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David Ruebain: disability, protest movements, law, equality, inclusion, interdependence | Podcast

June 5, 2023 Ben Yeoh

David Ruebain is one of the most thoughtful thinkers I know on disability, equality and the law. He is currently a Pro-Vice Chancellor at the University of Sussex with strategic responsibility for Culture, Equality and Inclusion including dignity and respect. He is an adviser to the football premier league, the former director of legal policy at the equality and human rights commission and has been in the top 25 most influential disabled people in the UK. 

We chat on:

Social change seems to come about in a complex way. But peaceful protests seem to have had influence on some social topics. What is the importance of protest? In particular, thinking about the disability rights movement.

David gives insights into his role and view into the UK disability rights movement. The roles of agency and simplicity of message. The comparison with the climate protest movements. 

David’s work with the UK football premier league and also the equality commission. What types of policies are successful for equality and diversity. What challenges are structural and what that implies for solutions.

The role of interdependence and that means at the moment. Whether the law can deliver inclusion and what that means.

How ordinary talking about equality seems now vs the 1970s. But how it itself will not be enough for humanity. 

“Equality is what we all wanted in the seventies; for those of us who considered ourselves progressive. But now it feels fairly vanilla really as an idea. Equality is simply about level playing fields, with its sort of a zero sum game approach to if two people are in a race, nobody should be unfairly disadvantaged for any relevant consideration, which of course is true. It's sort of almost unarguable. But it isn't especially ambitious. … But if we are really to bring about the change which will ensure the survival of the species and other species, it will need more than equality, I think.” 

We end on David’s current projects and life advice.

“....do what you need to do to believe in yourself because so many of us don't or doubt ourselves. That doesn't mean to say-- I think first of all, that knowing there's nothing profoundly wrong with anyone, including whoever you are. But secondly, knowing that from that perspective you get to learn and evolve; it doesn't mean you say rigid in the position. So there's something the risk of sounding like a not very good therapist. There's something about really believing in yourself…”

Listen below (or wherever you listen to pods) or on video (above or on YouTube) and the transcript is below.

PODCAST INFO

  • Apple Podcasts: https://apple.co/3gJTSuo

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  • Anchor: https://anchor.fm/benjamin-yeoh

Transcript with David Ruebain (only lightly edited)

Ben (00:02):

Hey everyone. I am super excited to be speaking to David Ruebain. David is one of the most thoughtful thinkers I know on disability, equality, and the law. He's currently a pro vice chancellor at the University of Sussex with strategic responsibility for culture, equality, and inclusion, including dignity and respect. He is an advisor to the Football Premier League, the former director of Legal Policy at the Quality and Human Rights Commission, and has been in the top 25 most influential disabled people in the UK. David, welcome.

David (00:37):

Thanks very much, Ben. Thanks for having me.

Ben (00:40):

Social change seems to come about in a complex way, but peaceful protests seem to have had influence on some of these social topics. You were involved in the disability rights movement, particularly here in the UK, and protests seemed to be quite an important part of that movement. How important do you think is protesting social change movements and what other factors do you think go into this type of social change?

David (01:09):

I think it's tremendously important. I don't know that I can say it's necessary for every area of change; I don't know that. But it has certainly been critical in affecting significant areas of change, I would say over the centuries. And as you mentioned, I was heavily involved in the disability rights movement in the 1980s and 1990s. I saw firsthand really the kind of step changes that arose as a result of increasing activism. At one point, I was vice chair of the Rights Now campaign, which was at the time, a national coalition of organizations campaigning for civil rights for disabled people. I mean, perhaps I should say that the principle demands at the time were for a significant change, a step change in understanding and thinking about disability from one which is often called the medical model or charity model, which is about repair or rehabilitation or providing minimum standards of accommodation and finance and so on to one which sought to treat disabled people as equals and afford them legal rights as such in the way that had happened at that point to some extent, at least for women and for black and racially minoritized people.

Nowadays, I suspect we see that as being almost prosaic and ordinary. But at the time, it was quite a radical agenda to think of disability as a civil rights issue and not just a medical or a quasi medical issue. Disabled people themselves had began campaigning for it in a number of ways. But really, the change accelerated through activism, through demonstrations, occupations; various forms of civil disobedience. And the Rights Now campaign, to which I refer was what became an umbrella organization, was something like 80 or 90 civil society organizations, which collectively represented, I'm pretty sure over a million people. Because it included the trade unions local authorities, as well as disability organizations. One can debate and discuss the extent to which laws-- which is what was demanded. Laws came into effect because of that.

But I do remember that at the time, the initial response of government to a demand for civil rights legislation for disabled peoples was, "It's not necessary." And then after a couple of years, it became, "It might be useful, but it's too expensive." And then a few years later, it became, "It might be possible in some instances, but it will conflict with other legitimate rights." And then later on it became, "It's not a priority." And then eventually it was, "All right then." Nothing conceptually or intellectually had changed in those various stages. But to my mind, there is no doubt that the external pressure led to the eventual enactment of the Disability Discrimination Act 1995, which was the first piece of legislation. Now, I should say that some disabled people in their allies thought that that was insufficient. It is stronger now-- Current legislation is stronger than it was then. But to my mind, I thought it was a huge victory, really. And it was because conceptually, if nothing else, it placed disability as an issue of exclusion and underrepresentation as much as a medical or a private medical tragedy.

Ben (05:17):

And that first law, as you've alluded to, was not the final step. And in fact, arguably the journey is still ongoing. I guess hearing that, there's two things I reflect upon. One is, I guess what it's like being both parts of such a broad movement. And you look at some movements today, I'm interested in kind of the decentralization of leadership to some extent, or like multi collaboration between many kind of people and stakeholder groups of not necessarily a leader, but there always does seem to coalesce around certain figures. And I wondered how you think about that in terms of sort of structurally organization in terms of social movements. That also echoes into my question alongside that which is, the part of the kind of culture change piece, because the law obviously was a great step change.

But I reflect back listening to the stories and hearing things now. But this idea of a social model of disability or this idea that it's not all about the money or financialization. It's about making a more inclusive place that's sort of seemed to be the start of that movement as well. And that culture change piece, you can't really legislate for. I mean, you don't really legislate for either. It's in how people think. So I guess it's an interconnected one is with a broad social change movement in getting a lot of people and that decentralization and how do you think that goes, do you think that's part of the key for getting the broad culture change piece to go alongside the law?

David (06:55):

Yes, I do. I think if I understand your point, Ben, I think-- I mean, many more erudite people than me have written about power having to be taken, not given and related maxims like that. But I think that-- I mean, if we take the environmental crisis, which you and I have spoken about it and I know that you know a lot about it as well in terms of your work. I think many people will have strong views about the activities of extinction rebellion. Some are very supportive and others oppose their actions because of its disruptiveness. But it is very much-- and I don't try and say that I understand or know everything. [ ] I even think everything that happens is wrong. But it is based on quite a compelled theory of chain, how societies evolve and change by reaching a critical mass of activity.

And in reaching that critical mass of activity, a level of disruption is required. Now, of course, you can debate and dispute, "Where the line should be. Is there a line that there should be? Should we not disrupt certain things because it causes too many other problems, or it's too difficult?" And there are legitimate conversations to be had there. But I do think that there is merit, at the very least, in communal action. Because otherwise without that, then we're left with what to my mind seems to be very narrow models of democratic participation, which is basically either involvement in an established party and/or voting. But whether it's citizens assemblies, whether it's demonstrations, whether it's petitions or other forms of town hall meetings, other forms of activity; nonviolent direct action as well. It seems to me that that is a key characteristic of change and probably has been in every major change event over the centuries.

Ben (09:36):

Yeah. I think of-- What is it that quote? I think, is it Martha Luther King Jr. That the creative dedicated minority has always made the world better or some such like that. Yeah, I think you've convinced me. I flip-flopped on protest movements of where they are. We're particularly related to climate because it's so intersectional and broad. But I think you have raised in general my feeling about how these movements can do. And I think-- going back to my point, which I think you did get. I'm really interested in essentially, particularly in the climate movement, a real emphasis on a decentralized way or in some ways this is touching on inclusivity, but the fact that they don't put the power in a few people. I mean, they have leaders just by nature of the kind of charisma force of what those people are doing. But quite purposely, they don't want those same kind of power structures. And I think that's really interesting in spreading that. Although the flip side is then you've got some groups which will do things that other people don't agree with within the movement. So there are some downsides to it, but I think it's really interesting how broad that is and the kind of governance or non-governance structure of being decentralized.

David (10:48):

Yeah, and I mean, it raises-- I think communal activity is complicated. It doesn't lend itself to neat, straightforward, logical processes and outcomes. It's messy; kind of wide engagement is a messy process. But I think ultimately in a way, is it is its strength. So in the Rights Now campaign as I mentioned, we had 70, 80, 80 plus member organizations from disabled people's organizations, to parents organizations, to trades unions, political organizations, local authorities. And each of them had their own particularities around the issue and their own perspective. And probably if we had been interrogating them all, they would've said something slightly different. But it was essential that we were able to contain all of that. So our demands were very, very simple and deliberately so; rights not charity. We especially didn't go into a lot of detail about what that would mean for X, Y, or Z with a significant level of detail because at that point, we may not have maintained the cohesion of the collective.

And it was able to hold a range of diverse viewpoints because of the unifying central objective. That's a reason for a devolved model as you are describing. It's probably not the other one because I think people need to feel that they have agency. If things are too centralized or indeed hierarchical, you basically-- anybody who's not in the position of power is a foot soldier for want of a better phrase. It's very hard to maintain enthusiasm just as a foot soldier because you've got your own mind and your own thoughts and feelings and priorities and commitments. So I think in the long run those things don't work. And so even if you're just thinking of end goals, I think it's important to have a level of devolution and democracy really.

Ben (13:20):

So I'm hearing simplicity and agency; quite important ingredients in the movement. And reflecting maybe the last one on the kind of disability rights movement of that time. Were there other important steps or pieces of the puzzle that you'd articulate for anyone thinking around this? Whether you were targeting some key policy makers as well, or whether it was going in a way having a broad movement and then going kind of hand, hand combat to convince people or whether there was some other kind of tactical strategy in the movement that you felt was a key reason for success?

David (13:59):

Yeah, I mean, we had many advantages, if I'm honest. In the case of disability, even if you're not a disabled person-- and most people aren't... Disability is one of those identities which everybody can acquire. I mean, that itself is a whole other conversation about what is an identity and is it just a fact or is it a set of beliefs and whatever. But nonetheless, putting that to one side, anyone can become disabled. And indeed, if you live long enough, you probably will. Even if you're not-- thankfully nowadays most people have good contact with other disabled people or they may be family members or parents or companions or partners or coworkers or whatever. The idea of rights, not charity, was broken down into very simple evidential nuggets.

Like, "Why can't I live with my friend?" Or, "Why should my coworker not be able to get in the building?" It was probably slightly more elegantly put than those, but... They were kind of very simple moral imperatives, and that was coupled with... I think we were at a moment in time in a wider political sense, the kind of individualism and autonomy, which had been very much foregrounded by Margaret Thatcher and Thatcherism in the early 1980s. Had really begun to look very tired and offensive to some people. We'd been through the minor strike, we'd been through a heavy period of de-industrialization, and depending on how you think about it, a shift from a materials based industrial society to a much more knowledge based economy. I'm not saying that's right or wrong, but with that came tensions and destructions of communities and so on.

So there was a strong feeling increasingly widely held that foregrounding of individualism was wrong. And we'd seen the poll tax, which is a classic example of that, which is where-- For those listeners who were old enough will remember that it was all about everybody paying the same amount regardless of your income for council services. And there was such a visceral reaction against that because it was an ultimate individualistic rather than societal response to being in a community that it was ultimately rejected and finally brought down Margaret Thatcher. So the Rights Now campaign and Civil Rights for Disabled people rode those waves.

Also, the kind of longer arc of history about civil rights for black people and for women, as I mentioned and emerged in other issues for marginalized people. So there's very much. I think we were lucky, or I think we were of our time at that moment. 1991, George Bush not known for his kind of very liberal or progressive tendencies. Was it George Bush? Have I got that right? Anyway, whoever was the president in 1991 in America certainly was a Republican, passed the Americans with Disabilities Act four years ahead of the United Kingdom. We already had evidence of the fact that those voices which were saying that it's too costly, we can't afford it, disabled people don't need it, whatever, it was increasingly impossible for the change to be resisted. So I think there was a constellation and a conflation of a whole range of forces which allowed it to happen. I'm probably answering a completely different question at this point, but...

Ben (18:24):

No, I think that makes a lot of sense. So, I mean, one of the big pieces you highlighted was empathy. People could understand it.

David (18:31):

Yes.

Ben (18:31):

And then I think this really important moment in time or riding a wave, or maybe history comes in these kind of waves as you had if you go back a little while away, slavery, women's rights, black and minority rights coming through, and then the movement in the US. There's a little bit with that within climate and climate justice as well. But I do think one of the things that climate struggles with actually is this empathy piece, because it's more diffuse. It's a crisis which is pervasive and everywhere. And you can't ask that same question of your neighbor, particularly in rich nations, where actually it falls. It falls unequally not as badly in rich nations. But you can't ask for your friend who can't get access to a building or those very visceral why questions when it's desertification in Africa or this kind of diffuse.

So I think that is a key difference. But it is interesting here you also talking about a moment in time, because I do think the environment is seeing that somewhat. Perhaps pivoting a little bit to your work with the equality commission from there. My wider question here is that when I look at your work, there's a really strong thread of essentially evidence-based work, what actually might really work as opposed to, for instance, in corporate world, slightly different, I guess from academic and everyday place. But in corporate world, when I think about or I see corporate, culture, and diversity, a lot of it is just simply, I think your phrase is, "Let's just be a little bit nicer to one another." That's a kind of common sense culture thing is not really to do with diversity, inclusion, DNI, or culture or quality or all of those things which is kind of common sense. And then also there are some things which are contested and maybe don't really work or are not as clear as some other things. So I was wondering what kind of evidence-based work are you most attracted by and what did you learn in the equality commission? Is that where a lot of that came from?

David (20:36):

Yeah, I mean, it's a great question, Ben. But actually it's a really important question for me. Before I joined the Equality and Human Rights Commission, I was a lawyer; a litigator in private practice. I basically sued organizations who we were alleging had either discriminated or had treated an individual, my client unlawfully. It's actually great fun suing; it's really, really good fun. It's a bit like a task and finish group with a clear end point, and you either win or you lose. So if you like playing-- I don't wish to trivialize this in any way-- I don't mean this in that way. But if you like playing games and you want to win and you believe in the cause and you enjoy what you do, which luckily, I have always been able to do. You can try really hard for something and if you're successful, you are successful. And then you move on to the next case, and then the next case.

So it's a bit like having a fight with very clear rules sort of thing. Then there is an outcome, and hopefully you'll succeed. And often we did-- not always-- often we did. But what I found from that, and why I stopped practicing eventually was because the change was limited; were two things. The change was limited. If you were successful, you would afford a remedy to your client. If you were really successful, you would bring about wider change which would hopefully benefit some other people as well if it was a change in the law or in processes or approaches. But it was incremental and often you ended up taking similar cases time and time again.

The other thing is it became very-- If I was ever in any doubt, it became very clear to me from the outset that this wasn't about good versus evil at all. This was about a structural set of arrangements. So the organizations who were acting in ways which was disadvantaging the people that I was representing. Clearly they shouldn't have been, and I didn't want them to, but they weren't doing it out of malevolence. I don't rule that out. I'm not saying that nobody's malevolent; some people may well be malevolent. But in my experience, that's not the common approach. And increasingly, I was attracted by theoretical understandings of oppression as structural. So the work that I went to do at the Equality and Human Rights Commission, which was as director of legal policy, which was really about looking at levers for national change and then subsequently in my other work, has been about-- obviously behaviors are important and egregious behaviors of any sort should not be permitted.

But beyond that, what is the cause for the evidential data backed approach, which shows chronic areas of underrepresentation and disadvantage. We know a lot more about it than we ever did and we know what are the issues. And they are overarching these structural issues; some of which are cultural, some of which are legal, some of which are organizational. But it is that, which it's not necessarily easy to resolve, but it is very much about that in my view. And I think that interestingly, I'm lessened notwithstanding that-- I think civility and kindness and respect for everybody is important. I almost take that as a given in terms of what we've expected. And actually I'm looking at I think the challenging areas are these much bigger issues.

Ben (24:55):

Yeah, that's fair. So I'll come on to I guess institutional bias or institutional racism, whether it's conscious bias or not; and not just racism, there are other structural things. But maybe before that, I would be interested if in that time or your reflection over the past decades on, what do you think are the kind of policies or guidelines which work which are most effective now that we have a foundational kind of piece of law in place? You've got more knowledge and awareness, although it's still a journey coming through. Are there any particular policies, either at the organizational level or things we should be advocating or looking to that you think like, these are my experience, are some of the most effective to looking at this area?

David (25:47):

I'll give you a couple of examples. So for large organizations, in Britain, the law requires that they publish annually in a certain format their gender pay gap, which is the mean, and I think sometimes median pay for men and women and the gap there in. And then there's a level of details sometimes which also has to be published. And that is really interesting because first of all, the gender pay gap is what it's not about is paying men and women different amounts for doing the same job. That would be straightforwardly unlawful. That would be what's called positive. That would be what's called direct discrimination and straightforwardly unlawful. What it is the average pay for men and the average pay for women and what that reaches for are issues of occupational segregation.

So it's a hierarchical organization, what's the distribution-- broadly speaking, it turns out to be about distribution between men and women in different grades. So if there is a gender pay gap, it's because there are many drivers. It's not only this, but often it's because women tend to do the more lower pay jobs than men than more higher pay jobs. But then there are particularities which are different in different organizations. What you can find. So the gender pay gap is an indicator to something, but it isn't, in my view, an end in itself. It's an indicator to possible structural issues. Why are all the people at C-suite level men, if they are? That's a structural issue probably. I mean, there may be also. I have to be [inaudible 00:27:48] egregious behaviors like sexual harassment and so on as well, which will play a part. But even if there wasn't, there would still be structural issues.

But actually it's possible to have a zero gender pay gap and for there still to be structural issues. So you could have a complex organization like a university where if you look at the mean or medium pay for men and women, you end up at roughly the same, so there's no pay gap. But there are maybe pockets of university activity where there are no women or no men for whatever reason. What I learned from that is in seeking to drive forward culture change and advanced equality, diversity and inclusion, there isn't really no... You can say, "We want to have proportionate numbers of men and women or black and or racially marginalized people and white people according to the populations or disabled people, which is roughly running at 15%," you can say that. And they will be useful indicators, but they're not the end point if the end point is really about full inclusion. I don't think any of us really know exactly what that would look like. I think it's a journey that we're on.

But the other example I would give, because you ask about successful initiative. I say that because I trying to point to the complexities I think of some of this work. But at the Premier League, we've instigated something called a premier league equality, diversity, and inclusion standard. Well, the Premier League has instigated that. That's a requirement of all clubs who wish to play in the Premier League. So obviously all clubs are going to do this because they're not going to refuse to be in the Premier League because they don't want to do it. It's a systemic change program that all clubs have to participate in, which requires collection of qualitative and quantitative data, effective analysis, and a production of an action plan. It's a standard approach for systemic change work.

And what we've seen is significant change over the years in not only the representation of marginalized people in football clubs-- I'm not so much talking about players themselves, although that's also an issue. But broader staff, fan bases, community activity, things like that. But also amazing initiatives that they do which in my view is sort of leading other sectors. If you would've asked me 10 years ago, "Would I think football could lead other sectors in inclusion?" I would've thought, "I think it's unlikely." But in many respects it is in terms of what organizations like football clubs could do within their communities and to be inclusive. That's very much process based, but I think it works.

Ben (00:31:09):

Yeah. That's really fascinating. And in your comments is kind of oblique critique of why quotas might not necessarily work because it's not to do with the structural, the process; and it's to do with the system. So one individual thing may not happen to work. I mean, there might be other arguments for and against, but a blunt quota may not get at a systems problem. Whereas at least if you start to do some of these things about understanding where the situation is and some of the causal roots and all of this, you might engender some of that change. And you kind of preempted my question about your experience on football in the Premier League. So perhaps I'll ask it wider about what do you think of organizations, which is not necessarily any their "fault" or an individual fault of how these behaviors and things have come about.

But there are claims particularly in the UK, but I think it applies to quite a lot of organizations where you look at this in the US or even in Europe around institutional bias, either racism or things like that. And then issues around that and changing that. I think in the UK particularly, there's-- Well, across a lot of things, but there's a renewed focus on the London police force. So I was wondering reflections on how that's happened over time. And again, perhaps a little bit what we can do for-- Your example in the UK, football's actually quite a good example of actually something which is steadily improved and probably much more than people would've predicted 10 years ago, which I think is kind of a hopeful point.

But there is still quite a lot of debate around that. So I'd be interested in all your reflections on that. And what we will do, particularly when maybe some of it is you could argue on the kind of unconscious bias part, and then some of it just seems to be behaviors which have built up over a long period of organizational time. So you don't really-- in fact, it's probably unfair to pin it on any one particular person. And it's a layering on layering of leadership over time. Some UK organizations seem to be particularly stuck with this as a challenge.

