Peter Torres Fremlin joins us this month. He’s a prolific writer and journalist, specifically the Disability Debrief which is a newsletter reporting on disability news from around the world and the people that are making change happen.
He has lived and worked in many countries, including Bangladesh and Egypt and worked for several large international organisations such as the International Labour Organisation and Humanity and Inclusion (formerly Handicappe International).
In a personal and professional conversation, Peter asks if we’ve focused too narrowly on the barrier removal, the societal-based definition of disability. He challenges this approach, suggesting it’s not ‘messy’ enough to encapsulate the diversity of human beings, being those with disabilities and long-term health conditions. He goes further, illustrating what independence means to different people, explaining that once he realised how helpful people were in the countries he lived in, he knew he would be ok.
Thoughtful, serious, erudite and quotable, Peter shares his (re)thinking and experiences so far. We hope you enjoy the show and check out the Disability Debrief which he writes.
WHO report on inequalities in health for disabled people
disability and health, respond to the crises exposed by the covid pandemic
a landmark study on health inequity from the World Health Organization,
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 0:19
And me, Phil Friend.
Simon Minty 0:21
Our guest this month is Peter Torres Fremlin, Peter and I crossed paths during COVID When he returned to the UK after 12 years of living and working abroad, and Peter and I share a few things their love of travel a keen interest in disability. Now, in my head, Peter, I'm gonna alienate you straight away. I've always thought we were both people of short stature, but I'm not convinced anymore. Sorry to be clunky. Where are you on the disability scale?
Peter Torres Fremlin 0:46
No, I love I love that you saw me as a brother, Simon. I, I was born with a type of muscular dystrophy. Relatively mild as they go. So my muscles were muscles are weak. And now I'd like me it's kind of disability that upgrades itself. So I'm in the in the scale of that. But that's obvious we're sort of talking about it from the impairment point of view, rather than the other aspects of disability that I'm sure we'll get into.
Simon Minty 1:29
Absolutely. And sorry, it's a kind of weird thing to ask straight away. But I hadn't realised
Peter Torres Fremlin 1:34
I only answer because were siblings in the disability movement. Simon, if obviously if someone from outside the movement was asking, I would.
Simon Minty 1:48
It wouldn't be my opening question we're still brothers and his another brother Phil.
Phil Friend 1:53
Yeah. Well, Peters work is very impressive. He works on international cooperation mainly on inclusion of persons with disabilities. He is a freelance consultant and his work on disability focuses on employment and on mainstreaming disability.
Simon Minty 2:08
Peter is a prolific writer. He's a journalist and we share. He will share his links in our show notes. Perhaps the main writing is the disability debrief. It's a newsletter reporting on disability news from around the world, and the people that are making change happen.
Phil Friend 2:24
In a recent post, Peter says we need a new lens to report on disability. He says what we have had has been useful, powerful, but it doesn't tell the whole story and not speak to the messy complications of lived experience, or how other issues or identities can intersect policy work to is based on generalisations, and an often bullet pointed distance from daily life. Can you explain this a bit more? Peter,
Peter Torres Fremlin 2:51
Thank you for bringing out that piece. I think it's one of the most important things that I've written this year that really sets out the stall of what I'm trying to do on disability debrief. But let me sort of rewind a little bit and say how I got there. I sort of started my disability work adventure with research on disability in Brazil. And that was sort of, I met sort of people with physical disabilities, and I was doing anthropological research with them. So spending a lot of time with them. And I saw look, the disability, the disability title isn't the best way to get into their experience, or necessarily like my experience, it sums up some of it, it's extremely powerful. Knowing about the social model and seeing how a disability is a socially constructed is extremely powerful. And but it doesn't tell the whole story of like how my body is in the world, and how those how those effects play out. Or even like how I relate with that disability label. So I had that chance to question at the beginning of my career, but sort of a month after writing and defending a thesis saying I'm not going to use the word disability to talk about this issue, I've then got a job working on disability. Right. And you know how it is you just get sort of sucked into that. And then my work on on policy and programmes around the world of speaking with, like, internationally, we're saying people with disabilities, obviously in the UK, we're probably going to say disabled people a bit more. Um, but I was writing about this and I was saying our people with disabilities are more this than with the other or more vulnerable to X, Y and Z. And I'm like, Well, I wouldn't like to be talked about like that. Right? I wouldn't like to be summed up like that. How shall we say that? That contradiction, like at the heart of my work that the way that I'm learning through work to talk about disabled people, and my own experience weren't matching. And sort of I found ways in my personal life to express this differently. But I couldn't quite say it in my professional life until through Disability debrief, which started out as a resource for colleagues. But then with people's encouragement, it became somewhere, I could share some of my own story, some of the contradictions, some of the life experiences of other people from around the world, I could see like we can't, we can't rest necessarily, like on a fixed category when like life is, life is much more messy than that. But disability isn't the only aspect of that, right. Sometimes disability is seen some definitions have it just in terms of barriers, right. But our disabled experience and experience as disabled people isn't just that, like our bodies and difference. And the social engagement of them is a barrier. There's, there's creativity and joy and pleasure. And this community that we found, that we found as well. So that's why I wanted to, like try in this new form of writing, not to throw the baby out with the bathwater, right to keep to keep all that this disability view can give us and it's given us, it's given us so much it's given us this movement, it's been really, it's been really empowering for people. And this is the way organisations work on it. Now, whether it's international organisation or business, whatever, whatever you might have. So how to keep that how to sort of keep some of that truth and purpose of the activism as well. But make it a bit messy, right, like and relates it related to our own lives, and then use that as a lens to kind of see the world in its messiness, right, to go out from our own experience. And to take that further.
