The Way We Roll

Drug Research, Language, Stress, Cycle Lanes and Whitstable High Street?

October 26, 2020 Season 2 Episode 9
The Way We Roll
Drug Research, Language, Stress, Cycle Lanes and Whitstable High Street?
Chapters
0:27
Are You Still Stressed?
6:38
Fixing Dwarfism?
21:50
Is less traffic good for all?
31:33
Using the correct language.
The Way We Roll
Drug Research, Language, Stress, Cycle Lanes and Whitstable High Street?
Oct 26, 2020 Season 2 Episode 9

No messing, this month our show dives headfirst into seeing whether Simon’s stresses have lifted. As a result, we drift into how Phil is and why he hasn’t been out for a while. As if that weren’t enough, Simon expresses his very biased concerns about a drug under trial called Vosoritide. Why? In essence, it will make some people with dwarfism taller. Incidentally, in case you didn't know October was Dwarfism awareness month. 

Phil raises questions about the new pop up cycle lanes and pedestrian-only areas. In many respects, this is a positive but have differently disabled people’s needs been taken into consideration? What might be the impact, indeed, does anyone carry out the legal duty of Impact Assessments? Simon decides Whitstable high street could be remodelled, he is, after all, an out of towner who visited for a couple of days

Language - Is BAME (Black, Asian and minority Ethnic people) done? What’s the new phrasing? Is it best practice to use the phrase ‘Best Practice’? When was it last updated? Do the criteria need updating every few years so it becomes aspirational and not a reflection of what already happens today?

There are your emails in Listeners Corner. You can be in this section next time, just email us at [email protected] 

Links: -

Guardian article on Vosoritide 

Little People UK and Royal College of Midwives 

Wikipedia on Best Practice 

UK Music Industry ‘Drop BAME’ 

Civil Service blog ‘Don’t call me BAME’

Varsity Opinion ‘BAME is outdated and doesn’t represent experiences’







You can find us in Apple Podcasts or Spotify The Show is also available from BuzzSprout

If you have any comments, feedback or suggestions, please email us at [email protected]  

We hope you enjoy it.






Show Notes Transcript Chapter Markers

No messing, this month our show dives headfirst into seeing whether Simon’s stresses have lifted. As a result, we drift into how Phil is and why he hasn’t been out for a while. As if that weren’t enough, Simon expresses his very biased concerns about a drug under trial called Vosoritide. Why? In essence, it will make some people with dwarfism taller. Incidentally, in case you didn't know October was Dwarfism awareness month. 

Phil raises questions about the new pop up cycle lanes and pedestrian-only areas. In many respects, this is a positive but have differently disabled people’s needs been taken into consideration? What might be the impact, indeed, does anyone carry out the legal duty of Impact Assessments? Simon decides Whitstable high street could be remodelled, he is, after all, an out of towner who visited for a couple of days

Language - Is BAME (Black, Asian and minority Ethnic people) done? What’s the new phrasing? Is it best practice to use the phrase ‘Best Practice’? When was it last updated? Do the criteria need updating every few years so it becomes aspirational and not a reflection of what already happens today?

There are your emails in Listeners Corner. You can be in this section next time, just email us at [email protected] 

Links: -

Guardian article on Vosoritide 

Little People UK and Royal College of Midwives 

Wikipedia on Best Practice 

UK Music Industry ‘Drop BAME’ 

Civil Service blog ‘Don’t call me BAME’

Varsity Opinion ‘BAME is outdated and doesn’t represent experiences’







You can find us in Apple Podcasts or Spotify The Show is also available from BuzzSprout

If you have any comments, feedback or suggestions, please email us at [email protected]  

We hope you enjoy it.






Announcer  0:00  
This is the Way We Roll with Simon Minty and Phil Friend.

Simon Minty  0:12  
Hello and welcome to the Way We Roll with me Simon Minty 

Phil Friend  0:16  
And me Phil Friend. 

Simon Minty  0:18  
This is the one to one show where Phil and I started chatting about all things disability and not disability depending on what has taken our fancy. At the end of the last show, I talked about a theory, wait a month, if you're a bit stressed just kick it down the road for a month. And in that time, things will look a lot better.

Phil Friend  0:38  
You did. And

Simon Minty  0:41  
Nah!, It's still quite stressful. It was about me moving house wasn't it

Phil Friend  0:47  
Go on tell us what you've done about that.

Simon Minty  0:50  
Well, the one that was stressing me out I'm not buying now. I've replaced it with another one. It's stressing me out. So I suppose the whole bigger picture is that moving house is stressful. We all know that. I still believe in the theory just hang on, because it will get better. All I've done is replaced one stressy bit with a new one.

Phil Friend  1:10  
Yeah. And what the listener doesn't know is that you varied the stress. So before the stress was about whether you could afford it and whether it had all the facilities, the new stress is about whether it's too far away. 

Simon Minty  1:22  
Yes. Yes. keep it fresh.

