The Way We Roll

Not once but twice: losing independent living.

March 01, 2024
Not once but twice: losing independent living.
The Way We Roll
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The Way We Roll
Not once but twice: losing independent living.
Mar 01, 2024

How would you feel if your local authority suggested you move from your home of 30 years to a residential care home because they need to save money? It's something Bristol City Council were proposing for disabled people as they try to reduce their deficit. Although this proposal has been shelved, it might not be the last time we see it. We explore the reasoning, impact and resistance.

Becoming disabled can bring a complete change of outlook, and you might reflect on who you once were. The author, Hanif Kureishi (My Beautiful Launderette, The Buddha of Suburbia), lost the use of his arms and legs in late 2022. He makes headlines with his newfound frustrations and doesn't hold back, but is he, a year later, finally adjusting? We discuss how people adapt, how long it takes and how non-disabled people might ignore disability until it impacts them.

Phil and Simon are passionate about these subjects. You will hear us disagree agreeably, with added swearing and raised voices.


Hanif Kureishi: I've become a reluctant dictator

Hanif Kureishi on the 'hell' of life after his accident

The Kureishi Chronicles - Hanif's blog

Francis Ryan in the Guardian 

Think of this: a plan to 'warehouse' disabled people. What kind of nation is Britain becoming? "

Show Notes Transcript Chapter Markers

How would you feel if your local authority suggested you move from your home of 30 years to a residential care home because they need to save money? It's something Bristol City Council were proposing for disabled people as they try to reduce their deficit. Although this proposal has been shelved, it might not be the last time we see it. We explore the reasoning, impact and resistance.

Becoming disabled can bring a complete change of outlook, and you might reflect on who you once were. The author, Hanif Kureishi (My Beautiful Launderette, The Buddha of Suburbia), lost the use of his arms and legs in late 2022. He makes headlines with his newfound frustrations and doesn't hold back, but is he, a year later, finally adjusting? We discuss how people adapt, how long it takes and how non-disabled people might ignore disability until it impacts them.

Phil and Simon are passionate about these subjects. You will hear us disagree agreeably, with added swearing and raised voices.


Hanif Kureishi: I've become a reluctant dictator

Hanif Kureishi on the 'hell' of life after his accident

The Kureishi Chronicles - Hanif's blog

Francis Ryan in the Guardian 

Think of this: a plan to 'warehouse' disabled people. What kind of nation is Britain becoming? "

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  0:30  
Hello, and welcome to The Way We Roll with me, Simon Minty.

Phil Friend  0:33  
And me, Phil Friend.

Simon Minty  0:35  
And this week, we've got a couple of bumper stories. We're going to be getting deep into disability stuff, are you well?

Phil Friend  0:43  
I am actually yes, yes, indeed, yes for change.

Simon Minty  0:47  
Very good.

Phil Friend  0:47  
Nothing to complain about.

Simon Minty  0:49  
That's great. As a heads-up, I'm having some building work done. So you might hear the banging in the background. But let's crack on with our first story, you're leading on this Phil. This is about Bristol.

Phil Friend  1:03  
It is about Bristol; in fact, it's about a man called Mark, who lives in Bristol and is sort of fairly brief about the background. And we will, of course, put a link to this in the show notes. But Mark lives independently. He has a bungalow. He has an army of support workers. He's in his 50s. He's been doing this for many, many years, I think around 30 years he's been living independently. And Bristol City Council have had as have many other councils. And I don't think this is particularly a go at Bristol. And the reason I think this story matters is I suspect it will happen in other councils anyway, Bristol, because of the cuts they're having to make this particular style of living, if you like is under threat severely under threat. So what they're saying is, if we can't justify the costs of keeping people living independently in way that Mark does, by the way, Mark works. He has, you know, the sort of life that most of us expect to live, he goes to see his football team, and he does all sorts of stuff.

Simon Minty  2:13  
Can I just two little bits on there just for point of order. He's a disabled man. He's got cerebral palsy. Yep. Yep. That article doesn't say he works. It says he trained to be a social worker. 

Phil Friend  2:24  
Oh, that's no, that's fair. That's a fair point. 

Simon Minty  2:26  
It might be but as I say anyway. Yeah.

Phil Friend  2:29  
I mean, I'd split hairs. I think training is work but anyway,  let's ring Mark, Mark, what's going on with your world, 

Simon Minty  2:38  
He might have been discriminated not got a job yet?

Phil Friend  2:42  
Highly likely  anyway, being serious Mark lives a very independent life. And he's part of his local community does all sorts of interesting things, et cetera, et cetera. And of course, he employs a number of people to look after him, we shouldn't forget that he is an employer, you know. So because of the cuts, his service is under threat, and the alternative would be residential care. So the only option that's really available, would be for him to be moved into residential care. Now, for those of us who've been around a while, and I'm one of them, this is really, really scary. Because what the local authority find itself in is a corner where they can't there's no wriggle room, they have no alternatives, but to slash budgets, they've got to look at every service. But this particular series of cuts, because we know that, you know, living independently does have a cost to it for the local authority, and so on and so forth. So, Francis Ryan, in The Guardian I'll mention that because Francis is a disabled woman journalist, she's a regular contributor to Guardian, we'll make sure the article shown on our notes for you to read there, she's talked to Mark about the situation. And in her article, what she talks a bit more about is the implications for human rights, certain regulations and so on like, the equality duty on local authorities to consider the impacts of their policies, and so on and so forth. Now, just to finish, been a major outcry, lots of interest in this story across all sorts of areas. And we've recently heard that Bristol have decided not to proceed with this in relation least to Mark and maybe others. So there is a good kind of ending at the moment. But the possibility and the threat hasn't gone away, they've still got to find the money. And this is the reason I think I'm taking this so seriously, is that I think Bristol is just one authority where this is going to be considered and maybe in other parts of the country, people living independent lives in the way Mark is will be not as lucky ie the decision may well be upheld and then what happens to all those people and there employees and everything else. So that's the I think that's basically the story Simon.

