If you use the word ‘disabled’ with something you’re promoting, do people switch off? If you create a product to assist a disabled person but ignore this, are you authentic? Are products created for disabled people only used by disabled people…except the telephone, electric can openers, electric windows, pre-cut fruit, voice dictation, automatic doors…but other than these…?
Does the word ‘disability’ point to a history, to culture, to shared experience?
Is using the word ‘disabled’ appropriate when talking about someone who has a long term or chronic health condition? Where do ‘Energy Limiting Impairments’ fit? Does the social model struggle to get going when an individual struggles to get going?
All these questions provide a rich source for Phil and Simon to discuss and debate. The questions come from new research into energy limiting impairments and Nike promoting their new Go Fly Ease trainer. We have a contribution from Lawrence Carter-Long, Director of Communications at DREDF (In California) and #SayTheWord evangelist. We wrap with your letters and emails.
We don’t profess to have all the answers, and we know there are gaps. Let us know your thoughts [email protected]
People we mention
Catherine Hale Twitter
Chronic Illness Inclusion Twitter
Katie Elizabeth Twitter
Lawrence Carter Long Twitter
Welcome to The Way We Roll with Simon Minty and Phil Friend.
Simon Minty 0:15
Hello and Welcome to the Way We Roll with me Simon Minty
Phil Friend 0:18
and me Phil Friend.
Simon Minty 0:19
I nearly forgot the name of the show. We must have
Phil Friend 0:23
been a while.
Simon Minty 0:23
Did you hear that pause? Are you well?
Phil Friend 0:25
I'm very well indeed. I just spent a very nice day yesterday with my wife in Anglesey Abbey having tea in the park. It was absolutely lovely.
Simon Minty 0:35
Pictures of silver birch trees on your Instagram feed.
Phil Friend 0:38
Indeed spectacular. Every garden should have silver birch trees. No, it was nice to be out. Actually, that was the main thing. I think I tweeted today that I've worn outdoor shoes three times in a week. That's pandemic's over as far as I'm concerned, it's gone. finished. I've got my shoes back on.
Simon Minty 0:54
Regular listeners will know Phil did stay in a lot. So that's great news. I'm pleased you're going back out. We all met for a meal last Sunday didnt we
Phil Friend 1:02
We did indeed it was lovely, actually bit nippy, but not not so bad that we couldn't have a very good time. No, it was good.
Simon Minty 1:10
And we have a couple of I think fairly heavyweight subjects you feel they might not be. But it's you to kick off the you want to talk about energy limiting impairments. Call to Action, some recent recent research.
Phil Friend 1:24
Yeah, this is not for those who follow us regularly. This is not a new subject. You've raised it several times, actually. And I think the real story behind this is the fact that people with conditions which fluctuate and are more visible, and are illnesses rather than disabilities feel a that the social model doesn't do it for them. It doesn't, it doesn't deal with some of the issues they deal with. And COVID has, in some ways, given people with these conditions are real. They can demonstrate that they can play a very useful role in employment and all the other things because they can engineer their hours to suit their conditions, and so on and so forth. And the other thing that intrigued me, and this may be showing my ignorance, I've got plenty of that. Is the term energy limiting illness? I, you know, we Simon you and I talked about fluctuating conditions and things like that. I like this term. I mean, I don't like the fact people have got energy limiting conditions. But I like the term, it kind of says it for me. So recently, some research has been done by people with these conditions, stating, you know, that they they want to be more included, the social model isn't right for them, they want more done around that. And I guess the biggest area has been the fact that COVID has demonstrated and this has done it for lots of disabled, so that they can work flexibly and so on and so forth. So it's about outputs rather than whether you're at a desk or not. So that's what's behind it. What's your thought, if you have any on that subject?
Simon Minty 3:08
I've got so many thoughts, and I probably won't be coherent as they all sort of tumble out. You're right, we visited this before. And I think it is an ongoing one, partly because it is a different way of looking at disability. It isn't for those who are there. But for so many years, the mantra around disability is we're not sick, we don't have illnesses, we have the same health as everybody else. That was a mantra, that was part of it. So then remove the barriers. And off we go. There's a whole bundle of people said, Whoa, whoa, whoa, that doesn't account for me, that doesn't include me, I do have some sort of illness or condition that does affect my energy levels, and so on and so forth. So it's it's still what's worth. It's tricky for me, because I'm not in that gang. It's it's a different way of identifying. And I totally get why they will reject certain models. And we've had this debate hundreds of times, you generally said the model still works for them would argue, no, it's still work. Because while they're in the house, they get the support and da da da and then they get out the house and they've got to use the wheelchair and off we go. But people don't want to use wheelchairs or whatever it might be. There's always been I'm spindling around the point maybe which is more up to date is your element around COVID. And everyone being at home, we could mention the half a dozen people we work with over 20 years who would come to meetings and lay down on a bed. Yeah, because the nature of their impairment meant that they couldn't do have you know, they were limited. Um, what I'm hearing is there's a lot of people who are like that, and they're saying, You all work from home. We've already been doing that. This shows that it's perfectly easy to do its why companies are saying you need to come into the office half the time while corporate real estate is going to be empty a lot of the time. It's why the whole thing is moving. The research endpoint means I've got the research. So I'm kind of just doing it based on your introduction.