Phil Friend  1:26  
And when are you seeing your counsellor?

Simon Minty  1:30  
I see actually stopped me She said I don't need to help you anymore. I have professional pride. And I was just going along and entertaining her with jokes about my life every six weeks and she said can we stop. And I said alright then.

Phil Friend  1:45  
Did she say I can do no more for you? You are a lost cause did she say that?

Simon Minty  1:50  
No, the reverse he said I can do no more for you because you're okay you know you're muddling through life. All right. But she was brilliant. And she is brilliant and I love her to bits. And she said the door is always open so you know we have the relationship built up. If I hit a tricky patch, I can go back and see.

Phil Friend  2:08  
So I think she should stand by in terms of accommodation issues..

Simon Minty  2:14  
Are you stressed?

Phil Friend  2:15  
No, I'm fine. Actually. No, I am okay. This new the new Coronavirus escalation should we call it that? is I mean that is worrying. Those of us who've been kind of trying to keep out of harm's way for a long time. Now see perhaps this in you know, endlessly lying ahead of us. I don't know. I'm just I'm wishing I wasn't so blooming wimpish about it all? If that's the right term

Simon Minty  2:45  
For context, we're recording this probably a few weeks before it comes out. So at this point, we're still at a stage of this rule of six, the North is locked down in certain places. And we're thinking it could creep on to us there is some uncertainty isn't there?

Phil Friend  3:02  
There is and my son lives in Liverpool, and they've just been told that they're now on the same regime. So London at the moment, which is broadly where you and I are isn't so affected. But I think it's this kind of worry that the number of cases is going up, the number of hospitalizations is going up, the number of deaths is going up. And for those of us who have to be a bit more careful, that just sort of means that maybe our restrictions are going to get worse.

Simon Minty  3:30  
But you're suggesting that you're being wimpish, which I don't think you necessarily are but here's the question, Is it because you think there is a genuine risk if you expose yourself to someone you know, and he's been hanging out with loads of other people?  Or do you think there's a bit of you kind of got into a process where you're thinking, I'm just staying in until it's all okay?

Phil Friend  3:49  
You know, I think it's probably a bit of both Simon is probably a bit of both, I'm trying to avoid people that were I don't mean that this is nasty about them, that that lead very active lives and are out meeting lots of people through their work or so on. So I'm trying to avoid them. But in my family, my family members of meeting people and so on, and I'm not trying to avoid them, but I noticed that when they call around, I kind of stay one end of the kitchen and they're at the other end because you know, they're being careful. It's just so limiting you know when you know something's going to end and you can kind of manage it when it seems to just go on and on and on which this is. I don't know. I don't want to exaggerate it. I'm not feeling particularly anxious about it all but it's, it's in the back of your head whenever there's a social event that you might want to do something about, like go out for a bite to eat or something.

Simon Minty  4:45  
And my theory doesn't hold up for this one though. You know, give it a month and it will get better because we know is going to be six months fine.

Phil Friend  4:51  
Yeah. Yeah. Well, we will see it's the same for all of us isn't in a sense?

Simon Minty  4:57  
Well, yes and no, but that is your point. There, are certain categories of people that may be more susceptible and you have to be a bit more careful. And I do know I'm going out a little bit more for my dinners or meeting with a few people even went to Whitstable since the last show, we did the rule of six and everything but and I'm really in a tussle, I want to go away a lot, because I'm exhausted by this restriction. But at the same time, I don't want to be stupid.

Phil Friend  5:21  
No, and you did mention to me that your dad randomly had been sent a test and he proved negative, which is great. Because he's sort of not dissimilar age to me and so on. So that's, that's, that's good. No, I don't know what it is. It's just um, for me, I, you know, I've got Sue and you live alone. So the need for me to go out as much, maybe less than it is for you, but a bit, you're a lot younger than you. And do you have a lifestyle, as long as I've known you, you've got a wide circle of friends, you enjoy their company you go out on an awful lot or you used to. So to stop all of that for you is massive. For me. I went out for family meals occasionally, when occasionally out with a friend for something you and I would hang out at the occasional gathering together. That's all stopped. But it's not the same thing as it would be for you. And I'm guessing people of 20 who are really trying to socialize and network and do all that stuff, it must be even worse for them. So yeah, there's no answer to this really

Simon Minty  6:29  
No, and I've realized we could carry on, I'm gonna move on to some big meaty topics. 

Phil Friend  6:34  
Yes, come on, let's get our teeth into something. 

