The Way We Roll

Being Noisy: Effective campaigning and Assisted Dying / Suicide latest

March 28, 2024
The Way We Roll
Being Noisy: Effective campaigning and Assisted Dying / Suicide latest
Show Notes Transcript Chapter Markers

Bristol City Council recently reversed their planned cost-cutting strategy, which would have impacted independent living for disabled people. The UK government recently reversed the proposed closure of ticket offices at railway stations, which would have had an impact on disabled people. Sophie Morgan, the Rights on Flights campaigner, appears to be close to getting legal rights for disabled people on flights. Is campaigning stronger than ever? We talk through the possible renaissance and ask, is it all it seems?

At the end of February this year, the UK Government’s Health Select Committee published findings on Assisted Dying / Suicide. Phil picks through its findings and gives an update on the Not Dead Yet campaign. 

We finish with good news from Europe, with Mar Galcerán making history as Spain’s first parliamentarian with Down’s syndrome. Another barrier knocked down. 


Bristol City care plans

Transport for All - Ticket offices

Rights on Flights

Health Select Committee report on Assisted Dying / Suicide

Mar Galcerán in Spanish parliament

Announcer  0:10  
This is The Way We Roll presented by Simon Minty and Phil Friend. You can email us at or just search for minty and friend on social media. We're on Facebook, Twitter and LinkedIn

Simon Minty  0:31  
Hello, and welcome to The Way We Roll with me Simon Minty. 

Phil Friend  0:35  
And me, Phil Friend, 

Simon Minty  0:37  
Are you well, sir, 

Phil Friend  0:38  
I'm very well, I am very well because my wife's back when we last spoke she was about I think she was about to go off to Morocco with her friends to do this singing that she does. And, and she went and she's back and she had a lovely time. And I learned how to make toast. I am now the world's leading toast person. Let me just run by you. Toast and marmalade. Very in a very nice cheese. slice of cheese on toast. Very, very nice. And somebody suggested Oh god. What is it the meat? The meat that you put? Oh,

Simon Minty  1:19  
what do you mean the me know what I mean?

Phil Friend  1:20  
It's not a spread. It's pate!

Simon Minty  1:25  
That  was worth the wait listener!

Phil Friend  1:29  
Pate and toast or patty and toast. Anyway, I am just so filled with pride at my ability to survive a week, eating nothing, but you'll be proud of me that I didn't touch Alpen once.

Simon Minty  1:41  
So I don't know. Obviously, I'm pleased and well done. And all that

Phil Friend  1:47  
You don't sound very serious about your praise.

Simon Minty  1:49  
I don't know if you do a disservice to men or to disabled people 

Phil Friend  1:53  
Disabled men

Simon Minty  1:54  
, but you're of a considerable age. And you're like, I made some toast and I put pate on it. Phil corse you bloody have.

Phil Friend  2:11  
when I courted Sue so many, many, many years ago. I invited around to my flat and all I can manage to do for her was boiled eggs. I think I think toast is a bit of advance.

Simon Minty  2:26  
The truth is it's not disability related. I think it is certain men and it is not all men. But you know, my dad is this man. My dad knows how to tell people how to cook. He's just not really good at doing himself.

Phil Friend  2:40  
I I would totally put my hands up to incompetence and a lack of desire and interest and all those things. I am absolutely useless. But I would also I did there is a disability angle, because actually carrying things in reaching things and lifting heavy things is now very difficult for me. So I can, but I managed to toast and I thought you'd be very proud of me instead of which you're being very unkind. Anyway, I'm fine. How were you? By the way?

Simon Minty  3:09  
I'm fine, too. Thank you few more stresses in my life, but they're okay, let's let's crack on with something that we were going to talk about. And it's a subject we visited before. And I'm sure we'll visit again, and it's a serious one. And it's linked to some of your campaigning work. The government, there's a health select committee recently published findings on assisted suicide. Yep.