David (00:33:32):

Yeah, really interesting points, Ben. There's a couple of things I want to pick up. Well, first of all, you are right that more and more, I understand the issues to be structural and therefore not much less about end point change, which you might argue, is what something like a quota is. However, I actually do think there's a lot of merit in arguing for quotas. I mean, quotas in many instances is currently unlawful in UK law at least. So it's very difficult to operate lawfully if that's what you want to do. But the reason why I say it can be important is because culture is so contingent on things like dominant ideologies-- and group think and atmospheres and so on.

And if you have cultures which are relatively homogenous, which I suspect is part of the issue with the metropolitan police, although I don't know-- firsthand, I certainly don't know. Then they tend to replicate themselves and allow for some of these horrible, egregious things or create spaces for these horrible and egregious things to happen. And conversely, they mitigate against the idea of a sense of belonging for a wider group of people. One way of improving centers of belonging, which can in term disrupt hegemons and dominant cultures and make things more diverse and sort of embed diversity as an empirical experience, not just about numbers of people. One way of doing it is by having quotas. By saying, "We are underrepresented in this area, so we are just going to have a large number of these people coming in."

And of course, again, that's likely to be unlawful. We don't have positive discrimination in this country except for the asymmetric categories of disability, funny enough, and also marriage and civil partnership. It's very difficult to do that. There are some things you can do, which organizations are experimenting in terms of group higher work. But really belonging, in my view, is something which has become more and more understood in recent years for cultures. And if you are going to engender a sense of belonging for everybody, you're going to have to address homogeneity. So the argument for diversity is well understood and well made even from a bottom line argument; the general argument that heterogeneous organizations do better than homogeneous organizations, almost self-evident. But actually there are more subtle ways in which it's important, which is around-- Well, I'm probably repeating myself here; where if you have diverse groups, you are able to better people individually feel safer and more themselves and therefore are able to thrive.

Ben (00:36:59):

And, and for someone like the police force, you want to feel that the police force is a reflection of you and your society.

David (00:37:06):

Of course.

Ben (00:37:06):

I couldn't help but think that if your police force was 50/50-- let's put it the other way. More extremely. If it was 60 40 women and say 40, 50% made of minorities and conglomerate. I would find it really difficult to believe that you wouldn't via that just structure be quite different from where you are today. And maybe it's because you couldn't repeat what you had before within that. So I do take that point. And I have seen-- For instance, there's a decent amount of corporates organizations where you may not have that quota as the outcome, but they're looking at, for instance, balanced and diverse shortlists for whatever that you are looking for.

So even though, like in senior management, yes, you're still expecting it to be men, but if you're looking at a short list of six people, you need to really ensure that three are women and you've got some diversity in there because if your shortlist is only six men, you're never going to get there because of that. And particularly at the shortlist stage with all of those types of things. I was really interested also maybe picking up on some of that because we kind of touched on it, on your thoughts on the kind of inclusion piece. Because equality or a lot of equality law is kind of all-around about fairness. And to some degree there's this kind of-- you've described it as a zero sum game within some of that.

I look at some of it where you are kind of saying, "Oh, is someone worth an hour of work on this, or can you do that or not?" It's still very much within a market structure, not necessarily with this inclusion piece. And then I think also of my own experience-- So I'm going to put another 'I' word here. Maybe you can reflect on a kind of interdependency and the fact that we as humans, and actually all of the world is very interdependent on so many things, whether it's natural or physical or in humans relationships being social creatures. I have a little story or an anecdote about what I see in a kind of area, which is called music therapy, which I'm sure you'll know about. But where this therapist who's a musician essentially enables music to come out of another person; often a disabled person, but not always sometimes someone with a lot of other needs.

And what's really unique about this from a creative perspective and even a philosophical perspective, is that the musician is the enabler. The piece doesn't work without the two of them or without the group. But actually, the primary creation of the music or the creative act is not from the musician, it's from the therapist is often from the other person or the group. But it doesn't work without the two of them. It's only an independent piece of work. It's put often in the therapy world, but I see it as often really beautiful creative acts of the level of that you see on any other creative works. And I often think about that in terms of independence and how actually that's closer to how humans are and how we actually work in the real world. In any event, bringing it around was like your thoughts about how things have changed or your view on this inclusion piece which has now talked a lot about alongside equality and things like that and how it is actually maybe another step in terms of thinking about society change or culture and where we might be heading.

David (00:40:54):

Well, I have to say, I think interdependence is having its moment and I'm delighted about that, Ben. Not for all the reasons that you say, but also others. In fact, I have been working on this myself in various talks that I've been giving recently and in my inaugural professorial lecture last year. If I may, I just might look back to an earlier part of our conversation. I mentioned that one of the reasons why I stopped practicing as a lawyer and moved into strategy and policy work and then into higher education doing that, is because it felt to me that the law had its limitations, certainly as a litigator. I think more generally the law is-- In a recent lecture I gave, I tested this rhetorical question of, "Can the law deliver inclusion?" In short, my answer is it's a necessary but not sufficient condition to have good laws.

And the reason for that is the law can impact on errors of public life, but it's ability to transform more fundamentally is very limited. So very crudely it can tell an employer that it can or cannot take certain approaches as to who it hires and how it deals with its employees. But it can't say anything to you and I about who we have relationships with or who we invite for dinner or anything like that. And nor should it, by the way, in my view. Beyond the law, I think we need to put attention strategically on relationships. When I say strategically, I don't mean just relationships or things that happen or don't happen depending on circumstance.

I think we need to look at that as a tool of liberation-- relationships as a tool of liberation and political change. And profoundly, that is because of as you say, the concept of interdependence. Because as much as anything else, the narrative certainly of sort of 20th, 21st century western societies is of independence. This idea that we should all be able to manage on our own and be on our own, maybe with some the exception of having families. But otherwise, that's it. It's contrary to other cultures, and I'm very mindful of ideas of Ubuntu in Africa. This philosophical concept of I am because you are, and therefore the fact of relationship or community being the essence of my sense of myself. John Donne wrote about, "No Man Is an island." Many artists and philosophers and writers have explored it.

But I think it's coming to its own because more and more people are reacting against this idea of independence. Interdependence in my view, is also not the same as dependence, which is very one way. And it's also different from co-dependence, which seems to be a kind of therapeutic type of where two people with mutually connecting sets of distresses are reliant upon each other. So it is important. I'm not trying to be tricksy in this, but it's important to kind of think about what it means. And I think also that it is-- Disabled people talk a lot about interdependence because they have always been characterized as being unhealthfully dependent whereas the reality is we are all dependent and ideally interdependent. More and more I feel that it is the key to systemic and structural change.

Ben (00:45:02):

I think it also goes beyond or alongside this movement and the human piece to a couple of other areas that we've talked on tangentially, but I see, which is around climate and actually around business and the world. So we've got to a state-- and I think we were always in this state-- but where organizations and business just rely not just dependently on supply chains and things, which is there, but there is an interdependence around all of this. We've seen this for some of the geopolitical tensions and where we've seen businesses and organizations almost at this meta-level expression. It's very obvious within climate that we are very dependent and actually have interdependence on much to do with the environment. And then you see it in the micro with pets, for instance. So not just within human relationships.

And there's the kind of a growing understanding on that with other sentient beings. So interdependence, I really do see as it having its moment, and actually it's trickling around of our understanding of so many complex systems with that. And to your point, you have cultures within Africa, you've had artists. I think I listened to a talk where you spoke about dharma and Buddhist concepts of this as well. So, I do think there's something really interesting on that and we will have to see where that goes.

David (00:46:32):

Yes. I'm sort of quite excited about it. So many people are talking about it at the moment, and it feels like, again, it has its moment. Just one other thing about equality. Equality is what we all wanted in the seventies; for those of us who considered ourselves progressive. But now it feels fairly vanilla really as an idea. Equality is simply about level playing fields, with its sort of a zero sum game approach to if two people are in a race, nobody should be unfairly disadvantaged for any relevant consideration, which of course is true. It's sort of almost unarguable. But it isn't especially ambitious. And I have to say, I think, looping back to how we started this conversation with these major meta global existential challenges like climate change, whatever your perspective about likelihood of resolution or not, it is probably one of the most significant problems the world is facing, if not the most significant problem. I don't think concepts of equality are sufficient to try and really address, philosophically at least. I mean, they have their place for sure, not least in the way that you mentioned earlier, the disproportionate impacts on different populations and countries around the world in part dependent on their wealth. And so there are relevant considerations of equality there. But if we are really to bring about the change which will ensure the survival of the species and other species, it will need more than equality, I think.

Ben (00:48:21):

Yeah. I agree. But I also do think it's really interesting about how vanilla equality is. I don't think anyone really argues against, for instance, equality of opportunity. It's the mainstream like 95%. I would even say up to 99, but you've always got a minority strangeness somewhere of that. And that wasn't the case in the seventies. There was a live debate around it, and-- if you want to call it the progressive movement, I won that argument. So it is no longer a progressive idea; it's now a mainstream idea, which is kind of in the name of how you progress along. And I see this as a continuation. That's why I'm very interested in these social change movements, because these are human constructs.

Laws are only important to humans. They're not important, at least first order to the trees or the dogs, except for where humans interact with the trees and the dogs. And we've had that from, as we've mentioned, slavery to women's rights to minority, equality and things. And then, "Well, where does this go next? And these other things; some inclusion, interdependency, some of these other things, which I think is really fascinating. Obviously in the moment you don't really know where it's going, and in the moment you're also in the minority. So in the seventies, equality was a progressive idea. In the1900, 1890, women's equality was a progressive idea. In 1800, lack of slavery was a progressive idea. So it's kind of really interesting, I think, how that social progress happened.

Perhaps just one final little section then with something which I know you've sort of been involved in and has been the university level, which we probably should touch on; again, which is a bit intersectional of this. So one is some of the debates around-- I guess they're calling it the freedom of speech thing and the other with identity which you mentioned right at the beginning. The debates around how much is a construct, what is the construct, and where we are, which is quite fluid at the moment versus where it is. And I think that's interesting as well, because it wasn't so much in the seventies, the topic that people would've come across and has now progressed there.

And you've done a lot of work within academic circles and those sort of systems. I think people who just read the sort of media reports or aren't really actively involved or see this often get a kind of-- not a very broad view of what's really happening. So I'd be interested to see from where you are how you are feeling around a lot of the debates around identity and free speech. I mean, a lot of it seems to me sort of common sense and people just asking for reasonable things and we're working on getting those right. But there's some other things there.

David (00:51:13):

Yeah. I mean, certainly for universities-- especially for universities, freedom of speech is critical, really. The idea that we can interrogate and test concepts and ideas howsoever, and follow the evidence, even if we end up making a mistake or saying the wrong thing, it's critical. There are obviously laws which limit freedom of speech, whether it's around hate speech or harassment or defamation or matters to do with property rights; contract laws and who owns intellectual property and thing. So there are a variety of laws where-- It's not true to say that free speech is absolute, but free speech is certainly tremendously important. And I think we're in we're in a time, not just in this country, but in many countries where those concepts are colliding with a particular sense that many people have about the essentialness of their identities or whatever those identities are.

And I think it's very interesting, very complicated and very difficult to resolve. So if I take one example, I'm a disabled person, so I identify as a disabled person and there is an objective reality to me being a disabled person, but it is also constructed. So somebody with my particular impairment, my medical condition in a different time and space and different world wouldn't have the identity of disability that I have at the moment, even though I might have the same impairment. So there's a complex mix of the essential and the inessential where one is talking about identity. And that plays out and crashes against ideas of freedom of speech, particularly where the speech appears to profoundly undermine the identity. The challenge for us all who are working in this area is to navigate that; to navigate that in a way which doesn't compromise either the importance of freedom of speech, because without that in a university environment, we are really denuded. So it is an essential element to it, but also doesn't compromise our emotional and evidential understanding of people's individual sense of themselves and what matters.

Squaring that circle is not easy. I think it's possible. I say that even though I may not have all of the answers at all. But I think we have to square that circle, and I think we can, because I do come at this issue like I do with all issues from the perspective that there's no fundamental conflict between only two groups of humans. Of course there is actual conflict-- some of it is horrible over the centuries as we've seen. But I don't think in terms of the essentialness of humans, I don't think that there's any real conflict. And so we have to navigate a way through all of this he says loosely, but nonetheless, relevantly.

Ben (00:54:48):

Not with all the answers, but we're on a journey on that. And that sounds quite hopeful as well. So maybe last couple of questions here would be, what are your projects or thoughts that you are working on? Obviously, this interdependency, you had this lecture which you can listen to on YouTube on whether law provides inclusion, although we've given the punchline already; so necessary but not sufficient. But other current projects and thoughts you'd like to share?

David (00:55:24):

I mean, there's lots we're doing at Sussex and also at the Premier League. But I think probably-- And this is true I think for many of my colleagues in other universities and other sectors as well, I think that there are big challenges around what we mean by identity, what is essential, what is not essential. But profoundly how people can keep a sense of themselves, their sense of belonging and safety, even in environments which may feel like it's critiquing something, which is profound for them. That's probably one of the major more trickier issues for universities, certainly at the moment in terms of EDI and culture work. There are chronic areas of underrepresentation for which I think there are solutions. And underrepresentation is a signifier for other things. But there are chronic areas of underrepresentation which for certain groups which there are still-- if I could just give you one example.

British Caribbean heritage colleagues, they are considerably underrepresented. And I think that there are really complex issues of structural issues of race and class which need to be unpicked and addressed in many areas. And there are broader issues of belonging, which I think if we're able to tackle that-- and they're probably complimentary to tackling the other areas of underrepresentation which are important to address. And then there are legacy issues; what I call legacy issues. Ones where in many ways the arguments have been won, but we are still not getting it right. They're still stupid access issues for disabled people. So we're not arguing about the principles here anymore. We're arguing about having still not worked through all the changes we need to operationalize, if I can put it that way.

And then there are these much more ephemeral issues about what does good culture look like beyond EDI work. I think we can probably all imagine what it would-- We all want to belong, we all want to feel that we're operating in a collegiate environment. We all want to be supported by and support our colleagues. Again, often these things reach for interdependence issues. We all-- whether in a work environment, we all want to feel safe, we all want to feel productive and meaningful, we want to feel that we're having meaningful work and meaningful lives. Maybe I'll stop there because there's a lot to think about.

Ben (00:58:33):

Yeah, I'll pick up on the legacy issues. I think that's really true. I guess in the business world, they call it implementation or execution. We won the principles, but actually, it's getting it in place. I see that a lot in special education needs where there's a lot of things which you now have a right to in law, but cannot actually access it. A lot of it comes down to Maverick money, but that's also intersectional structures or resources and all other things.

David (00:59:02):

Yeah, I remember that.

Ben (00:59:03):

And then actually some legacy is also legacy of history, whether that's empire and all of those things as well. But to your first point as well, I would put a lot of that emphasis on this challenge of agency or having feeling agency, which is intertwined with identity. And I will swear again into the climate thing because where on the crisis where you feel you lose agency, where you feel you can't do anything, you stop doing something and therefore you then lose. Actually kind of almost ironically. Whether you were going to win or not in the first place is almost beyond the point. If you don't think you have any agency, you are not even referring back to an early part of the conversation; not that it is, but you're not in the game. If you don't think you're going to win the race, you are almost never going to race it. Even if you aren't going to actually win the race, it kind of doesn't matter. You have to have the sense of agency and whether that's within identity and all of that. I feel that's a really important piece.

I get a little bit worried meeting some young people who either through climate anxiety or an identity thing have feel that they've lost their agency because they lose it through one of those pieces. And then I think you've got all of these other problems which occur kind of unnecessarily, as in, I understand why this has come about, but it doesn't need to be that case. And so that's something which I think is quite important.

Perhaps reflecting on that, the final question would be, do you have any thoughts on general life advice? So advice for people who are thinking about social change movements or are in law or are worried about rights or things like that. So it can be kind of on career journey or something like that, or life advice in terms of how you live your life, either as a minority or just as a person going through that you reflected on in your years of wisdom.

David (01:01:09):

Well, it would almost feel impertinent for me to give advice to people. I'll do my best, Ben, but can I just say one... I just want to underscore your point about-- I really don't think that we can underestimate the current impact of the legacy issues of things like slavery and colonialism and how they... I mean, we may think, "Well, of course we abolished slavery, whatever it was, 200 years ago or something. And we had colonies for 50 years or more." But the consequences of that in the way they play out in thinking and organizational design, although they have been unpicked to a considerable degree, are still prevalent. And I think that's part of the explanation for ongoing racism, basically. So I completely endorse that point.

It's very difficult to give-- Everybody is an in individual and I know that for me, I never really had a career plan other than just I found the things that interested me and I just went at it really as much as I could. I was lucky enough or fortuitous enough to be able to do things, to be born at the time I was born, and therefore able to pick up on a zeitgeist, which interested me. So it was a lucky combination of events in my own circumstances. But I do think relationships-- not to sound too pedestrian about this. I do think relationships are important; having relationships, trusting relationships beyond families is what I mean as well-- what Armistead Maupin calls your logical family, not just your biological family.

I think that it's trite to talk about working harder and things like that so I'm not going to. But I am going to say things like, do what you need to do to believe in yourself because so many of us don't or doubt ourselves. That doesn't mean to say-- I think first of all, that knowing there's nothing profoundly wrong with anyone, including whoever you are. But secondly, knowing that from that perspective you get to learn and evolve; it doesn't mean you say rigid in the position. So there's something the risk of sounding like a not very good therapist. There's something about really believing in yourself, I do think, because in every case where somebody doesn't believe or like themselves, it's not true.

Ben (01:04:49):

That seems really good advice to me. So believing and backing yourself-- and I think your first point is choose your friends or make sure you have relationships beyond your family and have established them and invested in them. So with that, great advice, David. Thank you very much.

David (01:05:15):

Thanks, Ben. Thanks. I really enjoyed it as ever.

In Arts, Life, Podcast, Politics Tags David Ruebain, Disability, diversity, protest, law

Stephen Unwin: theatre over the decades, what disability teaches us | Podcast

January 5, 2022 Ben Yeoh

Stephen Unwin is a theatre director and writer. Amongst many accomplishments he has been the artistic director of the Rose theatre, founder of ETT, English Touring Theatre. He is also chair of the charity Kids, which provides services to children with disabilities. His Twitter is here. 

We speak about whether we need language to be human and what non-verbal people teach us. 

We chat on how theatre has developed over the decades and Steve’s appreciation of Brecht and the Berliner Ensemble. We touch on Steve’s experience of the Traverse theatre, dealing with the very different stakeholders of the Rose Theatre; and how European theatre, realism and London has influenced theatre over the decades; what’s enjoyable about theatre over film.

Steve discusses how much of liberal progressive thinking may overlook the history and challenges of disability. While contested, we chat about the possible roots of this in the 18th century enlightenment and its influences today. We talk about the importance of self-advocacy but also the challenges of self-advocacy if you are - for instance - non-verbal.

Steve talks about going viral on Twitter around “mock gloom” and disability. He also provocatively suggests five of the greatest artists of the last century.

We comment on:

  • Bob Dylan

  • The artist Piero della Francesca

  • And what he has in his library of thousands of books

And finish with his current projects and life advice Steve has. Transcript and podcast below.

PODCAST INFO

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  • Anchor: https://anchor.fm/benjamin-yeoh

Click below or wherever you get podcasts.


Steve Unwin transcript ((this has not been deeply proofread, so expect typos etc)

Ben Yeoh (00:00): Hello and welcome to Ben Yeoh Chats. If you're curious about the world, this show is for you. Do we need language to be human? On this episode, I speak to Steven Uwin. Steve is a theatre director and writer, as well as a chair of a disability charity. We speak about the challenges of running a theatre, touring, the strengths of realism and human scale theatre and what it's like to go viral on Twitter. If you enjoy the show, please like and subscribe as it helps others find the podcast. Thank you, be well. Hey everyone. I'm super excited to be speaking to Steve Unwin. Steve is a theatre director and writer, amongst many accomplishments he's been the artistic director of The Rose Theatre. He founded ETT; English Touring Theatre. He's also the chair of the charity kids, which provide services to children with disabilities. Steve, welcome.


Steve Unwin (00:57): Thanks very much. Lovely to be here.


Ben Yeoh (01:00): So Steve, do you think we need language to be human? I asked this cause I guess I've been asked an exam question from science or neuroscience and the typical question goes, does language make us human? Is it the defining characteristic? But if you flip it on its head that kind of suggests that people who don't have language like us are not human like us, which is perhaps a troubling set of circumstances to be in. So do we need language to be human?