Simon Minty  6:38  
This subject last month, we talked about the eradication of polio in I think it's five, six countries of the world now, and talked a little bit about your reflection of it. And I alluded in the second half about the drug that has come out which the name is vosoritide. And it affects people with achondroplasia, which is a specific form of dwarfism The most common form. And because the gene prevents the bones growing, if you haven't achondroplasia this gene is meant to sort of sorry, this medicine or this drug is meant to open up that so the gene has less of a restrictive impact. So, someone, I suppose what of a better word is going to end up in the middle where they're not going to be average size, but they're not going to have dwarfism the shortness either. Big article in The Guardian, there was one in the New York Times this is kicking around a lot. I shared it with a few friends, one of them who is short, they are all short sorry, wrote back and said I gave up reading because it's the same old sh i t, which I do kind of get that there's a there's part of which we just like tired of reading this stuff. I mentioned last time, big pharmaceutical promoting the drug as solutions for side effects of dwarfism. So all the pain and the joints and the cancers and breathing all of that stuff. But I don't know if it is and if you read this article, I'd love someone else who's not as biased as me because it's very hard for me to be purely independent. But there was a doctor in it and there was a mother in it. And I found them disingenuous I found them patronizing. They would say a sentence and be hypocritical in the same sentence. I will let you speak in a moment, Mr. Friend, just an example. The mum reduced the issue of having dwarfism, she has a son who's been born with it. And she said, I don't know, you know what it's like to walk in a person with dwarfisms shoes. I haven't been abused. I haven't been put up for adoption as a child. I haven't been ridiculed through history. That was her summation of someone with dwarfism. And I thought, well, if that's, I can see why you'd be terrified. How much is this a parent not wanting a child with dwarfism? Or how much is about the child having better life opportunities? And my last and I'll pause, the doctor said, Well, I know there's a thing dwarf pride and defending the rights of people with short stature to be viewed in society just like everyone else is admirable. And that said to me, and like what do we get a badge? It's not it's not admirable. It's way more important than that. Well, it's dwarfism Awareness Month. Wow. Yeah. All month short people a long time.

Phil Friend  9:22  
Well, I think it's admirable that you have a month

Simon Minty  9:27  
Touche

Phil Friend  9:30  
This is a serious issue, isn't it? And what you've done is trigger some memories for me of the conversations that I recall around Down syndrome where doctors were advising mothers to be that this child would be born with a condition and therefore it was grounds for termination and therefore dedum dedum dedum and they'd give them the story now, the story generally that we heard was that this was no life that this was going to be awful. There were all sorts of side effects to Downs, and so on and so forth. And as a result, if memory serves, I think eight out of 10, women told they were having a child with Downs were likely to terminate the pregnancy. So now what was wrong with this, in my view, was that at no point, were these mothers to be as far as I'm aware, encouraged to go and visit mothers who'd had babies with Down syndrome and I suspect the same is true for people with achondroplasia you that the medics, understandably, are going through this list of things that you wouldn't want a child to have but what they're not doing is saying, go off and see people that have got it and get their story. And then if you want to terminate the pregnancy, well, let's talk about it. So that's what you did with me when you said that I went Boing because the only cure for Down's is not to be born,

Simon Minty  11:03  
You remind me of a couple of bits, I was thinking, in the olden days, you have a child that has dwarfism, it was a surprise, you didn't know, there is some sort of discomfort or nervousness, whatever it might be, the enlightened parents would then go to a meeting of restricted growth, Little People UK, Dwarf Sports, whatever it might be, they get to hang out with a few other short people. And within a day or two, they go, Okay, my child's gonna be fine, they're going to have a life, they're gonna enjoy it. There are lots of social as lots of people are very happy functioning, getting on with it.  I'm worried now parents are speaking to parents and not getting enough of the short people involved. One great bit of news I just got this morning, Little People UK, LPUK, which is one of the associations since February has been working with midwives, to talk to them about babies who might have dwarfism. And that's critical, because if you're a mum, and you get some scary bit of news, whereas if you've been pre-warned, the midwife is knowledgeable and gives some good examples that changes.

Phil Friend  12:05  
You know, when people are told when they give birth to a new child the two questions that come up are, you know, what is it boy-girl? And the second question is, Is it okay? And usually, they're to where we got some tests to do, but everything seems fine, you know. There is this, I suppose human beings are programmed to procreate and for that procreation to survive, that's what it's about. And to have a child that isn't in quotes, "non-disabled", or "able-bodied", or whatever, puts it at risk. Well, when we hunted game and stuff, that might be true, but we hunt in Tescos, don't we? So some of that old messaging needs to be readdressed. But what you're pointing up, and I think this has been the role of the social model, and also disabled people in the last 20 to 30 years, is to say, okay, and I was saying it about polio, polio in itself is not great. But people who've had it, do lead very satisfying in my case, lead very satisfying lives, why wouldn't a small person do exactly the same thing?

Simon Minty  13:20  
The article, listener do read it. And as I said, you know, I'm biased, I can't help but be so. But I look at it. And there's a couple of bits one is, if you're short person, you might have to spend a little bit of time working out your identity, hanging out with others, whatever it might be. I think the people who take this, the children that take this are going to be in neither nor land of sort of, I don't know, five foot. So they're neither average size, nor are they short. And now that could be a really difficult identity, because where is that going to be? And the bit is driving me to distraction, you may have to put a beep in here in a minute. They're making out that this is about getting rid of all the medical complications, but you read it, and everything says they're going to be taller and they can reach a cup. That's what it is. It's about getting something out of a cupboard. That's what they think he's going to be the big thing, getting the rice from Tescos from the top shelf. That's not the big thing. That's not the important thing. yet that is what they're banging on about. It's It's remarkable.