Simon Minty  5:06  
A couple of initial thoughts on this, and I'm going to bounce around. So I did give it some thought now, Bristol's got a bit of a track record with us. Do you remember there was a year or so ago when they wanted all these disability ambassadors, these experts, we value your knowledge, but they weren't going to pay anything. That's right. And I think you're right, though this is not unique to Bristol. There are in the article, it says one in five, councils could be declaring bankruptcy in the next whatever X number of years, and you're thinking, Jeepers, this is so and I thought there's two levels here there is as an individual, whether it's Mark, you, me and other disabled person, the idea that you're going to be taken out your home and put into some sort of they were calling warehousing. We're all warehoused.

Phil Friend  5:47  
There were books written about the warehousing model, back in the day when I was much younger. So this is a phrase that has some little scary bits to it.

Simon Minty  5:57  
And the idea that you would lose that autonomy is pretty terrifying. And that's because you've got disability, we're going to pack you all in because it makes it a lot easier. I mean, a tiny little bit of me, by the way, and I don't think we were way off this, but some people with the right home with the right support could be amazing. I mean, you get a social life. I mean, there was a line in the article, it says he can watch TV when he wants. And if he was in a care home, he couldn't and I'm like, Well, surely you allowed a TV in your own room. It's not. I mean, I might be being really naive it but the i, so this is personal level that is terrifying. absolutely terrifying, and rubbish and horrible. The flip side is how do and there was a lovely line in the article, which said, this is about who matters in society. And I think that's bang on. It's how much do we care? And I think that's the essence of it. The catch is, presumably you just got to find more money. I can't I can't work out a better solution.

Phil Friend  7:00  
Well, I as you expect, I've been I've been doing some work with this and I've got a kind of couple of angles. Yeah, I've got one or two thoughts coming

Simon Minty  7:13  
He could come and live with you and Sue. Yeah. 

Phil Friend  7:19  
Mark anytime mate move in. 

Simon Minty  7:21  
You can be the Gary Lineker of the  disability world

Phil Friend  7:24  
or the Michael Owen and his I don't know if you've seen the press on Michael Owen's son he's got a major sight impairment and and

Simon Minty  7:31  
I meant more like Gary Lineker, taking in refugees.  Now the disabled people have become refugees. It's

Phil Friend  7:38  
Your mind is all over the place. Anyway, listen, listen, listen, listen. I have a couple of thoughts. Firstly, there is this issue about potential breach of the human rights, equality and human rights act. Right to a private life, that kind of stuff. Yep. So there's that bit more practically, where are these residential places going to come from? I mean, the care homes, our social care system is on its knees. So we're where are the Marks going to go? I mean, where are they going to be warehoused? Because as far as I can find out, the warehouses are full, you know, there's nobody. Secondly, where are the staff coming from, to deal with the additional numbers of people? So Mark at the moment is employing, let's say, 5/6/7 people, they disappear because he's now in a care home? Do they all get redeployed into care homes? Or what you know, and Mark of course sets his own pay strategies and whatever else? There is a shortage of skilled care staff in the UK. So we move Mark in and what happens to him then? 

Simon Minty  8:45  
Obviously of course, I agree with your general thrust appeal, it's slightly weakened. If you are in a care home, you don't need as many care workers. That's the whole point, isn't it? Well, only three or four and a rotor. You got one or two and they cover in six people.

Phil Friend  8:58  
Yeah, but there is an issue here, which is the bath time goes on between five and six  and get up time goes on, you know, at the moment Mark can call somebody and say I'm gonna get up at 5am Because Bristol are playing away, whatever, he can't do that in a care home.

That's independence. And that's what we've always said independence isn't about doing it yourself. It's about choosing when you do it and

and it's choice and control that famous disability mantra choice and control. Really important

Simon Minty  9:29  
Are we heading to a point where Jeff Bezos is going to have all disabled people in his warehouses and we will be I will be putting in orders as well as going to sleep that's that's that's the model

Phil Friend  9:40  
looked after by robots we will be stacked disabled people is that anyway, final point really is a couple of other things.

Simon Minty  9:47  
Oh  so we've still got two points to go. So this is not the final point. 

Phil Friend  9:50  
Well now this is this is famous, the Chronically Sick and Disabled Persons Act of 1970 to remember that 

Simon Minty  10:01  
Yeah, it was brilliant. 

Phil Friend  10:02  
Alf Morris bless him. What that did for the very first time was to separate out in residential settings. Older from younger disabled people.  And what Mark faces is the possibility of going into a care home with people with very severe conditions, mainly older people, dementia, those kinds of things. Now the chronic sick, I know it's kind of been subsumed and all the rest of it, but that established a benchmark, which said that's not going to happen. So local authorities have got all these resources of course they have so Mark will never be in a care home alongside 80 year olds who are managing Altserimers  or dementia or something else. I mean, that is mind boggling.

Simon Minty  10:46  
Plus, if younger, disabled people want to listen to a couple of old codgers bang on they can just tune into our podcast.

Phil Friend  10:52  
Are you now an old codger like me if you officially crossed the border line, then?

Simon Minty  10:57  
My friend and a guest on here, Abby, she has visits to hospital alongside 75 year olds, and she's 28 or something. I read that as long as there was the independence it was the lack of a social life, lack of a love life. Okay, so my couple of points. One. One is I was at an event last night, by the way, and we were talking about pay and structure. And one of the people who's even a bit older than me when I say all of this, it's a legacy of Thatcher still, and I thought Blimey, I haven't heard that for a little while. Anyhow, um, I wanted to when I look at this, is this actually a legacy of Thatcher because she got people out of during that time, I'm not saying, but during that time, lots of disabled people, particularly mental health conditions and stuff. We were deinstitutionalized

Phil Friend  11:50  
It was called Care in the Community

Simon Minty  11:52  
That's it. And I'm kind of thinking 40 plus years later, the principal was always right. But there's not the money to do it. 

