Episode 1 - Universal Design and…. Rethinking Disability

How might we think differently about disability – and ability – as a way of opening alternative ways to design for everyone?

In this first episode in the 3 episode series Universal Design and… your host Jos Boys and her guests will expand, stretch and challenge the concept of Universal Design. They will shed light on how stereotypes of disability (and ability) limit ways of designing for diverse bodies and minds.

Rather than treating disability as a fixed category, our first guest – Camilla Ryhl, Research Director at the Bevica Foundation – talks about broadening how we think about disability, access and inclusion, guided by the United Nations (UN) principle: No One Left Behind. The next guest Beata Hemer - Architect and PhD candidate at the Royal Danish Academy – addresses the need to think Universal Design in relation to broader challenges such as the climate emergency and social inequality, instead of viewing it in isolation. A crucial part of rethinking disability is learning from the diverse lived experiences of disabled people themselves. The last guest Helen Stratford, a UK-based disabled artist-architect who lives with chronic pain, explains the concept of crip time, spoon theory and how her performative work in the public spaces challenges social norms. 

This podcast helps us think about how to do disability differently -  by considering concepts such as fitting and misfitting and starting for difference as methods for valuing the richness of human bio- and neuro-diversity: and by offering examples of how our different ways of being in the world can act as a creative design generator, rather than as a problem for designers.

The podcast Universal Design And… is made by The Royal Danish Academy, celebrating the guest professorship of Dr. Jos Boys from 2022-2025 and hosted by the architect and activist herself. The professorship was funded by Bevica Foundation. The podcast was produced with the help of Rakkerpak Productions.

Participants

Jos Boys (Guest Professor at the Royal Danish Academy 2022-25 and co-director of The Disordinary Architecture Project), Camilla Ryhl (Research Director, Bevica Foundation), Beata Hemer (architect, educator and PhD candidate, Royal Danish Academy), and Helen Stratford (UK-based artist-architect with lived experience of chronic pain). 

English transcription:

Universal Design and…. Rethinking Disability

Jos Boys: Welcome to this podcast series, Universal Design and…. Across three episodes, we'll be exploring what is meant by the concept of universal design and what needs to be done differently to make our products, buildings and surroundings more truly accessible to disabled people. Universal Design and …is hosted by me, Jos Boys. I'm co-director of The Disordinary Architecture Project. That's a not-for-profit organisation based in the UK, platforming disabled, neurodivergent and deaf artists, designers and architects. And I've had the great pleasure of working with some staff and students at the Danish Royal Academy in Copenhagen as a guest professor over the past three years. So, we wanted to take the opportunity to share with you some of the things we have learnt about rethinking design and disability. What does the expression universal design mean? Well, it's based on a seemingly simple principle that all products, buildings, and environments should be usable to the greatest extent possible by everyone, regardless of their age, ability, or status in life. And it's an important aim. But since it was coined by an American disabled architect, Ronald Mace in the 1980s, architects, designers, and their clients have struggled to implement universal design in any meaningful way. In fact, here we are over 40 years later with disabled people still facing considerable access barriers in all aspects of their daily lives. So, the podcast Universal Design and … wants to understand why this is and what architects and designers, both disabled and non-disabled, can do about that. And we're interested in expanding and stretching and challenging the concept of Universal Design and taking it to some new places. In Episode One, Universal Design and … Rethinking Disability, I'm talking to some of the staff and students from the Royal Danish Academy in Copenhagen about how we might think differently about disability and ability as a way of opening up alternative ways of designing for everyone. To do this, I'm here at the Royal Danish Academy in Copenhagen talking to some of the people here about how they try to do disability differently, before returning to the UK via Zoom to catch up with one of the disabled artists who sometimes works with The DisOrdinary Architecture Project, and has worked here in Copenhagen, to get her perspective. First though, I wanted to talk to Camilla Ryhl, Research Director at the Danish Bevica Foundation - the organisation that's funded my role at the Academy - to get her take on universal design. Universal design - it's in the title of the podcast and it's a very important concept, and I think Camilla is very central to how this concept is being taken forward here. So, would you like to just introduce yourself and then tell us a little bit about what you mean by universal design?

Camilla Ryhl: Yes, thank you. My name is Camilla Ryhl. I am trained as an architect here at the Royal Academy of Arts in Copenhagen. And I’ve worked with research and teaching for 25 years, with universal design being the consistent focus of my activity.  Now I am the research director at the Bevica Foundation here in Copenhagen and I'm also head of our Universal Design Hub, at the Foundation. And, when it comes to universal design, how do I understand or how do I see universal design? Universal design to me is a value-based design principle that can be used to design all aspects of the societies that we live in and share. One of the significant aspects of universal design to me is the understanding of what it means to be human that it represents; the fact that universal design at its core acknowledges that living with different and changing abilities throughout a lifetime is something we share as human beings. It's part of being human. So Universal Design in its sort of core doesn't categorize us with or without disabilities, able-bodied or disabled, but acknowledges the fact that living with impairments and different sorts of disabilities, degrees and types of disabilities, is just part of being human.

Jos: And there's a phrase that I've heard you use a lot, which I think is really fabulous, which is about ‘nobody left behind.’

Camilla: Yeah, I think universal design is also, both in the way I understand the concept, but also the way that we work with it in the Bevica Foundation, is that we see universal design and the value that it represents as a means to ensure the pledge ‘to leave no one behind’. That is most significantly present in the UN Sustainability Goals, as a pledge to assure that no one is left behind in the sustainable process and development. But it's also sort of a rule of thumb or a way of thinking, also in design, to assure that when we do design our societies as you know - it could be our built environment or product designs but it could also be many other aspects of the society - we make sure that no one is left behind in our designs, or our processes, or our approach towards the relationship between design and persons or people.

Jos: And I know you work across many different disciplines, so not just architecture and the built environment, but obviously with my background in architecture I'm particularly interested in where you think the concept of universal design is at the moment in architecture as a discipline? I guess both here but probably in other countries too.

Camilla: And I think the answer to that, is that we have to somehow acknowledge the fact also that universal design is a very dynamic concept and even though it was coined and grew out of the US and it was Ron[ald] Mace who was sort of acknowledged for having coined it back in the 80s, it's kind of developed and been spread to the entire world. So, we do understand it and interpret it, practice it differently in different regions of the world. But I think that if we just look at the Nordic region, then there are even differences there; where in Norway we know that they work with concept of universal design, very sort of structured and well-organized and ambitiously from a top-down approach since early 2000. While in Denmark, the concept of universal design also in architecture has kind of taken a lot longer to actually latch on.

Maybe because, I think, because of timing, because of dissemination and also communication, and the fact that what is universal design and how is it different from the way we work with accessibility in the Danish context. So currently, I would say that in the Danish context, universal design is much more widespread and it's growing in knowledge, but also in practice. That we see also just within the architectural field, more and more firms, but also individuals, and teaching activities, sort of latching onto universal design and investigating it, challenging it, discussing it, but also practicing it. And I think of course I think that is wonderful to see.

Jos: And I guess I mean because my experience is very much studying and teaching architecture in the UK, I feel like even accessibility you know let alone universal design was something that really never, it was certainly nothing that never came up in my architectural education. But also now that I work across contemporary architectural education and practice, that its still, surprisingly, even people haven't heard of it. Or if they've heard of it, they don't really know how to implement it. So, I guess I'm very interested in that, and it's something that you're doing all the time, which is what are some of the ways in which this, as a term, can be made kind of concrete and something where people understand how to implement it. And I was just thinking that, you know, some examples of that would be really helpful.

Camilla:  I think that in the Danish context which is where we also operate and which is where even if I worked internationally it's kind of where the base is. So, I think if we just look at it in a Danish context, I think it's key that we keep talking and discussing universal design in relation to the accessibility concept. Because both the way we work with accessibility, but also the way we, the potential, the possibilities that universal design offers in the Danish context is so very different from the accessibility approach, which is much more sort of regulatory approach and much more minimum requirements and legislative way of thinking….

Jos: And focussed on disabled people only…

Camilla: Yes, and which is also how I was introduced to it in school, very briefly, and all about sort of wheelchair dimensions and very sort of measurable sort of solutions. So, I think we need to keep talking and understanding universal design as something very different from accessibility and basically very different in the way that you can understand and work with the human body, and what it means to be human in your design approach. And I also know, I of course often hear people sort of saying, but it's, you know, how can we work with it? What is it? And to that, I would say that there is, I think basically we need to understand it and discuss it on these three levels, which is also something I've introduced in my own work. That we need to be clear -do we understand it as a value or are we talking about it as a process or as a tangible solution? So already there, sort of agreeing what are we talking about, universal design in what context and scale. And then as for sort of implementation or practice, then I think that there are tools. There are the original seven principles and Steinfeld and Maisel have developed the eight goals of universal design; and those two tools are in themselves very different.

Jos: There are probably some listeners who don't know what the principles of universal design are. Can you just briefly summarize them?

Camilla: Yeah. The seven principles of universal design are one, equitable use; two, flexibility in use; three, simple and intuitive use; four, perceptible information; five, tolerance for error; six, low physical effort; and seven, size and space for approach and use.

Jos: Yes, thank you.

Camilla: But there are also, that's one of the things I see in Denmark now, is that there are lots of firms that are developing different implementation and interpretation tools. So, I think it's important to keep that open mind and testing, which is some of the things, one of the things that universal design offers us now in Denmark is that I believe we need to be true to the interdisciplinary definition that lies in the CRPD, the Convention of the Rights of Persons with Disabilities. But how to interpret it is still, there's still room for experimenting and developing different tools without getting it wrong. So that's how I see universal design in the Danish context, offering a lot of potential for, also challenging an architectural practice and an architectural practice in its way of understanding who are we designing for.

Jos: Yes. And one of the things I love about the way you talk about it is that rather than having universal design as a kind of fixed definition, that you do see it as a kind of generative idea and you're just as interested in people who are interpreting it widely or who are challenging and redefining what it might mean and even developing other  terms - connected terms - like you know disability justice, or how those things might be part of a kind of a wider picture and I guess it'd be really nice to hear a bit more about what sorts of, in the future really, what sorts of things you would like to support these particular approaches and methods. or whether you're thinking of where you think perhaps there's more, you can see very productive ways forward.

Camilla:  Yeah, I would love to see a lot of development, and with that, I also mean experimenting, into process, into different tools, into both sort of the planning and designing of processes, but also developing tools or ways of working with universal design’ so that the process in itself also acknowledges universal design as a tool, designing, universal designing of the process itself. Because I think that if we are to not miss the moment of universal design still being a relatively new concept in the Danish context, I hope that we are able to use it as an offset and as a means to challenge the way we work in our architectural practice, which might result in a few revolutions here and there. Whole different ways of approaching our design processes. So, there I hope that we would see a lot more development and new ways of working with universal design as a process tool.

And then maybe - because I'm an architect - so how do we actually, what does it tangibly mean as a result? But also challenge that and make sure that we don't interpret and practice universal design as we do accessibility in the Danish context.