Steve Unwin (01:36): That's a big, big, brilliant question. No, of course we don't need language to be human. This goes right back to classical philosophy and the kind of endless question about how we define human beings? What is human and what is non-human? And rational thought and language have been sort of promoted … for thousands of years as somehow the defining factor, but it's really not good enough. It seems to be that a human being is the offspring of two human beings and that's simply the best way of expressing that. I think that human beings are social animals however, and I think there is an interesting thing, which is the range of communication, which is available to human beings is enormous. So I think that by privilege's speech is the only form of communication, we actually miss out on [non-verbal] communication. The really interesting thing is that people progressives will talk about body language one moment and then the next moment they'll say speech is the definition of being human. So you want to say, well, what happened to all that body language that you were caring about? No, it's a big question, but we have to move beyond the definition I'm convinced


Ben Yeoh (03:21): That makes a lot of sense. So we'll come back to perhaps disability and the meaning of humans and things. But I was wondering first on the theatre theme, which I guess is a communication theme. You're a rare breed of theatre maker who continues to have a directing and writing and theatre career over many decades and there's plenty of debate today as to whether British theatre is building back better and whether it's embracing creative opportunities or perhaps stuck in a rut. How do you feel theatre making has developed over the decades and where do you see its strengths and weaknesses now?


Steve Unwin (04:02): Another enormous question. Well, I've been working in theatre predominantly as a director for 40 years and there are a lot of things which have changed over those years. There are some things that stay the same. I think that what I am concerned to see in the theatre, but actually in broader, in culture and indeed in disability politics, which is another thing I care about a lot, is a human being in all his or her or their frailty and complexity and multifacetedness and I suppose in all the theatre that I have enjoyed watching, trying to make, being part of has been about the human being, the human scale, the fragility of human beings, the delicacy, if you like, of human experience. And certainly that's the kind of theatre that I am drawn to as opposed to fantasy and techno and violence, which, I mean, all of those are parts of human experience. I recognize that, but I'm most interested in theatre and this is what I like about the theatre as opposed to film, … but is that there is a human being in …, there's a human being on stage …if you like. So that for me is the spread that runs through all the theatres that I've enjoyed and also not enjoyed. I tend to prefer going to see a new play than an old play, because I like the-- I you like the innocence that you bring when you go to see a new play, because you want to know what happens next, you want to know who these people are, you want to know what this story is, what this family is, what is happening in this world the writer is presenting.


Steve Unwin (06:37): So I sort of prefer that than going to see yet another radical take on established classics. Now, I've done that… work myself over the years and I'm aware of that, but that's certainly my taste when I'm going to a play and I suppose that I think that the development of new writing which catches modern human experience is what I think is the most important thing that can happen. Now, that to me should be about writing, which I feel is engaging in what it is to be human, going back to your other question rather than simply engaging in questions of form. I mean, of course, form, but it seems to me that new content should come first and form should result from content. And I think it's important to recognize the number of experiences, of modern experiences, which the classical writers weren't able to write about. It's not their fault, it's there from the past. And so there's so many different kinds of ways of--different kinds of experiences which are being more and more validated. Like for example, Non verbalism, we are talking about … all sorts of issues amongst culturalism and gender politics and so on which are new kinds of experiences. So I want to see new plays. I do believe in drama. I do believe in plays. I think the playwrights… I mean, of course the death of individual playwrights is inevitable, but I do really believe in somebody sat there writing a play, writing a story with people [… people talking to each other, connecting with each other and through the action of the drama showing some kind of psychological, social, political, cultural change. That interests me still. That interests me much, much more than the new style of directing.


Ben Yeoh (09:24): So content first or content over form and the present, because in a way the present can talk about class, disability, gender things, which in the past were not to the fore. I mean, I find it interesting that-- Actually, we'll come to the fact that disability very poorly if ever represented on the stage, but even notions like class, which particularly in the UK seem very current, seem to have fallen away from the stage a little bit. And I think back when you are thinking about your sort of decades and the way you articulate it, 1950s, 1960s, world court, Berlin, Germany have that-- the theatre which starts there seems to be of this human scale idea that you talk about and the way it's developed, we still have some of that but like you say, perhaps a little bit less so in the last decade or so. Is that your impression and how you see it's developed or do you have a little bit of a different reading?


Steve Unwin (10:29): Well, I certainly come out of the tradition which is.-- You're right, of the old Royal court. When I was in my teens, I was seeing in the Royal court and obviously the impact of the [Berlin] ensemble … and of the political and social readings of Shakespeare and of classics. That's certainly where I come from. Now, of course that must always be challenged because if you look at that, that was … It was all kinds of things, all kinds of charges should be leveled against that and I recognized that and yet at the same time, it was perhaps more socially inclusive than some people remember and I think most importantly there was a realistic attitude to human life, to human beings. Of course I don't mean naturalistic. I mean, realistic. I mean people live in society, that people live next to each other, that people interact with each other, but we are shaped and created by our environment and our class and our gender and our sexuality and our religion and all the rest of it. But that work and I think this is one of the hallmarks of all the great classical writers actually, is that that work sees the human being in the society. It doesn't imagine that human beings are this kind of isolated. I sometimes think that we have a rather romantic notion of characters. There is this kind of I stand independent of my time, which I don't think one can stand independent of one's time or background or class or whatever.


Steve Unwin (12:34): So, it's not that I think, oh God, I want everybody to be doing the Berlin ensemble in 1949. I really don't. I really don't. But I do think that there are lessons to be learnt from that moment and from the Royal court and I suppose from the tradition of realism, social realism, political realism. I think there are still great things to be learned from that and I emphasize that's not to be confused with naturalism, although I think that naturalism has great values and great radical values, which of course is unfashionable now … . It's a phrase that I always get wrong, but I love. So it's something like there is more poetry in the apartment of the [bourgeois]… than in all the faded palaces of history [Zola quote] and I kind of love that, that in everyday life there is poetry and this is in a great position to get back the ., the great painters; but there is poetry and meaning and value in a theme set in the kitchen … Well, there's a reaction against that, which of course I understand. But I came of age in the 1980s. That was my time. I left university in 1982 and what we were all engaged with … all sorts of various companies but I think we were engaged in with a reaction against Royal court naturalists and we said … and I was involved in all of that.


Steve Unwin (14:54): I look back on it and I go, it was… that tension with that, but we were perhaps—.… There is a value in that social realism and I was getting all wrapped up in magic realism and all of that and then of course funding and a different tradition, which is liberating. It's liberating but it's also problematic. I remember reading Measure for Measure, which is one of my very favourite Shakespeare plays and it was all about the …liberation, sexuality and the play was kind of-- the over script was about the overthrow of repression. But when I look at … what I see so much is the problems of commercial theft, which is disease and exploitation and the play seems to be dealing with that rather than this all being jolly good.. . . I think it's just really quite complicated but sexuality is complicated because of course there's love and freedom on the one hand, but there's also this thing called exploitation and violence and disease and all the rest of it. So, I think that Shakespeare brilliantly is being realistic and paradoxical and not saying hurray for unconstrained sexual expression.


Ben Yeoh (17:05): That makes a lot of sense, a lot to unpack there. I'm thinking with this--


Steve Unwin (17:09): Yeah, I suppose that's too dense.


Ben Yeoh (17:12): I'm thinking of this tension between, I guess the realism naturalism school and the say magic, realism, clowning, other traditions, which entered … counter reaction to that and where we are merging today and I was thinking about the history of … theatre making was touring ETT and then theatre building, Rose Theatre and I was intrigued to think, is there anything which you think is really misunderstood about running a theatre building, so being kind of place based and community based and developing a work there. Does that make it easier to be part of a movement or something where you are reacting either for or against something and would it learn something form touring or vice versa? I was just interested. So do you think anything which is really misunderstood about a theatre building? I meet a lot of theatre makers and they kind of think, oh, having a building is the be all and end all. And then some people who come out from buildings like, oh, I can't, can't wait to be rid of that. I want to be touring or making my own work again.


Steve Unwin (18:26): Right. So, it's all interesting Ben. In a moment I want to get back to the 80s cause there's something I wanted to tell you about, but let's look at this first. … says there is a world elsewhere and I think that's a really important point that in Britain, unlike actually in a lot of European countries, everything is so centralized in London. Where I live, where you live, where most people are working in the city to live, not everybody, but lot of people and there is this kind of economy which is kind of feeding on itself and I set up-- Well actually there was this sort of a previous company, which I took over and changed the name and changed everything about it in 1993. It was called Century Theatre and I took it over and called it English Touring Theatre and we relaunched it. But I remember when I was applying for that job, I did a play upstairs at the Royal court. … and I remember sitting there on the first night and looking around, you know, there's 60 people there and I kind of found that I knew nearly all of the audience and there were some theatre critics who I just sort of vaguely knew, but didn't really know. And I said what am I really doing? I'm doing this work for my buddies and for myself. This has no political engagements, if you like. So when I then took over ETT and we were touring, I think I did a production … which went to big theatres all over the country; Blackpool Grand, 800 people watching Midsummer Nights Dream.


Steve Unwin (20:15): And that seems to me is an engagement, a fascinating engagement, a difficult one. It's hard, it's complicated because you've got a difficult building in some ways, you've got an audience which is very, very different in all sorts of ways, all sorts of different expectations about what an evening in the theatre should be and so on. Incredibly difficult to generalize, but I found that that engagement with a very different audience and a very different group, incredibly stimulating. Stimulating and frustrating, challenging, thrilling and headache all at the same time. I stayed with ETT for 15 years. … Probably would say too long, but that's another question and I got absolutely devoted to those theatres that we toured all over the country. There are real, you know, for young directors wanting to do something like that, there are real challenges. It is not easy. At the same time making a career as a freelance director is not easy either. But it was just sort of a learning curve and an opportunity, which I'm so glad I had. Then going to [the Rose Theatre] which I did in-- when did I do that? 2008 was it? We opened it in 2008, Peter [Hall] , he was going to run it and then he couldn't. So I opened it and ran. Enormously challenging, enormously challenging. A beautiful theatre, which is too big, which has some major design problems and yet also brilliant in a suburb of London without any funding, any proper funding.


Steve Unwin (22:33): So, I spent so much energy trying to keep the place open, trying to manage all the different stakeholders who wanted different things, contradictory things. The theatre critics want one thing, the actors want something else, the local authority wants something, the university wants something, the town wants something, the business wants something else. Well, it was fascinating and I'm glad I did it, but Jesus, that was hard. I mean, that was really, really hard. And the honest truth is, I sometimes found that I was-- I mean, I think this was my fault, but I had moments of feeling very depressed, like really depressed that I couldn't-- how do you make this thing work? And so I probably would sometimes feel a bit negative and a bit this is all impossible … I mean, I think it opened and it worked and we built an audience and I'm really proud of the vast amount that happens, but somehow you probably need more magical belief than I had to really pull it off. It wasn't helped by the fact that I live an hour and a half [away]. I live in Northeast London and this is in Southwest London. So it'd be a kind of hour and a half journey first thing in the morning, and then getting home at midnight having watched the show or whatever it was that evening. So it was a very, very-- Yeah, it's hard.


Steve Unwin (24:25): So, I think running things is a really good thing to do for a director, but recognize that it's only, or rather recognize that the creative element, or well you have to redefine what creativity is. I mean, I look back and of course those two jobs allowed me the opportunity to direct a lot of plays and my CV is-- I've directed, I don't know, 80, 90 plays now, something professionally. So I've done a vast amount and that was helped by having my own company but I would reckon that in both jobs, the directing was 10% of my job. If only all one has to do was direct plays, that would be fine. I'd say particularly directing is very, very, very challenging.


Ben Yeoh (25:26): I hadn't understood how multi-stakeholder that was. I guess most buildings are there because some are placed in their community, but often have all of these multi-stakeholder issues. And actually it's the same interestingly with science today. I speak to a lot of people who go into sort of post PhD and they think about becoming a professor and they say, actually, I need to spend 60 or 70% of my time that high seeking funding and pleasing my other stakeholders to be able to do 20 or 30% of the science.


Steve Unwin (26:00): Exactly. Exactly. 


…


Steve Unwin (26:03): Yeah.


Ben Yeoh (26:04): Go on. You wanted to make a comment on the 80s, but yeah, you had something to finish off on buildings, please do.


Steve Unwin (26:09): Well, I mean just the buildings, you've got to imagine the theatre critics go we want something to write about, we need a fashionable star and an event. The local authority says, what are you doing for seven year old, for children? Okay. The university says, where's the program for our students? How are you working with our students? We don't care about famous stars. Some of the philanthropists want you to do a good program for local disabled children or whatever, which is great. Other philanthropists want their brand to be attached to some famous name. So, if you like, corporate sponsors need that and they trust in foundations but another thing again-- So, the stakeholder map is deeply contradictory. What I wanted to tell you about the 80s, there was a particular project, which in some ways is one of the most successful things I did, but in a way marries both the notion of the social and political realism, if you like that we are talking about, but also the new forms and the explosive nature. I suppose, postmodernism, which was happening at the time.


Steve Unwin (27:32): I did a play by a German, playwright [Manfred Karge]. I did two plays by him, in fact, and this was called Man to Man and it was a one woman show, one woman play about an hour and 10 minutes and it was played by my old friend from university [Tilda Swinton]. And we did it at the [Traverse] and then it went to the Royal court. This was, I don't know, in 1986 or 7 [1987] …what he wrote was a play which absolutely had to have its own …  theatrical self-consciousness and provocatory, fragmentary. It was a pop art in some ways, but with its roots in a real serious political analysis. So that, which was a big, big success, is an enormous bit. I think that was in a way, was what it seemed to me was the place where what I inherited met what was arising, if you like, what was just emerging … That for me was a very important moment about being able to be in the 80s while at the same time anxious about the 80s, if you like, which was, if you remember, the high time of … It was a pretty appalling museum culture, reactionary thing going on; bright side revisited.


Ben Yeoh (29:38): And were you in Edinburgh a lot of that time, cause you spent a lot of theatre work around the Traverse, right?


Steve Unwin (29:43): Yeah. I worked in the Traverse Theatre (Scotland. Edinburgh) as I left university in 1982. I spent most of the 80s at Traverse and started to do opera. And then in 1993, I founded ETT. 2008 I went to the Rose. So I was ETT all the time. In  2008 I went to the Rose, and then I left the Rose in 2015 and I'd been freelance. …


Ben Yeoh (30:19): … how did you describe London theatre where we feed on ourselves? Was [IEdinburgh] a little bit less [feeding on itself] so because you have the festival every summer or outside of the festival, I guess there's fewer theatres and it's smaller, but perhaps that means there's less feeding on itself to some extent.


Steve Unwin (30:39): Well, there's a funny thing. The British theatre every five years discovers Europe. There's this incredible thing called European theatre and there's always a new person who's discovered Europe again. What's amazing about when I look back on the early 80s, the festival was extraordinarily European and international. We had… every year in the festival, we had three or four international companies, South Africa, we had a big connection with South Africa. But then you get to Riverside studios in London … So I think at that moment, those early 80s were the most international I've known the British theatre and the influences on the thinking in the British theatre was very, very international. … Now, obviously a different stage in my life. I probably don't go to the theatre as much. I'm doing my thing and probably less aware than I used to be but yeah.


Ben Yeoh (32:04): Why do you think that is? Obviously we've had Brexit hit, but it seems like it's been a longer decline or a sort of up and down decline from that if that's true. Anything in particular you would point to, or is it more sort of like a wave?


Steve Unwin (32:22): I don't want to be critical particularly. I sometimes observe a kind of production happening to give a kind of … experience of something that happened 15, 20, 30, 60 years ago. So if somebody did something remarkable, we now do a kind of … event which has kind of got a nostalgia built into it. I mean, what I like, I want to go and see somebody do something new. I want to see a new experience. I don't want to see a version of something that I saw when I was a kid. So I think there's a disconnect, a slightly lack of self-confidence about the stories we want to tell and that's because I think that people have got so caught in how you do it that-- I had an experience the other night, I finally finally finally watched Parasite, that brilliant South Korean film and what I had with it, I thought it was completely marvelous until the last 35 minutes when it just descends into [a stylised horror] 


…Whereas what was happening before was absolutely brilliant analysis of an appalling stratified class system with some people living in abject poverty and some people living in huge luxury and that was the brilliant thing to be seen and then I just want to go, why do you want to end it in Gothic horror?


Ben Yeoh (34:35): And this is a content over form?


Steve Unwin (34:38): Kind of [it’s a shame the creators thought] In order to make it exciting, we have to have people being stabbed …


Ben Yeoh (35:18): In some ways trying too hard to please, or to be visceral and therefore lose the heart of it. That kind of brings me onto my impression on how representative theatre is, and we've reflected earlier a little bit about class, gender, all of these other things, which have waxed and waned a little bit but one of those which is close to both of us is around, I guess, disability as widely thought about and my impression is that theatre doesn't seem to reflect those stories at all in its making or in its audiences or when it does, the work can be very flawed, sort of even more flawed than the typical cause obviously we need to experiment and make mistakes. But I'm thinking of puppet gate, I'm thinking of other stories here and maybe this is the way that the story seep in, you start with things which seem very narrow and trite and it broadens as people understand the richness of their experience, but it does seem to have got very stark or never really moved forward, both in the reflection of the stories at stages or its audiences, or I know you've also written about and looked about in the wider lens of disability in history. I'd be interested in how you see disability reflected in theatre or not.


Steve Unwin (36:49): Well, what I think is that if you just take a historical perspective for a bit. If you go back to the eugenics moment and I think the eugenics, not moment century, if you like, I've been doing a lot of research on that, which I can explain in a minute, what you see is a very peculiar, double standard, which is a large number of progressive artists. The kind of people we would regard as kind of, we have on our bookshelves Virginia Wolf, DH Lawrence … HG Wells and so on and so on and so on. …there are lot of those people who fought for the great progressive causes, whether it's women's rights, whether it's sexual liberation, whether it's gay rights gay rights slightly less but the others and a more equal society. This group regarded people, particularly with intellectual disabilities but even with physical disabilities, with utter content and supported the eugenics movement, which thought that there were ways of stopping these people from reproducing, which was sterilization and segregation and that somehow that disability and neuro disability with a person on the planet, which needed to be got rid of. Some of them even suggested murder and of course murder happened under the Nazis and sterilization happened on a massive industrial scale in America.


Steve Unwin (38:46): So then what I'm trying to say is that I think that disability and particularly neuro disability, intellectual disability is… is a blind spot with liberals; which I am a liberal … And I think it goes back to your opening question about how do we define a human being as a human being. What I'm saying is that if you think that the most important thing in the world is to be intelligent, to be clever, to talk at least, to read lots of books, you really can't cope with somebody who isn't and somebody who doesn't talk, or doesn't read lots of books, and you find that somehow appalling sort of visceral appalling. And that double standard is still evident and I can give you a real example of this and I'm going to come to the theatre in a second. I'll give you a real example. You remember the Euro football match, which was the final… you remember the lad who missed the penalties at the end. They all happen to be three black lads… and there was a lot of racist abuse of them. What was interesting looking at Twitter was how many people attacking the racist said, oh, you're a racist “moron”, or you're a racist “idiot”, or you're a racist “cretin”.


Steve Unwin (40:27): So in other words, these liberal progressives … [those who] champion the cause of multiculturalism and diversity, [who think] racism is bad. Racism is bad. So the terms of contempt [idiot, moron] that were used to abuse and segregate and sterilize and attack and even murder people like frankly, our kids. Those words are still fair game. That kind of abuse is still fair game. And that, I think just shows the most vivid way, the way that progress, the way that this subject, this experience, not so much physical disability, but intellectual disability is still a great problem for progress and progress is of course, you know, work in the theatre. There are people who are changing that, there are people who are fighting that. I'm not a lone voice at all. There are lots of people doing good stuff, but I think there's quite a long journey to go. [Unwin makes the point that liberals/progressives are unaware of the origins of such term like “idiot” which stems from abuse of disabled people]


Ben Yeoh (41:38): Has it always been this way? Actually, I probably have found through your work, Tom Shakespeare's and some others (see Dan Goodley)  more relatively recently sort of the history of disability or disability studies. If you look back in history, has it always been like this or was specifically that intellectual movement around that eugenics time kind of catalyzed this movement against, and that stuck with us for all of these complex reasons that you said and haven't dissipated to the same degree?


Steve Unwin (42:13): Well, I think in a way the critical moments of this are much contested, but I think the critical moment is the enlightenment of the 18th century. Now the enlightenment, hurray, bring on the enlightenment. We all love the enlightenment, but of course, what that started to do was categorize human beings. And so there are some people like this, other people like that. This kind of categorization taxonomy said that there was this group and this group needed to be put into silence, needed to be other, needed to be treated in all sorts of ways. When that then hits the late 19th century with the crisis in overcrowded cities, hygiene, all sorts of anxieties about the mob and the mass and the great unwashed and all those terrible phrases, the group who had been regarded previously as a fairly small group of what was called the feeble minded, then expanded exponentially to include anybody who people didn't like. So, alcoholics, schizophrenic women who got pregnant outside of marriage, et cetera, et cetera, were all bundled into this group called the people minded and terms like moron and idiots and so on were invented to categorize this group. And that hit it in the most dreadful moment, of course, under the Nazis, but actually even in the 50s and 60s and even right through 70s and 80s, there was still this notion of this group, this other group who are not like the rest of us as if it was an absolute and if it was a binary choice between intelligent or not intelligent.