Phil Friend  11:59  
Yeah I mean, what you can't ignore. And if I were and you were in government, what you can't ignore is the impact of the economic situation that the world and particularly Britain are in, so you've got to cut your cloth and all that stuff. Yeah. But the fact of the matter is, that, when you look at, I'm going to be political with a capital P. When you look at what we're spending our money on, yeah. I don't know how much a missile costs, but it's a lot of money. And we lobbing them with, you know, complete abandon into the Yemen, and God knows where else it's very highly political point this. What where does that leave? You know, so we've got our priorities, right have we. And I remember, as you do, and so many of our listeners, the priorities that disabled and older people particularly face during COVID, I remember what that was, like in the sense that people were dying all over the place that were being, I mean, warehousing was what was going on, put them in old people's homes, because we've got nowhere else to put them, all that stuff. And I know, there was all sorts of pressures on during that decisions were being made that were really difficult to make, I get that. But we do know, as two disabled men, who are very interested in this subject, that disability is quite a long way down the list of priorities for most governments. And it doesn't bode well for Mark and me and you and anybody else, for that matter.

Simon Minty  13:28  
At the bottom of Francis Ryan's article. I read some comments. And there was one that said, we are spending on this, that and the other and, it was very hard to argue with. I mean, there will be reasons and you know, where we are in the world and greater risks and all of that stuff. But you're right, it was a kind of bloody hell. Is this the priority? And surely there's a better way? Do we is there another political party, though, that represent saying, we're not going to bless missiles? And let's say you got to spend more on defence. It's such an unstable world so

Phil Friend  14:01  
well, but we're finding 300 million pounds to move a few refugees back into Rwanda, aren't we? 300 million quid I think I've read the other day. And again, I know we're sailing close to the wind, if you'll pardon the pun. But the fact of the matter is, we are making decisions about what we will spend money on and what we won't. And when you look at 12 million ish people affected by some form of disability or other impairments. You kind of think, hang on a minute, isn't that a priority? There are millions of, couldn't we? If we got into prevention? I mean, Mark's mental health, what happens to it? How does he get how does he adjust to this totally different way of living? What are the costs of the rest of us for helping him do that? You know, those kinds of things aren't talked about. It's just a simple decision. It costs 70 You know, 300 million for Rwanda that would sort Bristol out and about 20 other councils.

Simon Minty  14:58  
I can't solve this I remember Jane Campbell,

Phil Friend  15:01  
Oh I'm annoyed now, Simon, I thought you would come up with a plan. 

Simon Minty  15:04  
Well the problem is I can't Jane Campbell's line is you're not going to get more there's a pie. And a pie is so big. So all you're fighting is for a greater piece of the pie not there's not a new. Yeah, . And so what we need is the whole budget or whatever it is, and say, Where do we split it? And what are our priorities? And you're right, these are different priorities. My question was though is a political party that represents what you're saying. 

Phil Friend  15:27  
Not that I mean, I haven't I mean, I haven't read the well the manifestos aren't out yet really, are they? I mean, they're being written on worked on and all that kind of thing

Simon Minty  15:35  
You know, instinctively, I don't think there is 

Phil Friend  15:37  
Well the party that I would normally expect to come out with something like this would be the Labour Party, but they haven't been exactly quick in talking about what they're going to do about social care. Social Care is a real issue here. This is what's behind so much of Francis's article, you know, it's about lack of budgets. 

Simon Minty  15:56  
And you remember, Theresa May, in her manifesto 

Phil Friend  15:59  
I do remember her, yeah, she had diabetes, she's a disabled person.

Simon Minty  16:03  
She was going to raise the 80, grand social care, I think it was in inheritance and a few other bits. And then it got pulled. I mean, that was the most brave solution we've had in a long time. And they pulled it. One last point. I have colleagues who have Down syndrome, for example, and they move out of their family home, and they go to assisted living. So they have autonomy, but they also have support, they have freedom, but they also know there's a backup. We celebrate that. It can it not be the same whether you've got cerebral palsy, wheelchair user, whatever it might be that you kind of go, you could be somewhere where you still got the choice and the independence, but you got the backup as well.

Phil Friend  16:47  
Well, it requires that that society, that the people of this country have to feel that there's greater value in in moving resources into areas like that, in other words, that that our priorities have to change. I mean, there's an enormous fuss about the state of the National Health Service, there's an enormous I am reading every day, some story or other which says that something's not working the other day, it was about dentists.

Simon Minty  17:20  
So you're not answering the question. You're talking about. Care Homes, might that not be the solution?

Phil Friend  17:27  
No, the solution is choice and control. Now that works for people with Down syndrome in those situations, other people with Down syndrome might want to stay at home, don't want to go into assisted living,

Simon Minty  17:39  
agree with all of that. And then they're being forced to and back to choice and control. What I'm kind of saying this, there will be some that this could be the best I'd love I mean, it'd be it'd be like the idea of one day, running your own home doing all this shit and having to pay for everything. I'm like, oh my god to be in an institution where I'm getting support. But I've got freedom to come and go love it

Phil Friend  17:57  
it would be a romantic idyll Simon, if it was staffed properly, you could get up when you felt like it because your own personal worker, it's not a bloody hotel, you're moving into it's 80 people living cheek by jowl with three staff. That's the reality.

Simon Minty  18:14  
And that's my point. So is the solution. I guess what I'm just saying is, is one of the solutions, better care homes?,

Phil Friend  18:24  
Well that's, that would be as well as I mean, for goodness sake, we want really good care homes, because they are a solution for some people. Yeah, absolutely.

Simon Minty  18:36  
We agree. So my point is, if we just do this blanket, no, everyone's got to live at home, be independent. I don't think that is great, if that's not what you want. And my point is living on my own just watching boxsets when I want can be miserable and isolated and lonely. And if the only contact got is a bloody support worker for three hours a day and that's not a life. I also want to hang out with other people.

Phil Friend  18:56  
And there's an awful lot of non disabled people living like that. Exactly. You know, is that's not about disability. That's about not having friendships or whatever else it is and here's my dog barking I do apologise No, I think what you need is you need a variety of resources.

Simon Minty  19:17  
Camping live in a tent for a bit.

Phil Friend  19:21  
I think you're being facetious.

Simon Minty  19:23  
I want choices 

Phil Friend  19:25  
And you want control.