Phil Friend  3:33  
In fact, they published it yesterday. So we're talking on a Friday, they did it on a Thursday. So this is very new. What's been going on in the background is many, many of our listeners will know, the debate around assisted suicide has been going on for years, a year or so back. This select committee was set up to explore the issue again, and they took evidence from witnesses and obviously people sent in written submissions, etc, etc. And the report was published yesterday. Now, I don't propose to go through this in detail, but we will put the link so if listeners want to look at the report itself, of course they can. But the headline, I guess, is that there's nothing in the report suggesting that this should be debated again. So they didn't recommend for example, this goes back to the House of Commons for another debate. They didn't recommend that and I think we those of us who work alongside I work with an organisation called Not Dead Yet UK with the illustrious Baroness Jane Campbell and and other supporters. We were pleased about that, because we feel this has been debated enough. But the thing that I guess that came out of this that is being used to argue that that something needs to change is the debate around palliative care. Now, we've always said that you should not go for a law change. If social care and palliative care are not available much more widely than they are now. Okay, so that's that. There's always the discussion about safeguards and things like that. But this this big one, we won't talk about safeguards until we know that these other things are in place. In the report, it suggests that in some jurisdictions, there's no evidence that having an assisted suicide law makes it more difficult to get palliative care. So one of our arguments is that if you provide legal opportunities for people to be assisted to die, then what's the point of having palliative care, palliative care is very expensive. pills and medicines to kill you aren't. So and I'm being blunt about this, because in some areas, this is clearly an issue in Canada, there have been debates about the cost of palliative care, as opposed to the cost of medication to to end your life. So we are concerned about that. But there is evidence to suggest that, you know, palliative care in some jurisdiction starts at a low base anyway. So, you know, there's that kind of thing. So I suppose what we're saying, Simon, just to paraphrase is that this is in some ways, good news, because it's it's a very considered report, there's a lot of evidence in it. And it does not come to the conclusion that the law should change. Now, it doesn't say that. So what we think will happen now is that the political parties, depending on their appetite, may well go for a free vote or something at some point in the future. But at the moment, at least, there's we're feeling a bit sort of more optimistic.

Simon Minty  6:57  
And thank you a couple of pickups on it. And we have debated it ourselves. And as you say, the House of Commons as as well. I always have to check palliative care is and I looked it up with Wikipedia. So it's an interdisciplinary medical caregiving approach aimed at optimising quality of life, and mitigating suffering amongst people with serious complex and often terminal illnesses. So you're saying, if someone is close to death, or they're going to die, we want to make sure that good palliative care is available, rather than as well as if and if that's where we're heading is assisted suicide. So it's saying it's there should be an option, it shouldn't just be, let's get rid of palliative care. Because once you're really going to die, you just go straight to assisted suicide.

Phil Friend  7:46  
Yeah, what we have in this, what we have in this country, broadly speaking, is hospices. Which are generally funded by voluntary funding, but some support from the state but mostly funded by fundraisers. They provide palliative care. And you've obviously got the NHS through the hospital services, many of which palliative care, although medically may be very good. The environments in which it's administered is wards, you're not you're not in your own room, for example, those kinds of things. So what we've argued is that, that palliative care should be available to all patients who want it, and who are, as you say, towards the end of their lives, because of some issue, the social care angle is about the people feeling a burden on their families and relatives. So without appropriate social care, families are having to do all sorts of things, which clearly then for the individual, that's ill makes them think, well, maybe I'd be better off dead because it would save my family from all this grief. If you've got really good appropriate social care, and you've got really good palliative care as an option, then that makes it a different discussion when you then say none of that's worked, and I want to end my life.

Simon Minty  8:54  
And there are overlaps, of course of all of these things, but palliative care for me looks like the people who are going to die. And they're the ones who are really hard to argue with to say, Well, no, you know, assisted suicide isn't good for you, you got to go in pain and all that. And that's a really hard argument. But then the other side is social care for the disabled folk, like you or I where people go, well, that life can't be all that or about their quality of lives, not all that good or, and we're always asking for something and never getting it. And so you kind of go well, I'd be better off and that. So it's a sort of really insidious pressure. So yeah, I agree with the principles, do you I mean, I'm really horrible saying this. It's a bit saying we want palliative care. Great. We want social care. Great. I don't think either of those are gonna happen. And do you think the shortcut will be this as a cheaper option? I mean, I don't even like what I'm saying.

Phil Friend  9:45  
Well, but that's, that is a reality, Simon. Yeah. That is reality. Yeah. I mean, I think I think when we spoke the last podcast, we talked about the guy who suddenly became disabled. 

Simon Minty  9:57  
Yeah. Hanif Karishi. Okay.

Phil Friend  10:01  
So if assisted suicide had been available I wonder what he might have been doing? Do you know what I mean? So, because he saw, we've debated it, you know, his life had come to an end effectively as far as he was concerned.

Simon Minty  10:13  
He is an interesting one, because he is the one who's saying I'm now a dictator demanding of, but if he didn't have the confidence to demand or would he feel he was better off, you're right. Okay, so yes, it was an interesting report in that, as you say, it didn't jump on down one way or the other. A couple of interesting articles. I thought on the back of this, Francis Ryan, I'm a bit concerned, our podcast is going to be turning into a Francis Ryan appreciation. Because

Phil Friend  10:42  
She does cover stuff that interest us though doesn't she.