Steve Unwin (44:14): So I think the thing about intellectual disability is that it's an idea as much as a reality and the more that it is kind of labeled than others, the more it becomes problematic for people. So there is a brilliant new book for those they call idiots, which shows that George and London were rather relatively good at accepting and including people with different sorts of brains. So, of course George and London is pre-enlightenment. Moving on into culture, the great movement in intellectual disability is self-advocacy which is and still endured as a very, very important argument that people with intellectual and other disabilities should speak for themselves. They can speak for themselves and we must listen to their voices and that highlighted a very important phrase, … “"Nothing About Us Without Us!" No policy about a group without including them or without them being (consulted) by that group, by people from that group and that is hugely important. I think there's a nuance, however, which needs to be understood particularly when it comes to intellectual disability. My son, Joey, who's 25 has no speech. He's not autistic. He has no speech, but he's never developed speech. He has very severe intellectual disabilities. He can't write a play. He really can't write a play. He has no words. He can sort of say “cup of tea”, and he said no other words. He weirdly sometimes says cup of tea, which is a very odd thing.


Steve Unwin (46:37): So, it's not good enough just to say self-advocacy, nothing about us,  without us. If one is trying to engage with some of the most severe disabilities, it is absolutely right with moderate disabilities. Of course it is. I suspect that the answer is to see self-advocacy as a continuum rather than an absolute. Let me explain what I mean. So I don't have intellectual disabilities and I can advocate for myself in most situations, except I need a doctor when I'm ill. I need my accountant to sort out my miserable, small amounts of tax every year. When my car doesn't work, I need somebody to fix it cause I don't know how to open a bonnet. So I need people to do things for me. I cannot internally self-advocate. I am not an entirely independent person and no doubt as I get older, I will need-- When I was a baby, I did and when I get older, I will need care and support as I become disabled through old age, this is what happens. So, in the same way that I am not an entirely autonomous human being somebody with disability, with evident disability can't be an entirely autonomous human being. And then right to Joey, who does advocate for himself, but in a very, very particular way and actually frankly, a small way, but his very presence is an act of self-advocacy. So it needs to be regarded as a continuum and not binary and I think that that's a kind of nuance that the politics and the cultural politics needs to embrace. I think there's some people who would disagree with me and would tell me off for saying that, but I think that's where I've got to…


Ben Yeoh (48:52): A continuum structure articulated that way. It seems to me one definite way that you can make it work and like you say, self-advocacy can only go so far in all circumstances, particularly if you have a pluralist view of the world.


Steve Unwin (49:12): I think that's right. I think that's right. I…I wrote my 10 points about what I want to see in representations of learning disabled people. I don't know if I can remember them all, but they're all about not seeing learning disabilities as a metaphor, start seeing it as a reality. Don't see it as a tragedy, but also don't see it as, you know-- I had this funny debate with somebody the other day who said, yeah, but learning disabled people are really clever and [but I would argue but not all] … I think what I want, and I've just been reading Tom Shakespeare. I think it says the same, but in a much more sophisticated way is I want kind of realism about all these issues.


Ben Yeoh (50:13): The messiness of humans.


Steve Unwin (0:15): Yeah. It seems to me it's highly possible to say that something like my Joey has infinite value while at the same time saying he has very high needs. We've got to be able to do both. The danger with some of the disability arguments at the moment is that they actually-- By emphasize high achievement all the time, they're actually replicating the structures for the rest of the world, which say high achieving people are better than low achieving people. That's their problem.


Ben Yeoh (50:55): I see that and I hadn't heard your articulation before with the clarity about how, where we get to say, for instance, in theatre or art today being so influenced by the enlightenment and a set of intellectuals is still weighing down this area of humanness because of the disdain that they held a lot of these disabilities. And in some ways the metaphor is no reason why you can't walk and chew gum at the same time. There are a lot of these things where you can show that you can be very loved and have high challenges, be very human, but still have a lot of needs. And that maybe brings me onto the fact that you are one of the only people I know personally who has gone viral on Twitter … What was that like? And I guess you probably wouldn't suggest it to anyone else being viral for a few hours or a moment in the sun, but it was due to the fact that we can celebrate a certain aspect of being human and that's okay. Would you like to describe being viral on Twitter?


Steve Unwin (52:12): I forgot. I think I've been viral on Twitter, I think three times, or is it two? I can't remember; all about Joey. There was one, which was Joey's 25th birthday and I put a lovely photograph of him on his 25th birthday and I said, he's 25, he's never spoken a word and he's taught me more than I've ever taught him. And it went-- I can't remember how many things it did, it went absolutely mad and that was a bit weird, the phone just kind of nonstop, but anyway, for a few hours. And then I think we were trending from it. But I think what was interesting about that is that I was sort of presenting people and this is what I try to do, I think is presenting people with what seems like a contradiction, which is somebody who has not spoken, might teach and it's true. He has taught me, he's taught me more than-- I mean, I've got three kids. My other kids have taught me a few bits and pieces, but I've probably taught them more than they've taught me. Well, certainly my 13 year old daughter, but Joey, I've tried to teach him a few things, I have not really succeeded, but he's taught me a lot. He's turned my life upside down, you know, my whole world is different. That was interesting and then the other one which was right at the beginning of-- I think it was new year's day of 21, I put up a picture of Joey and me on our sofa and I said how terrible it is to be the dad of a learning disabled kid and Joey and I were laughing. We're obviously smiling and laughing and tickling each other and what was interesting about that is I got hundreds of responses of-- Did you do it, Ben? Did you reply to me? I can't remember.


Ben Yeoh (54:07): I [don’t think so] I don't tweet so much on that and I hadn't been using Twitter so much there, but it was the mock gloom, I think was the phrase at the time.


Steve Unwin (54:17): So what was interesting about this is that hundreds of people sent photographs of them and their learning disabled child or brother or sister or whatever, you know, climbing a mountain, going to the pub, having a laugh, doing lovely things and I then would reply to every one of them and say, oh God, how awful, I'm so sorry, thoughts and prayers. I just did a whole risk on this. Every single one of them I replied to and what I think was interesting is that what they were saying I sensed is it's not the person that's the problem, it's the bigger problem, which is if we face problems with our learning disabled kids or whatever, it's the way that society engage or fail to engage, or allows, you know-- You can have a wonderful, wonderful time with somebody who's got profound learning disabilities. You can have a huge laugh. It can be brilliant. You can feel real joy and love of course. But once you step out and try and get a service, try and get an education, try and get housing, try and get financial support, trying to get all those other things that these people need, that's where the problem lies. The problem is not in the person. It's the social model of disability, if you like. The problem is a broader one. And I think that's what that tweet-- the reacts that tweet brought out which was lovely. There was another one that went viral, but I can't remember which one it was. Anyway-- 


[…]


Ben Yeoh (56:04): …The way you express that as a moment, which essentially encapsulates that social model or disability, or this idea that if society's rules changed, then naturally everyone would be better off. No one would be the worst off and that's the core of the problem. Not the relationship.


Steve Unwin (56:29): I think it also defies the tragedy model in that kind of ironic way, because these pictures would be, you know-- So I'm saying, oh God, it's absolute hell and there would be some lad tossing his chocolate cake and having a laugh. You know what I mean?


Ben Yeoh (56:48): I had a similar moment with Sally Phillips who's been on the podcast as well, who has a disabled son saying we've got very high challenges, but actually huge moments of joy as well and we need to be able to celebrate that as well.


Steve Unwin (57:04): Sally is [great] but you've also had Dan [Goodley] on the podcast, haven't you?


Ben Yeoh (57:06): Yeah, Dan Goodley, talking very specifically on disability studies. I don't know him well. I should send a message to Tom Shakespeare cause I think his work is very interesting here as well. This maybe brings me to a short section on underrated or overrated or commentary. So I'll fire out four or five little kind of words or ideas and you can say whether something is overrated, underrated, or you can pass, or you can just say some comments about it and then we'll wind up. So overrated or underrated, Bob Dylan.


Steve Unwin (57:51): Well, I love Bob Dylan. Absolutely love Bob Dylan. Actually I think there are parts of Bob Dylan which are overrated and there are other parts of Bob Dylan, which I think are underrated. So I think both but I think I have a theory. I have a theory of five great artists of the 20th century; … but five great, great artists and this is pure, pure provocation, but anyway Picasso, Joyce, Brecht, Bob Dylan. They're all [modern]. Those are my five names. What they are is they're 20th century artists who could only be in the 20th century. They produce 20th century art, but there they are. Disagree… I've said it before, but I get shot down but anyway.


Ben Yeoh (58:49): Two and a half of them are playwright. That's interesting as well. So overrated, underrated Piero Della Francesca.


Steve Unwin (59:04): Oh, sublime genius. My favorite painter probably. Probably underrated, although I don't know what critical opinion of him is at the moment, but there's something about Piero. Well, in fact, I was on a podcast called my favorite work of art and I did the baptism of Christ. Piero is that phenomenal, cool, objective. Everything is counterpoint. The resurrection … is the risen Christ coming out of the tomb, staring straight at us and below the tomb of the four soldiers are all asleep and that for me is like it's Shakespearian in its counterpointing. That is, if you like, the essence of the embodiment of the realistic condition that I've been talking about is yes, there's a spiritual element. … it's also completely materialistic because the soldiers are all characterized and individualized or asleep. No, I love Piero. I love Piero….


Ben Yeoh (01:00:26): Excellent. Underrated, overrated, having your own library. I think again, you are one of the few people I know who've gone viral on Twitter and I haven't. You're probably one of the few people who I think have more books than me. I think I have maybe 1 to 2000, so in the low thousands, but my impression is you have several thousand, so you are a tiny order of magnitude above me. Is this overrated, underrated? How much do you love your library?


Steve Unwin (01:00:57): These are very good questions. I wrote a thing on my blog about my library and I absolutely love my books. It's an illness. So I finished a book last night and I said to Jenny, oh God, what am I going to read next? I haven't got enough books. I need some more books. And he said, yes, go and buy another one. I don't know. My books are like my past. They're like my life, they're kind companions through my life … There's a really broad range of stuff. There are a little tiny bit of them behind me here. I can't read on-- I find it [hard to] read on a Kindle. I don't like it. I like the book. I read in the bath, but I can't hardback in the bath. No, I sometimes think there are three-- My brain at any point has got three compartments. My family, my friends and people I love is in one compartment. There's my work, whatever I'm working on is another compartment. And then what I'm reading and sort of what music I'm listening to, but above all what I'm reading is the third compartment. I had this wonderful birthday present now three years running. I hope I'll get it again is there's a brilliant [gift]… you just get a new book every month and it's just a brilliant way of opening the brain, opening the brain, opening the brain. I'm a great believer in opening the brain, discovering stuff that you didn't know. I mean, I'm a complicated mix cause I do that and yet at same time, I get very fixed on-- I've got to read all of somebody who I've discovered and I'm quite systematic…


Ben Yeoh (01:03:09): Excellent. So that's definitely underrated having your own library, which is what I would suggest, and I've ended up-- I do read some on Kindle but I've ended up often buying the Kindle and the book. I just doubled down. It's like, well, I might as well get it. I might need to carry it around with me or like a heavy hardback. I quite like it, but I'm not going to carry it around. So I read a little bit more on the Kindle and then just end up having the book and I'm in a stage in life where I don't mind giving authors double or triple on their books.


Steve Unwin (01:03:43): You're a good man.


Ben Yeoh (01:03:45): So that's what I've ended up doing, having even more but I just got double copies now.


Steve Unwin (01:03:50): Yeah. Maybe when the study thing is over, I can come and visit your library. I love other people's libraries; absolutely fascinate me. So I'm in my dining room. So that's a lot of European classics So Dickens and things … Over there, that's all Shakespeare, that wall there. That's Medieval And Now Is This Okay to walk you through? ( Visuals available on YouTube) 


Ben Yeoh (01:04:24): Yeah.


Steve Unwin (01:04:25): Since you asked about the library you might be interested and then here's my front room and this is all 20th century, all 20th century, 20th century, 20th century. …That’s all history in there and they're all piling up here. That's all sort of music and literary criticism and then we go into my study and this is all bunkers anyway, and those are all plays. That's all plays and drama and that is-- Well, this is all learning disabilities and the rest of it is just piles of crap.


Ben Yeoh (01:05:15): So, I think you are the only person's library I've seen who has more plays and more books on disability than me. So that is a great thing and I noticed also and I think you've written about this in your blog, your history books had a very special looking bookcase as well.


Steve Unwin (01:05:33): My history books had a special looking bookcase, yes. Well, that bookcase, my mom left Hamburg. My mom is still alive, left Hamburg as a child. She was born Monica Cohen in Hamburg in 1933, which is a bad idea and some of the furniture came, you know, they were a middle class family in Hamburg. Some of the furniture came with them, including that bookcase with the glass front which was, as I say, was in…Hamburg once upon a time and now here it is back…


Ben Yeoh (01:06:19): Great. Okay. So coming to our last couple of questions, maybe one would like to tell us anything about some of the current projects you're working on. I think you might have written a new play which you are looking to work on and have some ideas, and maybe you can interweave this with what a productive day might look like for you, but you can tell us maybe something about your projects and how that works into your day.


Steve Unwin (01:06:46): Well, at the moment I'm writing-- I mean, there is a theatre project that I'm meant to be directing next year, but in the spring, but God knows I won't go into that detail, but I've got three writing projects on the go. I've written a play about the wild boy of Aveyron,  who was a lad who was discovered in the woods of Southeast France in 1800 and he had been completely uncivilized. He was 12 or something, and he had no engagement with human company at all. He was a wild boy and he was taken to Paris and he was taken under the watch of this guy [Inaudible:01:07:27] who wanted to teach him and he was interested. He thought it was interesting in what makes a human, going back to your opening question, what makes a human, how do you socialize? How do you learn human skills? But ultimately […] failed to teach him very much. And it's probably what's still not known to this day is whether the lad had learning disabilities, profound learning disabilities and had been abandoned in the woods because of his learning disabilities or whether because he'd been abandoned in the woods he never developed speech and the rest of it…. I'm very interested in the housekeeper, who actually ended up looking after the boy and that's the principle of love and care as opposed to science and knowledge. 



Steve Unwin (01:08:23): So there's that. I'm just finishing writing a history of learning disabilities in culture and society going right back which is some of the stuff we've been talking about. There is a book, which I'm not going to tell you what it's about, which is coming out in the spring of next year, which is my surprise and is something I've been working on for 40 years and it's finally been published by a very classy publisher, but I'm not going to tell you cause I want it to have massive surprise and impact when it happen.


Ben Yeoh (01:09:00): So anyone listening, do watch out for that in the spring.


Steve Unwin (01:09:02): I'll put it up on Twitter the moment I'm allowed to, but that's what I'm working on and that's what my, oh, and then as you said, I'm the chair of this charity for kids. I stand down in the summer and most days there's a call about that, something that I have to respond to and I go for a walk after lunch-- I mean, the theatre has, which is okay, has slightly turned its back on me. I mean I still do some plays. I think my commitment to what I call realism, I think isn't very fashionable at the moment and that's life, but I'd love to direct some more. There are some plays that I really want to do…


Ben Yeoh (01:10:05): Great. So maybe that brings me to the final question is do you have advice for anyone listening, maybe reflecting on a conversation would be maybe what you have for thoughts, for people who are liberal. What should liberals be thinking or doing, or maybe you have some advice or thoughts for people who want to start off in the theatre because it seems a particularly difficult time for theatre at the moment. So I don't know, any reflections on anything you like to share?


Steve Unwin (01:10:37): Well, okay. So there's a phrase which keeps coming back in my head at the moment, which is there is more in heaven [There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy….] and that's I think one of the things that Joey has taught me. I didn't know anything about this stuff and then Joey turns up and it's like, oh my God, there's all of that and in a funny kind of way, I think that that's the same for people like me …when we start thinking about Brexit, we start thinking about all of these kinds of cultural questions. I mean, I've had a bit of a learning curve recently about France, which is something I didn't know and I hadn't really thought deeply enough and that's been a bit of a learning curve and I'm glad about that. But I think that people need to-- there's a little bit of digging ourselves into our own position. I just think we need to keep kind of opening up and finding connections rather than isolate ourself. So they're being more in heaven and earth and I feel that's my advice, but you know, my advice, if you listen to me, but for people wanting to work in the theatre listen, it's a big world out there and read everything, see everything, do everything, know everything and then you can get a sense of what you might do could be new and about now if you know an awful lot about what's happened already, what else is out? So yeah, you have to be passionate and committed to what you're doing while at the same time continually being open to contradiction. I think that sounds very wise and I don't know if I live it but I wish I did live it. Do you know what I mean?


Ben Yeoh (01:12:43): Yes. So open to connections, not simply closed in your own box and to be in the now particularly for theatre, it helps knowing where you've come from and what's exciting around in order to create work of the moment.


Steve Unwin (01:13:01): I think that's right and stuff, which is about now and stuff that can only be about now rather than about then and of course there are some human things which endure, but you can't, you know--


Ben Yeoh (01:13:23): Like those creators on your list. It can only be creators of the now, of this century or last century.


Steve Unwin (01:13:31): Yeah. It's interesting in the learning disabilities culture bit. It's my view that Shakespeare did not write about learning disability. There is character there with learning disabilities and in a way you kind of-- it wasn't really a concept. It wasn't really an idea. I mean the word idiot in those days, by the way meant somebody without social standard, it didn't mean learning disability. So a tale told by an idiot is a tale told by a peasant and that's interesting, but you don't say therefore Shakespeare should never be done or is evil, but you do say, well, this is interesting in order to-- let's write a play which just engages with as a learning disabled character or whatever because even the great Shakespeare did it. So maybe it's time that it happened. See what I mean?


Ben Yeoh (01:14:26): Yeah. Great. Well with that, I think that's an excellent thing to end on. So Steve, thank you very much for the conversation.


Steve Unwin (01:14:36): Oh bet. It was a great delight. Lovely. Hope it makes sense.


Ben Yeoh (01:14:39): Yeah. Thank you. If you appreciate the show, please like and subscribe as it helps others find the podcast.

In Life, Podcast, Theatre, Writing, Arts Tags Podcast, theatre, Steve Unwin, Disability

Dan Goodley: disability, social models, technology, interdependence, on being human | Podcast

November 1, 2021 Ben Yeoh

Dan Goodley is a professor of disability studies and education at the School of Education, University of Sheffield. Dan co-directs iHuman, which sits at the intersections of Critical Disability Studies and Science and Technology Studies. iHuman is addressing  some significant questions of contemporary society including: what does it mean to be human?

We chat about who and how do we decide who gets to be human? I pose what thinking about the rights (or lack of) that Britney Spears has is relevant to disability rights thinking.

Dan wide ranging thoughts on what disability and other intersectional studies have suggested to him. These include:

Thinking about “ability” and what the social model of disability suggests. What a critique of idealising able bodies and able minds might mean.

What medicalisation means and how it is different to medicine.

How humans are interdependent and what that suggests about our relationships.

How technology is impacting Dis/abled humanness.

What being a Nottingham Forest Football fan has taught Dan.

And Dan’s life advice: Move from the object to embrace the subject.

Dan has written the thought provoking book: Disability and Other Human Questions.  You can buy his book here. Check out the podcast below or read the transcript.

PODCAST INFO

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Or wherever you get podcasts.


Dan Goodley What disability teaches us about being human, interdependence, medicalisation 
(unedited transcript, expect typos etc.)

Ben Yeoh (00:00): Hello, and welcome to Ben Yeoh chats. If you're curious about the world, this show is for you. What does disability teach us about being human? On this episode, I speak to Dan Goodley. Dan is professor of disability studies, and we chat about how disability provokes deep questions about humanity, such as who is allowed to be human and how interdependent are humans. If you enjoy the show, please like and subscribe as it helps others find the podcast. Thank you, be well. Hey everybody, I'm excited to speak to Dan Goodley. Dan is a professor of disability studies and education, and he has written the thought provoking book, Disability and Other Human Questions. Dan, welcome.


Dan Goodley (00:50): Hi Ben. Thank you very much.


Ben Yeoh (00:52): So first question, who and how do we decide who gets to be human? I asked this as this comes up in your book and I don't think I had fully appreciated how certain majorities or say elites do decide on who gets status as human rights or human dignity. And to take a little bit of an adjacent area I was following this year a lot of the news on Britney Spears in the US and I was astonished by how many of her rights had been taken away from her. And then I was reflecting on what is true for Britney has to be, and even is much more true for many people with disability and actually other groups of people as well. And that kind of felt really shocking to me and then I was reading your book and I thought, wow, there is a really big question about who gets to decide who is human or not. From your thinking and what you said in your book, what do you think of this question?


Dan Goodley (02:01): Well, firstly, thank you, bringing together a consideration of human disability and also Britney Spears. I applaud you for the question. I mean, yeah, I think the question of who decides to be human or if you like is allowed to be human is an old question asked by many humans over the years and I suppose one of the ways I would want to answer that question would be through the ideas generated by disabled people and by the ideas generated by disabled people's organizations. So anything I say today is said through and aware of the contributions of disabled people and their writing in the world. And I suppose if we think of the case of Britney, one of the key elements that her fans and Britney activists have pushed has been the question of capability and autonomy that's been taken away from her in relation to her own life. And so there's been some real, really interesting documentaries and obviously discussions through social media. I think that's positioned around or centered around the question of whether or not Britney Spears is being allowed to live the life that she herself wants to live.