Simon Minty  19:27  
I do want that too. Yeah.

Phil Friend  19:28  
I mean, you living in your flat decide everything. Everything. 

Simon Minty  19:36  
Don't want to sometimes well, I want someone else to decide some things.

Phil Friend  19:41  
Okay. Just how much control would you have of your daily life if I shipped you into Wandsworth's care home?

Simon Minty  19:50  
I think everything about social housing rather than a care home. That's what I'm thinking.

Phil Friend  19:55  
There is the other thing of course, if we were really able to change the societal view of disability and older people and those kinds of things. That that, that living in your own home, and having the ability to go to places where other people are and you can congregate and share. That wouldn't mean you had to move into a residential setting for that. You could be finding that I mean, we used to have things like day centres and those kinds of things which have, you know, all sorts of bad press about them as well. But, you know, lunch clubs, people do enjoy going and have a game of bingo with their friends, that kind of stuff. That's not quite the same as making a choice about what time you get up in the morning, what time you go to bed at night and what you do in between, and in care homes, even the best care homes. That's very difficult to do when you've got to look after a lot of people with too few staff. 

Simon Minty  20:45  
And you're right I want to arrange the bingo and invite people around myself I don't want it always done for him. It's bit like when you go on those holidays in the hotels where there is 10am there's this 11am there's that  I cannot bear that drives me to distraction. 

Phil Friend  21:01  
Well there you go. So well. 

Simon Minty  21:03  
I think we've solved that one!

Phil Friend  21:05  
I think we fixed that. That's good. That's sorted it and there was some real name checks in there Maggie Thatcher popped up. I mean, for goodness sake,

Simon Minty  21:11  
I heard it last night I thought I'd drop it in again.

Announcer  21:15  
You're listening to the Way We Roll with Simon Minty and Phil Friend. If you like what you hear, please leave us a review or search for us on social media.

Simon Minty  21:23  
So we are going on to another potentially not heated but big issue. The novelist Hanif Qureshi. He wrote My Beautiful Laundrette that's a big one. He's written other things as well. Have you been following over the last 12 months, Mr. Friend?

Phil Friend  21:43  
No, I haven't.  This is going to be a voyage of discovery for me and the listener.

Simon Minty  21:50  
About a year ago, it was Boxing Day 2023. That makes sense. Yeah, well,

Phil Friend  21:58  
it's now February so it would have been Yes. 2020 through 2022. Okay.

Simon Minty  22:04  
Boxing Day 2022 he collapsed, he had been a bit poorly, but this was a surprise. And he had head injuries. It left him without the use of his arms and his legs I'm reading this. Yeah, the Buddha of suburbia. And My Beautiful Laundrette was two of the things he's written. They say he experienced, he's charted this experience with these brutally honest blogs. And I remember reading them to begin with. This is a study of someone who never considered disability, lived his charmed life. And then it hit him. And he was furious, beyond furious, and I got a bit furious with him because he just basically saying, life is crap. I'd rather be dead. I cannot believe this has happened to me. How unlucky am I? What is the point? And the bit I was like bloody hell mate totally get it but give it a chance speak to some other people. Anyway, he was guest editor of Radio Four you know, they do it over the Christmas period. Oh, yes. Yeah, his article is from December actually. So my apologies. He starting to come around a little bit. So I have a couple of lines that I wanted to pull out for you. And I wondered what you thought so

Phil Friend  23:17  
So  presumably Simon, just sorry to interrupt you, but he is presumably still paralysed. 

Simon Minty  23:21  
Oh, yeah, yeah. 

Phil Friend  23:22  
Okay. So no improvement, really.

Simon Minty  23:25  
This is his life. Now. He says he's still the same person as he was a year ago. But he's lost his sense of humour, and he's lost his innocence. So he's a bit of a grumpsville now.

Phil Friend  23:36  
I'd get on well with him then wouldn't I?

Simon Minty  23:38  
For different reasons. He said, but in a sense, I feel much closer to reality, that in a way that we're living in some Sorry, what he meant was beforehand. In a way, we're living in some kind of Nirvana, miasma until something like this happens. And that's a very telling line. That's my point of view, just sailed along. Didn't give a hoot about this. And then suddenly, now he says, I can't make a cup of tea can't scratch my nose. I've had to learn to make demands. I'm a reluctant dictator. He goes on to you find that your friends are some of my men friends can't cope, to see me in hospital can't bear to be around the wheelchair thing is going to happen to them next.  Okay, last one, and then I'll let you come back. One of the things that happens to you when you're disabled is that you feel less powerful, that you're sort of impotent. You're an impotent God for your kids. But actually, in another sense, you're more powerful, you're incredibly powerful. People are drawn towards you because of your illness. They're fascinated by it. They wonder when it's gonna happen to them. You can't say that it does nothing to people. It's very moving very upsetting and life changing for other people around you. Um, sort of the best bit about and he's he's a fabulous writer. So you know, you've got these very articulate, well thought through pieces. He says he does his blog because he's getting the reaction to it. And it's one of the most important things he does. I'm just a bit peeved at him. Because he's, I mean, this is really wrong of me. But I'm like you're making out but this is so miserable. You've only had it a year bud. And you never cared about this beforehand, isn't where it's a bit of humbleness, where it's a bit of, Oh, my God, I have been very selfish, or I've been very naive, or I don't know, am I being mean to this bloke, I don't want someone to have this happen to them. But when it does, I want you to be slightly better. 