Phil Friend 5:08
Yeah, well, we will post links to the research, I came across this, at the Royal Society of arts, they've been doing a whole series of bits of work on and webinars on work, you know, employment issues. And this surfaced in one of those. I think the other angle, which I didn't mention that some of the research is around, is not being believed. So that the whole idea that this is all a put up job, this is just people wingeing, or, or trying to pull the wool over other people's eyes. And so one of the biggest disability features is the fact that people aren't believed. And that goes back to social model for me, because, you know, my argument has always been not not that I'm telling people with energy limiting conditions that they should believe in the social model. I'm not saying that. But I think the social model does have a barrier, which we know is attitudinal. And if employers, for example, think that those with energy limiting conditions are, you know, malingerers, then that's the attitudinal issue, and one that needs to be tackled. And I think the research the reports written by the people, and by the way, most of this work has been done and written by people with the condition 700 people were involved in one survey. This is, this is a big issue. And I think it's increasing, you know, the, the incidence of people with these types of impairments or conditions is increasing. So it's getting a bigger, maybe, maybe people are feeling more confident about saying something about it.
Simon Minty 6:43
Um, it made me think of a lot there. There's the idea that they're faking it. Yeah, that's a pretty full on way to live your life. I mean, you got to give up a lot to fake that for what benefit I'm not sure. However, we know there may be a percentage, we've all seen line of duty. And there's that character who's, you know, got the pretend hurted leg. And then at the very end, we see him lawn mowing, walking along. So, you know, we know there's people out there, but it's a tiny percentage, and it's not relevant. And it is a kind of the idea that someone does that just for some other benefit. Now, I think you're right, there are more people. Or no, maybe I've got to change that. Is it that we've got more conditions, therefore we've got more people? Is it that we've always had these people, but now they have more of a voice? And they're talking more, whereas before we were, they were written off? Or they got their support, and they didn't have a voice? Or is society changing? So we're now saying, the concept of you going into the office or you go into the building site, you're going to the shop and do your day's job, or day's work has changed so much that anybody with any impairment can do stuff? the bit that I love, and this is my kind of, slightly more corporately, right winging it, which is, this is great, really, because it means people can work and it means people won't have to be completely dependent on benefit, it means they can earn their own money. This is great. This is a good thing.
Phil Friend 8:16
Yeah, I think one thing that that the I would say about what you've just been saying is that I think one thing that's really interesting for me is that what's going on now is that larger numbers of people with these conditions are coming together. So there's beginning to be in quotes a movement 700 people carried out the surveys, there are some protagonists using that word in the most positive sense, who keep on talking about this subject, and are now organising, there's a sort of, there's a momentum behind it. The last one that I really remember this so it was when James Partridge, our lovely old mate James got us thinking about people with facial disfigurements and so on in a way that we hadn't before. They'd been there, there were lots of people with these issues. But James and others came together began to really make us sit up and take notice, I get the same feeling about this group that this is, although their conditions may be very different from each others, they suffer from using the word suffer. They suffer from the same kinds of vilification or exclusion. I think one of the things that one of the reports says is that they feel forgotten about nobody takes any notice.
Simon Minty 9:41
And go back a bit. If you think when we ran a company, we made reasonable adjustments. We gave a lot of advice to large corporates. We did it on all sorts of different types of disability impairments. The one that was always a tricky one was chronic fatigue or ME as it was, then And it was really hard to resolve because that so much flexibility was needed, and the work from home. And at that point, which I'm talking about early 2000s, perhaps up to 2012. It was a different approach a different attitude. And it wasn't that it wasn't considered as, as real. It was more the workplace struggled to identify what adjustments can be made, to allow those people to be productive in whatever shape or form. The bit that, I'm finding really interesting, if we go back to a podcast of you and me about two or three years ago, we flipped sides. You previously said the social model works for everybody. They just don't know it yet. yada, yada. And I was going yeah, but what about if you're just so tired, you can't even get out of bed that the models and weather where I'm at, and you come around, and you're like, I see this, I get it. Now I've gone back. And my struggle is my struggle is, is this disability? Or is this illness? Now, if we sign they're all the same? Fine, but then we do need to redraw the parameters. And that's perhaps what the research and the people you're talking about is, and then asked us disabled people have to say, we are part of a group that has sickness as well, it's not just having this physical or sensory condition that, you know, is difficult to interact in the world, or people treat us differently, because of the way we look. This is a lot more, and I don't think we've quite got there. And there's moments I completely fundamentally get it. Of course I do. Because it's all about the barriers and the restrictions and people being left out. That's the bit I can't stand. But I do get a bit weird about the identity part of it. And that's when I'm kind of I get a little bit lost.