Jos: That was really interesting to think about  - because you know that you and I have had discussions about universal design as a place to start from, and I really support you in what you're saying and I think that that policy setting is so vital, if one's actually going to make really concrete improvements then you have to have it working at that kind of policy and strategic level. And I think what's been very lovely for me in working with you is that it also has this, you know this, let's experiment let's see where it takes us, let's see what things we can do and that it's been possible working with all sorts of different people at the Academy to explore with students different kinds of methods and approaches - quite a lot of them very experiential but also very much around exploring different kinds of creativity, and I think all of those things fit within your kind of, the way that you, this very capacious way, that you talk about universal design. So, thank you very much for that that's really helpful beginning, thank you.

Camilla: Thank you.

Jos:  What's been really interesting about working with students, teachers and practitioners here at the Academy is how many different critical and creative methods are being tested out, in order to find ways to properly embed issues around disability access and inclusion. My next guest is Beata, an architect and teacher based here at the Academy. We've been working together with her students recently to explore issues around disability, and social and spatial equality. Beata, could you please just briefly introduce yourself and then tell us about your interest in this area?

Beata Hemer:  Yes, thank you for inviting me to this to start with. So, I've been teaching at the Masters Programme Political Architecture, Critical Sustainability, also shortened PACS, since 2018 - I graduated from the same program in 2015. And the past two years, yes two years ago, I became co-responsible for the programme together with my colleague, Niels Grønbæk. I mention this because I had much more influence on the long-term planning and on the curriculum and learning goals. I should also say that I have stopped teaching. I'm not currently involved in teaching since I started a PhD position, also at the Academy. But I guess what we will talk about is more what happened one year, one and a half year ago when we started to collaborate, right? And I think for me, disability and access, I haven't as such worked with it, and I don't have experience of it myself either, but I think they are part of somehow a fundament, the fundament of my architectural practice, and also teaching practice, along with other issues of inequality and struggles. I would say that they are part of an intersectional lens, so where class, gender and ethnicity also are important factors. What we say, or what I say to students at PACS is that to identify, to work with what political architecture might be, is to sharpen this lens and to be able to read our built environment or spaces with this lens. Rather than asking the question, what is political architecture, because we see all architecture is political in a sense, and this question of how it is political. We ask the students to ask the question, what is not made possible or what is made possible through this particular design of a space? And I think within that question there's an obvious concern about access and disability, but it's also interlinked with other issues, of course, as well.

Jos: That is so interesting because that's exactly, I think, what we've been thinking about in terms of the different ways of working around disability. My background is in architecture and it is still, disability is still so much seen as this kind of simple technical category. It's like it's asocial, it's a cultural, it doesn't have any, it doesn't have anything to give back to the world. So, and it isn't connected, it's sort of disconnected from other kind of issues, architectural issues, like whether it's the climate emergency or other social equality issues. One of the things that we talked about and that came through in working with students was how to talk about this matter of social and spatial equality; and we talked about concepts around fitting and misfitting which come from a disability study scholar called Rosemarie Garland-Thompson. The idea of misfitting is based on the notion that access and inclusion is always relational. It depends on the context and setting so you misfit when the world around you does not match your needs. Needs aren't just functionally embedded in people's bodies but they are something that are connected to what you're doing at the time and who you're doing it with. And when we talked about that, we also talked about how that's somehow connected to retrofitting and to the idea of kind of adaptability and flexibility in how buildings are coming to be designed and in relationship to the climate emergency. Can you talk about that a little bit more?

Beata: Yeah, of course. And I recall the conversation we had, I think it was the very first conversation on Zoom when I was inviting you as giving a lecture as part of a lecture series in 2023. And that semester, that particular semester, actually a study year, we at PACS, we worked with the concept of degrowth - both as a way to better understand the economic  system that architecture is entrenched, embedded in, and how it possibly could be otherwise. So, understanding these systems, organization of economy and so on, but also to understand the spatial and material consequences of degrowth, of a possible degrowth paradigm coming. And I recall that it was the conversation we had and this of misfit, misfitting was somehow that we linked these interests of ours somehow and how the economic growth paradigm that we currently are part of are connected to ideas or ideals of productivity, strength, of being able, even of masculinity, of a certain work ethos, I guess as well. And I think connecting disability studies and with, let's say, a critical perspective on the economy and these bigger narratives that we are entrenched in, I think to think in these kind of interconnected scales and to use maybe perhaps the same words when analysing and understanding these issues of inequality and injustice, I think it can be really helpful and spark a lot of creativity because it is interconnected and we also need to have these kind of struggles joined. And I think, for example, the ideal of this able-bodied fit and productive, often masculine body seems to be very destructive, if we design spaces following this idea. So, bodies diverging from this ideal, that would be most bodies I would say, they find themselves, as you say, misfitting. The environment is not designed for their body or it's difficult to maybe also appropriate it or change it, modify it according to one's need. And I think the same could be said with, I don't know if we can frame it as the architecture or architectural economy, but that if it follows the same ideals. I would say it would mean that we would build more in order to increase GDPs or values. And we would suppose or expect that materials can be strong and maintenance-free and last forever. And we would be demolishing old buildings and building new and new. So, there's this kind of newness paradigm as well. And I think that is equally destructive, but on another scale, a more planetary scale.

Then I think also this narrative is also, and this economy is also destructive as it disables even more people through stress and inhumane work and information loads, et cetera. My point, I guess, is these dominant narratives that we somehow buy and work with and under, there are these narratives marinated in productive, able-bodied masculinity. I think other values and ideas must be the foundation, a form of foundation for our creativity as designers and architects. And thinking of retrofitting - on working with these buildings that might be seen as misfitting in a growth economy or in a growth paradigm that should be demolished if within this logic - to think of these buildings and adapt them and host, and give them kind of new life, new form. I think feminist methods of listening, of making silent voices heard, of relationality. I don't know, I'd like to think of that as something that could be used or be the kind of ethos from the standpoint we work from when working with this building stock that is so diverse and so misfitting somehow. So yeah, there was just some links there somehow.

Jos: Absolutely. And I do, I mean, I think for me, the working with you on it made me think a lot more about how that adaptability, not demolishing buildings and retrofitting was something that is already really influencing a kind of younger architectural generation, I think, they're really interested in that. Somebody said to me, you know, isn't it when you look at old buildings and you look at how you might retrofit them that generally there's a kind of sustainability audit, that you go in and you look at what the materials are and you think about what the implications are, what you remove and what you replace and what you save. But that you could simultaneously do an access audit actually. You could also look at how accessible the building is for different kinds of bodies and minds and what needs to happen, and what’s possible in terms of retrofitting in that way too. And that felt to me like a very practical way of just building these things in, as a kind of continuity and not seeing them as in separate categories, that somehow are dealt with separately. You deal with sustainability throughout the building project but somehow access is something you add on just at the end as a kind of technical problem. So I feel that's really useful. But the other thing I think that comes out of this is that a lot of disability activists and theorists, scholars, are really engaging with the climate emergency as something that is actually disabling more people, that it is itself a disabling experience and that along with other kind of inequalities in society such as poverty and appalling work and living conditions, all those kind of normative things you've mentioned around us just supporting these kind of very productive, very individualistic, very entrepreneurial bodies as they kind of crash through the world and never stop working, working, working - that starting from disability and from difference, from non-normative bodies and minds, feels like a very productive place to also be thinking about that, thinking about how we can operate in different ways into the future. And so I guess I'm interested in what you think about that, about the future in terms of how that might affect how we educate architecture, architects and other built environment professionals, how we change the way that architects practice, as you say, towards a more kind of political architecture.

Beata:  Yes, thank you for that. I think that there is so much in your question or in your description there that I'd like to add on to or continue. A few things that might point towards how I imagine a future or what important things that we should take with us. I think the process, you mentioned that of not seeing disability or accessibility, let's say as an add on in the end of the process. I think that's really important that these experiences and these knowledges also are with us from the very beginning of such a process. So, the design teams should be much more representative of the population, let's say, and in order to be helpful and curious on each other's blind spots and able to learn from each other, I think that's really important. Maybe also thinking process as something that doesn't have to follow a very smooth from A to B type of process, but it can be much more messier and slower; and maybe within such a more messy practice or process it would maybe be more fun and creative as well. But I think, for sure, it would also be a process that would be more quite misfitting in a growth economy logic. So that rethinking process, rethinking who are you working with from the very beginning of design process is really important. I also think that you mentioned the word sustainability and how that when working with a building, practically with a building, let's say that it might be the kind of the materials and the reuse of materials and so on that are primarily focused somehow. And I think also the very word sustainability, maybe it's not that much used any longer because it's also being quite empty somehow. And the thing that happens when you use words as branding labels, when you use them separately, for example, at the Academy now every year when students are graduating the projects, you can tag them with the UN Sustainability Goal tag. So, we really know which issue are you addressing. And I think that separation and isolation of issues, of problems, of topics that we have to work with, that's really dangerous.

We must be, and I think I said that before as well, to join and to kind of link these, see these struggles as interlinked. And following that, this of the joint struggles and interlinked professions and practices, I think it's really important, and this is maybe me just stressing something that people are already doing, and have been doing for decades, but that of collaborating with activists and academics in other fields. I know that it's said that architects, we do work interdisciplinary, but I think quite often it's within with engineers or with others in, let's say, a generic build process or design process. And I think it has to be much more broadened and include people on the ground and activist community groups. And yeah, I guess that would lead to what I said also, messier, more difficult, cumbersome processes. But I think, yeah, I just want to take the chance to stress that as well. I think it's so important. And also to invite non-architects to the design and education. I think that's also something that we as educators, we actually can do a little bit, contribute a little bit.

Jos: Yeah, absolutely. And I do, I mean, for me, what's really interesting under this theme of the podcast of rethinking disability is that obviously some of that is about just really emphasising how important it is to think about access and inclusion kind of throughout the whole process and that it's not just this rather boring category that somehow has to be dealt with a kind of technical problem. But I also think talking to you that actually it’s much deeper than that - it's about practices and this notion that we need to actually look at ,we need to think about messy practices, we need to think about how practices can really change that they have to change a lot before …that that's kind of somehow part of, for me, that's part of how we begin to think about access and inclusion in a much richer and a deeper way. So, thank you very much, Beata. I've really enjoyed this conversation.

Beata: Thank you so much, Jos.

Jos: So far, we've heard from Camilla about working with, but also expanding, the notion of universal design in terms of broadening how we think about disability, access and inclusion. And with Beata, we've talked about how that expanding includes interconnecting it widely with other issues, including the climate emergency and social inequality. And also about how alternative concepts from disability studies, scholarship and activism, such as fitting and misfitting, can help us rethink disability in creative and productive ways. Crucially, though, we also need to centre the diverse knowledge and experiences of disabled people themselves. I want to introduce Helen, a UK-based architect-trained artist. She'll be joining us online. Helen, if you could start by introducing yourself.