Dan Goodley (03:38): And I think that's a question associated with human ability and it seems to me from listening and reading to the ideas coming from disabled people is that this idea of ability is something that we feel we kind of know, we all kind of hold around these assumptions in relation to ability, but it's actually quite a tricky concept. And it's interesting how some people are assumed to be able whilst others are not. And of course disability is the opposite of ability in terms of the way it's constructed and for many disabled people, their rights are taken away from them and based upon the notion that they are not capable, that they don't have the abilities, the competences to live their life. And it seems to me therefore that through disability whilst we need to sit with that very phenomenon, we need to spend a little bit more time, perhaps a lot of time asking questions of ourselves about the assumptions that we hold in relation to this  [ ]  One Way We Could Start To Critique What it means to be human or who is allowed to be human is by sitting with the concept of ability and subjecting that to some deep critique.


Ben Yeoh (05:03): That's super interesting and I'm sure we'll get on to kind of thinking about this social model of other models of the world. I guess I'm sometimes a little bit worried about labels and how we kind of use and misused words and in fact, interestingly recently I was called ableist by somebody and actually in this particular situation, I thought it was sort of very ironic because I'm sure being misused because this person was simply being abusive and I called them out on it. However, I am certain that there are many times that I am being what I think people would call ableist in this sense of centering the world around able people, how else we might think about it? So I was just thinking about what it means to be a productive person or how the world is designed, how useful do you think is this idea of ableism or centering under that, and should this be the kind of model that we should be pushing back against, or at least scrutinizing in order to assess more deeply what it is to be human and who we should allow to do. I sometimes get a bit worried about words and labels, but they can be helpful in many instances.


Ben Yeoh (06:28): In fact, recently I was called an ableist and I thought at that particular instance was ironic as I was pretty sure it was being misused, this person was simply being abusive and I called them out on it. However, I'm sure a lot of the times I am being what I think some would consider ableist as in that I center my world view around this idea about what a typical productive person might be, the world being designed for that typical person and I just wonder how useful is this idea as a concept that maybe we can criticize and push back against is. And then I think towards well, actually the last few decades, I was  going to say this year, but particularly we're hearing these instances of horrific institutionalized abuses and it seems to me that some of these abuses are rooted in some of this notion or rather had the institutions or the people in the culture had centered their thinking from a different spot than you could see that maybe we wouldn't have appear to have those type of abuses. Obviously they are very complicated and it's not necessarily  going to save them, but I just kind of think that actually that thinking of the world is maybe much more useful than some critics give it credit for. I was wondering what you might have thought about that.


Dan Goodley (07:59): Well, I think ableism and disablism are often used interchangeably and I think for example, in the states when people talk about people being ableist, I personally think they're talking about them being disablist. So I suppose for me, the way to think about this is that we now enjoy four decades of scholarship, writing research driven by disabled people and their allies and in the UK, for example there's been a lot of focus and continues to be a lot of focus on disablism and disablism is the institutional exclusion of people with impairments. And of course that remains an absolutely crucial part, not only of research, but obviously of activism, of the arts, of kind of pinpointing those moments of exclusion and challenging them and that's absolutely essential. Over the last decade or so, there's also been a move within activists and academic and artist circles focusing on something called ableism and I'm thinking of the work of people like Gregor Wolbring who's a disabled writer in Canada. And what Wolbring does is to say, yeah, disablism is absolutely significant and we need to contest it and we need to understand it but one of the things that kind of goes on in our everyday lives is that we don't subject to the same kind of critical scrutiny as something called ableism.


Dan Goodley (09:30): Ableism is the idealization of able bodied and able minds. Something I suppose we know when people talk about the able bodied and how the able bodied occupy a kind of position which is often kind of high in the hierarchy than disabled people. What they're doing really is they're talking about ableism and it's intriguing to me because I think that we don't actually question and similar to the idea of ability we don't actually question or even kind of subject to kind of some real critical thought the way in which ableism underpins everything. So not only are, you know, the classic case within disability studies is the inaccessible building that the wheelchair user cannot enter. And there's an example of disablism, but underpinning that is what we might call an ableist architecture, physically as an architecture, but also an architecture in terms of kind of a mindset or an intellectual or a philosophical view and it's quite worrying even that even some of the more transformative or radical thinkers that we might think of often themselves also do not subject their own kind of ideas to this kind of interrogation where they actually might be ableist.


Dan Goodley (10:52): I mean, I'm filling out a research application at the moment. The first question on the research application is research vision and implicit within that is vision. So this very ocular centric and I'm just thinking if I was a blind scholar or a blind researcher filling that out, is there a moment there, already the language being used, which is kind of excluding me. And so I think to disablist and ableist, we need to unpack these two things. They complement one another, but for me, they're also very different conversations that we need to have. So I'd be interested in someone saying to you you're being ableist, perhaps, maybe they're saying you're being disablist, I don't know. We need to be clearer in the kind of language that we use, because these are complementary practices, but they are very different practices.


Ben Yeoh (11:45): So, I agree. In this instance, I think they were hiding behind-- they were being disingenuous, but actually had they wanted to be more specific, I think, thinking about disablism rather than enablism, but I thought it was ironic because it made me think that actually-- cause I thought back to that incident and said, no, but I actually thought back even just to my week and I was thinking, well, actually you probably would've been right had you just picked out some day to day or some of my normal thinking, but actually in this instance you were wrong. So that was one of the triggers for it and I guess this kind of leads into one of the themes of your book on the role of technology as well, because in some ways that is also bringing this other dimension, as in what happens if we are somehow technology enabled or even technology disenabled like somehow [Inaudible:00:12:43], some people would argue that social media is disabling us in certain ways, or at least is an extension of us not, you know, which could have be for good or for ill right? So that was the idea there, but obviously you can have it in physical mechanical limbs. We're seeing it in terms of interpreting brain waves for people who are pre-verbal or non-verbal, or have an issue with verbalizing, can now verbalize somewhere. And I was wondering, is this influencing your thinking and actually is this maybe one way of people to unpack it of saying, well, if technology is doing this and is making us think about these ideas in a different way, maybe we should just be thinking about them in a different way, regardless of where their technology is, which is, I thought one of an interesting reflections I had on reading your chapter on technology.


Dan Goodley (13:40): Well, I'll be honest I have a, like most people, a kind of [love/hate] relationship with technology. It's a love and hate thing. I mean, it's a Freudian kind of classic case study here of something [] also something that I push against and I think what's interesting about the way in which culturally we think of technology and disability, I think there are a couple of kind of common ways or common stories that are told. I think one of them is that technology permits disabled people, people with fiscal impairments, for example, an opportunity to become as functioning as nondisabled people in the world. And I think that's a story that we need to kind of challenge and to be maybe cynical about sometimes, because I think that leads to a second kind of area for me, which is around-- and it's a question really, is how do those engaged in technology understand disability? And I think what happens is that if we hold an idea of disability as something that has to be cured or rehabilitated through technology, which let's be honest, this is a kind of common trope that we have within our society. Then there's some real problems going on there about the ways in which disability is understood and I think like most areas of life and technology is just one of them, disability rarely gets offered up as an opportunity to think more broadly about how we understand the human condition and it frustrates me often that disability is often excluded when people are exploring what it means to be human.


Dan Goodley (15:34): It's almost like the last chance saloon, disability might eventually get thrown in there. And just as there's been some really important and crucial work, for example, around race or around sexuality or around gender, which is all work that we need to kind of come behind, I want to ask why is disability always left out or seems to me anyway, often left out of those conversations. So we go back to the point of technology. How often do we ask or consider the fact that many disabled people are digitally excluded for a variety of reasons. We know this because many disabled people live in poverty [ ] the. technological offer, what is the offer for? Is the offer still associated yet again with the notion of a rehabilitative offer of technology? Because if that's all that technology's being offered the grounds on which technology is being offered, then you can see straight away that there are some pretty dangerous and dodgy ideas associated with disability that are just kind of being implicitly brought into the practice.


Ben Yeoh (16:42): Yeah, I agree. It's interesting talking to a lot of my friends and allies when I mentioned that, oh, the statistics, at least in the UK are, you're talking about at least one in five somewhere on a disability spectrum or some sort potentially higher. And certainly in the world, you're talking, at least a billion people again, probably higher. So when you're thinking about all of these allied groups it tends to be one of the largest and yet is probably like you say, not so involved in the conversation. And then the conversation is led by not necessarily-- obviously the whole range of advocates that you could have, which I find is quite telling as well. And I do think thinking about your comment of technology, and then also we had it in design, I've been thinking a lot about, and I guess it's been around a while, but this sort of social model idea of disability, where if you just sent it around, I guess this is just ideas of inclusiveness across everything that you'd like to be inclusive.


Ben Yeoh (17:50): You get a world where essentially everyone, or at least a vast, vast majority lives peaceably and well which just seems extraordinary. And I was actually talking to a philosopher the other day, Jonathan Wolf, who was mentioning how that it impacted his philosophy. And we've had people like Tom Shakespeare talk about this as well and he was saying he was a little bit doubtful about utopias generally, but at least taking this model just a little bit further along from where it is today, you kind of see that actually you have enormous net benefit to so many kinds of peoples that it's almost extraordinary that we haven't explored it more. I was thinking, what do you think about where we are with the kind of social models of this idea and how it might impact our world and what we could be doing about it?


Dan Goodley (18:47): Well, I mean, I'm very happy with the idea of utopias. I think it's probably better to get out bed in the morning with a utopian view of the day than a dystopian one and personally, the social model disability for me was a radicalizing experience because at that time as a psychology undergraduate being subjected to some very pathological views of not just disabled people, but of human beings more broadly, the social model came along and it did something very affirmative because what it did is it said you cannot understand the human condition of which disability is part outside of the social world. And any sociologists listening would think, well, that's pretty obvious, isn't it? I mean, we are what we are because of the social world. Something curious happens with disability when it enters the world people tend to understand straight away the word disability in terms of either some kind of individual tragedy, deficit or flaw, one kind of something wrong with a human being. And as soon as you start doing that, you then draw upon ideas that are set up to understand that kind of deficient individual outside of society. Some of those ideas come from psychology, for example.


Dan Goodley (20:19): And so the social model remains for me one of the most important interventions in the field of disability, but also has many connection of course with other transformative ways of thinking, whether it be associated with black lives matter or whether it be associated with current trans politics, which is essentially asking us to pause and to act upon the fact that certain human bodies and minds are not given the same value as other human bodies and minds. So the social model is if you like a kind of an entry point into a whole host, a smorgasbord of different kinds of theoretical and political ideas. There's been a lot of energy spent over the last 20 years critiquing the social model, looking at the social models flaws saying, well, have we gone too far? Have we flipped over? It's a little bit like the labor party. And it seems to me that the social model, particularly in these post COVID times, has never been more relevant than today. So the social model for me remains like I say, this kind of entry point and with any entry point, you can go through a variety of different roads and routes. And it seems to me that these opportunities are not only for understanding and pushing the social character disability, but also seeing how the social character disability connects with other aspects of the human condition, each of which of course are also deeply social.


Ben Yeoh (22:12): Yeah. That makes a lot of sense to me and I reflect this also touches on your technology point that we are, well, I'll give you a couple of examples. In Iceland today, I was speaking to this with Sally Phillips there are few to actually no people with down syndrome being born now because of the way that they do their testing and I was speaking to some people who are very deeply involved within deaf culture and because of medical therapies for hearing, there's a big debate as to the impact on what's a really rich and beautiful culture in itself as well. And I think stronger thinking about the social model, imperfect as it might be itself, as all models of the world are not the world, right? But as an entry point could be really helpful for thinking about that. But I was wondering, did you have any reflections on this, on how actually marginalized communities are becoming potentially more marginalized communities and a social model is perhaps a way back in?


Dan Goodley (23:29): Yeah, I suppose the first thing I'd say is that the way in which the social model language or the social model discourse has kind of entered the popular discourse is inevitably at least to some simplifications. And so there's a very simple distinction made between the medical and the social models of disability. What happens without that kind of very simple distinction is that those people associated with the medical model often feel very hard done to they often feel that they're being victimized. Now for me, I think what the social model does is because it's social by nature, it views all practices as also having this kind of social, cultural, economic, political aspects to them. So when you talk about those examples of testing for down syndrome or medical interventions around in relation to deaf people or the deaf community. I'm now starting to think about different words and different ways of understanding that perhaps are not as simple, but might actually be a bit more useful in understanding what's going on there. And I think what you're describing there is medicalization and medicalization is very different to medicine.


Dan Goodley (25:06): You and I are not  going to you know, we get a headache, we're probably  going to think and at some point embrace some of the ideas that come through medicine. We'll take a tablet for headache, but when we enter something called medicalization, this is where it's become a totalization in discourse. And I think that we are to draw upon some kind of ideas from disability studies, but also from science and technology studies. We are living in a particular period of time which is framed by medicalization. That is where the human condition is increasingly being understood through the discourses that we might call broadly medical and anything that's medicalized means that we end up simplifying and going down a particular route and also throw in a couple of other ones, which I think are kind of bedfellows, if you like. Psychologization, this is where any understanding around the human condition, whether it be emotion or whether it be the way we think, cognition, that there's some powerful ideas out there that come from psychology and fellow disciplines that end up endangering the way in which we understand ourselves.


Dan Goodley (26:33): So it's impossible to think outside of this kind of very powerful discourse of psychologization. I'll throw in a third, which is psychiatrization, which is very difficult to say, but again, you see, these processes are drawn upon very powerful ideas through which people now tend to understand themselves. And of course, if you think about the current debates around the mental health crisis within young people, for example, one of the things we need to consider is the extent to which mental life, or whatever we want to call it, is increasingly understood through very, very powerful processes of psychologization and psychiatrization to the extent to which it seems for all of us actually, almost impossible to talk of our emotional lives without drawing upon some preexisting, very powerful ideas from medicalization psychologization. So this is what the social model is doing, again, it's an entry point into thinking critically about the very words and the very ideas that we use to understand our everyday lives, living with a human condition.


Ben Yeoh (27:53): That's super interesting. I thought about medicalization, but I hadn't thought about it and the way you articulate it, I do think, yes, you could think of those examples that I gave and described as a sort of medicalization thing happening and if the social model gives you that, that's very interesting. And I do that because actually I'm thinking a lot about death at the moment as well as an idea and I think that is something which is obviously as well being very medicalized. And it's interesting, this idea, and also science is a process mostly and so scientific ideas around the brain or psychology or psychiatry are models and processes. And for instance, if you talk about psychiatrization, most of those drugs, which work on the brain we don't really understand how they work very well, if at all for a bunch of them. So, it's quite interesting. So you've got this kind of empirical sort of medicalization of a thing but yeah, there are social ways about thinking about those ideas as well, and maybe they do go hand in hand and intertwined and it would be more useful to try and think of them sort of together, not necessarily oppositional, but certainly not one without the other, which is your point about thinking about rooting yourself in the fact that the human world is nothing without the social world.


Ben Yeoh (29:31): That also brings me onto another thought, which is through your book on interdependence and some of that. We talked about it a little bit on potential interdependence on technology and these other ideas and I was thinking-- I was discussing the other day with someone actually it was with this philosopher on the philosophy of music therapy or music performance and I was noting that I found this was an incredible thing in philosophy because someone is enabling somebody else to produce music. And the end musicality only exists in the relationship with all of that and it doesn't exist without what we would call this interdependence, but to me, it was kind of beyond an interdependence because the relationship, the connections were the thing, the actual end piece of music, beautiful as it is, does, does not exist without all of those connections. And then reflecting on your book, I was thinking that actually that extends to I mean, potentially all of human life, right, but with all of this, this fact that we are nothing that's probably too extreme, but we are not the same without our connections and interdependence and understanding us without that seems to me a misreading of the human condition, which again, I hadn't really thought about that through say an ability disability lens or this performances lens. But I was thinking about extending that and I thought, wow, this is kind of a really-- potentially you could apply as quite a deep insight and therefore critical to maybe some other ways of thinking or opens up some things. Have your thinking of about-- maybe you could describe how you thought about interdependence in your chapter and maybe how you are using it in your current research and thinking now.


Dan Goodley (31:31): Yeah, I mean, interdependence is a big idea that's come not only through disability research, but very much through feminist research through critical race ideas around community. So it's a concept that's been utilized. And of course you could argue that at the heart of many political or cultural groupings is what we're talking about here is a kind of notion of community. I think interdependency takes on a particular significance in relation to disability. Firstly, I think disability is the kind of quintessential interdependence category because we think historically disabled people's relationships with PAs, with the various technologies over the years display already what we might call a distributed self. This idea that we are what we are through our connections with other people and with other things and it frustrates me when I hear conversations about interdependence and disability is not the first to be mentioned because it seems to me that disability, like I say, is like a quintessential position. I think we also need to recognize that we live in times whereby interdependency is often relegated and we this goes back to the discussion we were having earlier about the dominance of ableism and the ways in which ideas of ableism rely upon processes like psychologization and medicalization.


Dan Goodley (33:19): What they're all doing is essentially saying individuals, when they work well, function or are competent or autonomous have value in the world and when they don't then they fail. Whereas interdependence, what that's doing is, is kind of turning that on its head and saying, no, we are what we are through our distributions, our connection…. quite clearly that music is a collective process there. To what extent do we value and celebrate our distributed selves? And let's be frank here, we go from one context to another throughout our life course where it's all about individual achievement. We think about schools and how schools are set up in particular ways to must I fill kid's heads with ideas that will permit them to pass their exams. It's all about individual achievement there. We look at kind of what our workplace is. I'm thinking about my own, which is university workplaces, which are all about individual achievements, about being agile, responsive. We hear this language all the time in these turbulent times and what's worrying it seems to me is that we still live in a very, very individualistic culture.


Dan Goodley (35:10): So for me, the idea of interdependency is an antidote to that and to push it even further, if you really want to understand what interdependence is about, well, go to disability because disabled people's communities and disability theory that's been generated over many years now is always kind of alerting us to the fact that when the human condition is word world, it's doing so embedded within a community embedded within a variety of kind of crucial interrelationships. Let us not forget here that disabled people themselves are always embedded in those communities and quite frankly, some of these communities would not exist without disabled people. I was once at a seminar where someone asked the question, how much are autistic people costing the economy? Well, in other ways, thinking about that would be, well, how much money are autistic people generating for the economy through the industries that exist, through therapy, through psychology, through all these specialisms. Again, there's this idea I think that's based upon the notion that disability is somehow kind of sucking resources out of society when actually disabled people's place within it and we think more broadly about our place within our communities is more kind of relational. So I think, yeah, interdependence is a potentially affirmative understanding of essentially our very relational nature as human beings.


Ben Yeoh (37:11): That's super interesting. I hadn't appreciated until I heard your articulation about how you can really see disability as your go to root idea for thinking about in interdependence and like you say, this is partly because there's so many other things going on that oftentimes that maybe most of the time disability is not the first idea or ideas around that which come through. And now that you've put it like that, it obviously should be the first way of thinking about this because it's where it is and it's rooted. So I find that really usefully--


Dan Goodley (37:55): I mean--


Ben Yeoh (37:56): -- challenging.


Dan Goodley (37:56): Sorry, is it okay to come on--


Ben Yeoh (37:57): Yeah.


Dan Goodley (37:57): -- Come on that point. I mean, yeah, I suppose I would just kind of maybe disqualify what I've just said in some ways around disability. I mean, there's a frustration for me that disability is often not considered and I suppose if somebody works in the area of disability studies and disability research, I'd want obviously disability to be a kind of a conversation starter. But I think also, we have to be careful here that we don't replicate some of the kind of divisions that have happened in the past. So I wouldn't want to argue that disability appears without recognizing that we are all very intersectional and there'll be moments within particular spaces where class and race and sexuality, gender, they might actually be the, if you like, the starting conversations here. So I just want to be careful that I wasn't just pushing through this kind of idea that disability is the grand master narrative that everybody should be thinking …more that we need to think about how disability intersects with other kinds of identities as well.


Ben Yeoh (39:15): Yeah, no, well heard and there's a tendency sometimes by, how do I put it, to say majority groups to kind of divide and rule as they have done for the centuries, which obviously we would not want but I do think the point is well made in terms of the challenge that you've given to me that I didn't again, like there are these other and it's very intersectoral like you say disabled people are often poor and things like this. But particularly thinking about independence and relationships of that type of thought, I hadn't fully seen it through that disability lens, which I think would be useful on that. And also because so many things in our world do rely on that relationship across creative arts or even business and the things. So I'm kind of just thinking out loud on that.

Ben Yeoh (40:15): That maybe leads me to one, somewhat intersectional idea also in your book about desire. I was listening to Amia Srinivasan, who's a philosopher now at Oxford, probably most famous for her feminist philosophy, although she writes really beautifully about animals as well. But she's written a book which has a lot about desire and there was one thing I was picking up in both of your works, which is this idea about how much desire-- Well, I guess there's this interdependence part, but to what extent is learned and to what extent culture shapes that. And I was kind of surprised to see a chapter about desire in your book, which probably was a challenge to myself in its own way. Maybe you want to reflect about what you were thinking or saying about raising that question in your book about other human questions.