Phil Friend 11:45
But I don't I mean, I think I think the term that's now in common usage, and never was when you and I 20 years ago, is long term health condition that never got mentioned, it was always disability. That's all we talked about. And then long term health conditions began to be talked about, because there clearly are conditions which last many, many years, if not forever, that you would see as an illness rather than a disability. But disability in the social model sense isn't about, I don't know, polio, or something. It's about steps and attitudes. And those things, I've always maintained that the social model does apply to this group, in the context of the barriers that are put in their way, the attitudinal ones in particular. So although the group themselves say the social model doesn't, and they're not storing the social model out the window, they're simply saying it doesn't do enough for them doesn't answer their questions. But in my view, one part, which the social model does answer questions around is the way they're treated by people without the condition.
Simon Minty 12:49
But their argument is there is something inherent within them of their condition. By the way, we really need someone on the show who's got it. Yeah, we are wittering on a lot here. And I'm very conscious that I'm digging myself deep. I'm not even getting the real pushback. But the argument, if I'm taking on a surface level, there's, well, there's something inherently inside of me, that is making it difficult. So forget about the environment is what I've got. But your point being Yes, we get that. But then we need to choose an environment that allows you to do whatever you want to do or be part of,
Phil Friend 13:21
we need to be able to rule out that it's us that's causing the difficulty for them. And they, and this goes back to our personal development programme type work, the individuals with these conditions, need to be assisted of whatever that correct term is really, to make sure that they aren't part of the problem, if you know what I mean that they're resisting, perhaps doing things or whatever, because we've met loads of people who have realised that in some ways, their way of viewing things has meant that they exclude themselves or whatever, but primarily the issues about other people's attitudes as
Simon Minty 13:58
well. Yeah, but that's kind of, there's a new word ableism is not a new word, I found an article that I was interviewed 2014 for The Guardian. And I said ableism is a word that will take 10 years before the it will become into common parlance. Because at that point, it was a few exclusive people using it. And we're like, Well, we've got this new word ableism. I've seen it around a lot now. So we're seven years later, but I haven't seen my parents or Joe Schmo on the street, start using it. Yeah, so another three years. But there's a long way of me saying part of this can be back to what we used to call internalised oppression. disablism, which is these people going well, this is what I've got, and therefore I've been told by society, this is what I'm worth, and that's the bit that you're trying to bust. Then we get the other solution. If someone's got an illness or a sickness, and there's something inherently inside of them is the solution to that medicine.
Phil Friend 14:56
It could be I mean, it could be treatments which are ameliorate the condition clearly our I mean, my wheelchair is my medicine,
Simon Minty 15:05
but it's not medicine. And that's where it clashes again because bearing in mind, I'm talking, I'm not talking myself here. But the purists, the disability radicals would say, Don't bring in medicine. It's other stuff. Whereas there are people who don't bring in medicine, I want the drugs. I want stuff that alleviates this.
Phil Friend 15:24
Now I'm with that and I think what didn't exist when you were doing your soothsayer bit when you were featuring being a future crystal ball gazer, you were about ableism. I think that we're watching something going on around this subject now, which is an COVID, in some ways, has given it more impetus, because clearly, people have shown that it is possible to do certain things, if you have the freedom to do it, when you can do it. I think let's bring this, I think you're right now
Simon Minty 15:56
I don't know. Let's carry on No, no, let's carry,
Phil Friend 15:57
I'm gonna end it like
Simon Minty 15:58
this is what you do to these people, for goodness, shut them out.
Phil Friend 16:03
I just wanted to finish by saying, You're right, let's get someone on who's got a condition like this, who's one of the speakers, but I'll look at the names and addresses of the people that contributed to this research and will drop them out. And if they're listening, which if they're not, well, I'm never speaking to them again. But if they are listening, why don't you contact us and we'll set something up
Simon Minty 16:24
Of course they're not listening, because we keep banging on about the social model, they're like those bloody old farts they don't even recognise us. A couple of quick las bits from me, my soothsayer, I should qualify, I didn't even remember saying this, someone else sent me the article, I saw him as like, Oh, I'm quite pleased. It was no showing off as like by now, I actually said the other element, there was someone on Twitter. And I forget I apologise to this person. They said a line about illness and disability, which is exactly my head confusion that I need to talk about. And this person does have a long term health condition. So I wrote to them and said, I would just love 45 minutes talking to you on the phone or zoom to get my head around this because I just want to get my head around it. And they didn't reply, and I thought, Oh, you're an idiot, Minty, you've gone straight in you've not given some of the time just because you're thinking strongly about this doesn't mean to say someone else's. That is a long way of me saying, but we do need some people. And I know there's great organisations whose Catherine Hale,
Phil Friend 17:25
she's one of the contributors to the work. So Catherine features a lot in this.