Helen Stratford: Yes, I'm Helen and I'm an artist and an architect. I've got lived experience of disability and a chronic pain condition. Yes, I'm definitely coming from that sort of architectural background, but then really exploring kind of public space through my arts practice.

Jos: And I think what's really interesting, I mean, we've known each other for a long time. I knew you before you developed chronic pain. So, it's been really interesting to see how you've seen, you've developed the kind of art practice you were already doing - or art architectural practice you were already doing - and bringing in a sense of your own bodily experience to that. I mean, it'd be great if you could just explain that a little bit more about what that's meant for you.

Helen:  Yeah, I think it's these last few years have been kind of transformative in many ways. Because I developed this chronic pain condition and previously I'd used performance-based practices to explore kind of power structures within public space. So, I was really looking at how public space is produced through kind of layers of different social, cultural, political, economic, factors and how they exclude certain, I guess, certain people within those kinds of layers, and how the physical environment interacts with those kind of, yeah, those layers. But then what happened was, and I guess what happened was really that those kind of performance-based practices were a choice. You know, I would often invite people to lie down in public space just to challenge the kind of presumptions or the kind of social etiquette. I was working with the performance artist Diana Wesser [in 2008] was the first time that I kind of really did that and actually what we did, well what Di did, she sort of sat down in the middle of Piccadilly Gardens [Manchester UK]  are really questioned the thoroughfare, the through route of that design, of that design of the space, and then really start to kind of unpack different kinds of power structures, which positioned us as women within that space as well. So, it was like a really interesting process, that was. But then, more recently, what happened was what was kind of a choice of sitting down, even though that might be bounded by a kind of social etiquette, became this point of necessity. So, I basically had to lie down because I couldn't really carry on without doing so. So lying down kind of mitigated against the pain, but didn't kind of stop it completely, but enabled me to, I suppose, continue with going to work.

I mean, also just to say as well, I kind of focused my practice on being in public space, exploring public space. And when I was really unwell, I couldn't actually even get to be in public space. So, it was really thinking about those kinds of ways of making work, based on assumptions of certain kinds of bodies that are able to do that. And I think without going into, going off on another tangent, but art practice as a whole, I think depends a lot on your visibility, your ability to be in person. And that was something that I just, I just couldn't do anymore. So I had to really reframe what my practice was and to really sort of rethink how that could be.

Jos: Yeah. And I think that's, I mean, this particular podcast is sort of centred on disabled creativity, but then it's also about the fact that the things you're talking about are not just about how it informs and has sort of shifted your work in some ways, but it's also about the fact that it has to shift the practices. It's not just the work, it is also how we're organise and how the very structures of the way that universities work or workplaces work means that those things also have to change, I think.

Helen: Yeah, definitely. There was this kind of sort of visceral clash, I guess I call it a non-negotiable demand that my body sort of placed on me that kind of completely clashed with my previous kind of practice. But also, yeah, I was newly, I just finished my PhD and I was just trying to start my – I’m a lecturer in architecture as well - and I was just starting on that kind of journey but I had to… yeah I couldn't actually get to work and I had to really like break down in a granular way how I was going to get to work, how I was going to do that in a way that would support my body, and whether that was even possible, and whether I had the support in place to enable me to perhaps not travel, I mean all these things suddenly became real practical considerations but they also, for me, really interesting, make visible those in a research sense - a kind of embodied research method - into these kinds of structures that prevent bodies that are not able-bodied in the sort of conventional sense in terms of like yeah just being able to participate in in life, yeah public life.

Jos: And I think what I love about what you've been doing is that you've also taken that experience and made it part of your art practice. So, one of the reasons I wanted to talk to you was that you were part of one of the workshops we did here in Copenhagen at the Academy, which was a part of one called A Society Built for Every Body. And artists, architects from the UK came and did different workshops. And I wondered if you could talk a little bit more about what you did, because that workshop was very much around how you manage everyday life.

Helen: Yeah, it was a challenge. I mean there were disabled and there were non-disabled students in the room so it was and for me, I guess it was that first point of taking I mean what I just I suppose my sort of journey was to really start to look at those everyday practices in my life of just getting out of bed, just getting down the stairs, doing lots of kind of physiotherapy exercises that were prescribed to me to make myself feel better. And really, that kind of labour around things which I'd taken for granted previously, and how that expanded way beyond the kinds of work that I was able to do if I was able to sit at a computer for like 20 minutes at a time. You know, all the work around those kinds of process, the kind of everyday processes. So, what I did was I invited the students to map out those processes as well. And so like, think about the times that they experienced friction. So between the kind of planned workday, the kinds of things that they'd planned to do, and then perhaps how they couldn't manage to get to those things, or actually even just getting to the workshop.

You know, its often people have different experiences getting to a place, maybe it's a conference or workshop. So starting there is to really sort of, I guess, kind of reflect on those processes that we take, that we have to take for granted. But to think about, you know, within kind of a able-bodied world to think about how actually when you're unwell or maybe even just through, well I wouldn't reduce it, but just thinking about kind of, you know, social situations, anticipating what's going to happen, feeling in a kind of safe situation, you know, these sort of these kinds of challenging spaces which I think everybody encounters, but nobody really reflects on. So it was a time to kind of think about that. And actually, what starts to come out is actually, you know, times where the students have felt really tired, but they've had to carry on working because they've got a deadline, or they've been unwell. Or actually, you know, then we really encounter people who are willing to talk about different aspects of their own kind of lived experience of disability or chronic pain conditions and neurodiversity. So, it's like really making a space for those things to be present. And so, yeah, I think it was really like that took quite a while because that can take quite a while, to really sort of map out all those kinds of extra things around making what we consider as work, around what we consider as productive.

And so that's what we started with. And then we shared those and reflected on those, and then from that we made what I call props, which start to think about what would we really like to have then to support us in our daily lives. That would perhaps add, to bring comfort to those kinds of frictions we're experiencing or maybe highlight them, make them visible to other people. And the students made all sorts of things, so there was lots of focus on kind of lying down actually and kind of having rest during the day, you know things that you could carry around and roll out. But then there was also, I guess I use a lot of humour in my practice as well, so thinking of ways by which the language around kind of recuperations or rehabilitation can often be quite debilitating actually - like that you have to get better and you have to get well, whereas actually if you have a condition where that's never going to happen, you know where does that sort of position you in terms of your value? So they used these kind of motivational posters and made one as well. For like getting to make work or to get into, so it was like really sort of fun, this kind of like advertising kind of jargon as well. And then there was one interesting encounter with a student who was a wheelchair user, who was non-verbal and they were using text to kind of communicate their daily process and it was really nice because actually I often use this kind of flow chart template and ask people to fill that out because that directly positions what is a very linear time frame against this kind of more expanded idea of a time frame. And they used text to communicate their process of getting up in the morning and working with their PA, their support worker, to get dressed and the processes around that. So, for me, that was a really exciting moment. And actually, I've had many encounters with people where they're like, yeah, this really talks to me and this really talks to my processes that I experience and how to communicate that with other people who don't normally reflect on that.

Jos: I mean, I think it's lovely to hear you talk about it because I think it manages simultaneously to really broaden the idea of what access is. So it's not just functional access for disabled people, but it also enables a very diverse range of people with impairments to kind of talk about that and to think it through, and explain it and reflect on it in a really rich way. And as you say, kind of often quite humorous way. One of the other things I wanted to ask you about which kind of relates was one of the things that's coming out I think of disability scholarship, disability studies scholarship and activism is a kind of a new language. Kind of how do we talk about this stuff and what is it we're trying to draw out; and terms that we've both used that seem really helpful, particularly I think around chronic pain, are crip time and spoon theory. And I know that you use those terms, so I thought it would be really great if you could just explain very briefly to the listeners what they mean.

Helen: Yeah, I guess I can sort of talk about what they mean to me.

Jos: Yes, of course.

Helen: Yeah, I think this, for me, crip time, it's just a very exciting term, and at the time when I just kind of discovered it I wasn't aware it came out of disability activism or had kind of been framed in this kind of academic circle, but actually for me it was like an idea of time that wasn't linear that was somehow accepting these kinds of processual understandings of pain and by that I mean like things that don't have a place where they're going to. I guess, as Kaiya Waerea, who's a publisher, artist, writer based in London, they have been really exploring this question of the future for disabled people thinking about how to, you know, create, generate ways of talking about the future. And I think in an expanded way, because often I think what happens is we think about the future, we're planning towards the next thing. And I think that was something I encountered. I had like a plan about what I was going to do next in my life, but then it kind of completely, you know, got abandoned. And I think it's that recognition, actually, that there are different timeframes and that those actually can be really, I use this with a caveat, kind of liberatory in the sense that you can say, actually, this way by which we live in this kind of neoliberal society where we're kind of planning for the next thing - we're going to get there independently we have a kind of linear progression, we're thinking about productivity within that context, it's all framed about the next step and how to get there. When you can't plan for the next day ahead, or the month, or the year and that all just is completely scary and you know actually how do you then think about that in a way that can give you energy. And for me thinking about crip time as a way - as a resistance - as a way to resist those models of life which I already start thinking from a kind of feminist point of view was already sort of critiquing. But for me it was like really exciting moment to say, actually these are visceral ways, these are lived experience by which we kind of really feel that actually that way of living is just ultimately really wrong. It's like really unhealthy. It's like really, I mean, Mimi Khuc, who's this like amazing academic, talks about how all academia is really unwell. I think it's like, you know, sort of flipping it, flipping what's well on its head to say actually we live in a society where certain ways of living are valued over others and certain timeframes are valued over others. Which means that we completely, yeah, we miss out on a whole lot of other experiences. So, I think this question of like relative understandings of time within crip time, something that I've really experienced, you know, directly. And also through working with other people who have different disabilities, different timeframes that they work within as well, and having to make space for different people to - not catch up because that is sort of ableist way of thinking - but to have energy to kind of be able to meet you, or maybe they won't meet you at all, you know, and having that space to be able to allow that to happen within processes of working, processes of research, processes of making, I think it's just so exciting and challenges these kinds of timetabled approaches.

Jos: Yeah. And I think it's, for me, I think I've learned such a lot around - having started out in architecture where kind of architectural space is very much about the physical and the material space and how that's orchestrated - and that actually we should be, because we're talking about people and diverse people, we should be talking about space and time and energy simultaneously, like those things completely connect. And maybe you could just briefly, I'm sorry I've asked you two questions at once really, because um, so spoon theory?