Simon Minty  10:45  
It is bang on, isn't it? She doesn't ask we'll put a link and her title is I'm glad the debate on assisted suicide is sorry, assisted dying is forging ahead. But few understand why it frightens so many. And it's a clever adjustment, which says, it is very hard to argue that someone massively in pain where pain meds can't do it, they're gonna die, yada, yada. She said, we're not saying that. What we're saying is, it's pretty scary for lots of other people who there's no reason why they shouldn't be alive and enjoy their lives. But if people don't value disabled people's lives as much, then it's a bit worrying. 

Phil Friend  11:24  
Yeah and and famously, Jane Campbell, you might recall when going into hospital for very serious medical attention, had to put her MA or degree or whatever on the wall to kind of suggest that maybe she was valuable. DNR notices Do Not Resuscitate all of that stuff. So people do tend to look at disability and say, Oh, well, it'll be a blessing for them?

Simon Minty  11:54  
Is Francis Ryan, this is not Jane Campbell, historical this is this happened in COVID. But yeah, but I remember two years ago, yes,

Phil Friend  12:04  
no, absolutely. That, in fact, there has been a big scandal about DNR notices where families were not consulted, and so on and so forth. So you've got at the moment, the status quo is that if somebody dies, and they're assisted to die, then there's an investigation. And if that was done for all sorts of merciful reasons, then usually usually usually nothing happens. But in cases where it's quite clear, that this was done to pecuniary gain, maybe through a will or something, then it's very different. Now, you know, if you make the law available, then that investigation process perhaps disappears. And then what you've got is this other stuff happening? I mean, elder abuse, we, when we talk about assisted suicide, or assisted dying, as our opponents want to call it, we're calling it assisted suicide. If you portray that, as lots of caring people doing what's right for the dying person thinking about their needs, and interests, and so on and so forth, which is often the case, of course, it is, what about elder abuse, which is one in six people age, uk Produced data that said, one in six older people face elder abuse, they are being abused by their families. So how we've got this one image of care and concern, we got this other image of we want the mortgage, or we want the house or you're a blooming nuisance. It's very, here we go. You see, it's already getting into this sort of emotive territory. 

Simon Minty  13:37  
it is a listening and I'm agreeing, but I can you're doing your I'm on the radio, give him a view. all your stats coming out. And that's fine. And that's good. You made me to think of two things. One, my uncle who lived in Australia who recently passed away, and all the time I've known him, he would say, you know, I want my time. If I'm laying there in bed, and I got tubes coming out on me, just put a pillow over me finish me off. And I'm not buggering about where my time come all this stuff. And he had two strokes. And he was in a pretty bad way. And was in hospital and then a bit touch and go and his partner said, Well, what do you think he said, I'm not ready. I don't want to go yet I'm quite happy. And this is the point. Everyone talks it up and says when it gets to that just bumped me off. Yeah, but it's very, very different in reality. Yeah. And Francis Ryan has a fabulous line. And it I remember Stephen Fry, who I've got a lot of time for, and he said, stop this slippery slope nonsense. It doesn't make any sense. There's no evidence for it. Just because you make decision a doesn't mean it's a decision B happens. Now. We have got information from Canada and other countries that suggests otherwise. But Frances has got a lovely line and she's talking about the value of our lives of disabled people. And the line says it is easy to dismiss the dangers of the inverted commas slippery slope, when it's not you who is at risk of falling down it. Yeah. And that's the point. And then another Guardian writer Zoe Williams does a whole piece saying Bravo Esther Rantzen and it's only the wimps in Westminster, who are too afraid to talk about assisted dying. And she goes on this big thing. Not once does she mention disabled people, not once that she mentioned potential a burden or the pressure, so she skips it. So this slippery slope people won't talk about, because they know there's something there. And I'm like, well, it's not wait, any sorry.

Phil Friend  15:31  
There's another angle to Slippery slope because I've been in this debate and that there is there you know, there are learned people who've written learned documents about slippery slope. I'll tell you what interests me about slippery slopes is that whenever a country or a jurisdiction brings in assisted suicide legalises it, what you'll find is that it includes more people than the original one. So Oregon in America, where it kind of starts is very different from MAID in Canada, where you've got a very different scope for this legislation. So although proponents of opposition's argue there's no such thing as a slippery slope, I'd ask them to look at when, if Britain decided that United Kingdom decided to bring in legislation, would it be the same as Oregon's? Or would it be more like, I don't know, Holland, or Belgium or, you know, Canada? Would it be like that? So although as an individual we're arguing, and people argue against slippery slopes, when you look at the way countries go about incorporating more people initially, six months to live, that was it. Now, if you've got, in some jurisdictions, if you've got the eating disorder,

Simon Minty  16:55  
 long term chronic chronic illnesses I read, yeah.

