The Way We Roll
A seriously funny take on life from the disability driven duo... Simon Minty and Phil Friend.
The Way We Roll
7 Daily Hurdles, UN Snubs, and Personal Journeys
Forbes Online posted an article which showed the 7 things disabled people have to think about, which non-disabled types don’t have to. Simon thinks it’s informative and helpful, like an access rider. Phil bemoans why we still need to tell people the basics.
There are big concerning issues relating to disability right now.
Why isn’t the UK Government meeting with the UN about its obligations under the Convention on the Rights of People with Disabilities?
How do you justify the possible closures of ticket offices at train stations, which will impact disabled travellers more than most?
As is our way, it’s personal, too. We make an appointment with Phil’s radiotherapy treatment and head to the athletics stadium where Simon competed at the World Dwarf Games in Cologne.
LINKS
Forbes 7 Things Disabled People Have To Think About Every Day
Andrew Pulrang @AndrewPulrang
Unlimited What is an Access Rider
United Nations Convention on the Rights of Persons with Disabilities
Disability Rights UK Government refuses to attend
Ministers skip UN meeting on disability rights
BBC Tanni-Grey Thompson says big problems for disabled passengers with ticket office closures
Photo of Simon competing copyright Anna Spindelndreier
Announcer 0:10
This is the Way we roll. Presented by Simon Minty and Phil Friend. You can email us at Minty and Friend at gmail.com or just search for Minty and friend on social media. We're on Facebook, Twitter and LinkedIn.
Simon 0:28
Hello and welcome to the Way We Roll. With me, Simon Minty.
Phil
And I'm Phil Friend.
Simon
It. is just the two of us. After a lovely show with Sophie Morgan last month.
Phil 0:39
Wasn't that brilliant? I've seen her on a bike going across America. Very, very envious. Very, very envious indeed.
Simon 0:49
And how are you?
Phil 0:51
I'm okay. Well, I'm okay in myself. Let's put it like that. But since we last spoke, I don't know if we've shared with the listener that I've been prostate cancering for some time. And when I last got checked by the old oncologist chappie, he said. Probably time to do something a bit active here, because I've been under surveillance Simon many, many years under surveillance. Anyway, it's swap time now, so they did an MRI, saw the cancer, had got a bit bigger. So decided radiotherapy was the way to go. So on Monday coming. Not that that helps the listeners if they're listening to this in 2028. But anyway, I'm starting radiotherapy treatment next week and I'm not too fussed about it on one level, but it's all the stuff that goes with it when you're disabled, you know, getting on and off trolleys and trays and doing all that stuff. And so yeah, so that's five days of radiotherapy and then apparently it's, you know, side effects are fairly minimal. Fatigue is the biggest likely issue. So the next podcast will have that sort of snoring noise in it.
Simon 2:02
So we will be joining the listener.
Phil 2:07
Podcast live from Mount Vernon, couldn't we? And here we are in the whatever room.
Simon 2:12
So before we do 27 jokes and, you know, pretend that nothing's happening. I know you've obviously told me personally that there was heavy stuff going on, but it wasn't worth doing anything about it yet. That was the impression I got. So it sort of kicked up a level and they're like, okay, we need to zap it back down.
Phil 2:30
Yeah, basically. But keeping it very simple, the cells, the cancer cells that I've had for some time are obviously slowly increase, they don't stop growing but they're contained within the prostate itself, so it's less of a concern. The worry I've got is that if they escape from the prostate and of course they're then in your system and that makes treatment much more difficult. So they've been monitoring for a long time. The oncologist has now said the cells are pressing against. I think he used the word capsule. So that's now, a higher risk that they could get through. So what he's saying is let's kill them before they do. And the good news is there's a new radiotherapy treatment. I say new I think it's in the last two or three years, which is incredibly precise, very, very, you know, accurate. So it causes less damage to surrounding tissues but also doesn't have so many of the side effects that the old type of radiotherapy. I'm sounding like a real expert. I'm not really, but that's what I've kind of gleaned. It's called Sabre. If our listeners are interested SABRE. And so what the oncologist said, he’s very, very positive about this, it will kill the cells. There may be one or two left, but they're not going to be a big issue then I have routine blood tests after that to make sure it stays where it should.
Simon 4:02
And I am pleased about the prognosis. And if it was serious two years ago, they'd have done something I think there's two things for me. There's one. How do you feel about it? Because whichever way you look at it, there is still it must be a little mental shift going. Oh, well, I’ve gott cancer.
Phil 4:25
You know, I tell you what's interesting. My, my diabetes is far more concerning and that worries me more because I, have real trouble not eating chocolate! My blood sugar levels have started to vary a bit and so I've got that agenda as well. But I've I've had that agenda for 20 years. But something's going on now. Is it my age? Is it The doctor says, you know, we get that our bodies obviously get less efficient. Older people have, you know, the variations in their blood sugar levels are different from younger people. I'm not as active, so I don't know how we're going to come on to how active you've been over the last few weeks. But the fact is that my diabetes is more in some ways more threatening. You know, most people, I think, know that diabetes can lead to blindness, can lead to, you know, amputations, blood circulation levels, all that stuff gets compromised, which is why it's important for people to I keep checking that they're okay. Will come, you know, come on to you in a second. But and then they go and manage these things well. Do what the doctors suggest you should. And I've you know, it's been fine for a long time, but now it's suddenly started to be a bit unmanageable.
Simon 5:48
I'm smiling a little bit because we had a phone call a week ago some time this week, and I remember asking something about how you felt about it. And I asked you three times and each time, and I do agree with you, but you're right, the diabetes is more impactful. And I guess it's the cancer is. Well, I just got a crack on.
I remember Danny Baker when he had his neck cancer. . He went, Well, I haven't. I've got no choice. And secondly, the people are doing the really hard work are all the medical people, they have amazing. I am just this passive recipient. Now, of course, you want to be positive. You go through it. And I don't know what the impact will be. I think you're right. The fatigue I know for my sister when she was in treatment, it was fine for a couple and then that. Yeah, then it whacks you. You got five days consecutively of treatment.