Helen: Spoon theory yeah! For me this was presented to me and I kind of, I was doing some CBT [Cognitive Behavioural] therapy, which is often prescribed for people with chronic pain. And I was slightly sceptical as I was with CBT in general, but about spoon theory. But actually, it's really useful actually, because when I commute, I sort of thought, oh, I don't know. But then when I looked at it, I thought this is like really interesting. And actually I was looking up just now, it's like a metaphor. So basically it's like instead of 12, well, this is how my husband would say it. Instead of 12 hours, you have 12 spoons. But then when I, so he said this to me when I tried to explain it to him. And I said, no, it's not hours, actually. It's not about hours because hours are like a division of a day, which have a sort of set minutes within it. And it seems that everybody meets the day in the same way. So we all have 12 hours and we can use them in whatever way we want to. Actually, what spoon theory does, and this is where it's really useful, it says, actually, it's about, I guess, amounts of energy and that we don't all meet the day in the same way. So, we can think, actually, some of us might come with three spoons already used up, if you like, three spoons that have already been used. Perhaps we didn't sleep very well, or perhaps we just are that way when we wake up in the morning, or maybe we might have already even used like eight spoons. And it's then being aware of that and how your body is, and being able to say, well, what can I do today that's not going to completely, and this was another revelation, that can completely deplete my spoons for the day. So, if I've got 12, then I'm not going to like run out. And I think often we've been programmed to say, how can we like use all the energy and all the hours in the day in an effective, useful, productive way? And it says, well, actually, you know, doing things that aren't deemed to be work also use spoons. So, like getting up uses spoons. And actually, it's different for everyone. And it's different on a different day for everyone. And it's different at a different time of day and it might be different in the morning to the afternoon and its sort of recognising that sort of micro level of detail. But I think, yeah, but also I'm slightly resistant to like thinking in terms of like clear boundaries of what the spoons mean to different people. So I think, yeah, things that kind of divide things up numerically I'm also slightly sceptical around. But for me, it has been really useful to kind of communicate to other people to say, actually, no, I've only got four. You know, if you meet someone and you say they might ask you, how many spoons have you got? And you're like, yeah, I've only got like four left for the day. So, we're not, you know, so I think it's really useful to communicate how you are, take your time. I think one thing that when I was working with Raquel Meseguer Zafe, who's a dance artist, and we were working with Questions of Rest, and mentioned Jess Thom who's an artist who works with, otherwise known as Touretteshero and and they talk about this idea of a socialist idea of energy. And I it's really useful because they talk about how if everybody's tired at the end of the day, then everybody will have I guess there will be a kind of socialist idea of energy use in the day - but actually I'd like to say that if we're not all tired by the end of the day that would be better actually. Because like it struck me as slightly at odds actually do we need to exhaust ourselves? I think within architecture specifically, we're - and having read a student essay on this topic recently who has lived experience of an auto-immune condition and critiquing this aspect - we're often told, or the story is that we must use all the hours of the day. And when, you know, we, I mean, when I started architecture, I was told that I would work all hours of the day, that I would be, you know, filling up rubbish bins with discarded ideas. I would just be working and working. And that was how it was going to be. But actually this is just, it doesn't have to be. It's just a complete kind of, dare I say, kind of macho kind of like myth, actually we have to do that. Cause yeah, and it's trying to find, I mean, Naomi Stead has done amazing work trying to find other ways of working within architecture practice. Yeah, and, you know, feminists, coming from feminist practice,..

Jos: Yeah..

Helen: You can tell I'm very passionate about this…

Jos: Absolutely, me too. I mean, and I think what coming from disability and difference does is that it actually make explicit the energy that's required to navigate the built environment, to negotiate your encounters with other people, to actually put in certain sorts of work, even to put in the appearance of you know being part of that kind of obsessive work culture - that all of those things do deplete energy, and that thinking about energy and who has it and how each of us manages it is kind of really, I think it opens up all sorts of issues. And I guess I'm really you know, this podcast is about rethinking disability and I think what's been really lovely listening to you and talking to you is that it's both coming from the perspective of the lived experience of disability but it's also about, it actually talks to the experiences of all sorts of people including people who probably wouldn't think of themselves, you know who definitely do not think of themselves as disabled, would think of themselves as kind of completely able-bodied. And that opening up those things and awareness and this is a kind of positive potential to resist some of those kind of pressures to be a certain sort of person, I think it's really vital these days.

Jos: So thank you very much, Helen. Thank you.

Helen: Thank you. No, it's been really great.

Jos: It's really good to finish this episode with a focus on rethinking disability that starts from the lived experience and knowledge of impairment. The concepts that have come up here, from universal design itself, to misfitting, to crip time and spoon theory, have all come from disabled people themselves. And it's really vital that non-disabled people working in the design fields pay attention to and learn from this rich and diverse expertise. So many thanks to Camilla, Beata and Helen for talking to me today, and to the Royal Danish Academy and the Bevica Foundation for supporting this project. These podcasts only cover a small part of the many fantastic things going on around disability, access and inclusion at the Academy, in Copenhagen and elsewhere, but we hope that by reflecting on our particular experiences of rethinking disability in education and practice, we can help others to also bring their innovative, creative and critical ways of including disability and access into everything that they do. In the next episode, Universal Design and….Bodies, Buildings and Spaces, we will look at some practical methods for teaching and designing more inclusively. I'm Jos Boys, guest professor at the Royal Danish Academy and co-director of the DisOrdinary Architecture Project. Thank you so much for listening.

Danish transcription

OBS: Denne oversættelse er lavet ved hjælp af kunstig intelligens, og gennemlæst efterfølgende.

Universal design and… rethinking disability
Universelt design og…  nyfortolkning af begrebet ‘handicap'

Jos Boys: Velkommen til denne podcastserie Universal Design and… I løbet af tre episoder vil vi udforske, hvad begrebet universelt design egentlig betyder, og hvad der skal gøres anderledes for at gøre vores produkter, bygninger og omgivelser reelt tilgængelige for personer med funktionsnedsættelse.

Universal Design and… bliver præsenteret af mig, Jos Boys. Jeg er meddirektør for The Disordinary Architecture Project– en nonprofitorganisation baseret i Storbritannien, som skaber platforme for kunstnere, designere og arkitekter, der er handicappede, neurodivergente eller døve. Jeg har haft den store fornøjelse at arbejde sammen med ansatte og studerende på Det Kongelige Akademi i København som gæsteprofessor gennem de sidste tre år. Derfor ønskede vi at benytte lejligheden til at dele nogle af de erfaringer, vi har gjort os om at gentænke design og handicap. Hvad betyder udtrykket universelt design? Det bygger på et tilsyneladende enkelt princip: at alle produkter, bygninger og miljøer skal kunne bruges i videst muligt omfang af alle – uanset alder, evner eller livssituation. Det er et vigtigt mål. Men siden begrebet blev introduceret af den amerikanske handicappede arkitekt, Ronald Mace, i 1980’erne, har arkitekter, designere og deres kunder haft svært ved at implementere universelt design på en meningsfuld måde. Faktisk står vi her, over 40 år senere, og personer med handicap møder stadig betydelige adgangsbarrierer i alle aspekter af deres dagligdag.

Så podcasten Universal Design and… ønsker at forstå, hvorfor det er sådan, og hvad arkitekter og designere – både med og uden handicap – kan gøre ved det. Vi er interesserede i at udvide, udfordre og udvikle begrebet universelt design og tage det nye steder hen. I Episode et, Universal Design and… Rethinking Disability, taler jeg med nogle af de ansatte og studerende fra Det Kongelige Akademi i København om, hvordan vi kan tænke anderledes om handicap og evner – som en måde at åbne op for alternative måder at designe for alle på. For at gøre dette er jeg her på Det Kongelige Akademi i København og taler med nogle af dem, der arbejder her, om hvordan de forsøger at arbejde anderledes med handicap, før jeg vender tilbage til Storbritannien via Zoom for at tale med en af de kunstnere med handicap, som nogle gange arbejder med The DisOrdinary Architecture Project, og som også har arbejdet her i København – for at få hendes perspektiv.

Men først ville jeg gerne tale med Camilla Ryhl, forskningsdirektør ved den danske Bevica Fonden – organisationen, der har finansieret min rolle på Det Kongelige Akademi– for at høre hendes syn på universelt design. Universelt design – er jo i titlen på podcasten, og er et meget vigtigt koncept, og jeg synes, at Camilla er meget central for, hvordan dette koncept bliver ført videre her. Så vil du gerne præsentere dig selv, og derefter fortælle os lidt om, hvad du mener med universelt design?

Camilla Ryhl: Ja, tak. Mit navn er Camilla Ryhl. Jeg er uddannet arkitekt her fra Det Kongelige Kunstakademi i København, og jeg har arbejdet med forskning og undervisning i 25 år, hvor universelt design har været det gennemgående fokus for mine aktiviteter. Nu er jeg forskningsdirektør i Bevica Fonden her i København og leder af vores Universal Design Hub i Fonden. Når det kommer til universelt design, hvordan forstår eller ser jeg så universelt design? For mig er universelt design et værdibaseret designprincip, der kan bruges til at designe alle aspekter af de samfund, vi lever i og deler. Et af de væsentlige aspekter ved universelt design for mig er forståelsen af, hvad det vil sige at være menneske, at det repræsenterer. Faktummet at universelt design i sin kerne anerkender, at det at leve med forskellige og skiftende evner gennem livet, er noget, vi deler som mennesker - og en del af at være menneske. Så universelt design kategoriserer os ikke med eller uden handicap, raske eller handicappede, men anerkender det faktum, at det at leve med funktionsnedsættelser og forskellige former for handicap, grader og typer af handicap, bare er en del af det at være menneske.

Jos: Der er en sætning, som jeg har hørt dig bruge meget, som jeg synes er virkelig fantastisk, som handler om nobody left behind.

Camilla: Ja, jeg mener også, at universelt design, både i den måde jeg forstår konceptet på, men også i den måde, vi arbejder med det på i Bevica Foundation, er, at vi ser universelt design og den værdi, det repræsenterer, som et middel til at sikre løftet om at ingen efterlades. Det er mest markant til stede i FN's bæredygtighedsmål, som et løfte om at sikre, at ingen lades i stikken i den bæredygtige proces og udvikling. Men det er også en slags tommelfingerregel eller en måde at tænke på, også inden for design, for at sikre, at når vi designer vores samfund, som du ved - det kan være vores byggede miljø eller produktdesign, men det kan også være mange andre aspekter af samfundet - så sørger vi for, at ingen bliver efterladt i vores design, vores processer eller vores tilgang til forholdet mellem design og mennesker.

Jos: Jeg ved, at du arbejder på tværs af mange forskellige discipliner, så ikke kun arkitektur og det byggede miljø, men selvfølgelig med min baggrund i arkitektur er jeg særligt interesseret i hvor du mener, at begrebet universelt design er i øjeblikket i arkitektoniske discipliner? Både her og i andre lande?