Simon Minty 17:30
Angela Matthews, who we have had on the show. These are strong advocates of this part of disability.
Phil Friend 17:37
Well let's do something about that.
Simon Minty 17:39
You do it?
Phil Friend 17:39
I'm too busy. Well, no. One of us will do it. Anyway. Stay tuned.
Lawrence Carter Long 17:45
Hi, I'm Mailin Chan. And I'm Martyn Sibley. And we are the hosts of the exceptional leaders podcast where we spotlight high profile topics and amazing people who are changing the world view on disability.
Speaker 4 17:56
Even though we are oceans apart, we are bringing people from all over the world together to discuss inclusion, advocacy, accessibility, and real life journeys.
Lawrence Carter Long 18:05
So listen to the exceptional leaders podcast, hear the voices and stories from amazing changemakers and be inspired to make a real difference in the world.
Simon Minty 18:15
We're moving on to a new subject, Abbi and
Phil Friend 18:19
Poor old AbbiI every show for all that.
Simon Minty 18:23
I must confess, when I was getting ready for this show, I was thinking I'm gonna have an argument today I'm ready to have an argument and we've cracked straight in it's remarkable. It just happens. I can't nail this down to a kind of a pithy introductory sentence. So there might be a couple of bits here and then I'll throw it open to you. This is an article from February and it says why won't Nike the sports manufacturer use the word disabled to promote his new Goflyease shoe. This is a shoe that's history. In 2008, innovative designer Toby Hatfield created an accessible shoe for executive Jeff Johnson, after a stroke left Johnson with limited dexterity. This custom shoe feature two pieces of hinged Velcro around the instep and heel was intended as a temporary solution. Nike have gone on and created this hands free shoe. It's got this pending patent pending pi stable hinge. Loss of tension is the whole point is this is going to be a really easy shoe to use. And I've already loaded myself I just kind of done what the article is saying. I've said easy. It is easier for certain groups of people. And the article is saying they promoted this the source we know is from disability. Yet when they've gone to promote it. they've dropped the word disability altogether. Lawrence Carter Long who were a big fan of in the States he said say the word get over it. Joffrey Verde Liz Jackson who wrote the article is saying the moment you've dropped it, you've now excluded us and so this is the problem. We create these things with disabled people, then we jump straight into the inclusive design argument, which is, this is good for everybody forget disability, why are we saying it's good for disabled people, it's good for everybody. And then disabled people get left behind. And in this case the shoe has become so collectible and elite and special is way beyond the price that most disabled people could afford. Anyway.
Phil Friend 20:24
This is so timely, because is it? Yeah, it is very, very timely, I stand by for another row. Weat RIDC, as you know, Research Institute disabled consumers are big on the word inclusive, inclusive design, Mr. Minty And we have just I'm not going to name this but there is a new product coming out which uses disabled models, doing athletic and sporty type things to promote a deodorant. Okay, now, much to be admired about that. But this has been promoted as a disability product. And I'm questioning well hang on a minute. Why wouldn't it be promoted for everybody? Why is it just for disabled people, because what they've done is they've developed a bottle, which makes it very easy to open. It's got Braille on it. So it makes it very easy for blind people to read. Now, there's nothing wrong with any of that. It's great stuff. But it's disability. Why isn't this being used for everybody? So it's a kind of Nike in reverse they haven't dropped the word disability, they're promoting it like billyoh in relation to disabled people. So I'm saying Hang on. So we're at definite odds here, Mr. Minty you wanted a row Let's go for it big time.
Simon Minty 21:43
Okay, the obviously I now will pretend to be a professor of marketing and promotion is the typical essence working with john Corcoran, who we've had this year running I we've had on the show with Marianne Wait, who does have a lot of stuff around branding? And always we want disability sexy, cool, desirable? Because at the moment, it isn't. And this isn't something you aspire to. Now, the argument that this is for disabled people, because it's easier to use my bit, is that a dead end that they won't sell anything. And he's the reason Nike have gone through this process is because they said, if this is our disability suitable shoe, the no one will buy the bloody thing. So but is that a problem that disability is still perceived as so undesirable or so different or so negative or whatever word you want to throw in there. That's why and will that ever challenge?
Phil Friend 22:37
You see where I think we were both at one here is that this product gets developed, because a particular individual has a problem. And then it's recognised that this product could benefit everybody. And what's wrong, if that's the right word, is that it's the source that's not being recognised. So it's not a disability product anymore. But it came about because of it was a solving a particular problem for an individual. It was then realised this would be brilliant for everybody. So what's going on? Is that disabled people aren't getting credited. Yeah, that's the biggest missing
Simon Minty 23:20
Well, is it me because you know me, so youknow me very well, very well. If I come up with a brilliant idea, and then you talk about it to other people, and don't credit me I'm relaxed about I've always said, it's about the greater good.