Phil Friend  16:57  
People with mental health conditions are eligible for assisted suicide. How is that terminal condition? So what happens is that we argue for the legislation now, it covers groups of people safeguards are in place. And then two years later, we pass an amendment, which incorporates people that weren't incorporated the first time. So anyway, I mean, this this is a subject we could spend hours on, I think, I'd be interested to hear from our listeners on this, because it nearly always does provoke real debate about what because clearly, some people are in tremendous pain, families watching their loved ones dying in very real discomfort is clearly an issue. And I'm not I'm not suggesting that's easy to manage. I think the palliative care thing is that the drugs, the medications, the ways of helping people at the end of their lives is very different to how it was 10 years ago, you know, we now have the ability by and large, to make people comfortable and and help them have a good death. If people can handle that.

Simon Minty  18:02  
I think there's been a subtle shift in this argument as well. And I think it's less groups are saying, yes, change the law, no, don't touch the law. There's something else is going on. And it's almost maybe there'll be some weird fudge about, as you say, social care, palliative care changes, there may be some relaxation in terms of law, I don't, it just feels to me it is moving on. And both sides are coming towards the middle. And I don't know what that endpoint is going to be. It's less,

Phil Friend  18:33  
one of the real challenges is that Jersey and the Isle of Man are very likely to pass laws which will allow and that is they're part of the United Kingdom, they have some there are jurisdiction issues here. And Scotland are debating it. So can you imagine a situation where Scotland has a law that allows you to be assisted to die, but you don't in England? I mean, there are some real issues here for the lawyers to get their teeth into. Well,

Simon Minty  19:05  
I don't want to be this is gonna sound facetious, but those like Esther and others saying it's not fair if you haven't got enough money you have to apply to Switzerland and Dignitas as well any you're trying to fit now can just come up with a little package and you can get a Travelodge in Edinburgh and get yourself bumped off.

Phil Friend  19:22  
when I when I was a young man. Gretna Green was where you rushed off to to get married without parental consent. Maybe Gretna Green will become I don't know. Anyway, perhaps we shouldn't joke too much about this but there are issues about what's going on your point is that this is gaining momentum. There's no question about that. But what I think maybe this is a good time to close. What we need is other other voices like Not Dead Yet UK's voice saying these are the reasons why we are really worried about this and hope that that will help you know the general population get that this isn't as cut and dried as they think it is. It's not all about people suffering, like Esther Rantzen  for example, is much more complex issues at play here. So there we go. Okay.

Simon Minty  20:13  
Thanks so much. And that was a party political broadcast on behalf ofPhil and his friends at Not Dead Yet.

Phil Friend  20:23  
Thank you for the opportunity. Thank you for inviting me

Simon Minty  20:26  
Have you had a good time.

Phil Friend  20:28  
Where's the tea and biscuits?

Simon Minty  20:29  
It's been lovely having you on the show. Come back and see us soon.

Announcer  20:34  
Thank you for listening to The Way We Roll with Simon Minty. And Phil Friend. If you enjoy the show, don't forget to subscribe, rate and share.

Simon Minty  20:41  
I am moving on to a new topic around campaigning. And I linked you know, we've just been talking about your campaigning. And and my question is, is campaigning working. And I started to think of things that have happened recently. And on the whole, I think it's quite a good time. So I was thinking about, we discussed this in last month's podcast, Bristol City Council may have to remove some independent living so disabled people living in their own homes may have to live in some sort of care home, that policy was reversed. After an outcry. There was the closure of ticket offices at railway stations and one of the people who would be most effective, but disabled people that got reversed that decision. I'm thinking of our lovely guest, Sophie Morgan and her Flight Rights. Some of the humiliation she's doing great work in the US in the UK. And it's looking like some legislation may be happening particularly in the US maybe in the UK. I then moved on a little bit, Richard the Third,

Phil Friend  21:44  
blimey, that's a Richard the Third, 

Simon Minty  21:47  
There is a new performance at the Globe in London. And it is a non disabled actor playing it. And they're saying it's nothing to do with disability, it's not relevant, I'll be playing it my way. There was a big outcry. And there was a lot of pushback people going look, there's very few roles with disabled people, this is one of them, and you're whipping it. If there was us working in all areas, then it'd be slightly different. But this is still limited. And then a very,

Phil Friend  22:16  
Sorry I thought you we're gonna refer to the body in the car park in Leicester that Richard the 

Simon Minty  22:21  
Third Its the Shakespeare play. And I'm not going to use the word because it annoys me. But there's an M word referring to people with dwarfism and there is a pub that is named after this. and there's been a campaign to say look change the name, it's not really appropriate their defence is they're linked to car manufacturing and the MGB M word. And so I mean, I listed five or six, three or four been quite successful, two or three progressing, and maybe one or two, not quite a long way of saying we don't have direct action anymore, although I have seen some of that happening. But I'm just trying to think is social media pressure campaigning? Is it working? I mean, I feel that there's some really good wins recently.