Phil 6:43
And it's cumulative. So your sister's absolutely right that, you know, day one's fine day two. And it carries on after the treatment stops. So obviously the radiotherapy, I don't know how it works but, but they carry on working after you cease treatment. So the doctors have said to me that I'm likely to be fatigued, but maybe one or two other side effects, which would be pretty minimal. The reason I'm being a bit blasé about it, I suspect, is because everybody is being fairly positive. Nobody's saying to me, you know, this is really dangerous and you've got to and I've read the stuff and the joke about men with prostate says you'll die of something else. Well, my type of cancer. This is the important bit. The cancer I've got is not aggressive. It's not like some people with prostate cancer remember Bert. Massey, our old friend died of prostate cancer. So there is clearly for some men, it's a very dangerous condition. For others of us, myself included, it is potentially dangerous, but it can be managed well. This is part of the management, I'm guessing, now to have this treatment to stop it happening.
Simon 8:00
I wouldn't use the word blasé. I think there's a little bit of avoidance, but I think it's more humble. You're like, Well, at the moment it's not a big thing. I don't want to turn into a big thing. This isn't you got three months to go, they're going to zap you with everything. This is okay. I've got to go through this procedure because this prostate cancer is growing a bit, but everyone's saying,
Well, so I suppose you don't want to turn it into a big thing. I want tears, and I want, you know, what am I going to do in my life lots of regrets, A lot of apologies, that sort of thing. But I'm not getting any of that.
Phil 8:34
And when I'm bleeding from every orifice and can't control any part of my anatomy. It maybe be I will sob a little and give you what you want. So I'm looking forward to having to sit on metal trolleys that are wheeled around because transferring for me is a real issue now. Yes. And poor Sue says,she’ll come along and help. She can’t really help me. It can't help me. I'm so.
Simon 9:04
Yeah.
Phil 9:05
So she's going to say I've read the book.
Simon 9:07
The anyone getting hospital and I know we're treated brilliantly and people care but there's a sort of sense of I feel you lose a bit of dignity because you just got to hand yourself over. And then there's a double whammy with the condition, the disability.
Phil 9:20
The thing that's interesting, we've had this conversation in various ways over the years. I go into this situation and I see the staff who are generally very nice and do everything they can sort of say, Oh God, because they used to people walk it in and get the thing and then get an offer and walk in out. They're used to all that. When you present yourself and you've got a yellow transfer board, how it which I mean the brilliant bit that I really enjoyed was going in for the MRI scan. It's all magnets, the massive magnet. That's what it is. Yeah. So my wheelchair cannot come in the room because if you blow the thing up.
Simon 10:05
Oh yes.
Phil 10:06
So how are we going to get you from here to there? Oh, I know. We'll move the trolley. You know, it's as if disability presents clinicians with a whole set of things that they don't come across very often.
Simon 10:19
Yeah, okay. We've gone into this one now. I remember having MRI scans and I was using crutches at that point, walking sticks because my neck and neck might because of my hip. And they were like, You can't bring in there in the room. And I'm like, we have I can't walk in the room without it. So we got that. The problem here, it drives me crazy that they, they must have come across other wheelchair users who get prostate cancer.
Phil 10:42
Well, they come across unconscious people that they MRI right. Accident emergencies. They would will you straight off for an MRI if they thought your brain was damaged or something?
Simon 10:52
You're suggesting it's better that we go in unconscious and with a disability.
Phil 10:56
That might be a way forward. I mean, instead of me getting on that trolley, why don't you hit me with a large hammer and just carry me?
Simon 11:04
Exactly. You deal with it. It is definitely.
Phil 11:07
I was in hospital and then I said, I need to go to the toilet. And they said, Yeah, it's down there on the right. And I said, Hang on a minute, I can't walk
Simon 11:13
Yes.
Phil 11:14
Oh, that's a bit of a problem.
Simon 11:18
And I will come on this memory. When I flew back from Cologne, I had to tell seven people the details of my mobility scooter from Check in to the gate, seven different people. And I sent all of this information to them three months before, and it says, If you made it bigger, oh my God, you are disabled with the mobility scooter. Have you come from Mars? We've never seen this before. You like you've had all the information for months. This can't be new. And so I'm getting a little bit rash. I should warn everybody. It's a bit like now I got toothache and I didn't sleep last night, so I'm going to be so ratty.
Phil 11:54
Oh, that is a bit of news you didn't share with me early.
Simon 11:57
But as you off with cancer I'm slightly out trumped.
Phil 12:06
And then I go diabetes, which, you know, that finishes you off. I mean, what is there left to talk about? So let's talk about you. Come on. Now. This kind of thing had a reason, didn't it? You would. There's a story with Cologne.
Simon 12:18
Yeah, Just before we finish off, I move on, So I would like to say good luck. And I know everyone would say good luck.
There is a vacancy. I'll need a co-host. Yes, I say that in jest because I know that is not an issue and I know it will be great. I wish you luck. I hope it's not too exhausting. You will have more impairments than you can shake a stick out. You should come out of retirement. Mr. Lived experience. Yeah. Got everything? Yeah.
Phil 12:51
I will update. We will update now when, when all this is over. But yeah, but no, seriously. Oh yeah. It's kind of you I, I want to hear not just about scooters, but I do want to hear about. Forget your toothache. I'm not worried about that. I want to hear about cologne. And why were you in Cologne?
Simon 13:15
And I will use words I don't always use. Like, Well, dwarf games, because that is. That's what it's called. And this is the eight of them. We have had a every four years for a time. I mean, this one should have been 2021, but COVID. So we bumped it.
Phil 13:34
Interrupt your is there an Olympics, a dwarf Olympics, or is it is it the world World World championships?
Simon 13:43
I it right after that. I bloody hell with it. The world is it. Yeah. There's nothing bigger for us until you go to Paralympics but then it's not just.
Phil 13:52
Our case, it kind of sits around that. Yeah. Okay, good.
Simon 13:55
I think we'd probably get in trouble if we called it the Olympics. So we've called it the World War Games. Every time it gets bigger and bigger, you know, it's been in Canada, it's been in Belfast, it's been in the US, it's been in France, it's been in UK a couple of times. This one is Germany in Cologne, as they say, or Cologne as we say.
Phil 14:15
I was trying to pronounce cologne, but of course I default to Cologne. It's bit like Bombay and Mumbai.
