Operations, I mention it, so I think a lot of their staff download it. Yeah, exactly. I think this time next year we will look and I think the one with Susan Scott Parker and Peter Torres Fremlin might be the biggest listen, because it's got big numbers and it's only been out three weeks, so we'll have to wait and see.
Phil Friend 50:47
There is a question we could ask our listeners at this point, isn't there as we begin to get ready for next year, and you've mentioned the fact that we'll talk about the speakers we have for next year, but it would be interesting to hear from listeners what they think about the format, whether we should change things we do, or should we include certain things we don't include. We used to have dear old Geoff, didn't we doing a little sort of cultural corner thing. I wonder whether listeners have a view. We've been doing this for now, since 2016 apparently, Simon, we've been largely doing the same thing. And I'd be really interested to hear whether anybody thinks we could improve the show by doing X. There's your question. You could improve your show if you did X?
Simon Minty 51:28
I totally agree, and I'm totally up for that. If anyone's not quite sure, what we generally do is try and alternate. So we'll have a guest one month, and then me and Phil chatting about some of the issues on the other the bit that I think we're so fortunate about anyone I write to to say, do you fancy being a guest? They immediately say, yes, that's great. There's something really special about that. So thank you, and thank you to all of our guests. This year, they give up their time, they're engaging and makes the show something extra. So yeah, we'd love to hear you. Hear from you any of the topics this month, we've covered quite a lot. So yeah, what should we be saying? We're saying goodbye to everybody for this year.
Phil Friend 52:08
are. We're going to wish them a good time, Happy Holiday, whatever they're doing.
Simon Minty 52:14
Yeah, and those who celebrate Christmas, Happy Christmas. If you celebrate something else, or if you just have a little bit of time off, enjoy Oh, you've made me think I have a local shop on the corner. Oh, yeah, and they proudly put above their door. We are open 7am to midnight, 364 days a year. I thought, Oh, wow. Maybe you know Christmas Day is their day off. And then it put underneath on Christmas Day, we're open from 7am to 11pm they take one hour off for Christmas Day. So clearly, some people are working all the way through and thank you. If you're one of those people, you
Phil Friend 52:51
should ride themselves. Terrible customer service. They get an hour off a year. What's going
Simon Minty 52:56
on? It was 10 past 11 on Christmas day before I need some milk, and you were COVID.
Phil Friend 53:03
Anyway, on that happy note, well, whoever, who are they? What's the name of this shop? That's remarkable.
Simon Minty 53:08
It is something in it, yeah, that
Phil Friend 53:11
is remarkable. Well, that's the work ethic. Can't be a good work ethic. Alright, have a great time. Simon over, Chris, or yourself.
Simon Minty 53:20
Love to you and yours, and obviously to all our listeners, whether you're with friends or family or on your own. I was on my own last year because I wasn't very well, but take it steady. It's only a day, and we'll see you the other side. It would be lovely.
Announcer 53:39
This is the way we roll, presented by Simon Minty and Phil Friend. You can email us at minty and friend@gmail.com or just search for minty and friend on social media. We're on Facebook, Twitter and LinkedIn. You
Transcribed by https://otter.ai