Phil Friend  14:24  
It's very difficult to understand where you're coming from when you're six foot and a doctor, isn't it because their whole mission is about relieving suffering and those kinds of very honourable things. But it's incredibly difficult for anybody including me to put myself in your shoes and see that as incredibly positive. I mean, I do see that about you because I've known you for so long and I've met lots of disabled people whose lives have incredible But I, you know, I used to say this that doctors, if you said to a doctor, look, I'm fine as I am, just leave me alone. Next, the next thing they do is refer you to the psychiatrist two doors down and they say, Come on, you can't, there must be something wrong with you, you don't see the problem well actually, as you and I both know, there's a solution to reaching the cup and it isn't a drug. It's rearranging your kitchen. That's how you do it, or you employ somebody to get the cup for you or something.

Simon Minty  15:26  
Or don't put it up there in the first place. I mean, my parents, my parents said, know me all this time, they come around help a bit with drying up and they start putting caps on the top shelf. I'm like, why are you doing? 

Phil Friend  15:36  
I think you need to deal with your parents, because in one show recently, you also said they came around to help you pack and they drank all your wine.

Simon Minty  15:42  
That's it there's a real issue with my parents, I'm calling up my counsellor because I've not done the whole parent thing sufficiently have I?. I get your bit, six-foot doctor, whatever the bit that was missing is, well then have a chat with a few people who are affected. That's what we always say. Yeah, absolutely. And we know this people dwarfism who are not happy. But that's true. But part of that will be fixable in the sense is not just their height, it is the stuff that is going on outside, 

Phil Friend  16:09  
But are they not happy? Because of the treatment, they're receiving by society at large? Or are they not happy because they're genuinely going through a very difficult personal process that they haven't quite worked out. I mean, they're different things. But it strikes me that if we valued difference in the way that we should, for many, many disabled people, including, of course, including specifically those who are small, it's no longer an issue. You know, you're treated respectfully, regardless.

Simon Minty  16:39  
And the mum who is saying all I know is negative, negative, negative. And we've had Ellie Simmons the swimmer Paralympian on the show recently, there's Peter Dinklage, who is in Game of Thrones, there is Lisa Hammond who was on EastEnders for five years, we've now got visible, there's more than that, by the way, there are lots of other good people out there. But we now what visible actors, performers, athletes, that your frame of reference is different in 30 years ago, they might have said circus dwarf and woo, woo, woo and that's terrifying if you're a parent, but that isn't the first thing you think of them? 

Phil Friend  17:14  
No, no and we don't know, you may know more of them than I do, certainly. But there will be lots and lots of small people who are not in the limelight, but who are leading very, very good, happy fulfilled lives being parents or holding down various jobs or you know, whatever it is, we're not seeing their stories, because and certainly, the doctors are not referring prospective mums to be or whatever to see them. That's what's missing. I think what's missing is your story. It's not being told,

Simon Minty  17:47  
Oh, bloody hell,  people are fed up with my story

Phil Friend  17:49  
No, I wasn't meaning you specifically I was meaning small people, it's not all about you.

Simon Minty  17:54  
There's Minty banging on about it again. Oh Yes, it's all great fun! It's opened more doors than it's closed!

Phil Friend  18:02  
I think it's serious, I do remember your story of years and years ago when you went into the Wellcome Foundation. And there was the library with all the medical books. Yeah. And you famously pointed out to somebody that you were in one of them, or at least your condition was that you're in a bookshelf and that the purpose of this organization was to eliminate you. That went down quite well I seem to recall. But I mean, that voice where is achondroplasia in medical training?

Simon Minty  18:40  
I gonna have to leave that hanging because I don't know, I remember the name of that book and I think it was called a Good Mornings work or a mornings work. And this old 1920s and there were lots of diagrams is one of them on my list. I was studying them and I wanted to get that book, I will qualify the Wellcome Foundation. Of course, there is that whole side of it. But they are awesome on disability arts and the lived experience of disability. They straddle a really interesting role, the things that they fund go way beyond the medicine.

Phil Friend  19:13  
Yeh I think it's coincidental that their library or the research work they've done over many, many years, is kind of, you know, that doesn't make it worse it's a bit like Black Lives Matter and dealing with statues of slavery you're kind of in a sense, you get these things were thought and written about back in the 1920s doesn't mean the Wellcome Foundation now buy into the same things. But yeah, interesting interest.

Simon Minty  19:41  
In the meantime, is a bit like what I did with media, rather than me trying to fight pharma, which I think is impossible, or difficult. I'd rather work on the positive stuff. So people go Why would I take that drug? I've seen Ellie I've seen Peter. I've seen Joe Schmo who's just getting into life my child doesn't need that drug.