Simon 14:22
Could be, although I then if it is the same, I think one of the has changed and there's Kony's K over the two little dots above and I love two little dots above and it's really cool. Anyhow, it is arrived on a Friday and you sort of finished a week Sunday after, which is my eight nine days. And every day is full on athletics And that track and field, there's basketball, there's football, there is badminton, there's bocce. That too, the game of the beanbags, like ball or bowls balls. The two I went for one was Boccia and the other was powerlifting. It's one of the earlier sports. The night before I had to go into this changing room and it's all sort of hidden and boarded up. And I thought, What's going on here? And I went round the corner and it's because there's 25 blokes with dwarfism all in pants standing around, lining up big statewide. And I said, I know that Germany is liberal. Yeah. You even ignored my saucy joke. I know that there is Gemma's very openminded was.
Phil 15:34
A sight to behold.
Simon 15:35
I suspect it's whatever the height of the people. I mean I have I haven't been in. I can not because I go to the gym. I do see men all the time and in various states of undress. It just was unusual. I kind of thought bloody. Oh, here we go. I think it's a double whammy self mirror image. So there's all these differently shaped bodies with sort of bottoms or tummies or legs and all different shapes. And I'm like, Oh yeah, that's me. I'm one of these. Anyhow, we were waiting and then the very frustrating thing, so I did what's called a bench press, which is lying on your back to age. Lift the bar off, give it to you and your hand and you have to hold it up straight. Then you have to put it down so it touches your chest, the bar, touch your chest, and then you have to push it up to the same point as you start.
Phil 16:27
To lift takes place. Once the bars on your chest lift it from there or do is the lift lowering onto your chest as well. So it's the complete moment.
Simon 16:37
Exactly. If you ever do any of these sports for anybody, the thing to learn is, one, you got to learn how to do the sport. The second is the technique and how it works. And then people making mistakes because you they give you the ball and you have to wait for the judge to say start. So you just hold it. Some people were given the ball, start going down and they haven't said style and you've just done a and lift. And it's not.
Phil 17:01
It's it's not that different to the nondisabled kind of way of lifting but they're making slight adjustments. The ultimate is can you lift this way under control.
Simon 17:13
And the smart thing is the reason you might start there is because not everybody's arms can fully extend or lock out or different shapes. So whatever you start out, you must return to. That's the theory or that's the practice. Actually, anyway, I have been training, I have a local gym and I told my men and they three or four months ago I wanted to do this and we spent a lot of time practicing and training and gradually get my weight up before I went. My maximum was 50 kilos that I could lift. And when I say maximum half the time I could and half the time I couldn't, it was a real hit and miss. The last session I had with him before I left, we went to fit full competition experience. I had to wear all my kit. We did a warm up, we did a dive. I said, Jim, could you get everyone in the gym to grab around and cheer me on, if I would on that? So anyway, I did the competition and the joy been, how do.
Phil 18:15
You get selected? I mean, do you have to pass a certain level of competency? Like, you know, there's an entry level for your particular weight and all that kind of thing, or did somebody bring you up and say, Simon the well, dwarf games is guy Don't you fancy coming over and doing some How does it work?
Simon 18:33
It's slightly different. You put yourself forward. So this is an individual sport. So it's not if it's a team sport, we had too many people want to play football, so we had to select some and not everyone played and others joined other teams. You have a B team. This is an individual sport. You put yourself forward. It's sort of open competition. There isn't a team manager wearing the can and you can't nation colours.
Phil 18:56
Are you wearing proud Brit round.
Simon 19:01
Yeah you know I did that dragon boat racing in Hong Kong when I represented my country. Now I'm doing it in Cologne with powerlifting.
Phil 19:08
There's no limit to your skills as we found when we had Eddie Simmons on the show.
Simon 19:14
Yes, the bit I was really touched, kissed Russian accent immediately. Now, Simon, you are making us proud as a thanks. Well, let's see what the country outfits don't know about me. So the bit which I really love.
Phil 19:29
How did you get on? Come on.
Simon 19:30
This show that I really loved and I need to qualify. This competition is one thing. The other part is being there. Being with other people like you, the camaraderie, the equality, the fairness, the treatment. I'm there's a warm up area around the back and I got my wrist straps which support my wrist, which you allowed to wear. And I have a band which you stretch to warm up and all that kind of 20 year old blokes who I know them all and we smile and they say, Alive, I don't really chat to them. We're all chatting away to about technique and I'm loving this. I did my warm up a 45 kilos, two or three them helped me. I said, That's not bloody for if you like, and lift it in the warm up. It was so heavy and light is I thought they wind me up. Then I went up and did my 45 kilos and it was a walk in the park and someone told me afterwards the bar is lighter in competition and what they mean is the adrenalin, the excitement. And by this point there was three or 400 people watching and you know, some of them know me to the bridge. So I got on Simon it and you know, Oh, my life, this is unbelievable. I got my second lift went up to 50 kilos bearing in mind that was my hit and miss in the UK. Again, I did it as if it was I done it all the times. Unbelievable. Suddenly it was all easy. So then I went to 52, which I'd never done before, and I lifted that as well.
Phil 21:02
It's no best.
Simon 21:04
Unbelievable to you.
Phil 21:05
You can't do better than a personal best, can you?
Simon 21:07
You can.
Phil 21:08
Be serious. You can't. There's nothing that you can't do better than your personal best.
Simon 21:13
I was originally keeping this quiet, but I'm telling people, as I am the listener.
Phil 21:18
Now, get ready. Listen, you've heard it here first.
Simon 21:21
As I walked away from the desk so my final lift had been recorded, I walked away. I was done and was on my own for a moment. That was a guy, Michael Pope, who helped strap me down, helps you with everything. He was brilliant. But at that point I was on my own and I was walking around the back, back to the warmup area and I got quite emotional and I still haven't quite placed it, but I think it was something like a real sense of achievement. This is something I'd never done before. And here I had, I done better than I expected I'd competed. I didn't make it. I didn't embarrass myself. It was part of something bigger and special. And he's a 55 year old, been around the block, slightly sarcastic bloke who was really touched by this. I mean, it's it was gone in 30 seconds, but it was a really amazing moment. I mean, I think of other Olympians or Paralympians, and when you do this stuff, Jeepers Creepers, it's amazing.
Phil 22:17
Yeah, I get that. I've not been in the position of being a winner of things like that, but there is a so just going back a bit. So your, your last lift of 52 kilos. Yes. That your final lift then you couldn't keep on going to see how much you could actually lift.