Phil Friend  25:37  
I get it you get it to. This is about loss, isn't it? He used to be who he was. And now he feels he isn't very physically, he's not lost his marbles, he can still write, he can still do this stuff that really. And in a sense, he's deploying those skills to vent and share and so on. And in that sense, it's a really helpful thing. But other people who are perhaps on a similar journey, but not the same, you know, he's feeling very angry or that I'm feeling very anger, at least I've got that in common with you. But I think it takes I mean, I was 40 Plus, well, 40 plus before I started seeing disability and, and I'd always been disabled. Before I began to see the nuances and the flavours and discriminations and the highs and the lows and all that stuff. This guy's added a year, cut him some slack, you know, be patient with him. But I think there is real value, I was going to ask you whether he does it like a sort of diary, you know, where, you know, when you look back at a diary, say 12 months after what happened to him? How is he sounding? Now? You know, and it sounds like he's beginning to sound a bit more positive, ie there are upsides to this, there aren't many of them. And I'm still furious. But actually, I am, in some ways are getting a lot of attention for the right reasons. And, and it is forcing me to consider what I never thought about before. If I tell you as you were telling me that. And you know, my one of my major issues is about assisted suicide was what would have happened to him if that had been available? Three months after what he did what happened to him? Because in the frame of mind he was in earlier on in his rehabilitation, if that's the thing.

Simon Minty  27:38  
I think it did crop up.

Phil Friend  27:39  
I'll bet it I bet it did. I mean, why wouldn't you feel suicidal

Simon Minty  27:43  
Between you and me, he was so annoying in his description of disability, I'd probably helped him. I believe you're doing such a disservice to being disabled. 

Phil Friend  27:54  
That's another reason for us not to have it legalised. So you can't be let loose. Anyone who disagrees with Minty gets done. But being serious, you know, his mental health must have been all over the place. And I don't know if he mentions in any of the articles where he's getting any support for that, you know, these feelings and how he feels about himself and his change of image and all of that stuff. What's his background? He's an, a non English sounding name. Because I wonder what cultures he has his his kind of upbringing and so on, and how that might play. Play tunes from from a disability point of view.

Simon Minty  28:34  
I mean, I don't know that I'm sure he's a Brummie or the My Beautiful Laundrette set in Birmingham? I mean, he's a Brit. There may be, you know, family background history, but I don't know if that was certainly

Phil Friend  28:46  
In the films that he's made. There's very strong cultural isn't there? He talks very powerfully about those issues. So anyway, I just kind of wonder how those tunes get played. You know, 

Simon Minty  28:57  
What about this line about being a reluctant dictator?

Phil Friend  29:02  
Well is he benevolent or malevolent dictator? Is he is he

Simon Minty  29:06  
I don't think they come into it? It's you have to tell people to do things. 

Phil Friend  29:10  
Yes, you do. Interesting choice of word, though. Isn't it dictator rather than manager? Okay. I mean, yeah, he's got to be very good at management. He's got to get people to do things at the times he wants them. He's got to make sure that those people are available to do it. There'll be somebody on on a certain time that he knows will help him with that. But, you know, I think there's I don't know about dictator because that tends to say that the people are subjugated, you're they are under your control and power in some way to some degree they are of course,

Simon Minty  29:42  
I can think of two examples. I was travelling last week and taxi drivers get my scooter in and immediately they try and pick up this and trying to move and I am say, stop that. Now listen, you're gonna do this. We're gonna do that. And I'm gonna get you to do this. And they're like that. Oh, don't worry. I'll hold it and I go, you can let go. He's got electronic brakes, you know? Understanding. So I have to tell them every step of the way. I always remember your story for many moons ago, where you were sitting, watching TV with one of your 10/11 year old, I think Jack that was pointed and said, Could you pass me that drink? And they went, Yeah, I'll do it in a minute. And you went? No, you do it. Now, there are other things that you can wait. But this is not an option. I need you to do this for me right now. It's disability related. You do it. You don't decide when you do it. That's a dictator. ,

Phil Friend  30:32  
No it could be assertiveness. I mean, I might be a dictator in my family. But I think it's an interesting word to choose, isn't it? Because I'm, I'm immediately seeing him becoming assertive, managing what he needs without him being able to do it himself. But I see why he's saying that. I mean, I get I get the word,

Simon Minty  30:58  
It's back to his lack of exposure and experience. Because he's gone from I go and get my cup of tea to please make me a cup of tea. And he thinks I'm dictating to everybody now. Yeah, it's because he only done it for 10 minutes. If he met other wheelchair users or other people with paralysis he be going Oh, right. And that's the bit that bugs me is well, as you say, he thinks he's been this bolshie dictator, but actually he's just gone from having to ask people to do things. 

Phil Friend  31:27  
Yeah well, Sue, and I, our friend, Alice Maynard. Sue I went over for lunch with her. And it was really nice. We had a lovely time. And when we arrived, Alice immediately goes into because she lives alone, she's very severely disabled. And she says to Sue, right? Can you get this out of there? Can you do this over there? Would you get that, and Sue now becomes the kind of arms and legs of Alice, Alice's directing operations, you'll find the milk in there that things are over there. But that in that Sue's then got a cut? What do I do with this, put it in the dishwasher? Sue becomes arms and legs, 

Simon Minty  32:02  
Home from home for her!

Phil Friend  32:02  
No, I wouldn't get away with any of that. But it's interesting how that role immediately changed. Because in order for us to have lunch that Alice had prepared, Sue had to do all sorts of things, which Alice, of course, would have done herself if she hadn't been in a wheelchair. So now, how did that feel? Did that feel like you were being bossed around or, you know, controlled or whatever? It none of those elements were there because there's a style to it. It's how you ask isn't it? Isn't that some of this is how you ask people. I mean, if you're paying them, we were being paid to do all this stuff. But if I was paying somebody like Alice has support workers that she pays, then she might have a slightly different approach with them about how things work. And I think you're right that Hureshi is still working out how this works. And what his line might be in different situations. Do I dictate? Or do I ask?

Blackmail? Worse, manipulate? I get all of that. And I'm being silly. I am sensing he may feel like he's been a dictator, because he's asking for all of this stuff. And he's never had to do it before. Does the person who's assisting him feel oppressed? And the threat of, you know, exile? Or do they like, well, of course, I just go on and do it doesn't make any difference? Or why wouldn't I? 

So does he make a difference between friends, family who are doing things as opposed to professional people who are paid to do things does he distinguish his dictatorship between the two, 

Simon Minty  33:49  
Actually and I was in Marks and Spencers yesterday, and I saw a top that I liked and it was a very on a very high hanger. And if I was a dictator, I would have shouted stop everybody "get me this". And I didn't I waited and this bloke walked past and I said excuse me, can you pass me this? And he went yeah, of course. And then we carried on with our lives. Yeah. Maybe we need to be a bit more dictatorial. I think some disabled people, maybe that's the confidence management, all those things. 