Phil Friend  23:10  
Yeah. Yes. I mean, well, the list you've been through, does demonstrate that and I was I can remember I wrote two or three pieces about the the closure of ticket offices. Wearing my chair of our RIDC Research Institute for Disabled Consumers, we're doing loads of stuff on transport. I didn't write as the Chair actually, I wrote as me. But we could see that this would lower the service for disabled people if those offices closed so my voice along with many, many others. And it was social media, you know, I just published something wrote something millions of people did the same. I think what strikes me Simon from the list is, in some ways, perhaps not so much the ticket office one, but they're kind of more what it feels more local. i The specific issues that people have targeted and gone for. And it's a single issue, like the ticket office closure is a single issue and that people have round, you know, come around that coalesced around it and, and thankfully got that reversed. Rather than what we were just talking about, for example, assisted suicide, which is a much bigger kind of legislative thing and all sorts of interest invested otherwise. Doesn't I've perhaps I'm just feeling more pessimistic. It doesn't feel like well, let me just think again, because one of the big debates that's going on at the moment in the UK, and it's mentioned with the election coming and all of that is things like citizens juries, and devolved power to local jurisdictions so like mayors of big cities and and perhaps even smaller groups than that. And I'm a big fan of that. I think we, as disabled people have a real most of us have a vested interest in ensuring that ticket offices stay open. It's local to us. It's not maybe such a big issue for people who don't have some of the barriers we face. So we target that. And I don't know, is it? I'm waffling. It feels like more local democracy at work. 

Simon Minty  25:31  
Fine I mean, I take an extension of your original point, which is you think smaller single issues. Yeah, you get some traction. But you're saying nationwide national support of disabled people no? Well,

Phil Friend  25:44  
Social care, NHS you list it endlessly. Potholes you can list 

Simon Minty  25:50  
Hold  up potholes have nothing to do with this. Potholes have nothing to do with disabled people. 

Phil Friend  25:52  
Potholes, people very, very excited about potholes. 

Simon Minty  25:57  
What's our podcast about

Phil Friend  25:59  
 the way we roll. It's about people in wheelchairs rolling. This is a very tenuous link.

Simon Minty  26:08  
That's what I'm saying why have you suddenly brought up potholes you're talking about general campaign. And that's notwhat this is about.

Phil Friend  26:16  
I know. But I'm making the links. I think that sometimes if wheelchair users decided to tackle potholes, how far do you think they'd get?

Simon Minty  26:23  
Can we stop talking about potholes? Because it's not relevant. You're mixing two things up there. You're saying local disability issues? Yes, but not national?

Phil Friend  26:31  
I'm saying that. Yes, I am saying that. I mean, I think that the social care one, I mentioned NHS ones, housing, accessible housing, wherever you look. In those big issues, we don't appear to be making many gains. I, but when you look at the ticket office as an example, we clearly did. And it sounds like Sophie's doing pretty good with the airlines. But that's a big one to actually be fair.

Simon Minty  26:54  
I mean, some of the ones I mentioned are big, but I take your point. And I do think it's really hard. I'll read something in the disability new service, or even Francis Ryan, who mentioned in The Guardian. And I bet every article I read, there'll be a line that says, and disabled people are being failed again. And it's just exhausting reading that, that happens. And I'm not necessarily always directly impacted. But it still feels cheap as yet again, still second class or third class or whatever it may be. So maybe you're right, these single issues where you can get your head round it. And it seems just completely wrong. Well, yeah, that works. But the systematic the, the nationwide, the bigger picture stuff, not touching the side, actually,

Phil Friend  27:42  
we talked about Mark and the housing thing, didn't we in Bristol, and, and and that campaign was successful. And Mark  Bristol changed its policy or didn't do what it said it was going to do. For Mark that's brilliant. For people in Bristol, that's brilliant. National, nationally, housing and social care and independent living is in a total mess. So that victory hasn't translated into massive increases in budgets for social care, for example, which is what Mark needs and Bristol needs in order to? Because I don't you know, so I think we're at the edges of we're gnawing at the edges of things rather than getting rid of the problem. But that doesn't mean we shouldn't do what we're doing. It doesn't mean that people shouldn't campaign. And I do think your point about social media, it is much easier to campaign now than it used to be.