Phil Friend 23:33
I've still got marks on my back.
Simon Minty 23:37
Listener. I'm terrible. If you don't give me the credit, I get so moody I really do.
Phil Friend 23:41
We're all a bit. We're all a bit like that. I think that's what's going on here that Nike have failed to recognise the source for the brilliant idea. That's the point.
Simon Minty 23:53
We asked Lawrence Carter Long from the US whether he would just say a few words of what what was behind hashtag say the word and using the word disability. And he very kindly recorded this audio.
Phil Friend 24:05
That's fantastic. Well, I just have a listen.
Lawrence Carter Long 24:07
Hi, Simon. Hi, Phil. Lawrence Carter Long here in Oakland, California. Say the word started the hashtag started because I was angry. But mostly because I was frustrated. I was working for the federal government at the time and a president that I respected. I had just given a speech where he mentioned almost every other conceivable community or identity group that you could imagine LGBTQ Latinx senior citizens, you name it. And people that I knew personally had worked very hard to make sure that that speech was accessible to disabled folks, captioning, audio description, things of that sort. And yet at the end of that big speech, where the President was talking about the United States coming together, who was left out 26% of the US population with disabilities as a What is it going to take for us to be recognised as a community and as a constituency? What's it going to take for us to be honoured and respected. And I posted to Twitter and I posted to Facebook, right then and there. And I said, something to the effect of, if you see the person, not the disability, you're only getting half the picture, broaden your perspective, you might be surprised by everything you've missed, disabled, all in caps, hashtag, say the word. And that's what I thought was going to be the end of it. But I woke up the next day and throughout the next week, and people were using the hashtag, and they were writing about it in Wales and in Australia. And somebody from National Public Radio, you know, which is sort of the equivalent of the BBC World Service here, stateside, wrote me and said, What do you mean by that? And what I've come to realise now almost six years since is that, for most of human existence, disability was just a diagnosis. That's all you got. But because of increased awareness, and community organising, and political advocacy, and even podcasts like yours, throughout time, the word has come to me much, much more. If you use the word disability in 2021, odds are you're talking about things like identity, culture, history, despite what your teacher or your preacher or your physician might have led you to believe. Disability is no longer something people feel compelled to distance themselves from. It is now a point of pride. It's an indicator of our shared sense of community. And I think our growing strength as a political constituency. It's a unique point of reference, a unique point of view. Yet, despite this fact, we've been told for centuries, that disability was something to be cured, cut out, gotten rid of. And what I realised at some point way into my adulthood, was that life is too short, for somebody else's shame. You don't have to pick up that suitcase and carry it around. Disability is what we make of it. And there's a lot to be proud of in terms of the communities that have come together, and who identify as disabled. I think by any definition, that's progress. And that's why I'm proud of not only where the hashtag began, but how it's grown beyond me to something much more that other people have come to embrace for similar reasons. And I also think that's why it's necessary. So thank you for the story. And thank you for keeping the conversation going. So that we can expand people's cognitive understanding of what disability is beyond its problematic origins to mean much more to everybody.
This is the way we roll hosted by Simon Minty and Phil Friend.
Simon Minty 28:26
Now, when we do this work, we often identify things that were brought around through disability we corny cliche, there's a whole book out there now which is around deaf people. And the phone and Alexander Graham Bell trying to come up with his product and the book by the way is really good it undermines his concept of him giving a good thing. It's quite a touch anyway. There's always things like electric windows in cars. Yeah, we know these things were designed for disabled people, then they became mainstream. Is it important I suppose it is important that there is a source because otherwise, it does leave disability in the. Oh, they need something different, camp rather than disability. Oh, but then I'm doing the argument, which is disability stuff is good for everyone?
Phil Friend 29:07
Well, I think you, you did say something else in the process of this, which we haven't dealt with yet. But first of all, I think that, for example, there's the list of endless of things that have been prompted by a need from a disabled because endless endlessly endless things like voice activated software, dictation, all of that stuff starts its life to solve a problem IE I can't use my hands on a keyboard, but I want to type Okay, clever scientist or academic or whoever goes, aha, you can do it this way. Then we go fantastic. And then like two Three years later, Dragon Dictate is on every bloody PC World shelf, no acknowledgement where that came from no derivation, no antecedents, no kind of acknowledgement that's missing from this because that makes disability interesting. I think it's a problem solving issue.
Simon Minty 30:00
Stephen Hawkins bought us Lost Voice Guy.