Camilla: Jeg tror, at svaret på det er, at vi på en eller anden måde også er nødt til at anerkende det faktum, at universelt design er et meget dynamisk koncept, og selvom det blev opfundet og voksede ud af USA, af Ronald Mace, som på en måde blev anerkendt for at have opfundet det tilbage i 80'erne, har det på en måde udviklet og blevet spredt til hele verden. Så vi forstår, fortolker og praktiserer det forskelligt i forskellige regioner i verden. Men jeg tror, at hvis vi bare ser på Norden, så er der endda forskelle der; hvor vi i Norge ved, at de arbejder med konceptet universelt design, meget struktureret og velorganiseret og ambitiøst fra en top-down tilgang siden begyndelsen af 2000. Mens i Danmark har begrebet universelt design inden for arkitektur taget meget længere tid at hænge fast. Måske på grund af timing, på grund af formidling og kommunikation, og forstå hvad universelt design er, og hvordan det adskiller sig fra den måde, vi arbejder med tilgængelighed på i en dansk kontekst. Så i øjeblikket vil jeg sige, at i en dansk kontekst er universelt design meget mere udbredt, og vokser i viden og i praksis. Inden for det arkitektoniske felt ser vi, flere og flere virksomheder, men også enkeltpersoner og undervisningsaktiviteter, der på en måde tager fat i universelt design og undersøger det, udfordrer det, diskuterer det, men også praktiserer det. Og jeg synes selvfølgelig, at det er vidunderligt at se.

Jos: Jeg tror at fordi min erfaring i høj grad er baseret på at studere og undervise i arkitektur i Storbritannien, føler jeg, at selv tilgængelighed – for slet ikke at tale om universelt design – var noget, der virkelig aldrig… det var bestemt ikke noget der kom op på min arkitektuddannelse. Men også nu, hvor jeg arbejder på tværs af moderne arkitektuddannelse og praksis, at det stadig overraskende nok, ikke engang noget folk har hørt om det, eller hvis de har hørt om det, ved de ikke rigtig, hvordan de skal implementere det. Så jeg er meget interesseret i det, og det er noget du gør hele tiden, hvilket er nogle af de måder, hvorpå dette som et begreb kan gøres konkret og noget, hvor folk forstår, hvordan man implementerer det. Og jeg tænkte bare, at nogle eksempler på det ville være virkelig nyttige.

Camilla:  Jeg tror, at i den danske kontekst, hvor vi også opererer, og som er der, selvom jeg har arbejdet internationalt, er der basen er. Så hvis vi bare ser på det i en dansk kontekst, er det er vigtigt, at vi bliver ved med at tale og diskutere universelt design i forhold til tilgængelighedsbegrebet. For både måden vi arbejder med tilgængelighed på og potentialet og mulighederne som universelt design tilbyder i en dansk kontekst, er meget anderledes ens tilgængelighedstilgangen, som mere er en form for lovgivningsmæssig tilgang med minimumskrav…

Jos: Og kun fokuseret på handicappede...

Camilla: Ja, og det var også sådan, jeg blev introduceret kort til det i skolen og det handlede om kørestolsdimensioner og målbare løsninger. Så jeg tror, at vi skal blive ved med at tale og forstå universelt design som noget meget anderledes end tilgængelighed og dybest set meget anderledes i måden at forstå og arbejde med den menneskelige krop på, og hvad det vil sige at være menneske i selve din designtilgang. Og jeg hører ofte folk sige, hvordan kan vi arbejde med det? Hvad er det? Og til det vil jeg sige, at der er, jeg tror, at vi grundlæggende er nødt til at forstå det og diskutere det på disse tre niveauer, hvilket også er noget, jeg har introduceret i mit eget arbejde. At vi skal være tydelige - forstår vi det som en værdi, eller taler vi om det som en proces eller som en håndgribelig løsning? Så allerede der, en slags enighed om, hvad vi taler om med universelt design, og i hvilken kontekst og skala. Hvad angår implementering eller praksis, så tror jeg, at der er værktøjer. Der er de oprindelige syv principper, og Steinfeld og Maisel har udviklet de otte mål for universelt design; og de to værktøjer er i sig selv meget forskellige.

Jos: Der er sikkert nogle lyttere, der ikke ved, hvad principperne for universelt design er. Kan du lige kort opsummere dem?

Camilla: Ja. De syv principper for universelt design er en, retfærdig brug; to, fleksibilitet i brug; tre, enkel og intuitiv brug; fire, mærkbar information; fem, tolerance for fejl; seks, lav fysisk anstrengelse; og syv, størrelse og plads til tilgang og brug.

Jos: Ja, tak.

Camilla: Nogle af de ting, jeg ser i Danmark nu, er, at der er masser af virksomheder, der udvikler forskellige implementerings- og fortolkningsværktøjer. Så jeg synes, det er vigtigt at have et åbnet sind og teste, og det er nogle af de ting, som universelt design giver os nu i Danmark. Jeg mener, at vi skal være tro mod den tværfaglige definition, der ligger i CRPD konventionen om rettigheder for personer med handicap (Convention on the Rights of Persons with Disabilities). Men hvordan man skal fortolkes, er stadig åbent – der er stadig plads til at eksperimentere og udvikle forskellige værktøjer, uden at det nødvendigvis bliver forkert. Jeg ser at universelt design i en dansk kontekst som noget der rummer et stort potentiale, også i forhold til at udfordre en arkitektpraksis i dens måde at forstå, hvem vi designer for.

Jos: Ja. Og en af de ting, jeg elsker ved den måde, du taler om det på, er, at i stedet for at have universelt design som en slags fast definition, at du ser det som en slags generativ idé, og du er lige så interesseret i folk, der fortolker det bredt, eller som udfordrer og omdefinerer, hvad det kan betyde og endda udvikler andre termer - forbundne termer - som du kender handicapretfærdighed,  eller hvordan disse ting kunne være en del af en slags større billede, og jeg tror, det ville være rigtig rart at høre lidt mere om, hvilken slags ting i fremtiden du gerne vil understøtte disse særlige tilgange og metoder. Eller om du tænker på, hvor du måske kan se meget produktive veje fremad.

Camilla:  Ja, jeg ville elske at se en masse udvikling, og med det mener jeg at eksperimentere med processen og med forskellige værktøjer, både i planlægning og design af processer, men også at udvikle værktøjer eller måder at arbejde med universelt design på, så processen i sig selv også anerkender universelt design som et værktøj, designe, universel design af selve processen. For jeg tror, at hvis vi ikke skal gå glip af det øjeblik, hvor universelt design stadig er et relativt nyt begreb i dansk kontekst, håber jeg, at vi kan bruge det som et springbræt og et middel til at udfordre den måde, vi arbejder på i vores tegnestue, hvilket kan resultere i et par revolutioner her og der, og helt forskellige måder at gribe vores designprocesser an på. Så der håber jeg, at vi vil se meget mere udvikling og nye måder at arbejde med universelt design som et procesværktøj.

Og måske - fordi jeg er arkitekt - så hvordan betyder vi egentlig, hvad betyder det håndgribeligt som et resultat? Men også udfordrer det og sørge for, at vi ikke fortolker og praktiserer universelt design, som vi gør med tilgængelighed i den danske kontekst.

Jos: Det var virkelig interessant at tænke over - fordi du og jeg har haft diskussioner om universelt design som et sted at starte fra, og jeg støtter dig virkelig i det, du siger, og jeg mener, at den politiske fastlæggelse er så afgørende, hvis man rent faktisk skal lave virkelig konkrete forbedringer, så er man nødt til at få det til at fungere på et politisk og strategiske niveau. Og jeg tror, at det, der har været meget dejligt for mig ved at arbejde med dig, er, at det også har dette, du ved dette, lad os eksperimentere, lad os se, hvor det fører os hen, lad os se, hvad vi kan gøre, og at det har været muligt at arbejde med alle mulige forskellige mennesker på Det Kongelige Akademi for at udforske forskellige slags metoder og tilgange med studerende - ret mange af dem meget erfaringsbaserede, men også meget omkring at udforske forskellige former for kreativitet, og jeg tror, at alle disse ting passer ind i din måde, den måde, du taler om universelt design på. Så mange tak for det, det er en virkelig nyttig begyndelse, tak.

Camilla: Tak skal du have.

Jos:  Det, der har været virkelig interessant ved at arbejde med studerende, lærere og praktikere her på Akademiet, er, hvor mange forskellige kritiske og kreative metoder der bliver afprøvet for at finde måder at integrere problemer omkring handicapadgang og inklusion på. Min næste gæst er Beata, som er arkitekt og underviser her på Det Kongelige Akademi. Vi har for nylig arbejdet sammen med hendes studerende for at udforske spørgsmål omkring handicap og social og rumlig lighed. Beata, vil du være venligt kort at præsentere dig selv og derefter fortælle os om din interesse for dette område?

Beata Hamer:  Ja, tak fordi du inviterede mig til dette til at begynde med. Så jeg har undervist på kandidatuddannelsen Political Architecture, Critical Sustainability, også forkortet PACS, siden 2018 - jeg dimitterede fra samme program i 2015. Og de sidste to år, ja for to år siden, blev jeg medansvarlig for uddannelsen sammen med min kollega, Nils Grønbæk. Jeg nævner dette, fordi jeg havde meget mere indflydelse på den langsigtede planlægning og på læseplanen og læringsmålene. Jeg må også sige, at jeg er holdt op med at undervise. Jeg er ikke involveret i undervisningen i øjeblikket, da jeg startede i en ph.d.-stilling, også på Det Kongelige Akademi. Men jeg tror, at det, vi skal tale om, er mere, hvad der skete for et år, halvandet år siden, da vi begyndte at samarbejde, ikke? Og jeg tror, for mig er handicap og adgang, ikke noget som jeg sådan har arbejdet med, og jeg har heller ikke selv erfaring med det, men jeg tror, at de på en eller anden måde er en del af et fundament, grundlaget for min arkitektpraksis og også undervisningspraksis, sammen med andre spørgsmål om ulighed og kampe. Jeg vil sige, at de er en del af et krydsningsfelt, hvor klasse, køn og etnicitet også er vigtige faktorer. Det, vi siger, eller det, jeg siger til studerende på PACS, er, at det at identificere, at arbejde med, hvad politisk arkitektur kan være, er at skærpe denne linse og være i stand til at læse vores byggede miljø eller rum med denne linse. I stedet for at stille spørgsmålet, hvad er politisk arkitektur, fordi vi ser, at al arkitektur er politisk på en måde, og det er mere et spørgsmål om hvordan det er politisk. Vi beder eleverne om at stille spørgsmålet, hvad der ikke er muligt, eller hvad er muligt gennem dette særlige design af et rum? Og jeg tror, at der inden for det spørgsmål er en åbenlys bekymring for adgang og handicap, men det er selvfølgelig også forbundet med andre problematikker selvfølgelig.