Simon Minty  28:42  
I think that probably my underlying question, I reckon if I went back to a podcast about four years ago, I'd find one where you and I went people putting something on Twitter, or x is not campaigning, it's just some are getting a bit moody or shouting at the moon. Now we're kind of saying, No, some of these things are effective. So maybe social media or the impact has stretched, or people are just way more effective, and how they do it. 

Phil Friend  29:10  
You're out there more than me. You're doing a lot of work connected to all sorts of organisations and projects, some of them not commercial, you know? What's your sense? Because I suppose when we talk about social media, we're not talking about zoom. FaceTime, it is very easy now to get 50 people in a room online as a campaign group about x. I mean, we at Not Dead Yet UK have run a couple of seminars online, and we've certainly meet regularly as a group online. And I wouldn't describe that in a sense of social media. It's an it's a platform where we can come together and decide on our strategies and think about what we should be doing and so on and so forth. Rather than gathering in a room which for disabled was very often was very difficult to do. So do you think I mean, what's your sense of that out there? As you travel around going to various things do you think? Zoom? I'm using zoom to, you know, it's likec Biro or Hoover? What, what's your sense of that?

Simon Minty  30:19  
Yeah. Video call. Let's say your point there. Yeah, your point being is campaigning easier because you haven't got it all meet at the local community centre. And yeah, yeah, and put up posters and wait six weeks for traction. Now you're saying we can all hop on a call of a powwow and boom, off you go. I think there's something in that I, at the risk of sounding pompous idiot more than I am normally. I reckon twice a month, I'll get a request to sign this. Do a little video clip for that to endorse this. So there's this whole, you can access people really easily, they can make a little video, they can give you a statement. So the whole thing you can build up momentum way much more quickly. So yeah, I can I can see that. And you're right. This is not social media. This is video calls. But what you're saying is technology as a whole, perhaps, is allowing this. And what we've gone from is no, it's not the same as sitting in front of your MP, or it's not the same as sit in front of your local councillor is not the same as picketing with placards outside the House of Commons. We're saying there are other very effective ways of doing this now.

Phil Friend  31:31  
Yeah, as well as so you know, you can still go and picket at your MP or do those things, although recent conversations about, you know, gatherings and tightening up the laws around what, who, how, what protests can be anyway. I mean, I suppose generationally, you and I are moot. I'm certainly much older than you. And you're older than some. And it's, it's, for me, I like to think I'm keeping up to date on how this stuff works. But I think younger people in smaller groups are being very much more active than they ever were when I was their age. So your campaigning point is an interesting one, 

Simon Minty  32:18  
I'm smiling also, because both of us like to think we're keeping up with what the kids are, that but  we aint, however much we think we are, we were keeping up to date with maybe tech and different things, but how and what they're doing. No, I mean, if I said to you, let's create three reels on Instagram and customise them and do this that that, you and I would go What?, it would take us forever. right

Phil Friend  32:39  
I'd go straight into my granddaughter. It would take me. 

Simon Minty  32:43  
Exectly , and that's my point. So I but I'm really glad that they are. I mean, that's the point if they're making good use of it and doing some amazing stuff.

Phil Friend  32:55  
Maybe there's a serious point here, because there are other conversations I've been having about leaders and elders and older people and all that stuff, because I am one. And one of the interesting dimensions is how do we deploy what you and I know, for the benefit of younger people. And that is through some kind of mentoring, or conversations with younger people. But here, what you're suggesting, which makes sense to me, is that it's the other way around, we're having conversations with younger people who can help us understand how we can get better at getting messages out and be more sophisticated in the use of some of the technologies that are out there. Now, that would be a really interesting dialogue, wouldn't it? Because some of the stuff you and I know we could save younger people a lot of grief, because we've been there and done it, but they could do the same for us.

Simon Minty  33:46  
Yeah, we can answer those on this. And I know when I was like when I was younger, and I was pigheaded and why I don't want to be your older people. And I know what I'm doing. I've got my own, you know, forging ahead, that balance of we might have wisdom and experience but they've got all their brilliance and ingenuity and ideas. So you're right.

Phil Friend  34:07  
So their campaigns are would be very different from ours. You know, the younger people. I mean, classically, I've come across and you have two access to gigs access to concerts access to a lifestyle that we don't use now, but they still 

Simon Minty  34:22  
Drugs. Do you mean access to drugs??