Phil Friend  34:24  
It's PDP all over again. We need him on a course. Yes. Because he needs to understand the difference between bossing people around and being assertive. Yeah. And you know, lining them up against walls when they refuse to do what he tells them is not probably the best idea. You know, come on,

Simon Minty  34:45  
I suppose where there is a truth even for old I would have experienced disabled people like you and me. Well, maybe you don't really occasionally I do ask for something. And I feel uncomfortable. I'd rather not and he's doing that every day. And he's never done it before. And

Phil Friend  35:02  
And I'm not as limited in my physical abilities as he is, you know, I'm not asking for somebody to squeeze the toothpaste tube, his level of dependency is much, much higher than mine. And I'm, I see myself as being pretty dependent, but not to the level he is. So he's gone from famous filmmaking, whatever he was doing, to not be able to move. And it's happened overnight. And my goodness me, he's doing well to adjust the way he as I would say,

Simon Minty  35:35  
Oh come on. 

Phil Friend  35:36  
Yeah, but yeah, I mean, I'm in awe of him in awe!. Let's get him on a course. Invite him Simon, you know, him 

Simon Minty  35:42  
He's inspirational 

Phil Friend  35:43  
I haven't used that word once!in

Simon Minty  35:43  
 In his misery. I mean, here's my last point, and I will stop now. How do I say this without being mean? There are 1000 memoirs out there or people that this has happened to? And I'm kind of thinking, why the bloody hell didn't you pick a couple of them up and read it and see what that transition and journeys like it is like he's charting this for the first time. And of course, it's his first experience. But this ain't the first or the last time that happens to people. And there is a wealth of knowledge and information out there. You know, what it is, is that we met a couple of them along the way, people who become disabled, and then they go hell for leather. and they're overcompensating all over the place. It's like, it's never happened before. They're the one I'm going to change it. And you're like, Yeah, I love your gumption and love your fury, but have a little read and have a little look around first, because there's a lot of people before you have thought about this,

Phil Friend  36:42  
I won't argue with that, what I would say, in terms of, you have to be ready to read the books he's going through, he's not ready yet. He won't come on a PDP course yet, because he's not ready. He's got to work through, he's got to work through all he's got to work through all of these things. And I do agree with you, what would be tremendously helpful would be to have one or two or three or four or five, people who can't move, chatting into him about how they're managing it, and what they've learned on this journey. But he has to be ready for that. And I think in some ways, what you're describing is, I haven't read any of this, but I'm going to now that you brought it up, what I'm getting is a strong sense of him just getting it out there. And and seeing what reactions he gets. And that then feeding into so it's okay to feel this then is it. And actually there are other people out there who feel like this too. So gradually. I mean, there is I suppose a bit of a saying, Come on, mate, you'll be all right. It will get sorted in the end. Actually, it might not. You might never adjust to this new reality.

Simon Minty  37:55  
Well, yeah. Okay, maybe you never adjust, but you can still have a good life. And he's life, we'll be forever different. That's the truth of it. But doesn't mean say it's a bad life.

Phil Friend  38:06  
I, I knew a 17 year old girl I'm talking many years ago, we were going riding riding stables. It was it was pony Riding for the Disabled and myself and my mates

Simon Minty  38:21  
Riding for disable types it was called. Yeah, was

Phil Friend  38:24  
It was raiding the disabled. And one of the girls that looked after the horses and prepared them and all that was thrown by one and broke her neck. She became she was flown off in a helicopter. She was tetraplegia it from that point onwards. And all of us, every one of us, went to see her went and talked with her. We were all disabled, but maybe not quite seriously, she was. And in the end, many of us stopped going. Because she was so so difficult to talk to. She could see absolutely nothing about the future at all. And it got so difficult that most of us withered on the vine and stopped going. My friend Graham never did. He kept on going. But she never changed. And she I remember her mother who obviously was devastated by what had happened fed that feeling. They were both depressed together. And it was self reinforcing. It was incredibly sad. I mean, the irony of it, you're helping disabled people and you end up as a disabled person. But she was very, very young. And you might have thought, you know that she would make adjustments that many others do and I've never forgotten that and I think it didn't matter what people did. She never ever saw a positive to any of it. She was just in emeshed in this, right doesn't sound like that's what's going on here. 

Simon Minty  40:04  
Hanif is coming round, I can see those little chinks of acceptance, acknowledgement. And I, I imagine and I'm How do I know? And you're allowed to feel like this, by the way I can't judge and these things havew massive impacts. But I do think there's a little bit of a correlation between the two of them, which is, that was a group of people over there that I did stuff for, but don't you bloody make me one of them? And that's the bit that bugs me and like, whoa, you sort of either subjugated us we were different. We were other, we were less. Now you become it, and you're not liking it. And I kind of go I don't want it to happen to you. Of course I don't. But I'm a bit angry that you're, and it's real wrong. I know what I'm saying feels wrong as well.

Phil Friend  40:45  
Yeah, but it's genuine. You know, I mean, we all wish that non disabled people would understand what it's like not to be and and treat us fairly and equally and all that person. I am

Simon Minty  40:59  
wondering if he's ready to come on the show. I'll drop him a line. I have one little line and this is my mother's wisdom. So I'm having a kitchen that is put up my height, which for the uninitiated, my countertops will be 60 centimetres high instead of 90 and my sister because she's my sister. Oh, bloody hell. It's gonna be a nightmare come around to you to prepare preparing food and stuff. And my Mum quick as a flash said Yeah, for one day a year. You're gonna experience it. Well, it's like and for 365 days a year. Simon has that the other way around?

Phil Friend  41:32  
Very good. Your mum. I always knew your mum was a wise woman. Very wise. See where you get it from Simon.

Simon Minty  41:39  
I'm gonna get it Hanif and my  Mum to have a little meet.