Phil Friend  20:02  
You could become, or someone like you could become the kind of Sally Phillips, you know, the comedian and actress. And so you had a Down syndrome child who's really put it on the map. I mean, she's made programmes and been very active as a mum and it's brought a lot of attention and maybe changed things. Hopefully, it's changed things.

Simon Minty  20:24  
I like the cut of her jib, as they say. And I've seen a few tweets where people launch back into her but she doesn't. She's strong.

Phil Friend  20:32  
Yeah, I agree. I watched the documentary. Very powerful, where she went to Iceland and pointed out there was only one woman in Iceland that had Down syndrome because all the rest had been, there were no new births. It was it was horrible.

Simon Minty  20:48  
Well there's cultural differences and country differences, and I'm sure there are a few Scandinavians, we love Scandinavian countries, but they have a very different attitude to some of this as well. But you know, generalizing with me, but I'm not a parent, we've got to find another mother who has a child who has dwarfism that says, I don't mind and there's plenty of them just come to the Dwarf Sports Association. Their biggest worry is not their height, their biggest worries about whether they're happy, or are they, you know, going to have a partner or studying or whatever, that's the normal issues. And that's what you should be worried about.

Phil Friend  21:20  
And do you know, as a parent, none of my children is disabled, but those are all the things I worried about? Are they happy? Will they get a good job? 

Simon Minty  21:26  
Yeah, exactly. Well, yeah, and all months, you know, look out for it Dwarfism. Awareness that's what we're all about. Yes, actually, this is coming at the end of the month. What a great month that was for Dwarfism, awareness.

Announcer  21:42  
This is the Way We Roll presented by Simon Minty and Phil Friend, you can email us at [email protected]

Phil Friend  21:51  
Well, Simon, um, one of the things that are coming to my attention is the benefits in some ways of COVID-19 in the fact that we are now seeing far less traffic in our cities, and the emergence of bicycles, pedestrians, and so on and as a result of that, we're seeing more pedestrianisation. We're seeing pop upcycle lanes soon to be made permanent in lots of ways. We're seeing streets that are being repurposed where traffic can't go through them. All in all, a jolly good thing one might think until you hear blind people talking about hazards of negotiating what used to be pavements and aren't any more wheelchair users not being able to get out of taxis because the ramp won't reach the curb because the curbs are no longer reachable by a taxi, because there's a cycle line between it and the curb. bollards everywhere narrow restrictions. In fact, for the 500,000 or so wheelchair users that might be poddling about in this country. It's a joke. That's what I'm hearing. And I just thought, isn't it interesting? On the one hand, we applaud the cleaner air and, and the exercise that people are obviously using through bikes and walking and stuff. But on you've got the downsides. Have you come across this is this something that is gone across your desk?

Simon Minty  23:29  
You remind me of a long time ago, the BBC, I think they changed it was around White City. And they made it all pedestrian and there were some of their blind members of staff saying you put a whole load of street furniture in the way and we don't know what's going on now. All our markers, like curbs and so on have gone and it was very difficult to negotiate. And I'm spinning and I'll come back when I go abroad. I'm thinking of Berlin, maybe a couple of other countries where they have got quite a good bicycle, a network. I often jump in there on my scooter. Because my theory is it's better than the pavement for lots of us. It's going to be flat. And I've got wheels. Yeah, not, the 12 cyclists who can't get past me because I'm doing four miles hour they're not always as thrilled. Are we allowed as wheeled people, people who use wheels? Are we allowed to use the bicycle lanes? 

Phil Friend  24:26  
Why do you keep asking questions I don't know the answer to I have no idea. I would like you though I'm in a power chair and mine, of course, is as you know, an Olympic power chair so mine does eight miles an hour. Not the four that your scooter does these amateur vehicles us permanent power chair users, but being serious. I don't I mean, I'm allowed on the road in it because it's got lights it's a class three vehicle. So I'm guessing I could go in the cycle lane but like you, I'd hold up the bikes.

Simon Minty  25:01  
If we go back, so blind people, they're lacking what markers and points of definition that they used to know.

Phil Friend  25:09  
Yeah, there's that. But there's also the new obstacles because there are barriers that distinguish where the cycle lane is, and the traffic can be and stuff. And some of these are just temporary. So you've got these big plastic, red and white barrier type things that link together. So for blind people, they're a hazard, I think, for power chairs and to be fair to you and your scooter, we're in a slightly different league to the manual wheelchair user who's got to push and that is very difficult through some of these terrains.