Simon 22:35
You get three lifts full stop. The one of the team coaches walked past me. Well done Simon. Three good lifts and I immediately beaming went, Oh, no, that does something wrong. Maybe my last lift I should have gone for broke and really said, Go for 70 and see what you can do and double that because, you know, I'd already done a 51. I hadn't realised there were two sets of medals. You get a medal, three medals for the top three single lifts. There was a they didn't do it by age, by the way. So I was the oldest by probably 15 years. They didn't do it by type of dwarfism. So all the others had achondroplasia, which is a completely different condition. Demand. And my bones and structure is not as strong or as powerful. So I was always up against it. And unsurprisingly, one bloke in my weight category because that's the only way we're categorised. Did 120 kilos. Good God. Unbelievable. There was one bloke that either I'm getting 32. The other thing I noticed, he had quite a bigger chest, so I decided rather than trying to make myself stronger, I was going to get really big chest. Then when you let the body and don't have to go as far, just get them off your chest.
Phil 23:46
Plastic bands to the ceiling and round the post that helps lift it. You can have a go at this. This is excellent. 130.
Simon 23:54
Kilos, so I need to get to the nub of it. What they also did in this competition was what was called a cumulative total. So a bloke who did 120 failed his two other lifts.
Phil 24:06
So his total amount was under 20.
Simon 24:08
I lifted 45, 50 and 52.
Phil 24:11
It got you.
Simon 24:12
You said 147 was my total over three lifts and in my weight category that was the third highest total. So I then got a bronze for cumulative and I didn't even I mean, someone said, what a brilliant strategy you pulled out there. And I went, I went, Yeah, Oh yeah, for that one.
Phil 24:32
You show us the medal. Come on.
Simon 24:34
Yeah. Say, let's.
Phil 24:35
Have this medal. I'm just looking at the medal. It's actually rather grand saying, isn't there?
Simon 24:41
It's about 120 kilos itself. Yes.
Phil 24:45
Yes. Well both games and then the year around and the big blue and red ribbon. It's very nice. That's. No, that's a nice medal.
Simon 24:53
I mean they had a bloody podium they had to climb up on. I was thinking bloody how, how disabling or even less delay. So anyway we climb down the podium. I was against the German and I think a Finnish guy and you know, it was a lovely moment, It was really kind of cool and special and.
Phil 25:09
I mean I am, I'm very impressed. I mean, you do the bit that you have, you've touched on, but I think is like when you talk to athletes who do these things, a lot of them say, well, you don't see them at 5:00 in the morning running through. Right. You know, and there you are down the gym, you know, eating out night after night. But being serious, there is a lot of work goes in before these events to then do them. But you've also talked in the past about how lovely is to be with people who are all managing similar conditions to your own. And in this environment, it's a competitive environment. Everybody wants to do well. I may not want to win everything, but they all want to do well. What were the evenings like? Simon Did you spend most of your time, you know, sozzled or dancing or what was your job?
Simon 25:59
And I presume it is like the Olympics or the Paralympics. There is a lot of socialising. It goes on. It is lovely because you get to talk about what you did all day and then you talk about what you going to do. The next day. There were 600 athletes who were short, there were 27 countries. So real mixture of nations, 600 supporters all stayed in the.
Phil 26:20
Did you all stay in the village.
Simon 26:23
Yeah. Okay. So we're all in Cologne, I a to city and we didn't have a village per say, but there were four hotels and we were dotted around the place. Yeah. Sometimes the sports would go on to 7:00 and you get home and you're shattered. There's, there's two types. There's people who are shattered and they go to bed. It happens 910 because every day you get up at seven or eight and that is me more likely I'm not going to midnight. I'd sit and have a cup of tea or a chat with someone. And then there was the youngsters who I did get invited out three times. I was really pleased that they're all going into town having a wild time, and they still invited me and you know, I kind of think, Oh, I'm and I think I said somebody in my days. There's a lot of schmoozing, I mean, snogging and all that stuff. And he's clearly not opinion. I mean, media is you're just not part of it. Oh, I.
Phil 27:20
Have idea of that. It's more professional now, you know, We take it more.
Simon 27:23
Yeah, absolutely we do. I just have the cologne sponsor this.
Phil 27:29
Did you get a sense of local people or did this get picked up by the media? Was there any.
Simon 27:33
Yeah, we Germany has whatever the Chancellor and then I think they, I don't know how many regions they have but then they would have a region and that head of that region came and draw a massive press pack and they play together each year with us being filmed. We're always cautious of filming because you don't want people to, you know, exploit you or represent it poorly or something like that. But yeah, also in Cologne itself, you know, I imagine first day or two they were alone. There's a lot of blooming short people around there. All of a sudden, three days in, they all know, you know, you get on the bus or the tram and they're like, Oh yeah, I got in the stadium. Yeah, have a good one. Then they know the drill. I was waiting for a bus one morning in the pouring rain about to I on my own as well. This is miserable. And some cologne local guy when you do know there's no buses today I went know and I'm not and I what am I going to do so I he said follow me he had highways jackets and he was official and he and another bloke lifted my scooter up onto the tram and off the way. So they were great, really lovely, really welcoming.
Phil 28:47
The the trams weren't accessible.
Simon 28:49
So there were some but I always get because I go to the bus stop, it is another tramline. The other tram line was, okay access wasn't too bad is a how I found it was supermarket again get my snacks I didn't go into town parking so I don't know what it's like in town. As ever you meet three or four people are really special. There's a Spanish guy. Yeah, and I never met his name, probably, but him and I just got on really well. We would. He was a wheelchair user, and I use my scooter rather than get the tram on the bus, we would just scoot back from the stadium and have a chat Vol four now. And I love that stuff. There's a lovely young woman from Denmark and Margin and what's her name? Probably again, I could list about ten people actually. And I just are so lovely hanging out with these people. You just get to talk about interest and stuff. You learn stuff especially.
Phil 29:43
Yeah, sounds great. Well, well done you.
Simon 29:45
Thank you very much. Yeah.
Phil 29:46
Very, very. I mean, you know, I know you take it seriously. You didn't just to finish, you didn't do shooting did you? Because that was one of the sports you'd done before.