Phil Friend 30:03
Well, you could argue that, couldn't you? Does he argue that loss voice guy by the way,
Simon Minty 30:08
he always credits because he is the same but he always says he goes into the cinema and sits at the back and then starts putting voices out from Stephen Hawkins and confuses people. In the article, they also talk about and I want to get this right, Alex. Haggard, I hope I pronounced your name right. Alex describes the peeled orange phenomenon, a device that is widely derided by abled people as a needless technology frivolity, but desired by disabled people. I've got a couple examples where it could be pre cut fruit, people go, Well, this is environmentally wasteful and out. If you're too lazy, you can't cut a bit of fruit. However, there'll be some disabled people go this is a godsend. This makes it easier. Things like an electric can opener are brilliant friends, Geoff or Matt Fraser. This changes the game. So there are bits of tech the people that Oh, we got to this point yet, yet disabled people are going this is the best bit of tech ever.
Phil Friend 31:05
Yeah. And And the thing about those examples, is they don't look different and clunky. So for example, when you and I did all the work we do with Kay Allen at B&Q, one of Kay Allen's challenges to us was, we need to identify products, which would be really useful to disabled people, but not say that.
Simon Minty 31:32
We did a Nike.
Phil Friend 31:33
And whatKay's challenge was, she knew that if you didn't do that, the general public wouldn't buy. Oh, that's for disabled people. I won't buy that. But actually, the little plug which had a handle on it, which made it a lot easier to pull out, was used by millions of people is so much more sensible. What we came up with. I'm not saying whether it was good, bad or indifferent, but we came up with the expression, making life easier.
Simon Minty 32:00
I thought it was doing things differently.
Phil Friend 32:03
Now making life easier. And what Kay did, which was experimental was to hang little labels on things like to see if it worked. And I think the jury was out. I think there were there were issues with it. So we never got it quite perfectly right. If Kay is listening, she ought to kind of tell us but but but that was an example of a piece of design, which was which had disabled people in mind but actually was being used by everybody and I think that's the bit that's the Nike shoe is a fashion issue. It's, it's clearly a very good piece of kit for wearing and so on but it looks good. You're part of the gang all that stuff. What we don't want is a separate trainer for the disabled lot.
Simon Minty 32:42
And it's B&Q is the kind of big DIY homestore isn't it? That's Yeah, that's Yes.
Phil Friend 32:48
The kind of Wallmart in Britain, isn't it?
Simon Minty 32:51
And thinking of something like OXO Good Grips, yeah, these are kitchen implements that are easier to grip. Now they are considered cool. They're considered desirable. They're very expensive. Now, again, we're going out of the range of certain some disabled people, but they have crossed over they're doing a double
Phil Friend 33:11
They were designed by the husband, was it not of a wife, who'd had I'm thinking stroke, she couldn't use one arm and he designed that product for that and then it it just went boom.
Simon Minty 33:25
Phil Friend 33:26
is the whatever of the thing. This one that's the one
Simon Minty 33:31
this is slightly on by the BBC the Papers Review I miss quoted by the well known quote, I feel such a twit. Okay, I was when I was looking at this article, they say it feels like a call to arms, it feels like about culture. The article reminds me of the uncompromising disability radicals in the 80s and the 90s that are sometimes frightening. Sometimes I disagreed, but I do feel they pushed them they got change, and there's something strong there. And it's sometimes it's uncomfortable. Sometimes it's so full on you kind of while is that? There's no moderation. It's not pragmatic. It's like dammit, I mean, they sort of finish the article and I'm not gonna say finishing the conversation. But the Flyese the shoe of a future it's got to honour its history. to appeal to disabled people beyond tokenistic representation. It requires a campaign that demonstrates a commitment to learning about what disability is rather than promoting accessibility to reach mass audiences and if we've learned one thing is disabled design critics it's that storage and form the way we designed disabled people are the original fly ease consumer. It's about time Nike stop raising us. I agree. A just want to know like Nike could make disability cool Google could make disability cool Channel 4 kinda got their around the Paralympics, making it cool, although as a whole bundle of disabled we went. No, that wasn't cool. That was the wrong representation. It's only really tricky thing here?
Phil Friend 35:01
Well, you know, I'll get back to what I said at the beginning, I think it's to do with acknowledging where this comes from, you know, there's nothing wrong with putting some kind of badge up at the front that says, you know, designed for but now widely used by kind of thing, you know, clever marketers will come up with much better ways of doing it. But But the fact is that what, you know, Geoff, good old Geoff and us are often talking about is form and function, we want a wheelchair that does its job. But it must look sexy. It's got to have a range of colours, it's got to be made of different materials, it's got a, it's got to look interesting, rather than some kind of thing you use in a hospital. So, you know, when you look at just ordinary things, like the utensils in a kitchen, you don't want it to stand out, it's got to match your kitchen units. It's got to, you know, it's got to, so I think, I think Nike are doing that, actually, they've developed a product, which is very easy to use if you've got manual dexterity issues, but it doesn't scream disability. And what the critics are saying is, it should
Simon Minty 36:15
should acknowledge it.
Phil Friend 36:16
Yeah. And that's the point. And I agree with them. I think if it says all over it, this is for disabled people, then no one else will buy it.