Simon Minty 7:03
I I like what you're saying, Peter, I think it's felt for the last 10/15 years, we've been searching for a new way of understanding this. And partly this is generated by a new bunch of people, younger disabled people, or people with disabilities, however, we refer. And I can see they're trying to find their way, they don't have the social model to hang their hat on there, it's almost like I had to explain it, what I get from you, it's almost like with certain ways we've done it, so far, we've missed out the pain, and we've missed out the joy. And there's these things that either side and part of the human experience. Rather than just straight down the middle, remove the barriers, all is done, I'm gonna go a little bit deeper, because that same piece, which we enjoyed reading, quoting you," disability offers disruptions, whether it's the in brackets mis, as in the mis behaviours of our bodies and minds, the barriers we face, or the innovations we find. And you say, we need to go beyond news reporting in journalism, and include art into this and poetry and other forms to inform us", I want a bit more.
Peter Torres Fremlin 8:07
For me, disability is much more, it's a lens through which I see things, right disability, I'll give you an example of a disability lens. Like it tells me when a phenomenon is going on, like people are going to face it differently. Right, people are going to use a service or a shop or a train a little bit differently, right, people are going to sort of if there's an alarm that's based on sound, like some people aren't going to hear that they're gonna need an alarm that's based on light. So it's a way of sort of showing, showing difference. And it's a way of emphasising individual adaptations. And there's a lot of creativity in that as well. So that's, I think, kind of my call with that piece was like, we make innovations like in how we, how we connect with people, how we move about our houses, like we were just before the call talking about, like all our assistive technologies and sort of how we accumulate those and how those play out in different places. Let's also just sort of bring that to our writing and talking as well. And I really want to sort of speak to the diversity of it. Like I go into my experience as a way of connecting with others knowing that if I can see this richness and sort of bring to voice, this richness in the many dimensions of my experience that will match with the many dimensions of other people's experiences. So in that diversity, like one of the things that I need, I think we need to do, which is a bit difficult for an activist movement is like we like to get out of the idea. There's just one narrative, right? That there's just one way of talking about disability, there's just one correct way of talking about it, that I prefer, like, as a movement, we often prefer certain sets of words. And then we don't engage if they're a different set of words, or we might not engage if we can get very policing about it. Like I certainly do this, I think you've had interesting discussions about it on your show that you're watching something and then you're like, you get very like but I don't like that message. It's saying about disability. But ultimately, our endpoint has to have like a lot more diversity. And that's where that kind of creative side came in. Something that was a turning point for me when I realised that creative side was needed when I was writing about the outbreak of the Ukraine war last year. And again, like disability gives you a different view into that it looks at who's left behind it looks, it looks who can't get to bomb shelters, it looks at who was already segregated, and having challenges in society, it looks at how organisations were then responding to it in a humanitarian way. But I realised then that that we were all feeling this tragedy that it's not enough to just have the news and the facts and the statistics and these, these grim, grim stories people were going through. And that's where I sort of plugged into some poetry. There was a really beautiful poet called Ilya Kaminsky is, I think, is Ukrainian American, he's deaf. And he wrote a collection of poetry, like based around sort of deafness as a way into understanding military occupation and whatnot. Obviously, Ukraine had been had been at war for many years before. And so I needed like, to, to understand this moment, we need that we need some, we need some art, we need different ways in because again, it's looking for that understanding, like in a wide human way, not limited to some of the ways. Like you brought out that phrase as sort of a bullet point to like distance of policy. And it's generalisations, which, like, yeah, it's a very abstract, distant way of seeing, and I want to sort of take that back into our lives. Because as we know, like disability lives are messy, like, how we how we get ready for the day, and we go down the street, like, how our day to day is, and I want to take like, how does that messiness of day to day life impact our thinking? Right? Like that is what is at the heart of it for me,
Phil Friend 12:28
I suppose what you're reminding me and making me think about as you're talking is this idea, we used to talk about Simon and I and many others, the sort of this concept of a disability culture, the idea that there was, there were all sorts of things going on within disabled people, whatever their disability impairment was, that brought them together. And you're saying, for example, poetry, you know, cultures have art and poetry and, and cinema and a whole range of other things, Simon's passion for comedy, and so on, you'll find comedy different around some disabled comedians, for example, ones. So is that what you're addressing here? I think what I'm getting off you is this idea that we talk about barriers, and we talk about impairment, and we talk about law and all that stuff, as a movement. But we don't talk about enough. I'm sensing the kind of culture that we see the world through, in a sense. So your disability, my impairment, I'm on wheels all the time, that gives me a different view of the world from someone who walks. But I tend to talk about the doors I can't get through rather than the poetry that makes me write. Is that Is that the kind of line you're on with this?