Simon 29:56
That's why I switched to the powerlifting, because they couldn't get the guns. We had the guns in the UK that are made for us and they couldn't bring them over because you've got to have a local shooting club that will sort of sponsor. You can't just bring guns. I arranged a competition and I couldn't quite put it off, so that's why I switched what I had realises. Next time to be nine days there you need to do at least three sports, I think because it's quite a long time and I'm not doing the team sports.
Phil 30:26
And that gaps in between. Isn't that where you're just hanging on. Right.
Simon 30:29
Yeah. Yeah. So I'm going to do shotput or a swimming or table tennis as well next time in Australia. 2027.
Phil 30:39
Oh right. Well Ritchie, Prince William and so on. Maybe out of the wrong they did to the lane is right by going out to see you.
Simon 30:47
I am looking for sponsorship. I'm sure there is a lot of media interest about a solo, some sort of documentary. Follow me as he returns to defend his bronze. It's it's really building. Thankfully. Ellie Simmons is my mentor and talk to me about how to cope with being an elite athlete. Yeah.
Phil 31:12
Yeah. The stardom the fame back.
Simon 31:14
Yeah. It was great. It's amazing. And about my last corny bit, everything is organised amazingly and we again get a need to do that. We have 1200 people in for a week. Obviously there were bits that weren't quite right or little sort of admin things, you know, that messed up, but unbelievable to pull off what they did. It was so well done and it's and what it is, it's not school sports day. There are official referees we play by the rules it's it's really well done. There's no buggering about what there is though is a sense of camaraderie and sportsmanship in that you want to win. But if someone for his own hurts himself. So if someone's having a difficulty, we stop and we help them because that's more important.
Phil 31:59
You reminded me that when when I was in my days of wheelchair basketball, which is a long, long time ago now, we used to have the the major national games at Stoke Mandeville, which was the first Paralympic site, the first Paralympic Games. Anyway. And if you went into any of the small towns around that area during those weeks, there were no seats in any of the pubs because none of the wheelchair users needed seats and non-disabled people would turn up for a drink. I had no idea what was going on. So. Excuse me, Where's the furniture? Yeah, it's tape as and it's kind of that adaptation was being made. Then it became famous for all the pubs during the national games. Just got rid of all their chairs. The cologne of course it's all a bit. The buildings are a bit more accessible now than they were in those days, but anyway, they were.
Simon 32:49
Apparently the organisers bought a thousand step stools.
Phil 32:54
A thousand step stools.
Simon 32:55
They were everywhere you went. I felt they were a bit like crack cocaine. If you got one, you grabbed it and you pulled it around with you and they would dished and so you would sit and watch gin or whatever, and then they would just pop up. So everywhere you went there was half a dozen step stools and we all had to sit on them or we stand on them. So yeah, it was really smart, really cool.
Phil 33:16
Excellent. Sounds brilliant.
Announcer 33:20
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Phil 33:28
Okay, so just move, move. Moving on. Simon, from your triumph in Cologne and actually a little bit of there is some link to what you were talking about, particularly around transport. You will know and I think our listener probably knows by now that there are plans afoot to to close ticket offices at railway stations UK is where I well, I'd better be careful here. I'm not sure if it is UK wide but certainly England and there's been a bit of a uproar, as you can imagine on a number of fronts. I think a lot of people are very concerned about ticket offices going from the point of view of, say, unemployment, people losing their jobs there. There's been the issues of safety. You know, more staff around the safe the places tend to be. But for the disabled community, this is having this has made a lot of people very angry because they see that as a restriction in their ability to travel. And let's explain. We'll throw one or two ideas into why that might be. The first is one of our favorite subjects that everybody, of course, is digitally switched on. Everybody knows how to do everything online. So all you have to do is book your tickets, you know, via your smartphone. Well, terribly sorry. There are lots and lots of people, par disabled people, who either can't afford the equipment that's required for that or don't have the skills to do it. All the tech, the technology. So that's a no go. The other is passenger assistance, where you normally go to ticket office, first door to the information area and you know, there's those kinds of things. There's the idea that on smaller stations, particularly in rural areas, thethe local community almost I mean, I've heard stories of the local railway station, the cafe being sited in the railway stations serves me, but it also serves the local people who go there and and those kinds of amenities. In danger of disappearing. And the impact on disabled people, it would appear, will be much greater than it is on the vast majority of people anyway. So I'm raising it because I I'm it's another area where you think you're making real progress. Transportation more accessible. People can travel better. It are no longer in the God's van type stuff. Now over here we're closing amenity is on the basis of cost efficiency and so on and so forth. And the impact on a particular group is far more disabling now than it is on anybody to see what did that than anybody else anyway that you know about this. But I wonder what your feeling is.
Simon 36:31
And I'm surmising I'm genuinely in agreement with you, but for the sake of the podcast, I might be a bit contrary to you, get a little bit of all stuff going. Yeah. Is there I mean, listen, Mick Lynch, if you don't mind me calling you that will not.
Phil 36:52
I'd be honoured.
Simon 36:54
That I, I'm always interested when, if disabled groups say this is going to really mess it up for us. I sit up and listen. I'm always a little bit cautious when not disabled, even good eggs start saying, This isn't fair. You're going to impact on the disabled where we get pulled in as a useful tool to argue something. And actually the primary motive might be something else. And I'm always I always want to just double check that I we are we patronising disabled people by saying they can't use the tag can make the average human being. I saw one guy tweeting so I kind of get with it why we want to be treated the same as everyone else. We should use apps like everybody else. Well.
Phil 37:39
I mean, that might be so. But there is the question of cost of these apps. I mean, they the financial situation that a country finds itself in at the moment is it's so one of the things that you might chop is broadband.
Simon 37:51
Apps themselves don't cost anything. You're saying it costs.
Phil 37:55
Going online to downloads, tickets, book trains, all that kind of stuff. And let's be clear. Come on. It's not as easy as people make out.
Simon 38:02
Out a little link to that. My parents, who would meet the definition but are not disabled, they pre-book their parking through an app on my mum's phone. Now they've changed so their local station you can't pre-book it anymore. You have to do it on the day. And then when you do it, you've got to add your three digit number on the back. And my mum tried to do it recently. She put a pin number in and got a 60 quid. Fine and devastated by this devastated, I mean really upset.
Phil 38:35
They could find.