Dan Goodley (41:22): Yeah, well, it comes from a number of different spaces. I mean, one of them is associated with what we might call Crip theory, which is an idea generated from the disability studies community which deposits this idea that disability is something to be desired. And that is a really interesting idea on many levels. I mean, what it does, some people find that really challenging, because of course we're brought up to understand disabilities as being the very last thing that people would desire. But what Crip theory does is it suggests that disability is part of the human condition, is something that could be desired for what it can give and what it gives in the world. And I really love the idea of this kind of idea of disability being very productive in the world. This idea of desires being productive also links into a kind of philosopher that I really like and who talks about one of the real hang-ups that human beings have is that they're just caught up in this never ending cycle of desire, which is predicated upon designing the things that we feel we lack and we try and, you know, you get that theme. I kind of just speak personally, but it's like in those moments upon online shopping, where there's a real feeling of, you know, the desiring that very object that I'm buying. As soon as it's bought, I'm probably as miserable as I was before and this idea of desire as lack, this model of desire is a dominant model within our societies and we spend our lives …  as just replicating over and over again, this notion of them getting hold of the thing, the object, that we feel we lack.


Dan Goodley (43:38): So going back to the Crip theory model, what that's trying to say is, well, how might we remodel or reshape it, an understanding of desire? And one of those kind of remodeling might be to think about how we desire connections with others that in that desire, this kind of more productive model desire, we are driven not by filling this kind of empty hole, if you like, within us, but we are driven by the connection with one another to be yours, like desiring machines coming together, coupled together to create something more beautiful in the world. And so it seems to me that what disability research and disability theory is doing is not only is it challenging some of these old ideas of ableism and disablism, not only is it challenging the kind of dominance of medical models, it's also turning up in the world and offering us new ways about how we might feel about ourselves and others and I really love that, and that kind of taps into my more utopian moments in the morning when I'm trying to be more productive with myself and with the way that I see the world.


Dan Goodley (44:55): And indeed, I think you can see that there's truly beautiful moments of connection are precisely the kind of things that we not only should desire more, but actually often do desire more. It is only through connection with others that we start to realize different aspects or different, if you like, potentialities … causing the human condition. That said, I will be totally and brutally honest, I spend my life living off in that model of desire as lack and it's something I'm trying to work through accepting that it'll always be with me at the same time as trying to kind of develop new ways of desiring in the world for connection. And that again is where I think that disability ideas and the disability community have so much to offer.


Ben Yeoh (45:51): That's fascinating. Maybe that touches on then a couple of personal things and I guess it glances on the desire connection things. I was  going to ask you about Nottingham forest and what being a lifelong Nottingham forest fan has potentially taught you or you reflect on and now you talk about desire. So there's two things which come up there. One is obviously actually the interesting connections that I think football, particularly in this country can give people and community and those things. But then there is this flip side of obviously desire and want, which I see across all football fans, I'm kind of more moderate maybe because my dad was such a big football fan and a lot of my friends. But it seemed like an interesting segue on that is, are there any reflections on being a lifelong football fan there?


Dan Goodley (46:52): I mean, you could have used the term obviously long suffering, which would probably be better. I mean, I think being Nottingham forest fan captures perfectly the split subjectivity that I occupy, which is on one side deeply ableist, wanting success, achievement, glory and the reality, the other side, which is none of those things, but actually quite honestly the things when I think of this football club, it's all about community, it's all about admiration of my dad, it's about my identity, it's about a sense of belonging, even though I don't live there. And I think football is one example of the different kinds of communities that we all occupy whereby we find our moments of interconnection interdependence and quite frankly, new models of desire because if you're looking to feeling of failure, don't go to Nottingham for your football, frankly. I think that my relationship with a football team, they just capture that split personality that we all have. But I think it's more about actually these kind of different models of desire that kind of drives us and there's nothing quite like for me parking a car, walking with my dad [Inaudible:00:48:23], well, doing it for a long time now. And just that feeling of being around other clearly diluted people and that sense of togetherness and I think we all individually find it in different spaces. Don't we? Like [Inaudible:00:48:40] festival would be another one for me, a moment of real human connection.


Ben Yeoh (48:45): And it is that idea of connections that we desire which I think is one of the touch upon themes in this conversation. Perhaps two or three more questions to sort of finish off. One may be riffing on the sort of personal side. I think you say right near the start of the book that we often come to disability through a personal story of some sort and for me, it is through my son who I still believe has taught me more about what it is to be human and the human condition than I'd learnt in my previous decades and still does as he leads me into places in the world I definitely would had not have gone through myself. And you give a story, I think about your grandfather with some of that. So I'd be interested in your reflections on that if you'd like to share.


Dan Goodley (49:52): Yeah. I mean, I really loved your phrase there, leading you into places that you are not perhaps prepared for…I think that's a really lovely wording actually and it reminds me-- I've been very influenced by the work of people like Rod Macaco and Tanya [ ], who are disabled researchers, disabled writers who embrace their kind of philosophical viewpoint is kind of phenomenology or interpretivism and where they say, take your stories seriously to understand how you are being perhaps led into the world, or at least being in the world. And in writing the book, first, I wanted to write a book that was not aimed at academics. Secondly, my mother read every chapter of the book, which was really kind of her. My mom's not an academic, but she's a ferocious reader and I wanted her to check the readability of the book and I think hopefully she did a good job on that. I can't thank her enough for that. And in writing the book and kind of thinking about the ideas and the advice really, people like Rod Macaco, was to take our stories seriously. And my own really, disability was very much part of my growing up. My grandfather had had a stroke at a particular age and his voice was changing such that no one really could understand him apart from myself and my uncle who lived with him and I think, cause I was young when it happened, it was kind of quote unquote normal to me.


Dan Goodley (51:35): So I'd have this kind of pretty deep relationship with him cause I could understand what he was saying, but of course, as soon as he left the space of the house he was subjected to various kind of responses disabling responses to go back to what we were talking about earlier.  I always remember I tended to be in kind of shops or outside fish and chip shops. Maybe that says a lot about what I did with my grandparents and just having that feeling of kind of, you know, like anyone does at an early age, just of anger and a visceral response to other people's response to members of your family who behave in ways that are just part of the makeup of your family. And so it came from that and I think alongside those family stories is the other area which really peaked my interest around disability, was doing a psychology degree and I was lucky enough to do a psychology qualification where I was taught by lots of radical psychologists Marxist, psychologist feminist, who really pushed me to think about what psychology did in the world, but alongside them, I was taught by a lot of what I would call mainstream psychologists who really presented disabilities, some really, really dangerous ways, really negative pathological ways.


Dan Goodley (53:05): And in fact, ways that were very similar to some other kind of moments of interaction in my family, in shops and it's kind of trying to work out what was going on here and I think those personal stories and that experience of being trained if you like in a particular discipline led me fortunately to the social model of disability where disabled people themselves were organizing their knowledge, which is counter to that really kind of negative and often violent response actually to disability and I might understand that as ableism or as disablism. But I think what is interesting about it is that most people will have had some personal experience of disability, whether disabled people themselves, or whether within their families and like any kind of experience of discrimination, which is what I used to experience with my grandparents, sometimes you have to-- it takes you a while to kind of find the language to understand that and luckily, fortunately now there is this, if you like this throwing into the mainstream of these alternative ideas of disability produced by disabled people themselves that do two things. One, they subject with these kind of medicalizing and individualizing stories to critique, but then at the same time they offer up alternatives and I'm sure you've had this feeling with your own son. Not only do you need the critical take on it, but you do need the alternatives cause quite honestly if you just sit with the reality of discrimination, it can be overwhelming.


Dan Goodley (55:06): Fortunately, disability activists themselves have created knowledge, which are not just utopian, nothing wrong with that, but they're actually practical, an alternative way of understanding the world. And so, being led into places that you perhaps not had in mind initially let's just hope one of those places that we're led into it is a way of understanding disability and the human condition in more productive, interdependent, more affirmative ways.


Ben Yeoh (55:39): Yeah, I think so and you raised that point at the end about these alternatives and I think thankfully there are some, like you say, often produced by disability people or other thinkers. Very tangentially, I see this a little bit with climate activists or activists-- Well, there are some climate people who are despondent about the alternatives and therefore are not as energized as they could be. Whereas the ones I meet who are pushing on alternatives, and I think there are a variety that you could choose are energized to change the world or be that part of the world. So, this is one of the things that I try and talk about is that there are these alternatives and a variety of alternatives, but all of this intersectional stuff that we've talked about, and sometimes you are led there, sometimes you might have to go and try and find it, but you can and that will make, I suggest one be more fulfilled or at least feel that you can do something. And I think that's very interesting thinking about your own work, cause I picked up that you, how would I put it, co-produced research often with disability thinkers as well. So maybe as my second last question, I'd say then maybe tell me about your current research, what you are interested in and maybe some of the process that you are doing with sort of co-producing research and how that works.


Dan Goodley (57:24): Yeah. I think that co-production has become a really popular term across policy, across research, across various stages. I mean, hopefully our understanding of this and hopefully our practice is about starting with an assumption and the assumption is that disabled people are not passive objects of inquiry. It sounds again, when you say it you think, well, yeah and what's the obvious statement …  this morning, but you know, let's be frank, there are industries of research, there are disciplines across universities whereby disability is ubiquitous, but it's ubiquitous as a kind of passive object of inquiry. Co-Production, hopefully works from the position that disability is the driving subject of inquiry and that disabled people can occupy positions of being theorists, theoretical provocateurs, methodologists, researchers, analysts, co-writers, co-authors. So this is about it's been an argument from social model writers for many years, is what used to be called emancipatory disability research, is that research should be driven by disabled people in collaboration with researchers to identify matters in their lives are important, and to come up with particular changes that improve their lives. So, what I think is interesting again is  how often disability is not mentioned, how there's a whole history of disability researchers that are ignored that have been arguing for this kind of more emancipatory model for many, many years.


Dan Goodley (59:29): So, co-production knowledge is, again, sort of picking up on some of the things, again, we've been talking about today which is around interdependence, working together and hopefully challenging some of the hierarchies that exist between the so-called researcher or the researcher and the researched. And so we've finished a project with Lydiard and Catherine [ ] and Sally Whitney and other researchers who've explored together particular researching ideas whereby we try to create opportunities for working together, writing together and to be fair to research funders and to university settings co-production is becoming a lot more kind of promoted and definitely kind of more desired as in a model of research. One thing that we do need to take seriously, however, is that within the university settings, disabled researchers are conspicuous by their absence disabled researchers are not coming through university contests. When we work alongside non university researchers or disabled people's organizations, we must ensure that they are probably funded, not just remunerated funded and I would suggest it's kind of a bit of a current [theme] is the idea of experts by experience, which is a term used a lot at the moment.


Dan Goodley (01:01:08): Let's be very careful of that term, cause it seems to me the term experts by experience is being used by researchers and practitioners and policy makers to essentially bring in some people to offer their stories and their opinions and not to be properly recognized, nor properly paid for that kind of work. So hopefully we start a debate there around co-production challenging some of the kind of distinctions between the researcher and the researched, the academy and those outside of the academy and ensuring that we are working with interdependent models, collaboration that's not just value people for their expertise, but also ensure that they are funded properly.


Ben Yeoh (01:01:56): Okay. That makes a lot of sense. I'm very far away from academic circles. I'd never heard of this idea of experts by experience, but the way you describe it I worry a little bit if that's an excuse to get some people in and not pay them, but that I referenced right at the beginning of the conversation about always being slightly worried by words or jargon because it's used as a cover of like, oh, that would be useful, but let's not--


Dan Goodley (01:02:24): I think it is. I agree. I think it is. I think it's being used in many cases as a box ticket exercise and what really is offencing about the idea of the expert by experience is it ignores the fact that there are many disabled researchers out there that might are not working in universities, but for example, self-advocacy groups or parent organizations who know their stuff, who are carrying out research, have done research for many years and they're not experts by experience, they are researchers.


Ben Yeoh (01:03:06): Yeah. So this is this notion of, what would I call it, independent research. I mean, they're just researchers, they're just not within an academic institution. So we help run a group called transport sparks for autistic young people who are interested in transport and actually that group as a community group has actually a lot of quote unquote research to offer but we wouldn't view it as research, right? It's the way that we interact with world and also interact with institutions and organizations and this other systemic framework, which I think is really really interesting and how for instance museum spaces have only, I think relatively recently tried to really grapple with this and actually still do it fairly poorly, even though they're trying to reach out to some of these groups, which I think is really interesting and that is some of this I idea of who's got the power of research, ableism, disablism and these things. But some of it seems to me that actually people are just not listening carefully enough or they could just listen a bit more carefully and they probably would then hear some of these things, which people are saying for a while.


Ben Yeoh (01:04:25): So last question then would be do you have any advice really or advice for people? I guess this could come in two or three flavors. One would maybe be life advice or advice if you are interested in doing kind of research or things. But another thing might be just simply advice or thoughts if you wanted to explore this area or any reflections that you might have for instance, this might be advice or thoughts you've had from having followed your football team for so long that's probably taught you quite a few things as well, which you might want to share. So yeah, any final thoughts on advice for life or advice for people.


Dan Goodley (01:05:10): Oh dear. I'm not sure you want to take any advice from a Nottingham forest fan. I suppose it's a very simple point, but it's something that I think often gets ignored is when you are interested in a phenomenon in life but that phenomenon in life has historically been understood as a passive objective study, then we need to really question and challenge that. And it seems to me that if one thinks across a variety of transformative or political context, they've come about, they've been transformed when the objects have become the subjects, have been driving the kind of inquiry, driving the kind of questions and conversations that would be had. So for me, in terms of the place of disability, the starting point always has to be disabled people themselves and to recognize that doesn't matter what the industry of psychology, for example, might have to say about disability, there's a huge body of literature written by disabled people and their allies that has as much or more to say about the phenomenon than those so-called expert disciplines. So, yeah, move from the object and embrace the subject would be my advice.


Ben Yeoh (01:06:50): Move from the object to embrace the subject. That's a great final phrase to leave with us. So Dan Goodley thank you very much. Your book, Disability and Other Human Questions is available, please do go and read it. Thank you very much.


Dan Goodley (01:07:08): Thanks, Ben. Thank you very much.



In Podcast, Writing, Arts Tags Disability, Podcast, Dan Goodley

Sally Phillips: clowning, comedy, family life, disability and faith | Podcast

August 18, 2021 Ben Yeoh

Sally Phillips is well known for her award winning acting, writing and comedy. She had  roles in 'I'm Alan Partridge', 'Smack the Pony', 'Green Wing', and 'Miranda'; and in the US, Veep.  In 2016 she fronted the documentary 'A World Without Down's Syndrome?' (BBC2). I think she should be better known for her disability rights advocacy.   You can follow her on Twitter and Instagram.   

We talk about types of clowning and why the clown always says ‘yes’; the challenges of older women roles in the entertainment industry and discuss the differences between US comedy and British comedy

We chat about the importance of faith to Sally and what the aphorism:  there being two routes to God (love and suffering) means. We talk about embracing uncertainty, being curious and open minded and the practice of prayer.

The disability community is important to us. We both have children with disabilities. We talk in detail about how that impacts us, how the mainstream world interacts with the disabled and despite the challenges how  to have fulfilled lives. How we’ve been taught to live in the moment.

Sally ends with advice for fledgling creatives and expectant mothers.

Ollie make guest start experience telling us the best thing about having Down’s.

Podcast and transcript below, video above.

Podcast links:

Apple Podcasts: https://apple.co/3gJTSuo

Spotify: https://sptfy.com/benyeoh

Anchor: https://anchor.fm/benjamin-yeoh

Listen here:

Transcript (unedited, typos likely)

Welcome to Ben Yeoh Chats…My personal podcast. If you're curious about the world, this show is for you!

What does it mean to be a clown?  What does disability teach us as humans and as parents?

In this episode, I speak to Sally Phillips.  We discussed how Sally thinks about comedy and how we found the joys and challenges of parenting a disabled child.  If you enjoy the show, please like and subscribe as it helps others find the podcast.

Hey…everyone. I'm super excited to be chatting to Sally Phillips.  Sally is an all-round amazing human, perhaps best known for her award-winning acting, comedy, writing, and directing, but I think she should perhaps be better known for her disability rights advocacy as well.

Sally, welcome.

Sally Phillips:   Hi Ben, thank you for having me – lovely to be here.  I'm looking forward to it.

Ben Yeoh:  So, is it true (I think I read or heard somewhere) that you've been to four clown schools - I mean are there even four clown schools in this country or did you do the whole Jacques Lecoq thing or Italian Country Escape?  Are there actually four clown schools or did you exaggerate?

Sally:  There probably are four clown schools here and I did three of them here in fact.  Philippe Gaulier, (you are correct) who used to teach with Jacques Lecoq.  I did clown with him and he's the master.  He's pretty much the best (I think).  

He taught lots of things because there was a month of clowning and that was definitely his Piece de Resistance, and I studied with John Wright who did Trestle Theater Company.  If you remember them with the huge masks, he taught in Middlesex for a long time.  He's a great clown enthusiast and he had a company called, Told by An Idiot.  He did amazing clown work.

Then I did with Angela de Castro.  She is a Brazilian clown who worked with Slava on the Snowshow.  She's legendary for running a Natzi Clown School in Buenos Aires, but it wasn't very Natzi when I did it here.

 

Sally:  We said the dogs might bark.  I've got three kids and four dogs.  It's close to mammal hoarding, isn't it ?  

Ben:  I think you put it in your Instagram account mother. 

Sally:  Yes, we just got a puppy.  I don't know why, well I do know why because I can't say “No” and I fell in love with these puppies.  Someone said you are the breeders and they were really nice.  I am going to show you the puppies, very cute.

Ben:  That is super cute.

Sally:  That is really hard to resist.  But then Yana who I lived with, you just saw.  She just as I was about to get one of these, got an English Bull Terrier puppy.  So, I was like, “Oh we can't get a puppy now because you've got the English Bull Terrier and then the breeders kept getting in touch, saying you've skipped that later, would you like the next later and after a while I said, Yes I would really. So, we've just got this one.  You know, how many dogs is too many?  I would say four is too many.  There’re no more drugs than our dogs. 

 

Ben:  Isn't that like this clowning technique, isn't it essentially the technique where you just YES and keep all the coming, and it's hilarious.  Maybe it taught you too well and you've taken it.

 

Sally:  Clown always says Yes, and in fact one of my disability advocacy friends calls me – she says you're Japanese Sally, can't say, No.  The combination of just say, Yes, and see what happens.  This always leads to disaster of course, which is why clowning is funny.  Always saying Yes always leads to disaster and awkward situations and that's why clowns are really shy, but yes, not a good policy for life, it turns out.

 

Ben:  I am guessing, in clowning you can do comedy, so I'm not completely well read up but you can have two schools of thought in clowning.  There's the clown-clown and this kind of Bouffon clown?

 

Sally:  Yes, that's exactly right.

Ben:  Like how you do and you have a higher-lower form of doing real lower people?

Sally:  I think one is “laughing at” so Bouffon came from the disability community, so in Paris, they used to have all the disabled people living in the forests outside of Paris and then once a year they would come in.  That's the hunchback of Notre Dame.  Come in and there would be a parade which everyone thought was hilarious where the king would play a pauper and these disabled people play kings and whatever.  The Bouffon tradition comes out for that and in really pure Bouffon, people still put outfits on with sort of hunchbacks and lumps and bumps, and then they might say things like, “it's kind of satire, it's sort of horrible in a way.  They thank you for putting me in the ghetto, and they are smiling. 

I guess that isn't really satire but then on top of that, you have satire and wit which is just very cerebral and not many hearts.  Clown, I think is human nature just in its most raw, nude, and uncertain form because I think really it's what happens when you take the mask off, so lots of clown school exercises to reveal what's going underneath.  So, one thing that happened is Gaulier got four up at once, (I don't know if you've heard much about him but he's famously rude, he's just horrible to everyone, I mean it's sort of funny).

It hurts the person and the person's hurt makes you laugh and love them and it's great training for the industry.  He gets four people up at once and he's videoing you.  Then he has four of you sitting on a bench and he gets one person to stand up at a time and then he asks you questions when you're standing up and kind of humiliates you.  He does that one by one, and then they replay their footage that they've actually been shooting the three people sitting on the bench.  So, you don't know you're being filmed and it's completely gripping because people are laughing along with Gaulier jokes which always are very acerbic and spot-on about the person and feeling really sorry for the person and really frightened themselves about what was going to happen to them in a minute and thrilled that it wasn't them being humiliated.  So, it was people with their defenses down because they thought they weren't being looked at.  It's fascinating and also beautiful or sort of pathetic or pathetic uncertainty and hopes and dreams revealed and that’s what clown does really-really well.

 

We're both parents of people with disabilities.  I think that's what is familiar to me about living in a special needs world.  It does quite often feel like clown school with all the terrible pain of clown school.  The hilarious recognition that we're all completely ridiculous.  The more precious a part of your character is to you, the more ridiculous it is to other people.