Peter Torres Fremlin 13:45
I love that. I love that line that we've tended to talk about the doors, the doors that we can't get through rather than the poetics of view of the view from from down here. It's making me think Phil so I think that's something I'll definitely to reflect on, I definitely want to celebrate that culture that's there. And one lead for me that pushed me in that direction, was the disability to debrief just comes out of me gathering resources and curating resources. And then it grew into something else I saw on social media, like people working on disability, would share all the official stuff, but then they also really shared like, oh, this film came out, and it's got XYZ in it, or doesn't have XY and Z and oh, here's this song. And that's, that's the popular stuff. And so sense a real thirst that we have for that, for articulations of those different views, from where, from where we are, I don't it is it is a cultural point. For me. It's also like an application of that view. I'll give you an example. So going back to my studies of anthropology, like I was reading about, like Anthropology of cities and blah, blah, blah. And I'm like, Look, none of this speaks to the fact that when I go out in a city, I might fall over. Right? Like, how does, how does those visions and like, academic views of the world and the way we think about these things relate to my experience, I might fall over on the corner, or there might be a car blocking the path that I need to take? Right? And so when I kind of bring, that's the challenge that I have, like that view, from, say, a wheelchair we using or that view, from, from a body or mind that's, like, the brackets Miss behaviours of it, and how les what different vision does that give us on the world. And it's not just it's it's partly for us, obviously. But I want to sort of show people on the outside of the movement, whether they're disabled or not, that there's something like really exciting about this view, that is a new way of looking at things and you don't have to be locked into disability to find that interesting lead that I find one of the ways we get sort of siloed is by like, oh, that's for the like, the special thing for the special people, rather than sort of looking if that's the kind of a community that's a real source of like innovation, and grit and alternative approaches, and then diversity, like why isn't like, I'm like, that's exciting.
Simon Minty 16:37
I do understand what you're saying, Peter, and I'm struck by two or three things I apologised to Peter for my poor questioning technique. And I'm going to do it right now. It is I like exactly what you said. And then there's that bit, it's the grit in the innovation, but then that tip sometimes into on the brave on the inspirational and so we always want to try and not get schmaltzy I had a very difficult conversation with one of the leading disability rights activist in the UK. And I said the problem I had with the movement in the early days, which it didn't reflect all of me, it was so rigid. So dogma, and this person said to me, if we didn't, we wouldn't have got the change, we stuck to this very fine, single purpose. And you said, it's very difficult for a movement to have so much diversity because you start mixing the message. There's an American activist who died a couple of years ago, and I feel terrible, I can't remember her name. But she always said though, before we can get to pride, we need community in the community. So we're racing ahead going or have pride in your disability or yada, yada, your identity. But without the community in the first place, it's quite hard to get to that point. I, I feel you're talking, it's what I call the maturity of something, it's a kind of, it's always been there, we've just not had the maturity to talk about it or because it weakened certain things, it changes certain things. I'm gonna be cheeky and move on.
Peter Torres Fremlin 18:01
Now that I appreciate your style of asking questions, and you're like, sod it I'm not even going to ask a question. But I want I want that question. Like I'd sort of maybe answered to move on as well. I think like, disability, we're using the same word in many different contexts, right? We're using it in an activist sense, we're using it in a bureaucratic sense, we're using it in a political sense, we're using in a personal sense, the start of this conversation, we used it more in a kind of medical, in a medical sense. And I think that it's definitely for different uses of that word, you need different levels of certainty and absolutism. And that's one of the things that I've tried to create on the debrief and with with support from readers been able to create a space that we can do that reflecting and can do that questioning, and can say, like, is this the right way to work on some of the subjects we're working on. And I really want a venue for that. And that doesn't take we've got to sort of be more absolutist in other in other circumstances to to get the point across and but there's, there's, there's a role in doing that. I want to be able to do reflection in public, which often happens if you know the right people, and you do it behind the scenes. And I think your podcast is really nice job by bringing some of those conversations out. But it's too often restricted to like, if you know the people, you're in the conversation, and if you don't, you're just seeing the public side of things, which is sort of much more on the train tracks, but I think it sounds like you were gonna get to some of the some of the train tracks, Simon, let's get to that. Let's get to the train track
Simon Minty 19:48
and you're quite right, you needed to reply. The question I had and it's more about your experience and how you navigate this. So you work for or have worked with some of the big international international outfits around disability I'm thinking of International Labour Organisation is humanity inclusion, isn't it humanity and inclusion used to be handicap a international. I have this weird love hate thing. I admire them. And yet I avoid them. My encounters have always been I sort of feel I get lost in them. I feel it's bureaucracy, I feel there's pre agreed deals. And by the time I turn up, the debate is redundant. Or it used to be there was a lack of disabled people in the room, there was a lot of people making the decisions, or if you were disabled, you were sort of patronised. Now, I sense you need a mindset to work in organisations, you need to maybe be as bright and as academic as you, how will your experience have you my sort of sweeping generalisations of it, I'm hoping that it's better than that. You need to still work with them.