Simon 38:37
Because they essentially didn't pre-book. They didn't but the parking is one moment but the wrong coding but right. This app is really complicated for her. She used to be able to either go up the day before and pre-book get the they've taken away the pre-booking me or my sister would do it with them. So they're already set. They can only do it on that day now which I don't really understand. Why, I mean, why have you denied that? So it makes it even harder. So I do I mean, that's why I do agree with all of this. My local station will become accessible as from next summer. I'm terrified of not having the assistance around when they arguing. I need the rail operating companies or government. We won't lose bodies or human beings. They will just be transferred to the platform rather than take office.
Phil 39:22
Yeah, that's right. And then what happens is one of those leaves through natural causes and they die. I mean, that's what happens. It's not, it's not that they won't initially for the first year, have staff wandering about stations to help people. That's great, you know, But when Fred leaves because he's retired now, they'll just go, Oh, well, the head count, we don't need that many people now, do we? So you get this kind of withering on the vine approach. I mean, I'm all for efficiency. And I think what we know about the world of the Internet and everything else is it's made us much more efficient when it works well, he's brilliant, absolutely brilliant. But there are still so many people around who find it. A challenge to use your mum's store is a good example. That's not an incompetent person who can't see. This is somebody who just happens not to know what to do in that it. And we've all been there flustered, you know. Do you Akua Cosby on the barriers not working your card isn't working.
Simon 40:18
What if if we have time, we may pick up on this. But am I you know, you and I are reasonably confident people who are disabled we know how the system works. I went to Edinburgh last week. I was nervous at various points along the way. I pre-booked my assistance. Nobody knew anything about it. It's constant. And when you don't have that support, I know I've been involved in two or three campaigns to get more disabled people to use public transport and if the support that they then get is disappearing or changes taking a step back again, and that either leads to more isolation or inability to just to do what everybody else is doing. So there is a real risk, but I want it to be on our terms that we are saying why this is an issue rather than us being used as a tool by others, if you see what I mean. But I'm terrified. Not terrified. But I do feel this is one of those ones that just goes ahead. And, you know, you were thinking sometimes thing is so hard to stop.
Phil 41:23
I think the bigger picture, if you talk to how do I know this, I don't talk people, but, you know, I read the papers, I watch the news. I I'm on websites and social media and so on. And one of the things when you look at customer service, people complain in a lot about is the lack of a human being to talk to. Something's gone wrong mechanically with doing all this online, and then it wouldn't work. So I go to their help page that didn't help. I go to their contact page and I find various sort of bots or various other thing, or simply I got a phone number and I ring it and then I get 63 options as to what I do and end up basically going back what I started from. What most people seem to say about that is I want to talk to a person I bank with first direct. The reason I bank with first direct, I'll be absolutely blunt is because whenever I want to, I can talk to somebody about my account on the phone that easy, just make a phone call. Now the ticket office is disappearing. Is another example where human to human contact is disappearing. You know, we're actually sitting asking somebody some questions is this is what you need to do?
Simon 42:46
I honestly think now, I'm sorry to say, you and others, I think we are still a dying breed. I personally I don't want to talk to anyone unless I have to. I'd much rather have it automated. I don't want to get involved in queues and phone calls and all that stuff. I want to do it, get it done and move on and get on with what I'm doing. I don't want to talk to someone all the time. However, when it goes wrong, that's when I do and I recently broke down, or rather I had a blow out is one. I am in central London, so I contact the RC now. I could do it through this app and it sent me a message every 10 minutes. I only recorded it this someone on their way, but never once did I speak to somebody and I've got the almost. I didn't like it. I was like, I don't know that anyone's monitoring this and they are because I'm getting these messages. But it didn't feel comfortable and it might have been 1 a.m. sent you London pouring rain.
Phil 43:44
I didn't get a text message telling me my my first radiotherapy treatments should have been last week. It got cancelled. Don't know why, but I got a person ringing me up saying I'm terribly sorry, Mr. Friend, but this is happening later. We're going to reschedule etc.. Sorry. The radiologist who called me said, This is so important. She said to me, Look, I'm really sorry about this. I and we will rebook you and I will call you later. But let me just tell you, I've spoken to your oncologist and the delay is not going to affect your treatment. It won't make it worse.
Simon 44:25
Ye.
Phil 44:26
I was really grateful for that advice or information because it made me think, okay, inconvenient. Yes, I'd planned for this, but now it's got to change. Now that's when human contact is so important. You arrive at a railway station, you're not sure you're blind. You don't know which platform the trains coming in on. You don't know whether it's late, early or whatever you want someone to talk to. It doesn't have to be the ticket office to be fair, but it does have to be a human being. And with unmanned stations increasing in numbers, you know, and women talk a lot, I think primarily women talk a lot about their feelings of vulnerability on, you know, unmanned railway stations. And 11:00 at night. It's that kind of thing which is turning into a society where nobody talks to anybody anymore.
Simon 45:15
Some, don't want to.
Phil 45:16
You think?
Simon 45:16
So just to give you a heads up next month, I will be replaced by a Bot. I am get I get I can't be doing this. Chatting away and edgy before I am. Of course I'm with you in principle and I have a good story on that. We really I'm spinning off. I wrote a client was doing something that wasn't great for me, so I composed an email and I sent it to my PR, Sarah, and said, Can you tell me this alright to send, you know, I'm going too hard or anything. I didn't hear from her for two days. I got an email back from Richard saying, Just to let you know, I'm getting them the call we've sorted out, this is what's happening. And I went, Oh, now first of all, favourite PR in the world for doing that because she said, My problem. And secondly, I've said to her, it works because I do the emails, I don't want to talk to people. You pick up the phone and talk to people and they love you for it. It's it's a really nice way of doing it. I had two guys that came to show me a type a wheelchair the other week, and I said to it, they said, Your PR is brilliant. And I said, No, I'm really pleased because I said, She's the really nice one and I'm the really grumpy, miserable one. And one of them went, Nah, you're not going to be miserable when the other women are. We We're grumpy and miserable, so we can't even tell whether he is or not because we had the site. Let's move on. The UN and the government, the British government.
Phil 46:38
Oh, for goodness sake. And basically, basically the background to this is that back in, I think 2016, the British government were lambasted by the UN for not meeting the UN Charter on the rights of people with disabilities and they were basically given a very hard time over it. They were due to appear again this year to update the UN committee on Progress, etc. and they've decided not to go. They're not going to answer this, they're too busy. They're going to go in 2024. Apparently, which is election year probably.