Simon Minty 36:23
There is just a qualification. I travelled a lot with Liz Carr and her wife, Jo Church, and we've been America and we go into one of those Walmart stores or Walgreens. And we'd find the aisle which we call the disability aisle. And if all it was was bits of kit for disabled, so there'd be a walking stick, there'll be a little thing you could hold playing cards around, because you can't. Well, but but different stuff like you know, you playing cards, and this holds all your cards, because you can't hold them, there'd be a whole aisle of them, and we would scream with delight.
Look at this, this is amazing. And we come out with a bag full of stuff. But we are the exception because we love our identities. And we think this stuff is cool because it is solving our problem.
Phil Friend 37:11
you've also been seen in pound shops in Walthamstow which do not have such an aisle do not have products with disability written all over them. But you bought yourself 47 million steps stools.
Simon Minty 37:26
and they appeal to disabled types because it's all there. There's no shame. It's just that's maybe to the point there's no shame This is just good kit. Yeah, I've lost my thread. But the one argument which is more tricky to shift, they're saying it's not accessible because of the price point 120 bucks buy it. And because they've become exclusive there now $500 on eBay. I fundamentally agree with that. And there is a question that should if they want to make this mass appeal, do they bring the price down? But will Nike ever come up with a cool, accessible mass appeal shoe and then drop it to 40 bucks is everything that Nike does.
Phil Friend 38:07
to be fair to Nike, they're not doing anything that anybody else isn't doing, are they because when you look at the extra cost commission work that we did with Scope all those years ago, we found that anything that had the word disability in front of it costs a lot more money. So those grab rails that were in Walmart, or wherever it was, I bet they cost 10 times as much as a grab rail in another aisle. I mean, wheelchairs How do you tell me that a wheelchair costs 15,000 pounds? When I can have a car for less. How does that work? Please tell me
Simon Minty 38:36
I press the buttons, thank you ignore it links back to our lovely man who tried to disrupt the whole disability market because he knew it was a con and there was so much markup everywhere. And he got shunned out of it. I mean, I'm probably getting lots of legal trouble there. But that was the essence of it. He I also when I've been in China, I thought right, I'm gonna start importing mobility scooters, because I can get the 100 100 pounds from China, and I sell them for 200l and everyone wins. But I wouldn't be allowed to they'll close me out
Phil Friend 39:04
There is something about pricing. I mean, I get the point you're making about Nike is different. Yeah, this is footwear, and it's not your mobility aids and stuff. But but nonetheless. I suppose disabled people very often feel left out of the market because they can't afford the stuff.
Simon Minty 39:21
And this is why would 100% Let me think of apple. We know Apple's great is accessibility, but again, it's got 25% Premium over other products. But if you're making a shoe that will appeal to a group of people you need to put it in their price point surely. Yeah.
Phil Friend 39:35
Yeah. You'd have thought so.
Simon Minty 39:38
And the right size cuz I bet they started six of them four. Mm hmm. That's the main point.
Phil Friend 39:44
Do they sell singles. What about the amputee, only one leg only got the one leg. Do I sell them in singles. I don't wanta pair I just want the one.
Simon Minty 39:56
. I know there will be short friends who are size 12 kids. You now ones this I hate these shoes.
Phil Friend 40:02
I don't like Nike I I'm off them. Yeah, let's move on to das das
This is the way we roll hosted by Simon Minty and Phil Friend,
Simon Minty 40:14
Listeners corner. Thank you for getting in contact. We had a lovely bumper one last time. And David Aggar he's a chap as UK chap but he's in the US now. I met him through some disability work. He said the last one was great episode. I don't know if it surprised me or not about the much bigger fine in the US. This was when we were talking about two cases of train operating and Uber in the US paid out a lot more. But either way, good to hear some form of justice, albeit at different scales. He put scales of justice. Yes, me. Thanks, David. And I hope America is great. I would I think your DC I'll come and see you one day. That'd be amazing. Now, I was thought of being a marketing branding guru. So I put a controversial tweet out that said, Are you better off being discriminated against in the US because there you get 800,000 pounds for 14 times being refused by Uber? Compared to the UK? We're 30 times being messed about on the trains. You got 17,000? Yeah, okay, that one backfired on me because Sam who is on Twitter who is goes under the name of flower girl, quite rightly said I hold up I am that person in the UK who took that case? The money was never the issue. The issue for me was changing policy. It was getting this corrected. It was making sure it didn't happen again. She wanted real change. I've apologised apologised you online term, and I'll do it again here. I'm very sorry. And I never was trying to imply that it wasn't that it was more a case of is it seen differently in the UK to the US, she was treated 30 twice as many times and had been to the House of Lords and had met the rail line, and still they buggered up and I think she got bugger all money.