Phil Friend  41:43  
I think you should sack your I think it should sack your sister from Gogglebox. That's an outrageous remark.  So being serious, a great line. Well, well done, mum. I say

Announcer  41:57  
Thank you for listening to The Way We Roll with Simon Minty and Phil Friend. 

Simon Minty  41:57  
I've got a couple of little anecdotes, story things.

Phil Friend  41:58  
Go on then.

Simon Minty  41:58  
I did some work at the Football Association at St. George's Park. I was there early . They've got a little restaurant/cafe thing and went upstairs got myself a potato burger, bit unusual. There's quite a lot to eat potato in bread. Anyhow. I went to pay and she went, Oh, it's alright don't you worry. She went just pay for the drink. And you can have but don't worry about the burger. And I went interesting.

Phil Friend  42:36  
What's your name Harry Kane. I mean, what's going on?

Simon Minty  42:38  
So I went down and I was doing some training afterwards and I said to them, I can't work out whether I was patronised. As in oh little disabled fella, let's give them a free burger. Whether that was just kind or I just couldn't work out and I said you know there's there's benefits, but it's also slightly less as well. It's all a bit peculiar. At the break, one of the delegates came out and said, I've been thinking about what you said, I say go on, he went, you had an FA lanyard. And he said all of us as FA staff get free food. And she saw you and went Oh, he's FA we give them free food. And I mean, I need to learn that don't I? I immediately went for the disability bit and it wasn't nothing to do with it. So yeah, it was that little memory jogger that we sometimes think it is one reason but actually it's not it's another that's

Phil Friend  43:34  
That's great, right and the moral of this story is if you ever visit St. George's Park, get a lanyard from then on, it's all free

Simon Minty  43:43  
And I don't know whether I'd have a potato burger again. 

Phil Friend  43:46  
It didn't go down well?

Simon Minty  43:48  
 it tasted great. It was it was sort of

Phil Friend  43:50  
Sounds healthy, you coulds have played a full 90 minutes

Simon Minty  43:55  
healthy? It was potato and bread,

Phil Friend  43:57  
lots of carbs, and very high carb diet.

Simon Minty  44:01  
And the complete reverse of this I'm starting to worry about whether I am still disabled i My scooter was broken Phil and I couldn't get it fixed and they held on to it for about a week. Now I'm living in my flat and I haven't got a kitchen I haven't got a fridge or anything like that. I'm really limited without my scooter. I mean I can't go to the shops. But what I was then doing is everywhere where I'd be driving on the street car garage petrol station thing will pop in buy a sandwich while I'm on the way because that's what I had to do. But there was a couple of times I had to go to like a big shop or I was leaving the hotel I staying at. I went I'd actually the two days I was in Derby and I was in Leicester and I didn't have a scooter. I had my car I had my disabled badge, but I was walking more than I've ever walked and I thought maybe I'm not disabled Phil 

Phil Friend  44:59  
Pain free, 

Simon Minty  45:00  
no pain all the time!  I had to stop and to lean against things.

Phil Friend  45:09  
Oh Yeah strangers had to hold you up and carry you into the shops. Yeah, but you're not disabled.

Simon Minty  45:15  
I had these Sketchers. The shoes Sketchers which I believe now are just for people of certain ages and stuff 

Phil Friend  45:23  
And you've joined them carry on!

Simon Minty  45:24  
They are the lightest shoes I've ever had. So if I'd had to have heavy bloomin' boots, I don't think I could have done it because this is like walking without anything on your feet. I could do a lot more, I suppose the long and short of it, I could walk a bit more than I thought I could my watch about four days in when your calorie burning has gone through the roof. And in many ways, it was a little nice to me going, You know what, I do have an option occasionally. And I love my scooter. And I adore my scooter. And I use my scooter always. But occasionally I have got an option. And I thought I should think about that.

Phil Friend  46:00  
Well there's clearly from a point of view, and I am being serious about this, you have taken this far more seriously than I have in the recent past about getting fitter. You know, doing your weight training going to the gym regularly, that kind of thing. So to push yourself to do a bit more walking is part of that regime, and is clearly good for you as long as it doesn't hurt too much being being absolutely serious. But the scooter of course gives you the option. You can choose whether you walk or not. And you might particularly on certain days decide that you want to conserve your energy for the delegates you're gonna see at Derby and use your scooter rather than walking. Also,

Simon Minty  46:39  
Also contextually when I went to visit the big store I had to go to I waited 27 minutes for a parking space. Because I knew that I had no option. I had to keep going around the block. Yeah, waiting for the day I needed to open up. So I think around around around it eventually opened up and I grabbed it and I was in I couldn't park anywhere else because I couldn't walk anywhere else there were limits of what I could do.

Phil Friend  47:02  
I think on that basis carrying out this analysis and having had this discussion with the client, I think we could probably say that you are still disabled.

Simon Minty  47:11  
Are you still working ATOS? as an assessor

Phil Friend  47:15  
No because if you might remember, the assessments are all on the fifth floor. And there are no lifts. Okay, I've got a couple of anecdotes. I don't think they rival that though, to be fair. Well, the first anecdote is that I'm, I'm, I'm selling my motor home. Now, for those listeners who don't know, I am my goodly wife, Sue have been motorhoming and caravaning for 40 plus years, our kids were all in, they hated it. But they all went, caravans holidays, we had some epic moments, maybe we should do a pod on that. But anyway, I've got to a point now, even with a purpose built motor home where I can't use it properly, because I don't have the strength now to transfer and stuff like that. So on one level, this is actually a bit sad, because I believe, yeah, it's a kind of end of an era. And another marker that says I'm getting older and my disability is is playing more tunes than it used to. So, but the motorhome is going so we are putting the money when we get it into the holiday fund. And we will be travelling business class and we will be swanning  about the universe.  We will have we're doing a lot of research into cottages and apartments and places that we could stay with wet rooms and all the usual amenities. And the positive is this there are a lot of them. You know, it's it's getting better you know, your we did that item with you talking about adaptive clothing. And so um, yeah, and you were surprised at how much there was, as was I? It really is very positive. So So that's, that's it's sad on one level, but it's encouraging on another.