Simon 47:23
So let's see what you did there.
Phil 47:26
You tell me. I mean, I just cannot get on the one. How old that? I think we're brilliant and they want to do everything I can't help And on another.
Simon 47:34
I can take going to be contrary I do think the government is sending all sorts of mixed messages on disability. I don't know where we're at and I you know, one minute they've got these plans and strategies and then there's this golden opportunity that isn't mentioned. I remember when it was reported a year or two ago, and I don't like myself for saying this, but I think the UN didn't present it well. But the government said you spoke to 20 people and you're making out this is everybody. And the research was not strong. And I'm probably misquoting, so forgive me, but I just thought there was a chink. If we're going to present the case, we need to do it really strong. The flipside is looking at this time there was three or four really respected Disabled People's Organisation as it was saying, the impact and the poverty and the hardship that disabled people are experiencing is really significant and awful and that really did worry me. So all very well said. They'll do it next year, but what's happening in the meantime? So yeah, I'm I always think the UN is in our strongest role and I think they see our PD works brilliantly for other countries, but not necessarily for us because we've got a whole lot of other laws and rules and regs and so on. But yeah, it worries me What again, I don't know what the government that plan or that policy is and I imagine if it wasn't the government we have and if it is Labour, they would have rocked up. That's the difference.
Phil 49:03
Anyway. I mean let's watch this space. I know that many of the disability or Disability Rights UK are going out there.
Simon 49:08
Yeah.
Phil 49:09
Too. So the disability lobby will be going and we'll be talking. So that will at least help. But I think the government, if they were proud of their record, they'd of course go I was.
Simon 49:22
That was a warming piece. When I looked at the BBC reporting this and there were three or four people that you and I know who were there representing DPOs. And I'm like, Yeah, this is cool. It was I wouldn't say it's a movement, but there was a there was unity and there was some good, solid people making sense. And I was like, Yeah, this is great. I'm I'm so glad they're there. I felt a bit embarrassed. I think I put a picture up on Twitter of me trying to pretend I had a yacht that day. That is completely inappropriate. But as ever, there's just brilliant people doing the stuff that I don't necessarily do.
Phil 49:57
Yeah, well, I'm we're doing something slightly different, but I agree. I just feel let down.
Simon 50:05
We are not far away from time, but I wanted to pick up an article, if that's all right. And it was published in Forbes and the title is Seven Things Disabled People Have to Think About every day. Now there's these lovely paragraphs that say disability is fine and we okay living like that. We have pride. Then there was a bit about barriers and social, you know, social constructs are more disabling, right? That's all done. Then it had this seven things and I think you're slightly different to me on this. I really like this. And you know, there's how far will I have to will walk or travel is number one is it accessible, timely, reliable transport. Can I get there is a place to sit down. Can I go to the loo? Is it noisy, crowded, chaotic? I'll do the other two because be there. Will it cost me? Will I be with out of pocket my doing this and will it be difficult? Well I have people who stare at me, make comments, refuse to deal with me. I thought if you you know what is it reminded me of something that a friend Sarah Rennie's come up with, which she called it an access rider. So you're a band and you're doing a gig. I've made this Non-disabled now, and you go, This is what we want when we rock up. And Sarah has come up with her rider, she said, I'm coming to visit you. This is what is essential and this is what isn't. So for her it was obviously I've got a wheelchair, so I need access and need to park a car if I'm in the car, but I'll probably use public transport. She always said I don't need an accessible loo, I won't be using your loo. I have other ways of getting that. I will bring a PA. My PA is not part of the conversation. You can ignore that person because they are there to facilitate me. So it was almost like a basic reminder of now gradually those riders should fade away. But I just, I mean, I it with my PA who's learning how to work with me and what I need you go in there on Wednesday and I'll say have I got parking, what's the entrance. Who's going to greet me then at the door.
Phil 52:11
And did she say to your question. Yes, yes, yes.
Simon 52:14
MyPA Yeah she does Now. She's learning. The first few times she wouldn't have thought of all those extra things that I have and the things that matter to me, you and other disabled have to think about.
Phil 52:27
It's not. It's not. As you said, I have a slightly different view. I do have a slightly different view, but it's not that I don't agree with that, if you see what I mean. I think I. Right. It's back in the day of pay. PA Friend Associates.
Simon 52:43
Oh, it's your first business?
Phil 52:45
Yeah, it's my first business. 1980s. And people are writing an etiquette guide and I'm helping write this thing and it's the Employers Forum on Disability, and it's got some cartoons in it and it's got lots of things like, I'm going to need parking, I'm going to need this, I'm going to need that. And I'm thinking when I read the Seven things, Oh for God's sake, we're still banging on about the same stuff. Now to be fair, the author of that piece will stick it in the show notes, is actually talking here about the sort of personal agenda that you've got to be clear about. so, for example, if I know it's really difficult for me to transfer out my wheelchair into my car seat, I make fewer journeys. If it's easy for me to do that, then I make more journeys. So our colleague who's written this article is saying if I know these, if people won't stare at me, if I know I can do this, if I know that's available, that encourages me to go. And your earlier point about, you know, the world accepting that we need different things and being cool about that, it's like your story earlier about the Scooter and Cologne airport, whatever. And I get that bit, but I suppose a bit of me is going, Oh God, I'm so tired of hearing this stuff.
Simon 54:14
Yeah, if they put at the bottom and here's some words you should use when you meet a disabled person not to offend them. Don't say a wheelchair. We're not confined. We know that. Yeah, I totally get. It's very old in many ways. It's very old. And I totally agree with your point. That was 86 was that 40 years ago? And you're going still still we're a disability 101. There was a weirdness that I just there was something fresh and useful about it although it shouldn't be I'll I put an Instagram post up about going to a restaurant called Sketch and I went with a wheelchair user and I said we had a lovely time despite it not being truly accessible. And one of the comments was, well, forgive my ignorance, but there is more. And I, if assuming everywhere is accessible now and as I own my life. And I said, All right, so next time you're out as you're going down the high street, look at how many places have a step to get in. And bearing in mind that is a wheelchair user getting in and out by is including 27 other types of disability doesn't even include once they get in can they actually get around, go to the loo with the other things. So I mean the level of I mean ignorance in the I'm not being mean, but the level of ignorance is still pretty high. So almost every generation we have to do it again.