Peter Torres Fremlin 20:53
Um, I think I can be I can sort of be direct about it. They are like large bureaucracies. Right? These are kind of, I've worked with international organisations, some of them, like part of the UN, like the International Labour Organisation. So I started my career at the United Nations Development Programme, did a bit of time with HI. And sort of, then on a freelance basis with lots of these other things, these are sort of bureaucracies working in several countries, often, like the UN has, they call sort of governance things that are then very complicated and involve governments and of other actors. So you're within those frameworks, it takes a long time to get within those frameworks, right, and you kind of you, you have to kind of know, like, you have to kind of learn the rules of the game that you are playing. Those and it's quite interesting that in the, in the years that I've been working in the past 10 years, there's been real growth in the attention that these organisations pay to disability. And actually, the, you'll be surprised to hear that the UK Tory government has been a big part of pushing fat growth. So while we do one thing, at home, we've liked supporting other people to look at it so now, there is more investment in disability stuff, including specialist specialists like myself, there's a lot more reports about it. And that's kind of where we get to the other side, right, because it's a large bureaucracy, like it can be it's, it's by its nature, very siloed. And so the disability report might be nice, but is the rest of the organisation doing it unclear. And as for what it's like to work in these bureaucracies are, it's like, no secret, quite alienating to work in, like, I was very frustrated at the beginning of my career. And I thought I was because I'm a junior, like, they were like saying is because of your type of contracts, because your junior but the people that are very senior in these organisations are also very frustrated. Right. And also, like there's with a strict, the strict hierarchies. And there's lots of sort of complicated decision making processes, lots of dependence on sort of funding patterns, and, and whatnot, that sort of leads to kind of, sort of precarity and employment conditions, and frustrations within that obviously, like added disability to the mix, and it starts getting a bit more interesting. And then maybe disability is also the subject you might cut, if there is a funding if there's a funding gap. So that sort of, I mean, keeps it keeps it interesting. These organisations now are trying to, like be more accommodating, also to disabled staff. Like I would say that, like I've had some quite good experiences, I've had some not so good experiences as well. I would say like the general ethos of the environment of the employment environment is absolutely ablest. Right, because when you've got precarious working conditions, and like you don't respect staff very much, like you're not gonna like suddenly be like disability accommodating. And I think that is the real interesting mix. And I'd be interested to see whether you guys see this in companies as well. Like we're now at a stage in lots of areas where it's just much more politically correct for an organisation say something like proper and what we'd want them to say about disability. Like, did they change their actions? Like not necessarily, is it any better to be an employee in the organisation as disabled, like with a disability not not necessarily at all unlike? I'm like, what does that make it more insulting or less. And I really want to kind of compare it to that. Like, like, I think we need to this is this is this awkward position as well, because we want to celebrate, like those commitments people have made and we don't want to rain on the parade. But it can, it can lead to real division but with lived experience, right, which was another reason right touching on the beginning of our conversation, I'd be interested how you are you guys see that because you've seen this, like, lived through a real transition and like the the public declarations, about disability point big organisations. And like, whether that's how you relate that to the the actual experiences of disabled people within these organisations?
Phil Friend 25:52
I'd say that, I would say and I genuinely mean this, I think things are very different now, for large employers and not so large employers. They've kind of got the message and and like you were saying, Peter, from your own experiences, there are times where you come across stuff you get, or you're never still doing that, are you and then you come across something else where you think bloody Oh, that's so innovative and clever. And why hadnt we thought of that, I wanted to pick up your question and move it a bit. And see, I think one of the great things about you is that you have clearly got a severe condition which you have to manage. You spent, I think four years in Bangladesh, not famously full of innovation, from my stereotypical view of Bangladesh, into, you know, you've lived your life having to manage all sorts of situations where the infrastructure and various other things may have been lacking, and kind of marry that to what you were just saying about what goes on in some of the big organisations that are supposed to help. Even they discriminate in some ways against disabled employees. But can you help me understand how I think our listeners would really be interested to know how you managed living with a very severe impairment in environments which clearly were? And that kind of reflects on what you've been saying earlier about? The poetry of that, the kind of fun of that the sheer excitement of that
Simon Minty 27:29
You're gonna answer in a song for us, Peter, Bangladesh would be lovely.
Peter Torres Fremlin 27:35
the Bangladesh she's would the Bangladesh is would love that. It really is. It really is a culture. Like we were doing a training programme once, it's quite boring. And then we have lunch, and then like, oh, let's sing a song. And say, like, I can't sing, but it would go and we bang like, guy, just like I sing in Bangalore. And then there's this celebration. It's a celebration of the culture, which is the aspect that really brought me to Bangladesh, I learned to speak, I learned to speak Bengali, I really fell in love with the place. Um, I think sort of taking a step back on like, severe I think sort of, I wouldn't wouldn't use that myself. And when I first went to went to Bangladesh, I think if we're going to use terms like that, I would be in the moderate camp. So like I was I was walking like slowly and had difficulty with stairs. And like, I really like just just to be very concrete I'd been there once to teach a bit of English and and like somebody that will been set up for me, so managed. And then I went back and was that I'm gonna study by Bengali for six months. Like week two, I realised everywhere has steps. And I'm like, What on earth have I done? Like, I can't do anything here, right? Week three, I realised that anywhere I go, someone is going to help me up the steps. And it is a beautiful confidence to have in a place. It's partly because I'm a white foreigner. But it's not just because I'm a white foreign. It's also partly because I'm a man. But it's not just those things like some, some disabled Bangladeshis get that assistance, some don't, which isn't quite the like the interesting dynamic we need to look at. I ended up calling this like the soft accessibility rather than the hard accessibility. And I think Phil just to sort of also represent like, like Bangladesh pride. Bangladesh is a absolutely a source of innovation. Like I, I was looking for innovation, I wouldn't look to Silicon Valley, which has a huge infrastructure for it. And a huge infrastructure for like, you have an idea and you get connected with an X, Y and Z. And like millions of dollars to do it. I would look to poor communities around the world because people are hustling and and sort of making do with