 

Ben:  I was quickly kind of reviewing over the last few days your comedy work and you just have such a vast range and your imagination.  A lot of it's quite physical.  I was just wondering, does that come from some of it being taught on things or is it just creative imagination from having to write because you've written skits and your sketch shows and now you're acting in all of these things as well?

 

Sally:  The physical stuff.  Well, I came into acting via physical theatre, so I did sort of sub-complicity style things.  I toured the UK during A-level text, French A-level texts. Therese Desqueyroux, I played Guy de Maupassant, I played A Prostitute Dying of Syphilis, torturing Gay de Maupassant once he died because he didn’t give her a sympathetic write-up that kind of thing.  Lots of cartwheeling and playing lots of different characters.  That was very useful for going into sketches and with this training, I did French and Italian training and that was much more physical than British training.  British training is very vocal and psychological, I think.  I trained with someone who worked with Daddy of Four in Italy.  There was a lot of mind in that.  I guess I really liked it and I think it's a really interesting way.  I think I often create characters or used to create characters outside in, so I'd get the costume, walk, hair and voice and then start putting the psychology in. 

Then the other question about the imagination, I think I have always had a completely very lateral mind.  I think that's partly to do with having this fractured upbringing being brought up overseas and changing countries every year and a half so the connections I'm making are not the same connections as everyone else.  So, I think if everyone else had had my background, they wouldn't seem so lateral, but what is sort of normal to me seems really left field to other people.  Then when you're in a situation where you're getting a genuine answer and everyone's laughing, it's my genuine answer to that question.

 

Ben:  That makes a lot of sense.  You've done some quite US comedy because of Veep and everything, is that quite different from British comedy as well, do you think?

 

Sally:  I think um US comedy is quite different from British comedy, though they're getting more similar but Veep is actually a British Show.

 

Ben:  Yes, it's the political comedy thing.

 

Sally:  Yes, it was in London.  It was interesting when the American crew took over.  It was really interesting for me because the script had less intelligence which I wasn't expecting.  It's not that they're less intelligent, but there was a lot more freedom and they were just a lot less repressed. 

 

Ben:  They are more physical acting rather than the gags.

 

Sally:  Yes, and there was this sort of virtue, I say swearing with the British crew that sort of course comes from being enormously repressed and the Americans just have sex.  So their stuff, they want to be talking about to shock.  They had to be choked, this was a big joke and this is something I didn't even know was a thing. I suppose Michael Hutchins, they rang a vague bell but really not something that had appeared in my world but that that was where American comedy was at.  It was quite different.

 

Ben:  It's also noticeable because strong female leads, slightly older or older female leads as well and we don't see a lot of that on the screen really like female actors as they get older, don't really get parts.  Actually, they're often not the writers or the directors as well and I wonder whether you think that's actually changing at all but before we even get on to the fact that we don't see much disability on our screens and all of the other things, we haven't even seen it in and seeing women on screen in these great roles.  It doesn't seem to me like they're not necessarily written, although I guess that's part of it.  Is it changing at all or is it still just the old power systems?

 

Sally:  The figures are quite depressing.  To me, it feels like it must be changing because I'm working…but the figures are really depressing.  So, what's happening is now a parity of numbers, so it's something like 52% male parts, 48 female parts something like that but they are older men and young women.

Ben:  And the men can kind of play any role and the women…

 

Sally:  For example, I had lunch yesterday with Patricia Hodge.  She's 70, I think or 72 something like that.  She is playing the mother of Roger Allen or mother-in-law of Roger Allen who she played opposite 40 years ago.  So, the same age, but she's now playing his mother and he's married to somebody in their late 30s.  That's the screen thing.  For example, in 2019, BAFTA's leading actress – they did a survey and they found that in the previous 20 years, the average age of the best actress nominees had gone down by 20 years whereas the guys had gone down by three years meaning that in 2019, Brad Pitt as the youngest male nominee was still three years older than Laura Dern as the oldest female nominee.  So, now when people say to me, “my daughter wants to act, should she go to drama school.  I kind of say, NO.  Schools are great now for people between 17 and 25.  So, if you used to be able to go to university and then drama school, somebody like Nicola Walker did that, she went to Cambridge and then went on to RADA ( I think).  You've missed the boat if you're 25 because by the time you come out, you've really missed the boat and that's too late.

So, yes, I think there are parts written for women who are older but they routinely cast 20 years younger. A man in his 50s would have a wife in her 30s or 20s.  So, it's not that the parts aren't there, it's just that what women actually look like and behave like and speak like and think like, isn't being represented by those people.  So, then this pressure for someone like Nicole Kidman to present with a young face.  Sort of baby face and have loads of fillers and all the rest of it.  It's quite hard to know what to do, I haven't done any of that. I'm beginning to lose my nerve. I'm not going to do that.  I don't need to do that, I do comedy.

 

Ben:  I guess you've got to write and direct your own parts then but…

 

Sally:  Then you see your neck and you are like, “Oh my god, is that really what it looks like.  It’s you and different from 10 years ago.”

 

Ben:  But then these gatekeepers are actually also not necessarily with the program either, so you're stuck there as well.

 

Sally:  It is hard to know what to do because you have to sell these things because so much of it is aspirational.  In our office, we have a way opposite, a tiny indie that makes boutique indie films and opposite us is Matthew Vaughn's Company that makes Kingsmen, and you just remember it.  They've got a whole branding section.  Just remind them that a lot of that is about then flogging the toys and nobody wants to look normal, do they?  Everyone wants to escape with those films.  It reminds me a bit of when I made this documentary about Down’s syndrome screening and I went to meet Professor George Church at Harvard Medical School who had been doing Sequenced the Genome, the human genome. 

He was busy making a map, the connectome of all the...I don't have the language.  I'm not a scientist.  All the connections in the brain.  I suppose doing the same.  The brain, the connectome, is the brain equivalent of the genome.  He said to me in the future, “we will be able to switch mental states so we might build a switch on an autistic state.  If we've got a lot of data analysis to do quickly or we might want to switch on ADHD state if we want to be a performer, be a stand-up comedian, (there might be different states) and we might be able to switch in and out.  He said to me but would anyone ever want to switch into a Down’s syndrome state.  Of course, I think yes because Ollie does seem to be very happy and I think we've over prioritized intelligence or rational thoughts.

 

Ben:  I'd agree, I was going to come to that.  I was just saying that actually you're one of the humans in this world who've actually made me shed tears but not as you might have thought tears of joy because of your comedy, although maybe it came close but actually tears of empathy or loss while watching your documentary on Down’s and the screening.  I had the impression as we know disability and disability in the family has plenty of challenges, but that people have completely missed the aspect there are plenty of joys, essentially being human and being human is all of these imperfections and all of these types of things as well and that.  I guess people on the outside or even people kind of involved in well-intentioned areas of medicine and things, just don't see that lived experience or just somehow missed that and if you then cut all of this out, you're diminishing humanity which almost seems like too grandiose to sort of say but it kind of the point and that's part of what I got from your documentary work.  I don't know if that's kind of one of the themes you were getting at?

 

Sally:  I’m like you, I’m just someone who thinks too much probably about everything that presents itself in my life.  Since that documentary, apart from thinking, Gosh, everything really is as corrupt as you thought it wasn't, as you thought it couldn't possibly be; so apart from that, I think it feels like we're on the crest of a wave of people beginning to realize that the brain isn't where everything is.  So, there was that book about 10 years ago, the book on the guts.  People made lots of jokes about George Bush's gut brain as opposed to his brain-brain.  I was in the photographer's gallery today and there was a whole book on “Breath” talking about how we need to reconnect with the non-brain bits that make us human.  This reemergence of – everyone seems to be meditating.  People seem to be trying to cut the brain out to give themselves peace and to get breakthroughs and enlightenment.  It seems like I just have to shut the brain off somehow.  

 

I was talking to someone yesterday who's going, he just drives circuits in quite a fast car around his house to shut off the noise in his brain because it's not always helpful and the thing that struck me with the documentary was that all the people who've been in charge of defining, particularly learning disability, are people who have a predisposition towards thinking that intelligence is a priority because that's where they score highly.  So, of course professors of medicine are going to value what they have very highly. But, we can see, sometimes not very clearly, through a bit of a fog that there really is plenty more – there is often a better way. 

 

I find this quite interesting because the one area of learning disability that the establishment have been interested in is where there is obvious and impressive intelligence so autistic savants.  That's very annoying for the autistic community because most of the autistic community are not savants… There's plenty more to say about that.  I was called up on myself because we all have different levels of it.  [Tell me when I’m talking too much by the way because you are equally as interesting as I am]. 

 

I was asked to talk at a conference for a profound and multiple learning disability which was ridiculous because I was being asked to talk at that because I was on the Tele in a sitcom.  I didn't really know anything about it.  Someone said to me (I think they were so nice, i don't think they said it when i was on stage) but they said you argue for people with Down’s syndrome by saying, “we're more alike than different.  Look at our community, we're like you.  We get married like you, we have jobs like you, we have hobbies like you, we like cooking like you, we love our families like you, and we go to school like you; and are lives worth living because of that and they were saying, “Well listen! our children are not like you in that way.  They don't have independence like you.  They don't go to school like you, they don't have jobs like you but yet they are deeply and profoundly loved and they make profound contributions to our family and sometimes it's by the fact that they can't do the thing.  I realized that actually when Ollie goes through life, he feels like he's a great revealer of character.  He brings good and bad behavior out of people. 

 

I don't mean good behavior, I mean kindness, generosity and love, generosity of spirit, self-sacrifice, nobility, beauty).  He brings this out of other people and sometimes people who don't have other places to express that beautiful part of themselves.  So, sometimes it's through what he can't do that he builds community around himself and creates beauty.  I just struggle with trying to explain that to people who aren't in our world.  It sounds like because they just seem to believe that we all have Stockholm syndrome, that our children have us imprisoned and we’ve fallen in love.  Maybe they're right.  Maybe that is what's happened, but the reality is that that is how it appears to me.

 

Ben:  That makes me think of two things; one is a recent film of the book, The Reason I Jump.  Because I think there may be a slight glimpse to some others about this because this is part of the community which is still quite different to those who are not because they are not like you.  The other thing I thought I raised in my head was also maybe faith because I know you have faith.  I unfortunately don't have faith and I really like it but a lot of faith-based people or communities I meet, instinctively seem to understand this easier and reveal those good qualities of being human.  I think there is something.  The two points you said – know this other that it's not all about the brain, that could be whatever you want to call it, spiritual, being human or something that quality of other and that acceptance that you're going to have stuff which is really bad but that's also part of being human and actually to not have that somehow makes you less human and that type of thing as well.  But, I do think, there is this thing, it's okay not being like others as well but you have this thing; we are shared in love and we are shared in grief.  We're shared in all of these other things which actually makes us all already human.

 

Sally:  I think there's something that is common to all humans that religions sometimes get right and sometimes get wrong, but I feel like there's a truth that everyone sort of recognizes deep down whether or not you believe.  There's a lot of doubt in faith and there's a lot of faith in doubt, (I think).  I dig where there's an X and it seems to come up with the goods sometimes, but the church is just endlessly disappointing.

 

Ben:  Yes, I was watching a documentary a few weeks ago, there's a convent of nuns actually really near where I live in North Kensington up the top of Ladbroke Grove.

 

Sally:  Yes, The Carmelite Nuns!  I really want to go there. 

 

Ben:  You don’t go away, they said the person who managed to film a documentary, I think wrote them letters every month for five years in order to go because they don't want their practice disturbed.  They don't speak very much of the day and part of their practice is they are, they're preying on humanity's behalf.  So, you can ring them up and they will do prayers for you.  

 

Sally:  This is what I've started doing, this is my practice now.  So, I pray for other people.

 

Ben:  So, will you be silent for most of the day?

 

Sally:  No, obviously not silence, but I’m trying to do contemplative centering prayer without words.  I find this completely fascinating, and so many people in so many faiths are doing exactly that even if you're doing an insight timer.

 

Ben:  Exactly, and sometimes people do it by chance which is weirdly the same thing because you're just repeating the same phrase, not many words.

 

Sally:  And that stimulates your vagus nerve which makes you feel better.  So, I've got a really good friend.  I was at New College Oxford and I had a friend there Lucy, who's a zoologist who studied under Dawkins.  We've never talked about faith because it's just embarrassing.

 

Ben:  I feel people should talk about it more.  I think maybe this is one thing which could start happen a little bit more because people seem almost embarrassed to talk about it but there are obviously so many different kinds and a lot of people are involved in it so it seems to me odd that when we don't, in other sense in good faith talking about it; obviously you have extremes which won't work but most people I don't think are there.

 

Sally:  Yes, I think we have to get over our uncertainty aversion and there aren't words.  I think that's the thing we feel uncomfortable in areas where there aren't words. 

Ben:  So you are saying your friend under Dawkins probably has a very different...

 

Sally:  She has become much less certain, so we've both become much less certain.  I think that's really good, so we're now in this no-man's land and beginning to talk about this stuff.  So, she got cancer and being a scientist, went about what their conditions are, who gets better, who's most likely to get better and one of the five characteristics was people with a faith.  She was like, “I better get myself a faith.

 

Ben:  That's how I feel a bit.

 

Sally:  So, she started investigating why it might, what kinds might, what the practices were and she's got into chanting.  She does meditation every day, open sea swimming.  There was a thing on Instagram, this guy “The Portable Priest” who has been going out with an accordion during lockdown doing the divine office through Portobello and he put a thing on Instagram.  The thing is to prove that God doesn't exist.  Atheists have to go to every corner of the universe and prove He's not there, whereas we just need to prove the resurrection is true and then we've won.  It was something like that and it made me furious.  I stood on it.  I want to just leave it, leave goodness sake, it doesn't matter and then three days later, I put a thing.  I wrote underneath going (Ironically though) approaching every corner of the universe with a curious and open mind is an activity that's much more likely to an earth God than sitting on your sofa with your arms folded going, “look I’ve won and I’m better than you.  Because that's the sort of open hearted search.  It's the position of welcome that is really where you reference a good about religion in its practices of religion.  They sort of break down this dualistic right-wrong, black-white, this categorization is an identity politics.  It takes down the walls and in trying to build those communities, that takes down the walls between people.  Forgiveness would be a really obvious example of how you are taking down a wall.  I think that's good but there's plenty of ways of doing that without religion and one of the ways is unfortunately suffering or becoming dependent.  I think that is what suddenly being presented with a child with a disability does.

 

Ben:  And I guess to reverse, I was thinking comedy is strangely one of the ways which can sometimes do it, sometimes don’t as well.  I just was going to, while I remember the reflection on the Nun in this documentary, they spoke to the Abbess who leads the convent.  I don't know quite hierarchical, but anyway the conclusion was, she essentially had lost her faith or had lost (I’m not sure I should be doing this anymore) but she is still dead for an extraordinary long amount of time, something like several years, and she continued to go through this while she was essentially having this.  I'm not sure about it anymore but actually continuing with this kind of practice of faith as she had sort of lost faith. She went to Cambridge and she graduated from Cambridge (I think in philosophy or something like this) and then heard about these nuns and basically camped on their door.  Father didn't let her go there before she'd gone to university, decided this was going to be it and then dedicated her life to this practice.  But, anyway, I just thought it's incredible what faith, what you can do from it.  The flip side to what you said is this, how to say it without it sounding wrong, the suffering part and I think this is what you alluded to as well.  The suffering part is really revealing in a way which you kind of go, well you're not glorifying suffering and you're not saying anything, oh this is a good thing.  But if it has come into your life and you can embrace it, and really hate this idea of leaning in, but it's the idea that if it doesn't break you somehow and you take it in as a realization, it does open up so many things which would have been close to you and that's certainly been in my case.  This whole route of area of life and humanity which I wouldn't have contemplated, had In't had to go down a route of dealing with disability in the community and things not being how they would come out.  I don't know what you're thinking about that kind of suffering angle.

 

Sally:  I don't know, I have read a thing saying there's two routes to god, two fast tracks.  One is suffering and one is love and I think we get both.  So, we get extra love.  There is something about reaching the end of your own ability, isn't that?  That wall, where you hit the wall and you go, “I actually can't do it and when you reach that point, that's when you have to rely on friends and family and I think for people like you and I who are super privileged.

 

Ben:  Very well resourced.


Sally:  Yes, very well resourced and very well educated.  We have lots and lots of opportunities.

It is a real privilege to have our lives amplified by being able to see things from the other side of the river.  I feel that I have connections with so many more people than I would have had.  I give and receive empathy with many more people and I’m also much more courageous (I think).  Because I have more limits.  It's a bit like things travel faster down a narrower tube, so your life gets narrower but things happen with more force or something. 

 

Ben:  Because of the limits, but it is noted no one don't want to give anyone’s impression, we're like trivializing the challenges or the challenges it gives sort of everyone and everything within that.

 

Sally:  I think the day after a hangover, you feel really clean.  Maybe you don't know.  I don't really drink.  You know the thing, if you have ever heard of a hangover, once it's passed, you feel sort of fresh.  You feel born.

 

Ben:  Weirdly detoxed!

 

Sally:  Weirdly detox and it's a bit the same with these terrible struggles. I remember Ollie trying to get his shoes on to go to school and he didn't want to go to school and just being kicked again and again and again in the face.

 

Ben:  We've had that with sleep.  I don't know what your relationship to sleep was but there was a period of that we were having a particularly troublesome period as well, but where you go through this end and when you get like, “Well, I haven't slept for 24 hours.  It’s kind of somehow going through the other side because otherwise maybe this is why a lot of families also splinter as well because if you can't somehow get to that other side, they just haven't gone to sleep for whatever reasons and you've somehow got to get to the other side.

 

Sally:  Yeah.  Sleep, that's just t torture.  There's no upside from that.  I'll tell you what's weird, like having come out the other end of the sleep.  I now find that being over tired is like a comfort blanket.  You know that state where you do feel drunk and it just feels cozy now, feels like I’ve got a little sort of shed in my head and that's because there were five six years where the kids were really cute but I wasn't getting any sleep.  So, I wasn't really leaving the house.  Now it feels like going back to a family holiday or something.  Do you feel weirdly creative then as well or you may not be but you kind of feel like “Oh i kind of could do anything in this state but you probably can't but...

 

Sally:  Yes, probably, something like that.  The main thing to me is that it feels like being under one of those weighted blankets.  My hands are full of weighted blankets, aren't you?

 

Ben:  No, we didn't really.  We've got three yoga balls instead.  The weighted blanket didn't really work for us.  We haven't really done a holiday significantly over the last 12 years but we tried a little bit and we've had to bring the yoga ball with us.  We forgot a few weeks ago and we ended up having to rely on Amazon to deliver one because it wasn't going well without one.  We managed to bring some other things such as a sleeping bag, this sleeping bag which he slept in forever, a particular kind of juice bottle and a lot of other particular kinds of things but we somehow managed.  We remembered to bring the pump because you can't blow them up otherwise but we'd actually manage to forget the ball but yes…

 

Sally:  I feel for you…I feel for you.  Yes, we have those things.  Ollie is doing this thing at the moment where he just decides to leave.


Ben:  Out of the house or just out of the room?


Sally:  Out of the house.


Ben:  Yeah, we haven't had that yet, although we could.


Sally:  He is off the age where we had a thing where they let him go from a sports camp because he's 16 and he might have done travel training and he might be getting home alone and then of course he went looking after….

 

Ben:  And why wouldn't we believe him because he told us?

 

Sally:  Yes, and he went looking for his girlfriend's house in Twickenham and he didn't know where she lived, didn't have an address or anything.  So, we're having a few conversations with the police, like how you are going to make sure it doesn't happen again.  I just said this time, I think it is going to happen again.  I think I can almost guarantee it's going to happen again and there's nothing we can really do about it but we can minimize the danger when it happens.

 

[_44:04_]

Ben:  Another family, I don't know how I feel about this because he hasn't done this without but they're using these Apple AirTags but just with a key or a thing that they take with them and then you can track them through the AirTag.

 

Sally:  Yes, we had those and he took them off the shoes.  And he rips all his clothes up, that's the thing I can't really cope with.  I can cope with it.  I am coping with it but I just have this.  When part of you has given up and died.  The part of me that's given up and died is like that, I’m never going to have a pension, I’m going to be working forever because Ollie rips up pants and he's in men's pants and he rip.  He'll wear them once and then rip them up.  I don't know where to get really cheap pants.  Marks & Spencers 21 crates for 3.

 

Ben:  Yes, you need a supply line to the Bangladesh factory or something.

 

Sally:  That's still 7 pounds per pair that's, 7 pounds of pants a day and then there's usually a T-shirt and jumper and pair of trousers every week as well, coats.

Ben:  Wow, every week, that's tough though.

 

Sally:  Every week, it really adds up.  I can't buy him clothes because that thing if you're not going to have any clothes, you're going to have clothes because I’m going to have to clothe you.

 

Ben:  Well, there is this bit, isn't there? I've always described it and I guess this is a little bit like the social model.  You want to try make the world come as close to you as possible but there are certain things like running around naked all the time, it just isn't quite possible if you want to go out and we have this opposite problem where my one, if at all possible, would like to never wear trousers and he's now 12.  When you're 4, 5, 6, 7, it is kind of cute when you get away from this that, as you continue to get older…

 

Sally:  Is he wearing shorts?