Jos: Det er så interessant, fordi det er præcis det, vi har tænkt på i forhold til de forskellige måder at arbejde omkring handicap på. Min baggrund er inden for arkitektur, og det er stadig… handicap ses stadig så meget som en simpel teknisk kategori. Det er som om, det er asocialt, det er kulturelt, det har ikke noget, det har ikke noget at give tilbage til verden. Så det hænger ikke sammen, det er på en måde afkoblet fra andre slags problemer, arkitektoniske spørgsmål, som om det er klimakrisen eller andre sociale lighedsspørgsmål. En af de ting, vi talte om, og som kom frem i arbejdet med studerende, var, hvordan man taler om dette spørgsmål om social og rumlig lighed; og vi talte om koncepter omkring tilpasning og mistilpasning, som kommer fra en handicapstudieforsker ved navn Rosemarie Garland-Thompson. Ideen om mistilpasning er baseret på forestillingen om, at adgang og inklusion altid er relationel. Det afhænger af konteksten og omgivelserne, så du passer forkert, når verden omkring dig ikke matcher dine behov. Behov er ikke kun funktionelt indlejret i folks kroppe, men de er noget, der er forbundet med, hvad du laver på det tidspunkt, og hvem du gør det med. Og da vi talte om det, talte vi også om, hvordan det på en eller anden måde hænger sammen med eftermontering og til ideen om en form for tilpasningsevne og fleksibilitet i, hvordan bygninger kommer til at blive designet og i forhold til klimakrisen. Kan du tale lidt mere om det?

Beata: Ja, selvfølgelig. Og jeg husker den samtale vi havde – jeg tror det var den allerførste samtale på Zoom, da jeg inviterede dig til at holde et oplæg som en del af en forelæsningsrække i 2023. Og det semester, det pågældende semester, faktisk hele det studieår, arbejdede vi på PACS med begrebet degrowth [afvækst] – både som en måde at forstå det økonomiske system, som arkitekturen er forankret og indlejret i, og hvordan det muligvis kunne være anderledes. Så det handlede om at forstå disse systemer, organisering af økonomi og så videre, men også at forstå de rumlige og materielle konsekvenser af degrowth, af et muligt degrowth-paradigme, der kommer.

Og jeg husker, at det var den samtale, vi havde, at begrebet misfit, misfitting på en eller anden måde blev det, der forbandt disse interesser på en eller anden måde, og hvordan det økonomiske vækstparadigme, som vi i øjeblikket er en del af, er knyttet til idéer eller idealer om produktivitet, styrke, evne, selv maskulinitet og en bestemt arbejdsetik, tror jeg også. Og jeg mener, at det at forbinde handicapstudier med, lad os sige, et kritisk perspektiv på økonomien og disse større fortællinger, som vi er indlejret i, tror jeg giver mulighed for at tænke sammenhængende skalaer, og måske bruge de samme begreber, når man analyserer og forsøger at forstå spørgsmål om ulighed og uretfærdighed. Jeg tror, det kan være virkelig nyttigt at skabe en masse kreativitet, fordi det er forbundet med hinanden, og vi er også nødt til at har den slags kampe er med. Og jeg syntes for eksempel, at idealet om denne raske og produktive, ofte maskuline krop kan være meget destruktivt, hvis vi designer rum ud fra denne idé. Så kroppe, der afviger fra dette ideal, det ville være de fleste kroppe, vil jeg sige, oplever som du siger, misfitting. Miljøet er ikke designet til deres krop, eller det er svært måske at tilegne sig det, tilpasse det eller ændre det efter egne behov.  også at tilegne sig det eller ændre det, ændre det efter ens behov. Og jeg tror, man kunne sige det samme om – jeg ved ikke, om vi kan kalde det arkitekturens økonomi – men hvis den følger de samme idealer. Jeg vil sige, at det ville betyde, at vi ville bygge mere for at øge BNP eller værdier. Og vi vil antage eller forvente, at materialer kan være stærke og vedligeholdelsesfrie og holde evigt. Og vi ville rive gamle bygninger ned og bygge nyt og nyt. Så der er også denne form for nyhedsparadigme. Og jeg syntes, det er lige så destruktivt, men på en anden skala, en mere planetarisk skala. Jeg tænker også, at denne fortælling og denne økonomi er også destruktiv, da den invaliderer endnu flere mennesker gennem stress og umenneskelige arbejds- og informationsbelastninger osv. Min pointe, tror jeg, er disse dominerende fortællinger, som vi på en eller anden måde køber og arbejder med og under, er fortællinger marineret i produktiv, funktionsdygtig maskulinitet. Jeg mener, at andre værdier og idéer må danne grundlaget, en form for fundament for vores kreativitet som designere og arkitekter. Og når vi taler om retrofitting – om at arbejde med bygninger, der måske opfattes som misfitting i en vækstøkonomi eller et vækstparadigme, og som derfor burde rives ned ifølge denne logik – så handler det om at tænke disse bygninger på ny, tilpasse dem, huse dem og give dem nyt liv, ny form. Jeg tror, at feministiske metoder som at lytte, give stemme til de stille, og fokusere på relationer – jeg ved ikke, jeg kan godt lide at tænke på det som noget, der kunne bruges eller være det etos, vi arbejder ud fra, når vi arbejder den eksisterende gydningsmasse, som er så mangfoldig og på en måde misfitting. Så ja, der var bare nogle links der på en eller anden måde. Så ja, der var bare nogle forbindelser dér, på en eller anden måde.

Jos: Absolut. Og jeg må sige, at samarbejdet med dig omkring dette har fået mig til at tænke meget mere over, hvordan tilpasning, altså det at undgå nedrivning og i stedet arbejde med retrofitting, allerede har stor indflydelse på en yngre generation af arkitekter. Jeg tror, de er virkelig optagede af det. En person sagde til mig, at når man ser på gamle bygninger og overvejer, hvordan man kan retrofitte dem, så laver man typisk en form for bæredygtigheds-audit: man undersøger materialerne, vurderer konsekvenserne af, hvad man fjerner, hvad man erstatter, og hvad man bevarer. Men samtidig kunne man faktisk også lave en tilgængeligheds-audit. Man kunne se på, hvor tilgængelig bygningen er for forskellige typer af kroppe og sind, og hvad der skal til – og hvad der er muligt – i forhold til retrofitting på den måde. Og for mig føltes det som en meget praktisk tilgang til at integrere disse hensyn som en form for kontinuitet – i stedet for at se dem som separate kategorier, der behandles hver for sig. Bæredygtighed bliver typisk tænkt ind i hele byggeprocessen, mens tilgængelighed ofte først tilføjes til sidst som et teknisk problem. Så jeg synes, det er virkelig nyttigt. Men noget andet, der også kommer ud af dette, er, at mange aktivister, teoretikere og forskere virkelig engagerer sig i klimakrisen som noget, der faktisk skaber flere funktionsnedsættelser – at det i sig selv er en disabling oplevelse. Og sammen med andre former for uligheder i samfundet, som fattigdom og dårlige arbejds- og levevilkår, understøtter alle disse normative strukturer omkring os netop de meget produktive, individualistiske og entreprenante kroppe, som bare stormer gennem verden og aldrig holder op med at arbejde, arbejde, arbejde. Så at tage udgangspunkt i funktionsnedsættelse og i forskellighed – i ikke-normative kroppe og sind – føles som et meget frugtbart sted at begynde, også når vi skal tænke over, hvordan vi kan handle anderledes i fremtiden. Og derfor er jeg interesseret i, hvad du tænker om det – om fremtiden – og hvordan det måske kan påvirke, hvordan vi uddanner arkitekter og andre fagfolk inden for det byggede miljø. Hvordan vi kan ændre den måde, arkitekter arbejder på, som du siger, hen imod en mere politisk arkitektur.

Beata: Tak, og ja – der er virkelig meget i dit spørgsmål og i din beskrivelse, som jeg gerne vil bygge videre på eller fortsætte med. Der er nogle ting, som måske peger i retning af, hvordan jeg forestiller mig fremtiden, eller hvad der er vigtigt at tage med os. Jeg synes, det er afgørende – som du nævner – ikke at se funktionsnedsættelse eller tilgængelighed som noget, der blot tilføjes til sidst i processen. Det er virkelig vigtigt, at disse erfaringer og denne viden er med os helt fra begyndelsen af designprocessen. Designteams bør i langt højere grad afspejle befolkningen – og det handler om at kunne være nysgerrige på hinandens blinde vinkler og lære af hinanden. Det mener jeg er helt centralt. Måske skal vi også tænke processen som noget, der ikke nødvendigvis følger en glat og lineær A-til-B-logik, men som kan være langt mere rodet og langsommelig – og måske netop i en sådan mere kompleks og uforudsigelig praksis kunne der opstå mere kreativitet og glæde. Men jeg tror også, at det ville være en proces, der ville fremstå ret misfitting i en vækstøkonomisk logik. Så det at gentænke processen og gentænke, hvem man arbejder sammen med fra starten af designarbejdet, er virkelig vigtigt. Du nævnte også ordet bæredygtighed, og hvordan man i arbejdet med en bygning – rent praktisk – typisk fokuserer på materialer og genbrug af materialer. Og jeg tænker, at selve ordet bæredygtighed måske ikke bruges så meget længere, fordi det på en måde er blevet ret udvandet. Det sker, når man bruger ord som brandingmarkører – når de anvendes isoleret. For eksempel her på Det Kongelige Akademi, når de studerende dimitterer, kan man tagge deres projekter med et FN-verdensmål, så man ved, hvilket problem projektet adresserer. Men den form for adskillelse og isolering af problemer og emner, vi skal arbejde med, er virkelig farlig.

Vi må, og det tror jeg, at jeg har sagt før, forbinde og sammenkoble disse kampe og se dem som indbyrdes forbundne. Og i forlængelse af det, altså idéen om fælles kampe og sammenvævede professioner og praksisser, mener jeg, det er helt afgørende – og måske understreger jeg bare noget, som folk allerede har gjort i årtier – at samarbejde med aktivister og akademikere fra andre felter. Jeg ved godt, det siges, at arkitekter arbejder tværfagligt, men ofte er det med ingeniører eller andre aktører i en generisk bygge- eller designproces. Jeg mener, det skal udvides betydeligt og inkludere mennesker på jorden og aktivistiske fællesskaber.

Og ja, det vil nok føre til det, jeg også nævnte før – mere rodede, mere besværlige og langsomme processer. Men jeg vil gerne benytte lejligheden til at understrege, hvor vigtigt det er. Og også at invitere ikke-arkitekter ind i design og uddannelse. Det er faktisk noget, vi som undervisere kan bidrage til – bare en lille smule.

Jos: Ja, helt sikkert. Og for mig er det virkelig interessant under dette tema for podcasten – rethinking disability – at noget af det selvfølgelig handler om at understrege, hvor vigtigt det er at tænke tilgængelighed og inklusion som noget, der skal være med hele vejen gennem processen, og ikke bare som en lidt kedelig kategori, der skal håndteres som et teknisk problem til sidst.

Men jeg synes også, at samtalen med dig har vist, at det faktisk går meget dybere end det – det handler om praksisser og om idéen om, at vi skal se på, hvordan praksisser kan ændres, og at de faktisk skal ændres ganske grundlæggende. For mig er det en del af, hvordan vi begynder at tænke tilgængelighed og inklusion på en langt rigere og dybere måde.

Så tusind tak, Beata. Jeg har virkelig nydt denne samtale.

Beata: Mange tak, Jos.