them. with what they have, and finding new ways to do it in the same way that I'd also look to disabled people for innovation. So Bangladesh is one of the development success stories in its journey, like out of being the, like, literally, it was sort of the breadbasket was perhaps coined for description of Bangladesh in the 70s, when it became independent, and it's real sort of it's it's a real case study of, of development, and the disability movement there has lots of have lot has lots of vibrancy for it. And that was actually what connected me to disability issues. So there was a lot of inaccessibility, there was a lot of getting lifted about the places, and there was a bit of, like, walking on roads I wasn't comfortable to walk on. And there was a little bit of falling off cycle rickshaws, but like not wanting to the floor, right, like just under the lower part of the cycle rickshaw, and that's like, relatively okay. Right. And then the other leg, I mean, the sort of, it's, it's, it's interesting after my English, then lift in lift in Egypt for four or five years. And there was the kind of same question, a colleague said to me, like, well, what are you going to do, it's really, it's really inaccessible, again, in Egypt, as of mostly, mostly walking, and then using a car and whatnot, as they were like, when I go to a new country, like I need to know whether that assistance will be there. So like, in my first week in Egypt, I didn't yet speak any Arabic, I was turning up at the Arabic class. So day three, I turned up in the Arabic class, my first week, the someone from the building, shouted across the street to the taxi driver, that I needed to help up the step. And I'm like, well, with a culture like that I'm gonna manage. Right, so there's that there's that other angle. But Phil, I really appreciate you. You asking because it is quite, it's an interesting factor about my international experiences, one that I've thought about a lot, but like, its most colleagues don't ask and they kind of like, when they see you doing it, they're just sort of assume that it's like, oh, he does that now. And so really, I really appreciate that chance to get to, to get to talk about
Phil Friend 32:24
what struck me about your response, which perhaps we should listen to over here is, my line is if I can't get into a restaurant, because you haven't built a ramp, you're not carrying me, I'm not going in, I'm gonna go somewhere else. Whereas in Bangladesh, we don't bother to adapt the buildings we just carry you in. It's a completely different solution to the same problem. And I kind of like that, because I think there is something genuinely pleasant about being offered and assisted to do things. Because there's a relationship between you and the helper, which otherwise you would never have. I'm, I'm really, you're suggesting to me that I now need to lead a movement, which demands everybody carries us in, and is nice to us kind of thing.
Peter Torres Fremlin 33:13
But Phil I would maybe like to separate out a bit because the late the guy carrying is not the guy that built the building? No, no, no, absolutely. It's a separate room. It's very, and often the people like hanging around helping out other people that might be less privileged, economically, but you're totally right about that. relationality of the culture, I do get sort of good assistance in the UK, but for instance, let's say when I fell over in public, in some countries like Brazil, people will run to assist you. In the UK let people look at you like nervously and a bit scared. And then like you kind of have to do the work this massive generalisation. But you have to do the work of like, they just a bit of charisma, and say, and then they look really relieved if they you've asked them for help, right? Because like, because they're like shit like but I don't want to be awkward, or maybe they'll be upset like effects. Like, we get into this kind of whole British culture about it. Whereas in other places, I mean, in Egypt, many disabled people report like the problem is people just start helping you without asking. Yeah, right. I'm obviously huge generalisations here, but there are those there are those differences other cultures have that have that instinct relationality and independence, independence getting up in each other's business in a way that isn't so so present in public spaces in the UK. And it does make it's a different it's a different disability experience. Over obviously, we do want the neck we want like both right? Yeah. Oh, absolutely.
Simon Minty 34:57
I was struck by that conversation and I also took from what you said when you're working with ILO or HI and you learn the rules. I noticed when I go to different countries, you learn the rules, how it operates. I choose what my battles are. I've never been in Hong Kong many years ago trying to go up the stairs leaving the ferry, and I pulling my backpack. I was backpacking there, and I had it on wheels. And I was three steps up, and suddenly the backpack just sort of floated. And I looked around and there was someone carrying it for me. Now independent me is like, oh, sensible me is like thank goodness for that. So yeah, they're a bigger structure things. I think, if it's done with a warmth, that must have been. I mean, that's amazing. Because I think if I turned up to a country, and every other person who had a disability was being helped, would I be, this is brilliant, or would I be going, I will know this. But you gotta have a mindset that sounds like you knew how to navigate it. And you knew when it was appropriate, and it was, again, I'm not asking a very good question, but I'm struck by it. And I think it's a smart way,
Peter Torres Fremlin 35:55
Maybe I did, Simon, I think it's really important that we look at the soft, I call this like the soft accessibility, not just the hard right, because even if you look, there are plenty of places saying are Phil your restaurant has a ramp, but you needed like some other like just adaptation, just make it work for you. And then they're like, No, we're not doing that. Right. And in that case, we've got the soft accessibility, they, they are going to make the adaptations. I think, sort of the stereotype about Switzerland is very much like this, like, we're going to follow the rules, if you need something outside of the rules. No, sir. It's like it's a great country. If you want someone to hold a door open for you, and you're using a wheelchair, it's maybe not a great country, if you need, like some sort of individual adaptation, again, like huge generalisations, but to get across these different dynamics. Obviously, my discussions with the disability community in Bangladesh, I was saying like, Oh, it's wonderful. We have this soft accessibility, and they were like coming back with things that you're saying, Look, we can't rely on that. We can't just rely on the kindness of strangers and whatnot. But they're also doing it in their personal lives. The most striking story that I can't get out of my head is like a blind friend I had and he was like, catching buses, buses in Bangladesh do not stop at bus stations. They may be do not even stop. So his strategy was to like go to someone that was waiting. And he was like you run I'll hold on to you. Yeah, it's like completely wild. And yes, it there. Then he did. He did like faceplant a few times. And he did. Because they may be on the pavement and you have to run onto the road. And that there was a bit of face planting every now and again. But like it speaks to a dynamic of like, like, an obvious totally wrong situation. But is speaks that dynamic of interdependency. And like, what does inclusion look like? Right? Like when we don't have that physical accessibility, right? There's that like, and how, how there are those different approaches to inclusion and creating that. And we don't need to wait until like, we have made everything perfect following every code and done the investments and done done all of the elevators. And we cannot wait for that as well.