Phil Friend 42:03
I seem to recall saying that I thought Sam was wonderful, and resilient, and tough and long lasting. And she quite rightly rounded on you and gave you a peace of her mind. And I'm impressed. Because I've been at this for years. Sam, I've never had an apology on in public or behind or anything. Sam, Sam how how are you?
Simon Minty 42:28
that's not actually true listener. And anyway, when I told him he said our whatever, anyway.
Phil Friend 42:36
I do seriously mean that I think what we did say last time was that it's remarkable how Sam stuck to this just did not go away. Good for her.
Simon Minty 42:45
But we did. We did say we know that taking a case. As under service provision. legislation is exhausting. It's tiring. It doesn't happen very often. And she just tweeted recently, it's happened again, she got treated badly on the train. And you might, what do you do at that point? And what we both talked about was that absolute exhaustion level and also emotional, is it get upset, you're like, I don't know what else to do. Now, I I've done everything I've taken a case of one case, and still I'm being treated poorly.
Phil Friend 43:16
And the other. Another old friend of ours, Ross Hovey who I've known for a long time, Ross has muscular spinal muscular atrophy. And he alerted everybody. And we're just passing on this alert, really, to the fact that he's under, he's trying out a new drug called Risdiplam, which is experimental stage but it's being used by people with his condition to see whether it will help extend their lives or improve their physicality so they can do a bit more. And and Ross is keeping a diary on Instagram and YouTube showing how things are going for him. And I have to say, looking at this I've been following his progress. It seems to be you know, helping a bit, you know, he can he can use his fingers in a way couldn't before he can move his arm in a slightly different way. Some of his closer friends have said that, you know, he seems to be sitting better on things. So you know, fingers crossed. I also saw another drug that has just been released for other people because there's different types of SMA of course. So this is interesting that stuff's beginning to come out that may be helping this group
Simon Minty 44:27
and either way when it was not just like it was life expectancy and allow him to live a lot hlonger,
Phil Friend 44:32
that's that's the hope. Now obviously Ross is one of the in quotes guinea pigs so it'll be interesting to see but at the moment is looking really quite encouraging.
Simon Minty 44:41
And a bit like Sam Yeah, he wants to out there so people who are connected to SMA know about it, see about it and they can evaluate whether it's the right thing to get good on you Ross. Good luck, and with it.
Phil Friend 44:52
we'll give you Ross's link to his YouTube and stuff so you can see how he's how he's doing.
Simon Minty 44:58
And I have a two little shout outs not really little. Oh, actually one of them is I agree the pro par. Russell silver syndrome podcast is a form of dwarfism. And the podcast is hosted by Kim Taylor. And Steph Robson produces it. I met some of these people when they were in the early days of Should we do a podcast it's very niche because it's obviously about them and their condition. But we'll put a link to that. So take check it out. And I've seen another one. This is Ade Adipitan , who we love and he's is part of an organisation called dope black disabled. And I love this where it's just I had to look up dope because I'm middle aged. And it's just like, you know, just about being cool being your thing doing this stuff. You could be a dope dad, which means Oh, yeah, you know, you're a dad and you're cool with me
Phil Friend 45:49
that what about dope, granddad? Could you be a dope granddad?
Unknown Speaker 45:53
Of course you could super dope granite I
Phil Friend 45:56
love it. And
Simon Minty 45:57
when I looked up I put in dope grandad and your image came up on Google?
Phil Friend 46:04
Was I wearing Nike trainers?
Simon Minty 46:08
You were struggling to put them on that was the problem. The point of it with dope black disabled it's a double whammy is for disabled and being black and we'll put a link to that we I'm trying to get some people on so we can
Phil Friend 46:21
Ade's always added dope. He was dope. When he was born here. He's totally dope. I remember when he was wheelchair basketball player for Great Britain. My goodness me
Simon Minty 46:31
He didn't do dope then.
Phil Friend 46:33
He didnt do dope then. He was not up Mount Everest every other week, which is what he does now.
Simon Minty 46:39
Yeah, that's dopey. crawling along you crazy cat. They are our listeners callers and shout out. So thank you, everybody. If you want to get in contact with us, Phil will give you the email address.
Phil Friend 46:55
Yes, you can get us at the way we roll or [email protected]
Simon Minty 47:02
And I'm still using beacon which I adore. But I've had bit about two clickthroughs our YouTube channels doing all right, so you know if we get in there.
Phil Friend 47:12
We'll soon be up there with the best of them. Peter Crouch Eat your heart out.
Simon Minty 47:19
We have reached the end of the show. Thank you so much. If you've listened this far, we appreciate that. Do tell your friends to drop us a line on Twitter or Facebook or LinkedIn or wherever.
Phil Friend 47:31
Yes indeed. And enjoy the next two or three weeks before rum. We're back together again.
Simon Minty 47:36
Take care thanks for listening.
Phil Friend 47:37
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
Transcribed by https://otter.ai