Jos: Indtil nu har vi hørt fra Camilla om arbejdet med – men også udvidelsen af – begrebet universal design, særligt i forhold til at udvide måden, vi tænker funktionsnedsættelse, tilgængelighed og inklusion på. Og med Beata har vi talt om, hvordan denne udvidelse også indebærer at forbinde universal design bredt med andre problematikker – herunder klimakrisen og social ulighed. Vi har også talt om, hvordan alternative begreber fra forskning og aktivisme, såsom fitting og misfitting – kan hjælpe os med at gentænke handicap på kreative og produktive måder. Men det er afgørende, at vi også sætter de mangfoldige erfaringer og den viden, som personer med handicap selv besidder, i centrum. Jeg vil gerne introducere Helen – en britisk kunstner med arkitektfaglig baggrund. Hun deltager online. Helen, vil du starte med at præsentere dig selv?

Helen Stratford: Ja, jeg hedder Helen, og jeg er kunstner og arkitekt. Jeg har personlig erfaring med funktionsnedsættelse og lever med en kronisk smertetilstand. Jeg kommer helt klart fra en arkitektfaglig baggrund, men har gennem min kunstneriske praksis virkelig udforsket det offentlige rum.

Jos: Og jeg synes, det er virkelig interessant – vi har jo kendt hinanden i mange år. Jeg kendte dig, før du udviklede kroniske smerter. Så det har været meget interessant at se, hvordan du har videreudviklet den kunstneriske praksis, du allerede havde – eller den kunst/arkitektoniske praksis – og hvordan du har inddraget din egen kropslige erfaring ind i det. Det ville være fantastisk, hvis du kunne uddybe lidt, hvad det har betydet for dig.

Helen Stratford: Ja, jeg synes, at de seneste år har været ret transformative på mange måder. Jeg udviklede kronisk smerte, og tidligere brugte jeg performance-baserede praksisser til at undersøge magtstrukturer i det offentlige rum. Jeg kiggede på hvordan offentlige rum bliver skabt gennem lag af forskellige sociale, kulturelle, politiske og økonomiske faktorer – og hvordan disse lag udelukker bestemte mennesker, og også hvordan nogle fysiske miljøer interagerer med disse lag. Det der skete var … det jeg tror der skete var, at de performance-baserede praksisser var et valg. Du ved, jeg ville ofte inviterede folk til at lægge sig ned i det offentlige rum for at udfordre de sociale normer og den gængse etikette. Jeg arbejdede sammen med performancekunstneren Diana Wesser [i 2008], og det var første gang, jeg virkelig gjorde det. Det vi gjorde, eller det Di gjorde var, at hun satte sig midt i Piccadilly Gardens [Manchester, UK] og på den måde stillede spørgsmål ved måden rummet var designet som gennemgangsrum, og dermed afdækkede forskellige magtstrukturer, og positionerede os som kvinder i det rum.

Det var en virkelig interessant proces. Men mere nyligt blev det, som før var et valg, at sætte sig ned, på trods af, at vi er bundet af en slags social etikette, blev til en nødvendighed. Jeg var nødt til at lægge mig ned, fordi jeg simpelthen ikke kunne fortsætte uden at gøre det. At ligge ned lindrede smerten, men fjernede den ikke helt – det gjorde det dog muligt for mig at fortsætte med at arbejde.

Jeg vil også sige, at min praksis har været fokuseret på at være i og udforske det offentlige rum. Og da jeg var rigtig syg, kunne jeg faktisk ikke engang komme ud i det offentlige rum. Så jeg begyndte at tænke over nogle måder at arbejde og lave værker baseret på antagelser om bestemte typer kroppe, som kan det. Og uden at gå for langt ud ad en tangent, så tror jeg, at kunstpraksis generelt afhænger meget af synlighed og evnen til fysisk tilstedeværelse. Og det var noget, jeg ikke længere kunne. Så jeg var nødt til at gentænke min praksis og virkelig overveje, hvordan den skulle være fremover.

Jos: Ja, og jeg syntes at... jeg mener denne podcast kredser om kreativitet i relation til funktionsnedsættelse, men den handler også om de ting som du taler om, ikke blot om hvordan det informerer og har ændret dit arbejde på nogle punkter, men også at det er selve praksisserne der må ændres. Det handler ikke blot om arbejdet, men også hvordan vi organiserer, og hvordan selve strukturerne som universiteter og arbejdspladser er bygget op omkring også må forandres, mener jeg.

Helen: Ja, helt sikkert. Der opstod en slags indre konflikt – jeg kalder det et ikke-forhandlingsbart krav – som min krop stillede til mig, og som fuldstændig kolliderede med min tidligere praksis.

Men også, ja, samtidig var jeg netop blevet færdig med min ph.d., og jeg var ved at starte min karriere – jeg underviser også i arkitektur – og jeg var lige begyndt på den rejse, men jeg havde… ja jeg kunne faktisk ikke komme på arbejde, og jeg var nødt til at nedbryde det hele i meget konkrete trin. Hvordan jeg kom på arbejde, hvordan jeg kunne gøre det på en måde, der støttede min krop, og om det overhovedet var muligt, og om jeg havde den nødvendige støtte til måske ikke at skulle rejse. Alle disse ting blev pludselig meget praktiske overvejelser, men for mig var det også virkelig interessant, fordi det gjorde nogle strukturer synlige – i en forskningsmæssig forstand – som en slags kropslig forskningsmetode. Det handlede om at undersøge de strukturer, der forhindrer kroppe, som ikke performer i konventionel forstand, i at deltage i livet, ja, i det offentlige liv.

Jos: Og jeg synes, noget af det, jeg virkelig værdsætter ved det, du har arbejdet med, er, at du har taget dine erfaringer og gjort dem til en del af din kunstneriske praksis. Så en af grundene til, at jeg gerne ville tale med dig er, at du deltog i en af de workshops, vi lavede her i København på Akademiet – som var en del af projektet A Society Built for Every Body. Kunstnere og arkitekter fra Storbritannien kom og lavede forskellige workshops. Og jeg tænkte på om du kunne fortælle lidt mere om, hvad du lavede, fordi den workshop handlede i høj grad om, hvordan du håndterer hverdagslivet.

Helen: Ja, det var en udfordring. Der var både studerende med og uden funktionsnedsættelser i rummet. For mig var det, jeg tror at det første punkt var at tale om, ja vel om min form for rejse, og virkelig starten på at kigge nærmere på de daglige praksisser i mit eget liv. Bare det at komme ud af sengen, at komme ned ad trappen, at lave en masse fysioterapiøvelser, som var blevet ordineret for at få det bedre. Og virkelig det arbejde, der ligger i ting, jeg tidligere havde taget for givet – og hvordan det arbejde strakte sig langt ud over den type arbejde, jeg kunne udføre, hvis jeg var i stand til at sidde ved en computer i 20 minutter ad gangen. Alt det arbejde, der ligger omkring disse daglige processer. Så det jeg gjorde, var at invitere de studerende til også at kortlægge deres egne processer. Og så tænke over de tidspunkter, hvor de oplevede friktion. Så forskellen mellem den planlagte arbejdsdag, de ting de havde tænkt sig at gøre, og så måske hvordan de faktisk ikke kunne gennemføre disse ting, eller bare det at komme hen til workshoppen. Som du ved er det ofte at folk har forskellige oplevelser med at komme til et sted, det kan være en konference eller en workshop. Så vi startede med at reflektere over de processer, vi normalt tager for givet. Og tænkte over, hvordan normative kroppe i verden faktisk ser ud, eller når man er syg, eller bare, ja, uden at reducere det, når man står i sociale situationer, og forsøger at forudse hvad der vil ske, og har brug for at føle sig tryg. Så disse slags udfordrende rum, som alle oplever, men som ingen rigtig reflekterer over. Det gav en mulighed for at tænke over det. Faktisk begyndte der er komme situationer frem, hvor de studerende havde følt sig virkelig trætte, men de har været nødt til at fortsætte med at arbejde fordi de havde en deadline, eller fordi de har været syge. Og så begyndte vi at møde folk, der var villige til at dele forskellige aspekter af deres egne erfaringer med funktionsnedsættelse, kroniske smerter og neurodiversitet. Det handlede om at skabe rum for, at disse erfaringer kunne være til stede. Og ja, det tog faktisk ret lang tid, for det tager tid at kortlægge alle de ekstra ting, der ligger omkring det, vi normalt opfatter som arbejde og produktivitet. Så det var dér, vi startede. Og derefter delte vi og reflekterede over det, og ud fra det lavede vi det, jeg kalder rekvisitter, hvilket ledte os til at tænke over hvad vi gerne ville have til rådighed i hverdagen. Noget, der kunne bidrage og give komfort i forhold til de friktioner vi oplever, eller måske gøre dem synlige for andre. De studerende lavede mange forskellige ting, og der var meget fokus på det at kunne ligge ned og hvile i løbet af dagen, så ting man kunne tage med sig og rulle ud. Jeg bruger også meget humor i min praksis, så vi tænkte på måder hvorpå sproget rekreation og rehabilitering ofte kan være ret invaliderende– som om man skal blive rask, skal blive bedre. Men hvad nu hvis man har en tilstand, hvor det aldrig kommer til at ske? Hvor placerer det en i forhold til ens værdi? Så de brugte de her former for motivationsplakater, og lavede også en selv. Så det var virkelig sjovt med den her reklameagtige jargon. Der var en særlig oplevelse med en studerende, som brugte kørestol og som var ikke-verbal, og som brugte tekst til at kommunikere deres daglige proces. Det var virkelig fint, fordi jeg bruger ofte en slags flowdiagram spørgeskema og beder folk om at udfylde den, fordi den sætter en lineær tidsramme op mod en mere udvidet tidsforståelse. Denne studerende brugte tekst til at beskrive processen med at stå op om morgenen og samarbejdet med deres PA – deres støtteperson – for at komme i tøjet og gennemføre de daglige rutiner. For mig var det et virkelig spændende øjeblik, og jeg har haft mange møder med folk, der siger: “Ja, det her taler virkelig til mig – det taler til mine processer og hvordan jeg kan kommunikere dem til andre, som normalt ikke reflekterer over det.”

Jos: Jeg synes, det er virkelig dejligt at høre dig tale om det, fordi jeg synes, det formår samtidig at udvide idéen om, hvad tilgængelighed egentlig er. Så det handler ikke kun om funktionel tilgængelighed for personer med funktionsnedsættelse, men det gør det også muligt for en meget bred gruppe af mennesker med nedsat funktionsevne at tale om det, tænke det igennem, forklare det og reflektere over det på en virkelig nuanceret måde. Og som du siger, ofte også på en ret humoristisk måde. Noget andet, jeg gerne ville spørge dig om, som relaterer sig til det, er, at noget af det, der er ved at vokse frem fra forskning og aktivisme inden studier og videnskabeligt forskning om funktionsnedsættelse, er et slags nyt sprog. Altså, hvordan taler vi om det her, og hvad er det, vi forsøger at fremhæve? Og nogle af de begreber, vi begge har brugt, og som virker meget hjælpsomme, især, synes jeg, i relation til kroniske smerter, er crip time og spoon theory. Jeg ved, at du bruger de begreber, så jeg tænkte, det ville være rigtig godt, hvis du kort kunne forklare for lytterne, hvad de betyder.