Simon Minty 38:20
Just one sentence to say thank you for rebalancing that as well, because I think we can be romantic and kind of always wonderful, happy. And then you're like, I wonder if I live there. And this is all the time and all the other thing makes it come to less romantic.
Phil Friend 38:33
I'm just struck by how that blind man's experience of travelling on buses and what kind of going back to what you said very early on, in his conversation, Peter, about the kind of cultural, the poetic, the lenses we look through, it would be fascinating to listen to that man's experiences of life, given that some of it was spent doing some quite dangerous and hazardous things in order to travel around. I mean, he didn't not travel. He just found a way. But I
Peter Torres Fremlin 39:08
He really loved it. I was like, he was like, Look, I walk quickly. And sometimes I fall into potholes. And I'm like, Well, what about walking slower. I'm not the first person in his life to suggest that to him. But he was at a stage and he didn't have time. He didn't have time for health and safety. And like, I mean, that's that's sort of saying, like, at different stages in our life. We now
Phil Friend 39:31
his stories, if captured, if we'd had the time and the tape recorder or something, we sit down and just talk there is a life this man is leading that is a utterly,
Peter Torres Fremlin 39:40
Youre totally right Phil. And that that ambition really is motivates motivates me to share those different stories because I've met so many sort of people whose breadth work and like that kind of broader approach to life. Sort of is it Just say I mean for one of a better word inspiring, sorry, sorry for lads on the show, but is really is really fascinating and a different window. And this is what I mean for late yet the world is gonna look a bit different from these different perspectives and things there's kind of like inspired me to carry on carry on trying to bring out those different voices.
Simon Minty 40:25
It may be he is a future guest, I want to get back into some bigger stuff. The World Health Organisation, this is part of the disability debrief, you mentioned it to us as well, the report on the inequality sorry, their report on the inequalities of health for disabled people. The bit that I struck is, you know, we it's the international the breadth of this, which we sometimes forget, and unfortunate it can be, it was about the response to the crisis exposed by the COVID pandemic. And it also mentioned about reimagining health systems. And I think the phrase I read was the missing billion. I love this. And I really liked the title, but there's a little bit inside me, I'm scared of these reports that are powerful, but what actually happens, who reads them? What will be the impact? Again, very poor question. And maybe could you put a little bit of flesh on the bones about this report? And do you have hopes that it will push the agenda forward? improve things?
Peter Torres Fremlin 41:22
Yeah. Now that's that's the question I really struggle with as well. Basically, there were sort of two quite important reports that came out on and terms internationally and gathering evidence on the health situation of disabled people around the world, there's one from the who, and then there's one missing billion is an organisation that is trying to trying to shift these systems as well. Thomas Shakespeare you've had on is, is involved in that, I think, um, they did, as sort of quite, they're making a really good contribution to gather, like the available evidence. On the subjects that I wrote, what you're kind of referring to is the piece that I wrote that tried to bring out elements of those, and I think, sort of forgotten the exact headlines, but it's sort of gaps in life expectancy, between people with with and without disabilities are sort of 10 to 20 years. And it really did a sort of, like, devastating job of showing, like all the issues that go into that, and that was the new thing for me, like, I've been sort of, in my return to England, I was like, well, let's, let's sort of, like, spend some time in the NHS, because I mean, pride, pride of the country. So I've been doing that as a side project. And but it showed these reports showed there's so much out of the hospitals, that informs our health, like our our education, our employment, our living conditions, all contribute to health and in it can get into quite vicious cycles, where exclusion in one area then leads to exclusion another and they both impact on poorer health, that then it compounds the exclusion. So that that bit was quite, quite depressing to read, will they make will they make change? That that is kind of the question at the heart of what I was saying earlier that do these leg declarations by big organisations like lead to tangible difference? I think that we've gotten got to understand these reports in their context that a lot of the WHO report is like trying to get their colleagues to look at things differently, and try and say to colleagues, look, that is the evidence, you should think about this disability when you're doing like XYZ health intervention, who is governed by health, health ministries around the world. So it's also it's also a message, a message to them. The vicious vicious cycle aspect also means that the, like, The way out is if we improve our lives in one area, if we have more access to education or employment, we're going to improve our health as well. It's going to go it's going to go together. So there is that that hope for the way out. As for can health systems like does snake is the healthcare going to be more friendly towards disabled people? That link I don't like? I don't know because it's in obviously better resourced health systems, which would be better for everyone. And some they there's really kind of grotesque discrimination that disabled people will just stay excluded from like, even going to hospital and because of their situation, whether they can't reach it, or they can't afford it, or a doctor looks at them and says that you're not you mate but there's also not that much more complicated. discrimination that I'm sure you guys are very, very aware of like, like, our patients, are patients listen to, can the doctor see, like our health conditions and our disabilities in their totality? Or are they just gonna sort of treat us as a standard patient, and my sort of little sort of extended tourism I've been doing with the NHS. Obviously good and bad examples within that, but sort of a bit of scepticism about how modern sort of production line medicine is going to be able to be adaptive to that. And it's like, there's, there's a deeper problem and like how, how medical organisations are structured, how people are trained to their speciality, the hierarchy of specialities and different disciplines, within within hospitals, and the impact on even in very high resource settings, they don't listen to the patient. So that I mean, that that seems to me a much a much. And some of those issues, go beyond what these reports are suggesting, which are more like a reformist way, we've got a system, let's make it a bit better. Let's do an awareness training, let's put a ramp in, let's sort of make it sort of bit more accessible in these ways. But like health systems, if they are even the systems, as that piece asks, are, like really, sort of, to have like, much more broken and exclusionary aspects to them, that reform won't, won't fix, like, and I sort of get back to that, get back to that question of why even in a high resource setting, do medical professionals find it difficult to listen to patients?