Phil 55:37
Well, that's true. Obviously that's true. I all and I know that we have to keep repeating the messages, but, you know, I.
Simon 55:46
But his is your other point. I could do it two ways. One, you're going, Yeah, I'm bored of this. You've done this. And that is where the baton is handed over. And you go, Well, there's a next generation that fired up, can do it better, can do it that way, and that's brilliant. And they'll build on the improvements we've got. The flipside is, which you're more in point is why why is it still why do we still have to do 1 to 1? Why isn't it embedded? Why isn't it sorted?
Phil 56:15
Well, and also for some of the things that we're talking about here, there are laws there in place. You know, and I'd love to know, for example, going back to the story about the ticket offices, this is going to have a major impact. What about things like public sector duty and all that stuff that's on the statute books? So I want to.
Simon 56:35
Add one last line, which you can have another last line that my one last line was I think there's something that made it difficult for me. This particular article was it was it is what goes through my head every time. And I don't think people know what goes through our heads. I think they just think we get there and we do it and da da da and all the anxiety that we might have about. One of the reasons I didn't go out every night clubbing with all my friends in Cologne is I've got a scooter. It could be hard work and I just don't need the grief of getting in. Get out. Can I go the loo? All that stuff. So those are things that are in our heads that will prevent is doing it. If we are reassured we do it.
Phil 57:18
Now that I you know, I do. I think the barriers that are in our heads, some may be imagined, some are real.
We do need to attend to those their hours. But there's no fact, there's no doubt. And you're absolutely right. Of course you are. If you if you go to a nightclub expecting to be able to get in and have a good time, and then you get there and you can't because it's not accessible to you, then you think about it twice the next time you come to do it. So it is well, we used to talk, didn't we, on personal development programmes about things like limiting self-belief.
Simon 57:55
Exactly.
Phil 57:56
You know, stopping myself doing something because I felt I couldn't do that's that's very different from a flight of stairs, which are very real.
Simon 58:03
I mean, Jesus. I think my biggest fear was them all dragging me up on the dance floor and whether.
Phil 58:11
Yeah, and it might be had something to do with the fact that you never took your bronze medal off. You know, you were everywhere you went, this bronze medal, you became a bit of an embarrassment, really. He's a winner. We don't want to be with him.
Simon 58:22
My jaw has dropped. Listen, I wear it to bed, and that is all. Any time you see me with it.
Phil 58:40
We've got to stop. But we got one thing to do before we stop. And I think that's listens corner because. There was a correspondent, was there not?
Simon 58:48
Look at you. You're good at the admin. Go on.
Phil 58:51
Well I believe Alice Maynard
Simon 58:54
Alice, Alice.
Phil 58:56
Alice may not you might recall Alice yet now I'm going to try and find Now I.
Simon 59:01
I Remember what she said.
Phil 59:03
You remember what she said? I have it in front of me. So shall I read out it? Alice Just to set this in the term we in a previous show, I think back in July, we talked about this new consumer duty that the financial services companies and organisations have to deal with, and it was being enacted in July and Alice wrote in, which is always so encouraging. She said, I've just been listening to your latest podcast, thank you, but I need to pick you up on the consumer duty. You talked about it as if it was about disability or the use of vulnerable was about disability. It's not just, it's about people who are made vulnerable by the circumstances in which they find themselves, such as bereaved or financial shocks for which many people, if you read our Financial life survey, are not prepared, Some of those will be disabled, but they are definitely not vulnerable because of their impairment unless there are other issues involved and it isn't about legal duties and reasonable adjustments. Yeah, financial services should already be doing should already be doing that. It's about firms doing the right thing by their customers and getting their best outcomes for them. Love and kisses. Alice Well, what do you make of that?
Simon 1:00:20
I think Alice is right, and I remember at the time, not quite challenging you, but as soon as what, where's the disability angle? It felt this was.
Phil 1:00:30
Down to me. Oh yeah. Typical shift the blame.
Simon 1:00:35
And we because it was a bit blurred suddenly then we threw in disability as adjustments and so we doubled down on that kind of now. So I think she was right and I think contextually we may have positioned it wrong and we could have done it slightly clearer because it will help us. It's not purely disability. That's her point. This is a general thing.
Phil 1:00:59
Well, I of course, Alice, if that's how it came over, then we have to. She's right. Of course she is. But I in my head I was thinking about I must re listen to the pod now. I was thinking that we were looking at disability specifically because of the difficulties that some disabled people would have in, you know, securing good financial advice, support, whatever, whatever. And in that sense, it had an impact on them.
Simon 1:01:30
Is this the time you mentioned learning disabled people filling in forms 17 time?
Phil 1:01:34
That's the that's the one. That's the one. Anyway, I think I take Alice's point. I'm not going to argue with it in that sense because if that's how it came over, then yes, it was misleading and we should put the record straight that the the financial services changes affect everybody.
Simon 1:01:51
Absolutely.
Phil 1:01:51
Thank you Alice for taking the time to write its brilliant.
Simon 1:01:56
Thank you. That's it? Is it?
Phil 1:01:58
I think that's about it. I think we've done all we can do. It's been a long show. Simon. Yes, and a long show. It's probably a toothache.
Simon 1:02:05
Sorry to the listener. Thank you for staying with us. We will be back next month. If you've got anything you want us to talk about, give us a shout. You can drop us a note on social media. We're all over Facebook and LinkedIn and Twitter and Instagram.
Phil 1:02:20
And of course, we have Gmail,mintyandfriend@gmail.com
Simon 1:02:28
Yes.
Phil 1:02:28
So it's been good to see some good luck with you two. Seriously, you presumably going to get it looked at?
Simon 1:02:34
I'm hoping it's temporary in just a bit, but yeah, slightly worries me. Anyway, thank you and good luck with your treatment.
Phil 1:02:40
Yeah, thank you. I'll certainly keep you posted. Take it easy.
Simon 1:02:44
Take care. Bye. Bye.
Announcer 1:02:46
This is The Way We Roll Presented by Simon Minty and Phil Friend. You can email us at MintyandFriend@gmail.com or just search for Minty and Friend on social media. We're on Facebook, Twitter and LinkedIn.