Simon Minty  25:38  
Now, I'm, like other wheelchair users getting out of taxis, when I get out of the car, I'm desperate for the curb, because otherwise, there's a big drop down for me and my legs are shorter. So I do like a curb. I suppose what I'm saying is we've adapted and adjusted to the environment as is, obviously what drop curbs so we can cross the road. But when we get out, we want the regular curb. Is this the way it's going to be? So we're going to have to adapt and what I suggest by that is either the ramps have got to be longer than come out of taxis, or I'm thinking of San Francisco. And I think it's the Muni which is like a tram. And if you're a walkie talkie, you stand and then you step onto the tram. But on the same stop is a raised platform. So the wheelchair user goes up into the raised platform and then goes level access onto the tram. So will we have wheelchair disembarking points?

Phil Friend  26:35  
I mean, to be fair, I think you're making a very interesting point. This is very new, this has been done very quickly, these things have come into being in weeks. So clearly, there will be mistakes and things that aren't working. But as particularly I don't know about other big cities, but London is beginning to make some of this more permanent, they're not going to go back, they're going to leave things so they will put in more permanent arrangements, one of which could be Yes, exactly. disembarkation points for taxis or buses because the bus is the same, isn't it, you've got a ramp comes off a bus and if the curb isn't there, you've got a problem because it's very steep.

Simon Minty  27:16  
And our friends the blindies?

Phil Friend  27:21  
For those of our listeners who don't understand this, what blind people often are doing is they're using the shops, as a, let's call it one coast, and the curb edge as another coast. And using their long canes and so on, they can negotiate where they are in relation to that if you remove the curb, they have no way of knowing where they are in relation to the right side or left side depends on which you're going. So they rely really heavily on things like that. And obviously tactile pavement surfaces of one sort or another to help them navigate. If all that gets kind of swept away, they're going to feel and then the additional hazard of not knowing where the bollards or the markers are that they're supposed to keep the traffic apart.

Simon Minty  28:08  
And maybe a back to the speed again. And when we do things quickly things go wrong. I thought legislation says public bodies impact assessments. If you're changing something, you've got to say, well, this will impact this person with a disability greater than others. Therefore, is there another way around or a different way of doing it? Perhaps we just need to look at impact assessments a bit more. Because there's nothing wrong with changing and I genuinely like the idea of pedestrianisation, I don't have a big issue with it. So long as disabled people with our badges could still drive down it. But we do need some disabled people to input so it's all of our measures that we've adapted to are not stripped away, and then it becomes impossible. 

Phil Friend  28:51  
But one of the worries about that, of course, is I've got two worries. One is I love your optimism around the public sector duty and impact assessments which as far as I recall, went out the day it came in kind of thing. Tell me when you last saw an Impact Assessment Report involving disabled people. 

Simon Minty  29:11  
I do know, two people who have mentioned them recently and one works at a university and one with a public body and they said they're really hard things to do.

Phil Friend  29:22  
Second, the Mayor of London did not include disabled people on the panel that was being used to look at various issues to do with well, Londoners in general transport and things like that. Been a brouhaha about that. Yeah, I'm not sure I have to be careful here because I don't know all the details about that. It's just a headline that says disabled people are angry that they have not been involved in the sort of panels that have been set up. So yeah, I mean, if we're involved it was but here we go again, "nothing about us without us" if we're in the room we can offer our views and opinions about these things if we're not in the room we can't.

Simon Minty  30:03  
I was in Whitstable a few weeks ago and if you ever been to Whitstable listener, they have very narrow roads. Usually, cars parked either side so you can just about squeeze your third car down, parking is at a premium. And then the high street is very narrow and cars whizz up and down it and it is screaming out for pedestrianisation it. I mean, okay, here's Londoner who was there for three days quite happy to redesign the whole city. That's not on, I appreciate that. But there was something I just thought if there was this was pedestrianized, it would be a much more pleasurable experience for everybody. Plus, I was there during COVID. So you're on tiny little narrow pavements and there are streams of people coming at you and we're all trying to avoid each other, but we can't because cars are whizzing down. Mm-hmm.

Phil Friend  30:53  
No, one of the things about Exhibition R§oad where all the museums and galleries are in London in Kensington was the fact that there were so many tourists and I don't mean necessarily foreign tourists. There was so many they wouldn't fit on the pavements. So they fell into the road. So they pedestrianized everything to try and avoid that. And of course, the biggest campaigners were those with guide dogs and others about how that meant they could no longer negotiate. It seems there's always a pro and a con isn't there, whatever, whatever happens. Whitstable, I must go obviously, and check out the pavement,

Simon Minty  31:32  
A new subject, I was at a board meeting as a trustee, and a couple of things popped up. I've mentioned this to you, but we haven't discussed in full and there was a good thing and a bad thing. They were talking about the progression of a language, different terms. And I'm intrigued because I'm not a big fan of language. I know people do think it is absolutely critical. And I get that I always feel there are bigger things. Nevertheless, one person said they'd been at a conference and someone had said BAME, which stands for black and minority ethnic people. And someone who was from that group of people stood up and said that I don't like that terminology anymore. It's not appropriate. And someone said, okay, we do want to get it right, what what's better in the person? I don't know yet. Or I'm working on that or something. And we know we're paraphrasing its thirdhand. I was intrigued by that. The other one, which I thought was more tangible. Another conference, somebody said best practice, you know, when we think about best practice, and another panellists, you know, I'm just very vague, isn't it? It said, Why do we keep saying best practice when actually what we mean is normal practice. Best Practice 20 years ago was trying to put these things in, but we should be doing these as a matter of course, now, this isn't best practice. I continue this conversation with our colleague Susan Scott-Parker, who the brightness that she is said, it's not the words, it's how you're measuring best practice and she said, I believe the best practice should be reviewed every three to five years, and newness, or the criteria changes. So you still always have best practice, but it will always be a year or two ahead is what you're aiming for. So we keep progressing. Oh, so yeah, what do you think?