Phil Friend  34:23  
No I don't meant that I  can get loads I've got a good GP.

Simon Minty  34:29  
Yeah, you could get more drugs than the kids on prescription

Phil Friend  34:34  
I could be there supplier.

Simon Minty  34:36  
Well we meander a little bit there, but I suppose it was it was me acknowledging that campaigning for a while was in the doldrums. But I think there's a sort of turn it but I take your point, local single issues can fly the broader picture. Maybe not.. I have a bit of good news. I mean, everything I've said so far you've managed to turn to be quite negative But let's see if we can back to you

Phil Friend  35:03  
You got very exercised about my potholes. I mean, there'll be a lot of people who are worried about their potholes, you know? Yes,

Simon Minty  35:09  
Yes including disabled people.

Announcer  35:12  
If you liked the show and want us to like you write us a review. 

Simon Minty  35:16  
Apologies for my pronunciation. A woman called Mar Galsaren She makes history as Spain's first parliamentarian with Down syndrome. 

Phil Friend  35:28  
Yeah, that's good.

Simon Minty  35:29  
 I don't know if you saw this, Phil, or if you've

Phil Friend  35:33  
seen pictures, I've seen news pictures,

Simon Minty  35:36  
right. And it's in The Guardian. It was in early Jan. For years. She battled to ensure that people with intellectual disabilities part of the conversation, then she's moved on and become a first parliamentarian. It's unprecedented. She said, the 45 year old society started seeing that people with Down Syndrome have a lot to contribute. But it's a long road. And she talks about her career working through various local government. I you know, it's one of those ones where you want to kind of go, Well, why not? But you can't have altogether jeepers This is amazing. Because it's, it's the first isn't it? It made me think and get another door kicked down. Yeah, and this is not an either or, but I totally agree that, you know, women are completely underrepresented in positions of power. But we've got our first person with intellectual disability, actually, as a member of a government. So we've got a long, long way to go. I just thought it was cool. I thought it was amazing. I'm, you know, more power to her elbow.

Phil Friend  36:39  
I do remember. I mean, I'd be interested to know more about how the facilitation works. Yeah, all that paperwork, all those reports, all the legislation, chosen the right job to get in her with an intellectual disability, to manage as well. So I'd like to know how that's done. I remember the DRC, there was a woman on the DRC, who had a learning disability, as it was called back then. Where there was a lot of effort made in the reasonable adjustment area to make sure that things were put in plain English, you know, and all that kind of stuff. And she played a full part. I mean, in conversations she was she was formidable. Yeah. But it's this other stuff that we know, parliamentarians have to absorb? I'd be interested to know how they do that, you know, as a technical thing, how do they make sure that she is up to speed on what the bills are that they're about to debate? Or whatever it is, is

Simon Minty  37:41  
and if you listen to it, you know, the DRC Disability Rights Commission? Yes. much missed. But you're right. They did some real groundbreaking stuff, didn't they? And that's 90s, early 2000s. It doesn't say specifically adjustments. When you look at all the things that she's done. It is clearly capable. Yeah, it just doesn't go into the specifics. So

Phil Friend  38:04  
I know people first I can remember them. People First is a charity that was set up by people with with learning disabilities. And they had facilitators with them. So when they went into meetings, a facilitator would act rather like an interpreter would just explain what was being going on. And then the disabled person would then make the contribution and say whatever they thought about it, maybe that's a way of doing it. I don't know. It's like having your own executive assistant.

Simon Minty  38:38  
I am only hesitating because we don't know, I'm slightly concerned with making a judgement about the level of our intellectual capabilities. And we don't know what that is. No, yes, she has Downs, but she can be very capable. And who knows. So I don't think we need to assume she's got to help her all the time, is what I'm kind of saying. No.

Phil Friend  38:56  
I'm asking. We know how complex that all is. And she has got a disability that affects her. So it's kind of how do they ensure that's really what I was interested in? But yeah, I mean, as a piece of news, it's brilliant. You

Simon Minty  39:13  
You did manage to make it a bit negative. So thanks for that. I was asking, I was interested in because you do it.

Phil Friend  39:25  
I refuse to be typecast as a grumpy old man.

Simon Minty  39:29  
We've got up but I'd love to get her on the show. And we can ask her maybe 

Phil Friend  39:34  
How's your Spanish?

Simon Minty  39:34  
My Spanish we will have a problem with the language here, won't we? Yeah.

Phil Friend  39:38  
We must not assume that she can't speak English Simon. 

Simon Minty  39:41  
Oh, oh, look at you yeah. 

Phil Friend  39:43  
You you walked into that pothole.