The fact that there's a lot of supply of these accessible cottages and stuff. Is this a solution for Bristol?

Mark next door to me in a chalet? Yeah, I can see it all now. But you add him in a tent? Didn't you poor old Mark and his six workers all in a stand up tent? I have the primus stove. Brilliant.

Simon Minty  49:26  
I'm gonna ask you quite a personal question which you use to edit out. Your grandson is an amazing kart racer. He is, there was an opportunity to go and watch him abroad potentially it was there still is Yeah. Now I've asked you a couple of times to tax the listener Phil, myself and another friend Geoff have this text group. And I said sure we all go and basically because I just thought, it would be a hoot, it'd be lovely to go away with all of you. And you dithered then you went probably not and I thought it Is this impairment and age saying I don't want to go abroad anymore. 

Phil Friend  50:05  
It is It's mainly two reasons. One is that it's very stressful for me and Sue, but particularly her to fly and and go to places where we don't know what the support will be like. Now I think I have to be very careful here because I don't want to put thoughts that don't work, but Sue is very, she wants to be sure that things will be okay there. You know. So in our own lifestyles that all the disabled person people listening to us know this, we have our you're gonna have a 600 mil kitchen. Why is that so you can live your life the way you do, my house is the same. It's all set up for me, when I go into a hotel, it isn't. And there are risks then of me falling or something like that happening. And Sue's on her own. She doesn't, you know, she she can't lift me or anything like that. So. So there's that factor. There's the sheer factor of I hate bloody airports and flying anyway, because I think they're disasters, this whole idea that it's luxury, and it's rubbish, it's horrible. I can't wee on the plane, you know, all that stuff. And then I get there. And then there's the, the accommodation, and so on and so forth. Going to watch Albie race would be fantastic. And to do it in Italy, which is where the World Championships are next year, and he will qualify for those. And he came second last year. So he is a seriously good driver. I'd love to see it. I have watched him in the UK, because I can go to certain racetracks and get home afterwards. So your questions, very fair one, and I think some of it is logistical. Some of it is me being a bit frightened. And I never used to feel like that I never used to worry about these things if I fell over  I fell over a big deal. But not anymore. So yeah, I think we might still do it. You know, if he does qualify, I mean, Sue, feels the same way I do about flying. She hates it and horrible.

Simon Minty  52:03  
At the only thought that I had with there will be you know, six of us, seven of us. But yeah, then, you know, you got a couple of other disabled men who will be hopeless, but we'll have complete empathy. We'll have some women around who were able to do stuff. I don't know, there was a bit of me like, we're all going to be in this together. It's not

Phil Friend  52:25  
I'd certainly go if you could guarantee that we we have our own, you know, Sunshine Variety Club van that we go in, you know, with a driver and

Simon Minty  52:36  
I went with four other differently disabled people to New York and San Francisco for work, and had to organise every moment that fly the transfers, rooms. And I mean, they were petrified  two or three of them were petrified to travel. I mean, it was a I mean, it was an amazing trip. But yeah, well let's I knew your hesitation was like there was something I couldn't work it out what it was.

Phil Friend  52:59  
So I think that's still open as a potential trip. And we were if we were more serious if we get serious about it. And Albie of course, has got to qualify and all that stuff. But I think that's still open for conversation. I'm not shutting it down, saying no, I'm not doing it. I'd like to do it. Just on Albie he raced in Orlando and he had two weekend's racing in the US against people from all over the world. And in between went to Disney World and all that stuff. And he finished second and he finished second by an axle and one point or something two points three points. He was so good there, but he got a five second penalty as did the bloke who won the championship in the final race on the final corner. So it seems to be so the potential anyway, I'm very proud of him.

Simon Minty  53:54  
his life sounds like Lewis Hamilton and he's only twelve, unbelievable. 

Phil Friend  53:58  
Well they have to get permission he is classed as an elite athlete which is interesting because then schools are allowed you know for people to miss certain schooling Now obviously that's you got to be careful with this because Albie's future may not be about car racing. It could be something else but it's so but he's only 11 So you know he's got a long way to go but yeah,

Simon Minty  54:19  
don't need to explain it. elite athlete to me, you know that.

Phil Friend  54:24  
I do of course Bocchia shooting and

Simon Minty  54:28  
Which way  do I go is it my brain or is is my creative 

Phil Friend  54:31  
Where do you concentrate? Because you know, you're talented across so many different areas

Simon Minty  54:35  
It's hard. It's very. I'm stopping this. I think we should go and watch Albie, if at all possible.

Phil Friend  54:43  
That will be great. Final point for me. Sue is off to, Morocco next week for this kind of annual event. Not always annual, but nearly always.  It's singing. She's part of a little singing group. They're going off to Morocco. They're all gonna sing their heads off and Sue, we'll get I call it respite care. But I've said this before but the the salutary lesson is I have to manage all on my own and that really demonstrates how much Sue does when she's here and I don't sometimes notice that So, yeah, Morocco

Simon Minty  55:19  
What do you plan? What's prepped? Oh,

Phil Friend  55:23  
Oh 15  TV dinners. Yeah mainly Bangers and Mash bangers and mash and beans. You know, I'm an absolute Alpen fanatic. So breakfasts and lunches are always the same. No, my daughters have already put they've, I've had a whatsapp from them saying, you know, Mum's going away next week. Can we begin to develop a care package for Dad  that kind of stuff. All right, we ought to bring things to her and we got any listeners corner?

Simon Minty  55:54  
I don't think so. No. Okay. Thank you for listening. Good people. We hope you have a lovely time and things are good with you. We have lots of notes, the show notes so you can links and follow up.

Phil Friend  56:05  
Yep. And if you want to contact us, you can do that on email at or or

Simon Minty  56:13  
the social media. Instagram, Facebook, LinkedIn, and Twitter X. Take care bye bye. 

Phil Friend  56:21  
Bye bye.

Announcer  56:23  
This is The Way We Rolll 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

Independent Living Worries
Hanif Kureishi