Phil Friend 46:51
I think we're getting near the end of our time, which is always scary, because there's like 20, other things that we want to talk about. But I suppose I've always wanted to get a feel for how someone like you, Peter, who's travelled extensively lived amongst different groups of people, particularly disabled people, obviously, and lived a life abroad in all the ways you have. How you see disability worldwide, in the sense of, because when you were talking about health there, I've always felt that the reason that my doctor doesn't perhaps listen to me much is because he doesn't see my life as having much value. Because obviously, I'm in a broken body and all that stuff. I'm wondering how you see that flying your helicopter across the planet Earth and having worked in so many bits of it? What's your take on disability as an international thing? is, you know, am I Are we just as useless at the value valuing people here? As we are saying, I don't know, Peru? Do you know what I mean? Does that make sense? That kind of question.
Peter Torres Fremlin 48:05
It does thank you for broadening that that, like our view out. And you do see a lot of similar problems in different places, sure about that kind of that sort of grotesque discrimination and the harms, the harms that can come about sort of I love being part of this sort of international disability work movement, sector, whatever we call it, because I know that like every country in the world, there is someone that I can connect with, because they are plugged into, like work related to the UN Convention, or they're plugged into, like this, this this way, we have of talking about things that coming from the social model view and then obviously, are different positions in relation to that. Say, I love it for that scope of connection. I think that is that is a sort of, like a tiny minority of disabled people in that country that are plugged into that movement and that identity like, like this country, within this country, it's much more it's much more extensive, I would say than many. But it's a real that's that gives it a sort of real a real joy to be connected to brothers and sisters around the world seeing things, seeing things in similar similar terms. As for the experiences disabled people, that I think that sort of incredibly, incredibly diverse and it was kind of like it was this this conversation also helps me reflect on like, Are there different forms of inclusion, those different forms are going to be sort of more or less preferred in different cultural contexts. Different ways that that sort of people dream about living their lives and different sort of barriers that are faced to that and solutions that they find. So, like, I think that make part of the aspect of what I'm trying to do on the debrief is to try and sort of take a really global view, but also not to try and like not to seek too many similarities. Because then you get a little bit into, like generalising too much, and you don't see are the differences in people's lives and these kinds of complications that we explored today.
Simon Minty 50:36
I'm finding you very quotable Peter, I am a magpie sometimes, and they you pick up little lines got all that, like, encapsulate something very well. So I appreciate that. And I think that quote "grotesque discrimination" is one of them. It's not a great thing to talk about. But it's a really powerful, it just takes it to that level. I'm frustrated that we're getting towards the end. I have a sort of twee question, but it's sometimes when I'm on board with one of the last questions, and we say we're gonna give you a magic wand. And you can by waving this wand one have, I don't know, one single huge shift or something that you really want to change. Impossible to answer that. But if you did, on the spot, have to come up with something. What would what would your magic wand what would the what would the thing be
Peter Torres Fremlin 51:29
Simon, I think it's something that sort of at the heart of this conversation, also, what makes this conversation possible would be like the connection of disabled people with other disabled people. I'm not too fussed about what term they connect in that. But I've seen like through these travels, the power and how it transforms lives, to meet people facing comparable challenges to your own, to get out of the isolation of thinking these challenges are just yours to deal with. Right? There's an extraordinary power to that it gives the culture and the poetry in the song, the song to it, it's what was brought us here together as well today. And as I've seen, sort of whether it's a club playing wheelchair rugby, whether it's a group of disabled people in our town in Bangladesh, that a meeting, and I was really lucky to be sort of meet with them in town . And that, that changed my life and changed the possibilities for it. So it's those, it's those connections. And this just to sort of take us out of the magical wandering into my head sort of bureaucratic comments, I said, there's been more attention from bureaucracies to disability internationally than there has been, I don't feel they've been investing in this mobilisation, I think they've been sort of investing in kind of research programmes and meetings, and big reports, I don't see them investing in night. Look, we want organisations to sort of go out and have something in this town and do meetings with other disabled people, and see what comes out of that. But this is this is where like, like, tell me, this isn't where we came from. Right? Tell me, this isn't why we were here today. I really want I really want that it's the, it's the intervention I most believe in, like all the other interventions can be linked with that, and whatever lead but a training, or a grant or a support or whatever, doesn't change your life, in the same way that meeting other people that connect with and give you a shared sort of validation and give you a shared shares love and purpose in life.