Phil Friend  33:29  
Well, I totally get the best practice one. And I think I'm with Susan, I think the four-minute mile, no longer applies is now the three minutes 40 whatever mile. So the best practice would be if you're under four minutes or so what so is everybody else? So there's that and I get that. And I think Susan's intervention in that is really interesting. And I can see what she meaning and I agree with her. I think we have to keep resetting the bar. 

Simon Minty  33:59  
And interestingly, that isn't about the language. It's about the criteria. And that's more interesting.

Phil Friend  34:04  
Yes. So best practice back in 53 was running for minutes on one second. After 1953 sorry, listener, that's when Roger Bannister broke the world record and stuff. dear old Roger Bannister, I'm old enough to remember these things. 

Simon Minty  34:20  
Was he in a cycle lane then? 

Phil Friend  34:21  
No, he bloody wasn't! So, one week later, best practice in quotes or the criteria was three minutes. 59. So someone with that now this BAME thing? I just I'm not so clear that I'm happy with that, because I don't know if you recall this. Several years ago now. I suddenly was told that it was not alright to say brainstorming. Do you recall this you are not allowed to say brainstorming? It's offensive to people with epilepsy.

So what I did was I rang The British Epileptic Society or whatever it was called back then. And I said look, I've come across this in and I'm interested, I'm about your language. I don't want to get this wrong. What's this? She said, it's absolute rubbish we have never pronounced and to use the famous 2020 idiom, it's fake news it is not true. Now, one individual who says, I'm not happy with this, I would do what I think the person in the room does well, okay, so what would you prefer? I, what term would you prefer to use with you? Oh, ah, whoa, because I recognize that there are some women, for example, you take exception to certain words, that doesn't mean that all of them do. So I have to be, you know, got to try and figure my way through this. But one person does not define what the rest of us all say. I mean, physically handicapped cripple, pardon the word, but that was the term used in the 1950s and 60s to describe people like me and you, we no longer use those terms. They're seen in some ways to be very offensive. And there are words about small people, which you know, a lot more about than I do. But it wasn't one person standing up saying that, although it might have been one person at a meeting of the British Dwarfs Association or something saying, we should stop using this word and start looking for alternatives. And then as a group, they said, Well, what would be better? Well, dwarf would be better. All right, that's what we'll use them. 

Simon Minty  36:30  
Which, as it stood, there are two gaps, which is an individual saying, I'm not sure about this, I'm not sure like it, what we didn't have was a group of people saying, This isn't so cool now and this is something that's more appropriate or more respectful, or whatever it may be. I can reuse my old joke when we wrote the sitcom, there's a character who's short who's speaking to his dad and his dad, unreconstructed, very old fashioned. And his dad says to his son, but don't forget, you're physically handicapped, and son says, Dad, I'm now disabled and Dad says Oh has it got worse. Which is a good little gag at the time. We've meandered not, like us, maybe the world is a little bit more sophisticated and we might be looking at, we need two or three terms for describing certain people. And I am up for respectful and keeping up to date. And like best practice, we've already worked out as a really smart move forward. So we're up for moving forward always. Just Yeah, I need clarity and a bit of what I call sense to it as well.

Phil Friend  37:35  
You said it for me, which is that you know, in some ways BAME, for example, is not about us. So we go with whatever the group is saying we should for the moment, but if things are changing and evolving, it would be nice to know what that means. Now, you know, whether it's clunky or not, it's not my problem. It's, that's what they're saying. But yeah, I've not heard it. Interesting. I have not heard any alternatives being talked about.

Simon Minty  38:01  
No. But maybe this year, we've already talked about Black Lives Matters, this is a big issue this year as it should be. And maybe we're gonna get a bit more sophisticated and smarter

Phil Friend  38:12  
We we'll obviously keep our ears to the ground or our eyes to the road or whatever.

Simon Minty  38:17  
Can't say that anymore. That's offensive to roads. 

Phil Friend  38:21  
Yeah. thought it was alright I'll stay on the pavement. And that's offensive to blind people. Um,

Simon Minty  38:26  
Oh! You've just dropped it through the floor now.