 

Ben:  No, nothing.  He would just put half naked, is his preference and this doesn’t bother him.  He's just like, why it's kind of hot and uncomfortable, why would I bother, so we have to work very hard to keep them on and then we have the wash issues as opposed to actually tearing them up.  We haven’t thought about it though there are a lot of broken things and there's still some broken things going on particularly, broken technology is not going to be good for the budget.

 

Sally:  No, heartbreaking.  It is really hard to know what to do, isn't it?  These spiritual practices like even the non-religious ones are about surrendering, aren't they?  That's what mindfulness is supposed to be, is it mindfulness?  Yes mindfulness, I’m sitting here and my thought will come along and I just let it go.  I welcome it and let it go and I feel like we're doing that all the time.  I have to laugh with a friend of mine, who has a very severely disabled child.  She says, we're never going to buy those mindful coloring books, are we?  Because we're being forced to do mindfulness things all the time.  Like we can't go fast, we literally can't go fast.  Leaving the house, there's a massive checklist of things.

 

Ben:  People don't understand, it can take an hour just to get out and you kind of feel let's just give up.  We're only going to do that.  I guess this is sort of mindfulness but what he's taught me is quite often to live in the moment though as well because they do and it irritates me because I think A-Plus parenting for an hour and then a moth will come along.  He hates moths and it was like, “Oh that was worth nothing because in a moment, the moth is the worst thing in the world, so of course you're going to scream out. 

 

Sally:  Yes, because if you don't live in the moment and if you don't sort of take it in, the story you tell yourself about what's happening can be much too bleak because of these big awful events.  So, Ollie can be good 99% of a day and then that 1% just will be so bad that you remember the day as being the day when the MacBook was put in the bath.  Whereas actually he was really good up to that point.  I remember, he went to a special needs school which is a disaster because he got expelled from the mainstream, that's another conversation for another day.  He just hated it, really hated it and smashed up the classroom and having gone in much more able, too able for the school, came out with the most support of anyone that most difficult child. 

You've got to do what your teachers say Ollie, got to do what they say and he said, I do sometimes.  I said, that’s true you do sometimes what they say, but you do sometimes expose yourself to the Muslim girls in your class and that's really problematic.

 

Ben:  So many things with nowhere we felt secondary, so he does most of his time.  Technically, I have to say educated otherwise not at something or whatever EOTS but is essentially a kind of home education for four-fifths of this week partly because of not being able to find anywhere which we thought would fit in with that.

 

Sally:  It's difficult but also as I just said that I felt really guilty as though I shouldn't have said that because that's not for him to say and I think we are in this difficult situation with advocacy where a lot of people with disabilities or disabled people.  They prefer different groups to be called different things and regard their parents as the enemy.  They really suffered under either our neglect or our love or our complaining because of how hard and difficult to hear.  I mean, someone I met quite earlier, an absolutely amazing wonderful person.  Her daughter is 20 years older than Ollie.

When Lizzie was born, written a book about her feelings, about the diagnosis and the early years to help other parents.  Never in a million years imagining that Lizzie would grow up to be able to read it.  She did and I think that was tough. 

 

Ben:  It was definitely seen in the autistic community as well with a lot #actuallyautistic and obviously in that community, they can kind of advocate a lot for themselves and there is a kind of a big gap of understanding between what they have said and maybe their parents in the community, so that's definitely a thing.  But then there's those who can't advocate so well for themselves and I do think many parents just do the best that they can and when this is always pretty tough.  

 

I was hearing the other day that you managed to get all of your children washing up at the same time, was this just one hour, one week or did you manage because I thought, Oh my God, that is a star parenting.

 

Sally:  Yes, that something that was brought to our family by another special needs parent called Colette Lloyd, who is a majestic human being.  She has got four kids and she and her husband David instituted Washing Up Club and we went on holiday with them.  We had a rotor and we had a Washing Up Club.  They have gone in and out.  Actually, I am sensing that they don’t but actually they do.  They stack the dishwasher.  They do clean the table and stack the dishwasher now, but when they were little, it was that sort of cute thing of standing on a chair and the sink full of bubbles, putting an apron on them and making a massive mess and then running another sink and putting one of them in as a bath.  Yes, I have had them doing washing up and it is quite a good way to manage boys like to talk when they're not looking at you.  So, they prefer to be in the car or facing away or walking away.

 

Ben:  Also, maybe doing something else, sort of intuitive.

 

Sally:  It's much less confronting, isn't it to be.

 

Ben:  I'm lucky if they'll be off their screens for more than like an hour at that time but maybe that's it because they can sometimes talk to you while on screen so maybe they just do need something else, I don't think Washing Up Club would go very far in my family.  I feel like trying it.

 

Sally:  They didn’t enjoy it.  I realized that you have to find ways of getting by, don't you?  You have to find ways of coping and ways of doing all the unpleasant things and if you do all the unpleasant things, you get a bit broken.  So, I sneak stuff into the daily routine.  After a while they become blind to it because that's part of the daily routine that's what happens.  Do you know what I mean?

 

Ben: Yes, it seems pretty smart, a star parenting tip…

 

Sally:  I feel like I’m interacting with parenting like a plow interacts with fields.  My realization this week has been that the siblings think that Ollie's two siblings are just really angry with him. They're just really angry with the way he controls things.

 Ben:  Just takes all the time.

 

Sally:  Immovable objects; and he's so stubborn.  It just takes such effort and they're so crossed.  When they scream, “I hate him”, I go, “No you don't, no you don't" and realizing that I need to say that's understandable.

 

Ben:  I think we have said that you can hate someone but love someone as well.

 

Sally:  I met a sibling.  Well, actually one of Tom's friend's parents has an autistic brother and there were lots and lots of challenging behavior when she was growing up.  She said to me, I feel like my parents trained me to be neat because I wasn't allowed to be difficult.  My needs had to come second because obviously if Ollie runs away, we have to go find him.  I can't carry on building Darth Vader, Lego Castle.  I have to go find Ollie and that would take me three hours.  Then we talk to the police and then we have to do a police report and we have to do a social worker report.  Social workers have to come see you.  So yes, I just realized that I’ve not been allowing them to express negative emotions.  I think you need to stay on top of things, you need to be looking on the right side.  You need to stay positive because otherwise you go under.

 

Ben:  But you've realized it now, so there is also…


Sally:  Yes, I’m so pathetic when I have a new realization.  I said it straight away.  You may be feeling very negatively and that's absolutely fine. You're allowed to have those feelings and you must just do what you need to do. I'm so see-through.



Ben:  We have that with the other one like that you can't.  You still have a film which has got some sort of feel-good message which they see through in five seconds.  It's like, “well we're not needing to or bothering to watch that movie or that message.  That reminds me of two other things I was going to touch on.  One was parable (which I’m lucky I think i came too late) because I really don't like it about the story about Holland and Holland and Italy, which comes through in our community because there seems to be so much wrong with it but I’d be better if there's a better parable but it's actually how a lot of people outside of the community come and see this idea.  

I can't quite remember but isn't it it's like, you want to go to Italy and you end up in Holland.  Therefore, showing you don't know anything about Italy or Holland but actually Holland turns out to be okay which just seems that this is kind of wrong on all fronts but...

 

[_58:45_]

Sally:  The reason I hate it, I just associate it with diagnosis.  We got given it four or five times when Ollie was diagnosed, and your whole life, you wanted to go to Italy.  You've planned what you'll eat, what you'll wear.  You're looking forward to seeing the Colosseum and the Statue of David, the Leaning Tower of Pisa, eating pizza on a Neapolitan street.  Maybe even taking a boat trip to Capri and then you're sitting on the runway and the pilots say, we've been diverted to Holland.  You're going, “In Holland? Do you say Holland?  I don't want to go to Holland.  But unfortunately, you have to go to Holland for life.  You will never be allowed to visit Italy.  Oh no, this dream of yours is dead.  You are imprisoned in Holland for the rest of your natural life.  Since you're forced to be in Holland, you realize there are actually some things recommended and just they don't then go on to say the legal marijuana and the sex part, tulips and…

 

Ben:  They can make pizza there too, but…

Sally:  Yes, they can make pizza there too, exactly.  It's quite flat and you might enjoy cycling.  So, the point of it is that things aren't what you’ve expected but they're still nice, they're a bit different but they're still nice.  You're still on holiday…for life.  Yes, I do hate that but I think it's mainly because I hate anything trite and once that is fit for all, it may get better at the point of diagnosis.

 

[_60:41_]

Ben:  There must be that they want to change the whole population but it must be an American writer.  I guess the other point on this is – well I wonder I've heard you comment on him as well so this is this consequentialist, utilitarian philosopher, Peter Singer.  I kind of wonder what he'd make of this.  He doesn't go down very well in the disability community but is completely loved in the animal rights community and I think what we've discussed seems to me to be the real case, and I think he's accepted that because they've got this idea of utilitarian suffering and therefore eradicating that.  It is kind of good as sort of his position but doesn't actually realize the worth of people or the worth of this experience which could be anything that they create, so you end up with this very reductionist kind of viewpoint.  I haven't quite managed to square it with how well he views animals but obviously I guess it's some sort of utilitarian suffering thing, but it does seem to be….?

 

Sally:  I think he's focused on eroding the boundaries between humans and animals.  He's a vegan and they all seem to be vegans which is interesting.  So, I got invited to a philosopher's dinner at Corpus Christi, with not Peter Singer, but Julian Savulescu and the other one at Oxford.  Anyway, big transhumanists both and they seemed to be just more focused on eroding, defining the difference between a very intelligent animal and a human being.  He doesn't seem to have any self-knowledge or desire to survive.  I suppose they're chipping away at this sense that humans might have a soul when animals might not.  That is not all quite interesting but unfortunately to elevate the gorilla or elevate the cow, they're stamping on people with profound multiple learning disabilities.  So, they've got this profound multiple disability. They sense this thing about personhood, so who qualifies as being a person and who qualifies who gets to live, what are the objectives of life.  So, for somebody with a faith, it's quite interesting for me to look at my own definition.  

 

So, I had a long conversation with John Harris at Manchester University, Professor of Ethics.  He was basically saying, (it seemed to me I may have misunderstood him) but he seemed to be saying that “An optimum life would be one that was long and had many different options.  So, then that was interesting because that to me wasn't the definition at all of a good life.  I mean if I think of people have been important for humanity, people with disabilities who've had short and painful lives and really contributed enormously to humanity, so then there's a difference between the life that I might want for myself and the life that's good for other people which is where we come back to this negative capability forging bonds.  Like where there's a lack, something rushes in and it forms links between people.  I don't know what I’m talking about, Benjamin, but this is what I think about when I’m in the shower.

So, where you're vulnerable, like as an actor if you're vulnerable if people rush towards you and where you have need, people often feel for you, sometimes help you and you create links between people.  So, if we move away from individualism and start thinking about people as coherent groups as cohering, then (I don't know) it's different, isn't it?

 

Ben:  Yes, and I think also I’m a little bit worried about that view and sense that if you just go a little bit back in history, not even that far – if you kind of say either this difference, you would have said, “well women are lesser people, minorities are lesser people, slaves are lesser people and you take this consequentialist view, you don't end up with very much.  But yes, there is this thing about…

 

Sally:  It's really-really interesting, so when I started making my Down’s syndrome documentary, I’m a child of the 70s because I think I’m much older than you and I just assumed that everyone thought that everyone was equal.  I thought surely that's our baseline starting position.  I was astonished to discover it just really wasn't.  They had absolutely no qualms about saying that people just were not equal.  That was pretty fiction.

 

It's kind of amazing.  The Babylonian King, whenever 2000 years ago, put that on his stone law “A person's female slave is worth less than a male slave is worth less than a middle-class person or whatever all the way up to the elite” and classified them in terms of money and compensation.  That's the whole point of the last sort of fifty hundred years as we've changed our view on that and that we view humans as equal but actually like you said in practice, we may not be as close to that as some of us might think.

 

Sally:  No, I think we're getting further away from it.  I think it's partly to do with the fact that (I don't have the better terms) but the fact that we are increasingly becoming units of data.  So, we're measuring everything.  That's the way our politics operates and so human beings are a dataset, so the decisions are made.  For the first time, it seems in British history, it is beneficial for us all to aim towards the middle because if you're an outlier in any area – I'm worried about the advent of personalized medicine so all these COVID tests.  I'm an imaginative person, so maybe they've made it impossible for this to happen but I bet they haven't.  They've been collecting our DNA in vast quantities, so the hundred thousand genome project very quickly went up to the million genome projects coming up Great Ormond Street.  So, they could be collecting all our DNA. 

 

GCHQ is in charge of protecting that data because that's how important it is.  If the government can sequence the British genome, they can know which diseases we're most likely to develop and they can invest, the utilitarian, they can do the most good for the most people but that would mean that if you got a rare cancer, you are going to be underserved.  Anything unusual, you're going to be underserved.  So, it's only the people and you can already see this is happening a bit with education that it's aiming at the middle.   If you've got special needs or if you're gifted, it doesn't work for you.  The education system just simply doesn't work for you.

Ben:  I'm going to think about that one, that is kind of quite terrifying.

 

Sally:  Listen, I don't know what I’m talking about. If we talk to very clever listeners and come back with an answer, I’m just a sitcom actress but this is how it seems to me.  This is my understanding.

 

Ben:  I have two thoughts. One is that I’d hope they would look at the valuable part of where this might be and actually if I look, I think actually we have got a lot of areas for rare diseases and things come through.  If anything, the problem is we don't do very well for poor country diseases because there's no money in it; that's kind of one observation.  Although there probably is something in that data because it can be used for good or for ill.

 

Sally:  But they haven't sequenced the genome yet, have they?  They haven't done it yet.  They have done it in Iceland, so here they haven't done it yet.

 

Ben:  We've got the human genome overall but we don't have it to match population data like they do in Iceland, that’s true.

Sally:  Yes, so what I can do is I can get my genome sequence and I can then get a readout for a thousand dollars, I can.

 

Ben:  And they can say you've got a 32% chance of being outside or something like that.

 

Sally:  And they can tell me what to eat, and they can say yes this is the kind of exercise you should be doing, this is the kind of food you should be eating.  It's a massive market.  The hundreds of billions.  I can't remember what it is.  This is a huge market.

 

Ben:  The other thing it brought to mind was this idea that not everything that counts, can be counted so that there's a load of valuable things which you just can't measure and count, love, poetry, all of this stuff.

 

Sally:  Would you say all the most important things, not be counted.

 

Ben:  So, I think I guess all we are measuring...

 

Sally:  Well, I wonder what's happening. I can see that because it can’t be measured, because the contribution can't be measured in pounds, you could argue that it could be and I think what we need to do is find some kind of equation or algorithm that will demonstrate that it contributes in pounds.  The people are cutting arts courses and cutting arts education. 

There's lots of examples but I feel like we really don't value what the arts contribute because it's very hard to measure what the arts contribute and what they contribute is things like empathy.

 

Ben:  Yes, these things are really hard to measure, but very important.  Great! Well, maybe wrapping up with a last couple of questions.  We had one who came through on Twitter which was, “I think we need to do with whether comedy and activism can go together and I guess maybe it's hinting on fact that some comedies are quite political or can be but a lot of comedy just doesn't need to be.  In fact some comedians who will say, “it's only comedy if you're not making a political point” and some people who only want to make their comedy to be saying some messaging and something else and obviously you got an advocacy, activism, lying to your work but actually a lot of your comedy is just for laughs, is that something which you feel have to balance or is it naturally comes out depending on the work you're doing?

 

Sally:  Well, I think quite a lot, Matt Fraser.  He's a great actor with a visible disability.  He says that the more activism you do, the less acting you get to do.  So, you have to be very careful.  I feel that I need to be careful to be mainly a comedian actor because I lose my value as an activist, if I’m not that.  So, there's an element.  If you are only making points, it's like save your art, if you're only making sort of politically correct disability community friendly jokes, they stop being stopped and they stop being truthful because you sort of have to be talking out of uncertainty for them to be any good, for you to be discovering something new. 

 

So, I think comedy is always after different kinds of truths.  Is that right?  No comedy's not always about anything, you can't say.  Sometimes comedy is just literally like relief.  There are some comedians who focus on speaking while holding a mirror up to society and there's others who just want to give you a break.  Both are fine and then there's people who do both like Milton Jones for example.  He does a lot of jokes that just make you laugh because they are stupid and then he does do the old political thing or he'll say something.  He does say things with an edge like this is a very-very old joke of his.  He did one about those cultures where they believe that taking photographs of you steals your soul, that's mad, isn't it?  Because that would mean that people who have photographed a lot like supermodels would have really dull and vacant personalities. 

 

So, just turn things around. So, comedy is really good for looking at things from a different angle and it can be for a purpose, so pure comedy can be for a purpose or not, both are fine.  I have found it very useful to be able to make jokes in very dry presentations, so it was very useful.  So, I gave a speech to the Royal College of Obstetricians and Gynecologists.  There's 4000 of them who are delivering prenatal care and delivering the tests.  It was really useful to be able to make a lot of jokes because if you just stand up there and just harangue, doing a very bad joke in our community, you will be able to make a shit sandwich.   

 

[_77:08_]

Ben:  Haranguing them straight up was not going to have as much impact.

 

Sally:  Rather than saying you were doing a great job which they hadn't really been doing, just do a joke.  It is really-really useful as everyone knows comedy is a very useful rhetorical tool and is very useful for reducing fear.  Sweetening pills and so it's a very useful tool for advocacy but I don't particularly want to do a sitcom making those points.  I want to keep the comedy pure.

Ben:  It makes a lot of sense.  Last question would be, do you have any advice to maybe young people or young creatives or perhaps advice to expectant mothers or some thoughts along those lines.

 

Sally:  Maybe it's the same thing.  Very different things, maybe that is exactly the same thing, maybe that would be more healthy for both to think about it that way. The thing I say to creatives is art makes art so just do it and if you don't do it, you become a critic and you start comparing yourself to other people.  There's something about making the stuff that keeps you humble and keeps you creative.  So even if you're making terrible stuff, you're learning and you're expressing yourself and you're finding out who you are and with writings, nothing's ever wasted.  

So, art makes art and I find I can write quite quickly now partly because I'm quite old but also because I’ve written so many unsuccessful things that I have cupboards and cupboards full of characters and jokes that might fit this situation like, “Oh, I might have a thing in back here.  Oh, yes this person works quite well. 

 

So, it's like sketchbooks of people and conversations and things like that.  So, yeah just make stuff.  You want to make films, make them on your phone.  If you want to make music, just practice and there's something called the Artist's Way that I think is really good.  It's a book, it's a course.  You can do it on your own and there's two central practices, I do about half the time, writing pages in the morning and things like that. 

 

Then expectant mothers, people expecting babies, you are hoping to go to Italy.  No, don't be afraid.  It's going to be fine and you're going to have the most amazing adventure.  The people run marathons, people do IronMan and people do Tough Mudder because there's something about a kick in doing the hard stuff.  So, it’s going to be loads of funny stuff but there is also a kick in doing the reps and becoming a special needs parent.

 

So, to an expectant mother, apart from saying you're going to Holland, it's going to be amazing.  You're going to get completely off your head and go on a canal boat by tulips.  I would say don't be afraid.  Someone said to me actually that the Special Needs Club is one that nobody wants to join but that once you do, you realize that all the best people in the world are in it with you.  It's definitely been true for me that I have met the most incredible people; the most inspiring and hilarious women who don't sweat the small stuff.  I haven't met so many dads actually but I think that's good. 

I did notice when I did the documentary that the mums were out batting for the cause on Facebook and the dads were brilliant on Twitter.  I think the dads just hang out in different places and do slightly different things.  And it's not just the parents, I have got some proper friends with Down’s syndrome and with autism now.  The other thing I’ve realized is that just now there's a whole rash of people on the comedy circuit who are getting diagnosed with ADHD.  So, there's a lot more people.

 

Ben:  Yes, and actually some with autism as well.  Hannah Gadsby. A very great advocate and really insightful.

 

Sally:  I think lots of the people we thought that disability was very different and actually it turns out we've been walking among you the whole time.  Your granny, your auntie, that uncle that had five pairs of glasses and kept losing them, that very funny cousin; we've probably all got diagnoses.  That's why utilitarianism really falls down because there is no meaning, there is no person who is exactly average.  We're all somewhere on some spectrum, aren't we? 

 

This is Ollie.

 

Ben:  Hello, really good to meet you. 

So, we're going to be finishing up. Would you like to say anything?

Sally:  We've been talking about Down’s syndrome and having a disability.  How is that for you?

Ollie:  It's been good.

Sally:  What's the best bit about having Down’s syndrome?

Ollie:  You have loads of friends.

Sally:  And what's the worst bit?

Ollie:  I don’t know.

Sally:  Did you have a good time?

Ollie:  Yes.

Really thank you Sally, thank you Ollie. That has been a really amazing chat.  Thank you so much.

In Podcast, Life, Writing Tags Sally Phillips, Podcast, Disability, Comedy, Writing
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