Simon Minty 53:46
One of my most nourishing moments is when I do my international work, and I'm visiting places rather than living. And then I run into a bundle of local disabled people, where they're activists where they just been invited doesn't really matter. And the two things happen, we find our commonality, the barriers, the identity, whatever it might be. And then at some point, I'll do a joke. And they laugh, because they, and I'm like it, they get it. It's the same we are with and it doesn't matter what country, there'll be a moment where there's a little bit of humour there. And it just, it just warms me. There's something really special about that.
Phil Friend 54:22
I think we have got to end now. But I just wanted to end by saying piece of what you've done for me. And I hope for those that listen to us, is to remind us that there is a huge world out there and we're a very small bit of it. And you triggered a memory that I have as live with me for a long time. I went to Vancouver way back for a major international disability conference and I was with a bunch of Canadian men, all men chatting away and this woman an Indian woman joined us in a wooden wheelchair. I've never forgotten this and we were all talking about our power chairs and all this kind of stuff. And we looked at her and said, What do you think about this conversation? You said, well, there was a bit of a problem, which is where would we charge it. And she told us about her village, she travelled overland to get to Canada taken her about three weeks because she couldn't fly. So as you come by ship, a village had clubbed together to pay the money for her to come. What you're reminding me of is that there is all sorts of stuff out there that we need to remember. And her story was a very poetic story. It wasn't one of she talked really movingly about her life in her village. And it reminded us and me, particularly, but the Canadian guys I was with, that we really should not take things for granted, we need to reach out and look at what's going on in other countries to see if we can help there. So that's why what you've done for me in this conversation is to bring home to me that whilst I am locked in my little world, trying to make sense of it all out there, there is all sorts of challenges that I so I'm grateful. Thank you, Peter, for joining us and for sharing your thoughts because it's this epic stuff. And you've led a very interesting life.
Peter Torres Fremlin 56:18
No, thank you, thank you both. It was such it was such a such a pleasure, we could obviously sort of talk about power chairs a lot. There are some situations right now you've got the charging, but like, you don't have the roads or the transport. So you might prefer more lightweight one. As you as you know, but sorry to get into details. That is, again, the disability lens pivoting between those details. And those bigger things. It was it was such a pleasure to share, to share with you guys, I knew that we would be able to sort of hang out and hang out and have fun, I really appreciate it.
Simon Minty 56:51
I suspect in the next couple of years, there'll be a very big story or very big report or something. And maybe we'll have another conversation. And we can delve a little bit deeper because I like the depth. But I also like having those chat. So thank you very much for your time, Peter. Really appreciate it.
Phil Friend 57:06
Thanks. Great. Thank you, Peter.
Simon Minty 57:09
I knew Peter would be an interesting person to speak to really appreciative of his time.
Phil Friend 57:15
Yeah, I mean, I just love the angle the Peter brought, which is the sort of international looking at other countries some of the issues they face. And also marrying that up with the current cultural stuff of poetry and think as he calls it, different lenses. Interesting. Interesting. Take, yeah, good stuff.
Simon Minty 57:33
And I like his bit about that. I said it in the show the when you do meet with other peoples and you find the commonality of is, you know, there's differences, but the commonality doesn't matter where you are in the world. And that's really something quite special.
Phil Friend 57:46
And I am going to go around now and just ask people to help. I'm just going to wait for people to help me. I'm not gonna I'm not gonna bother them anymore. All these years? Interesting angle, wasn't it that it's natural for many countries cultures. And so just to just to help, it's the way it's done.
Simon Minty 58:06
And the flip side, when you fall over here, no one helps you because we're all embarrassed with fear. I mean, that's ridiculous. When you look at it that way. We know we're generalising. But yeah, something in that. Okay. So if they want to go and have a little read of Peters Disability Debrief, there's a load of great stuff in there. We will put the links in the show notes. If they want to drop us a line.
Phil Friend 58:31
Simon Minty 58:34
And obviously, social media with Facebook, LinkedIn, Twitter, Instagram, or Beacon do Beacon and then The Way We Rolll, you'll find a whole load of stuff. And you can subscribe to our mailing list so you'll never miss a show.
Phil Friend 58:48
Yeah, and although we haven't done letters and stuff today Letters! emails today. Do keep telling us what you think about the show and keep us informed. We'll try and mention a few next time.
Simon Minty 59:01
Your pigeon has just arrived because he sent me that message.
Phil Friend 59:03
It's an owl.
Simon Minty 59:06
That's Harry Potter. I'd love an owl.
Phil Friend 59:10
I'd love an owl. All right. Take it easy Simon.
Simon Minty 59:14
Thank you. Nice to see. Thanks for listening everybody.
This is The Way We Roll presented by Simon Minty and Phil Friend. You can email us at firstname.lastname@example.org or just search for minty and friend on social media. We're on Facebook, Twitter and LinkedIn
Transcribed by https://otter.ai