Helen: Ja. Jeg kan nok bedst tale om, hvad de betyder for mig.

Jos: Ja, selvfølgelig.

Helen: Ja for mig er crip time et virkelig spændende begreb, og da jeg først opdagede det, var jeg ikke klar over, at det kom fra aktivisme omkring funktionsnedsættelse eller var blevet indrammet i en akademisk kontekst. For mig var det en idé om tid, der ikke er lineær, som på en eller anden måde accepterer en procesbaseret forståelse af smerte. Og med det mener jeg ting, der ikke har en slutdestination. Jeg tænker her på Kaiya Waerea, som er forlægger, kunstner og forfatter baseret i London. De har virkelig undersøgt spørgsmålet om fremtiden for personer med funktionsnedsættelse, hvordan man kan skabe og formulere måder at tale om fremtiden på. Jeg tror, det handler om at udvide perspektivet, fordi vi ofte tænker på fremtiden som noget, vi planlægger hen imod det næste skridt. Det var noget, jeg selv oplevede. Jeg havde en plan for, hvad jeg skulle gøre som det næste i mit liv, men den blev fuldstændig opgivet. Og jeg tror, det handler om at anerkende, at der findes forskellige tidsrammer – og at de faktisk kan være, med forbehold, frigørende i den forstand, at man kan sige den måde, vi lever på i et neoliberalt samfund, hvor vi hele tiden planlægger det næste skridt – hvor vi skal nå frem uafhængigt, med en lineær progression og med fokus på produktivitet alt er indrammet af næste step og hvordan vi når dertil. Men når man ikke kan planlægge for den næste dag, måned eller år, og det hele føles skræmmende, hvordan kan man så tænke over det på en måde, som giver energi? For mig blev crip time en måde – som et opgør – en måde at modstå disse livsmodeller, som jeg allerede fra et feministisk perspektiv var begyndt at kritisere. Men for mig var det et virkelig spændende øjeblik at kunne sige, faktisk er disse kropslige erfaringer, levede erfaringer, som virkelig får en til at føle, at den måde at leve på er grundlæggende forkert. Den er virkelig usund. Mimi Khúc, som er en fantastisk akademiker, taler om, hvordan hele akademia usundt. Jeg synes, det handler om at vende op og ned på, hvad vi forstår som sundt, og sige, at vi lever i et samfund, hvor bestemte måder at leve på bliver værdsat over andre, og hvor bestemte tidsrammer bliver værdsat mere end andre. Det betyder, at vi går glip af en hel masse andre erfaringer.

Så jeg tror, at spørgsmålet om relative forståelser af tid inden for crip time, noget jeg virkelig har oplevet direkte. Gennem samarbejde med andre personer, som har forskellige former for funktionsnedsættelse, forskellige tidsrammer de arbejder med, og hvor det er nødvendigt at skabe plads til, at forskellige mennesker, ikke skal indhente, for det er en slags diskriminerende tankegang, men for at have energi til at møde dig, eller måske slet ikke møde dig, og at have den plads til at lade det ske inden for arbejdsprocesser, forskningsprocesser og skabelsesprocesser, det syntes jeg virkelig er spændende og udfordrer de mere skemalagte tilgange.

Jos: Ja, og jeg syntes, at jeg personligt har lært rigtig meget. Jeg begyndte jo inden for arkitektur, hvor arkitektonisk rum i høj grad handler om det fysiske og materielle rum, og hvordan det iscenesættes – og at vi faktisk burde, fordi vi taler om mennesker og mangfoldige mennesker, tale om rum, tid og energi samtidig, fordi de ting er fuldstændig forbundne. Måske du kort kunne forklare spoon theory.

Helen: Spoon theory, ja! For mig blev det præsenteret i forbindelse med, at jeg gik til kognitiv adfærdsterapi (CBT), som ofte anbefales til personer med kroniske smerter. Jeg var en smule skeptisk, både over for CBT generelt og over for spoon theory. Men faktisk viste det sig at være virkelig nyttigt. Især når jeg pendler, tænkte jeg “Hmm, jeg ved ikke helt”, men da jeg satte mig ind i det, syntes jeg, det var virkelig interessant. Jeg kiggede lige på det igen, og det er jo en metafor. Grundlæggende handler det om, at man i stedet for at have 12 timer, har 12 skeer. Det er sådan, min mand ville formulere det. Men da han sagde det til mig, og jeg forsøgte at forklare det for ham, sagde jeg: “Nej, det handler faktisk ikke om timer.” Timer er en opdeling af dagen med et fast antal minutter, og det antages, at alle møder dagen på samme måde. Vi har alle 12 timer og kan bruge dem, som vi vil. Men spoon theory siger faktisk, og her bliver det virkelig nyttigt, at det handler om mængder af energi, og at vi ikke alle møder dagen på samme måde.

Nogle af os starter måske dagen med tre skeer allerede brugt, måske har vi sovet dårligt, eller måske er det bare sådan, vi har det, når vi vågner. Nogle har måske allerede brugt otte skeer. Det handler om at være opmærksom på det og på, hvordan kroppen har det, og at kunne sige: “Hvad kan jeg gøre i dag, som ikke fuldstændigt...”  og det var en anden erkendelse af om jeg tømmer mine skeer for dagen. Hvis jeg har 12, så vil jeg ikke løbe tør. Ofte er vi blevet programmeret til at tænke, “Hvordan kan vi bruge al energi og alle timer på en effektiv, nyttig og produktiv måde?” Men spoon theory siger, at aktiviteter, som ikke anses som arbejde, også bruger skeer. At stå op bruger skeer, og det er forskelligt for alle. Det er forskelligt fra dag til dag, og det er forskelligt på forskellige tidspunkter af dagen, det kan være anderledes om morgenen end om eftermiddagen, og det handler om at anerkende den slags mikrodetaljer.

Men jeg er også en smule modvillig over for at tænke i klare grænser for, hvad skeerne betyder for forskellige mennesker. Så jeg er lidt skeptisk over for ting, der deler alting op numerisk. Men for mig har det været virkelig nyttigt til at kommunikere med andre og sige: “Nej, jeg har kun fire”. Hvis du møder nogen, og de spørger: “Hvor mange skeer har du?” – så kan du sige: “Jeg har kun fire tilbage i dag”. Så jeg synes, det er virkelig nyttigt til at kommunikere, hvordan man har det, og tage den tid, man har brug for.

En ting, jeg oplevede, da jeg arbejdede sammen med Raquel Meseguer Zafe, som er dansekunstner, og vi arbejdede med Questions of Rest, og nævnte Jess Thom, som er kunstner og også kendt som Touretteshero. De taler om idéen om en socialistisk tilgang til energi. Det er virkelig nyttigt, fordi de taler om, at hvis alle er trætte ved dagens slutning, så har vi en slags fælles, socialistisk idé om energiforbrug i løbet af dagen, men faktisk vil jeg sige, at det ville være bedre, hvis vi ikke alle var udmattede ved dagens slutning. Det slog mig, skal vi virkelig udmatte os selv?

Jeg tror, at især inden for arkitektur, og jeg læste for nylig en studenteropgave om dette emne, skrevet af en person med erfaring fra en autoimmun tilstand, som kritiserede dette aspekt. Vi bliver ofte fortalt, eller narrativet er, at vi skal bruge alle dagens timer. Da jeg begyndte på arkitektur, fik jeg at vide, at jeg ville arbejde hele dagen, at jeg ville fylde skraldespande med kasserede idéer. Jeg ville bare skulle arbejde og arbejde, og sådan ville det bare være. Men faktisk behøver det ikke være sådan. Det er en komplet, tør jeg sige det, en form for macho myte, at vi skal gøre det. Og det handler om at finde andre måder at arbejde på. Naomi Stead har lavet et fantastisk arbejde med at finde alternative måder at praktisere arkitektur på. Ja og feminister, og arbejde ud fra en feministiske praksis.

Jos: Ja...

Helen: Du kan nok høre, at jeg er meget passioneret omkring det her...

Jos: Helt sikkert, det samme gælder for mig. Jeg mener, at det, der kommer ud af at arbejde med handicap og forskellighed, er, at det faktisk synliggør den energi, der kræves for at navigere i det byggede miljø, for at forhandle møder med andre mennesker, og for overhovedet at kunne udføre bestemte former for arbejde – og at alt dette er del af den slags arbejdsfikserede kultur. Alle disse ting tærer på energien, og det at tænke over energi, hvem der har den, og hvordan vi hver især håndterer den, åbner op for en lang række problemstillinger. Jeg syntes, at denne podcast handler om at gentænke handicap, og det, der har været virkelig fint ved at lytte til dig og tale med dig, er, at det både kommer fra perspektivet af den levede erfaring med funktionsnedsættelse, men også taler til erfaringer hos mange forskellige mennesker, også dem, der sandsynligvis ikke ville tænke på sig selv, du ved, som bestemt ikke ville betragte sig selv som personer med funktionsnedsættelse, men som ville se sig selv som fuldt funktionsdygtige. Det at åbne op for den slags erkendelser og bevidsthed rummer et positivt potentiale for at modstå nogle af de pres, der findes for at være en bestemt slags person. Jeg synes, det er virkelig vigtigt i disse tider.

Jos: Så tusind tak, Helen. Tak.

Helen: Tak. Det har virkelig været dejligt.

Jos: Det er virkelig godt at afslutte denne episode med et fokus på at gentænke handicap, som tager udgangspunkt i den levede erfaring og viden om handicap. De begreber, der er blevet berørt her, fra universal design til misfitting, crip time og spoon theory, kommer alle fra personer med funktionsnedsættelse selv, og det er virkelig vigtigt, at personer uden funktionsnedsættelse, som arbejder inden for designfeltet, lytter til og lærer af denne rige og mangfoldige ekspertise.

Mange tak til Camilla, Beata og Helen for at tale med mig i dag, og til Det Kongelige Akademi og Bevica Fonden for at støtte dette projekt. Disse podcasts dækker kun en lille del af de mange fantastiske initiativer, der foregår omkring handicap, tilgængelighed og inklusion på Det Kongelige Akademiet i København og andre steder. Vi håber, at ved at reflektere over vores egne erfaringer med at gentænke handicap i uddannelse og praksis, kan vi inspirere andre til også at bringe deres innovative, kreative og kritiske tilgange til inklusion og tilgængelighed ind i alt, hvad de gør. I næste episode, Universal Design and… Bodies, Buildings and Spaces, vil vi se nærmere på nogle praktiske metoder til at undervise og designe mere inkluderende. Jeg er Jos Boys, gæsteprofessor ved Det Kongelige Akademi og meddirektør for The DisOrdinary Architecture Project. Tusind tak fordi du lyttede med.