Announcer  38:35  
This is The Way We roll hosted by Simon Minty and Phil Friend

Simon Minty  38:39  
It is listeners corner, the bit that you all skip to because it's so brilliant. And now we give our email address, I know more of you are getting in touch and we love it. We appreciate it. So thank you. Now Lara Green referred to pride and disability pride and saying it can be dented. If you become the summation of your impairment, that's all the people see or recognize. And she said you learn about your real self when you hang out with others with the same condition. She said that she bought into this sort of cliche that she was blind and therefore good at maths, which is what she kept getting being told as they're related. And then she met lots of people who were blind and realized, no, that's not the case. You know, there's all varieties of knowledge. So thank you, Lara, I get that and there are the things that you think are unique to you and you meet others and you go Okay, on the same.

Phil Friend  39:28  
She wrote a long thing too. Didn't you put a lot of effort into that? So that makes it doubly lovely. Oh, another I don't want to say on the other letter because that doesn't sound right. And the other our dear old colleague, Dave Rees, who's a frequent contributor and correspondent wrote actually did write a very, very nice note to us about our programme in which we talked to Geoff Adams Spink. It obviously, Dave felt the bit that was really interesting around that was the relationship between Geoff, his impairment and his mum and that kind of thing. And I think Simon and I agree that was a very, very powerful moment in the conversation we have with Geoff. And we're really grateful to Geoff that actually, he felt perfectly okay about sharing some of that more private things with us. So that was good. So and thank you, Dave, for that. That was very, very nice of you.

Simon Minty  40:28  
Absolutely. Dave's got his own spot, isn't he? Cuz he writes a lot, although I did notice he's writing to the old address, which I'm not collecting to anyone who's getting it. What was your email address? Now?

Phil Friend  40:37  
Our email address now is [email protected]

Simon Minty  40:43  
That's the one um

Phil Friend  40:44  
You do that just to test me every time Simon Mintys, his little gag.

Simon Minty  40:50  
It wasn't because I genuinely had forgotten. So you saved us. I agree with Dave, and I agree with you and what it has alluded to, there are two things one, do listen to that Geoff Adams Spink show because there's some big stuff in there. The other bit is we're wondering and debating. We talked a little bit about Phil's childhood earlier on in another show. There's a video we put about the cure to polio, and so on is a 12-minute video on YouTube, if you're interested. I wonder whether we do a little bit of history. I mean, some people go that's all we ever talk about is the past you two but I would like to hear about your childhood. And it is remarkable in certain aspects. And you know, maybe I'll even talk about mine, there could be a little theme there.

Phil Friend  41:38  
Well, you touched a bit on that today, when you talked about this drug that might become available and the way in which small people are being treated, viewed and all that kind of stuff, and is in some ways, our stories are different, but there are links. Yeah, well, why doesn't the listener, drop us a note or tell us what they think? Can  I'm certainly happy to talk about my early life

Simon Minty  42:00  
And particularly that relationship with your parents. Yeah, that's there's something going on with that disabled child and parent and you know, how they have to do the best they possibly can under yeah, sometimes difficult circumstance.

Phil Friend  42:13  
Yes. And you know, what's lovely about me and you is that I go back a long way to things were very different postwar childhood 

Simon Minty  42:22  
Which war? 

Phil Friend  42:23  
Post-war childhood thank you. And of course, you young whippersnapper. But yeah, why don't I'm happy to look at that.

Simon Minty  42:33  
 And I'm technically not a whippersnapper. You know, when you have to put in the, you fill in the dates of your date of birth on an online form or something. Sometimes you spin the scroll it for the year. And it used to be a really quick scroll. And now I have to press it three times to get spinning and spinning. Until I get to my 60s,

Phil Friend  42:55  
I've decided that I'm not going to die until I can't go further back than my year of birth on that device. 200 years

Simon Minty  43:07  
Yeah, what is the etiquette where do they stop about a hundred and fifty years or something? 

Phil Friend  43:11  
I don't know. And have I insulted you by calling whippersnappers that another set of words that we're not allowed to use about people's age? Well, the origin of whippersnapper! came about from

Louis the 14th 

Simon Minty  43:25  
He used to take his trousers and he'd throw them in the air and snap a whip and everyone would go on Louis!

Phil Friend  43:32  
He'd whip out his snapper, and off we went.

Simon Minty  43:37  
Do you know what we peaked? This month, we had Ellie Simmons if you've not listened to it. I stayed on the right side of being too gushy. I hope that we both enjoyed speaking to her and dwarfism awareness month. Look at that.

Phil Friend  43:55  
Yeah, it's been good. Are we done? I think we are.

Simon Minty  44:00  
Okay. nice. Nice to speak to you. We'll be back very soon. A couple of weeks. 

Phil Friend  44:05  
We will indeed take care Simon.

Simon Minty  44:07  
Cheers. Oh,

Announcer  44:08  
This is the Way We Roll presented by Simon Minty and Phil Friend. You can email us at [email protected] or just search for minty and friend on social media. We're on Facebook, Twitter, and LinkedIn.


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