Simon Minty  39:45  
45 minutes in finally did you say potholes I can't believe you and your bloody potholes. Anyway, I thought it was pretty cool. I know we've got various members of parliament who have different types of disability. Yes. You're but I don't know, if you have them with intellectual disabilities, you're quite right.

Phil Friend  40:04  
Well I think there are some parliamentarians that ah, one could. No, I think them being serious. I mean, neuro diverse, there will be people in parliament with neuro diverse issues. But that's not quite the same thing as someone would Downs. But ya know, I mean, it is good news, and it is another little bastion  that somebody's breached. And, and what we know is that others follow, you know, when you can see that someone's managed it, then maybe I can, too. I think that's the big thing.

Simon Minty  40:39  
Are you thinking of standing for office?

Phil Friend  40:42  
I'm a bit too young?

Simon Minty  40:44  

Phil Friend  40:45  
I've quite got enough under my belt yet.

Simon Minty  40:49  
This may be a nice time to stop. Is there any other news from you?

Phil Friend  40:56  
Not that isn't grumpy no.

Simon Minty  41:00  
Just as a little heads up, if you have listened to this far, well done. Phil did say to me, he didn't sleep very well, last night. And that's pretty evident now, isn't it?

Phil Friend  41:10  
Mind you? Neither did you apparently. So the two of us are right pair.

Simon Minty  41:15  
Yeah, I was gonna say to the listener, we have a couple of shows coming up. We've got some guests. And next month, so although you're listening to this in the March, this will be the end of April, when you listen to it. We have Alice Maynard and Richard Hawks. If you don't know them, they were at one point, the chair and Chief Executive of SCOPE. And that was a very interesting time and some of the work that they did. And some of the changes, both of them agreed to come on and talk about that time. They also want to talk about the future, as in, you know, where are we now? And what are we looking forward to. So it won't be just a walk down memory lane. But we're very excited about that. We also have Suzanne Ball. And she is an awesome person who said up Attitude is Everything, which is about making gigs accessible. But she wants to wants to talk about being someone who got cancer, a disabled woman who got cancer. So she'll talk about her work, but she will also talk about this sort of forgive the cliche journey that she's been on as a woman with a disability and having cancer. So a couple of cracking guests coming up.

Phil Friend  42:18  
And if I asked you what big thing you've got coming up, what would you say? Good news, what's gonna happen in the next month? That's really good for you?

Simon Minty  42:29  
Feel like  I'm on your career development programme. I see myself as a fox I, my biggest thing that will improve my life immensely is finishing the work that is ongoing in my kitchen and my flat and it's six weeks at the time of recording, I still think I've got another two or three to go. It is been exhausting. So that will be a big life change. It will mean I'll get back to normal eating. I will have a living room to sit and watch a bit TV. All the things I've missed. 

Phil Friend  43:00  
So come May time, will you be doing a cooking exhibition on line for us? Would you perhaps you could do some toast show your new kitchen

Simon Minty  43:12  
I will never reach the heady heights

Phil Friend  43:16  
if you need help, I'll pop around. If you need

Simon Minty  43:18  
 I will have a counter a kitchen counter that is the right height. So I'll be able to make toast without having to climb on the steps and I'll be able to reach it too when I'm trying to make it quite deep so wheelchair users can't. That's my little plan. Okay.

Phil Friend  43:34  
That's my toast out the window then.

Simon Minty  43:37  
All right, it was a positive thing to look forward to.

Phil Friend  43:42  
My positive thing to look forward to is for it to get warmer. I am sick of this weather. I'm sick of it raining. I'm sick of having to wear 14 layers of clothes all the time. So that's mine. I want the sunshine and the warmth. Okay. Okay, too much to ask.

Simon Minty  44:03  
Not at all. I think your wish will come true with global warming.

Phil Friend  44:10  
Okay, we're depressed again.

Simon Minty  44:12  
Thank you very much. Lovely to see you.

Phil Friend  44:14  
And you too, and I hope the kitchen gets sorted. That will be very good news. If

Simon Minty  44:19  
someone wants to drop us a line, we are all on social media. It is Facebook the way and the way we roll and the same with Instagram and Twitter. And

Phil Friend  44:29  
there's a good old email which is

Simon Minty  44:36  
Thank you so much for listening.

Phil Friend  44:37  
Thanks everybody. Take care everyone. Bye bye.

Announcer  44:40  
This is The Way We Roll presented by Simon minty and Phil Friend. You can email us at or just search for minty and friend on social media. We're on Facebook, Twitter and LinkedIn

Transcribed by

Assisted Suicide
Spaniosh Disabled Parliamentarian