Still from Kyla Harris & Leah Clements video conversation (2021). Image Description: A screenshot of two people in conversation over zoom. Both are smiling.

HOLDING SPACE ACROSS CRIP TIME: Kyla Harris & Leah Clements

HOLDING SPACE ACROSS CRIP TIME is a series of interviews between Leah Clements and other artists, curators and art workers, for whom navigating disability and intersectional struggles within an art context is an integral part of our practice. These conversations explore each person’s work, alongside a common thread of holding space for one another across ‘crip time.’ Asking the question, ‘How do we hold space for one another through crip time?’ involves enacting relationships within a flexible and responsive timeframe.

This three-part series features conversations with Rebekah Ubuntu, Taraneh Fazeli and K MacBride, and Kyla Harris.

Filmmaker, artist, writer and activist, Kyla Harris speaks with Leah Clements about the power of representation in relation to disability, making work accessible, the importance of disabled/crip community, and her recent reality-tv-style film made in collaboration with Lou Macnamara.

This interview comprises a video and a transcript. The video is captioned and has BSL interpretation. This conversation took place across Spring 2021.

Transcript

Leah Clements

Thank you for speaking with me for this series! It’s a real pleasure. Let’s start off by doing some visual descriptions of ourselves. So I’ll just go first: I’m Leah, I am a white woman in her early 30s with what looks like very dark hair – I used to be blonde but it’s been a long winter – straight, wavyish long hair. Wearing a grey jumper, and some plants behind me with a slightly bluish light, and some gold jewellery.

Kyla Harris

Fabulous. Thanks so much for having me here Leah and asking me to do this, I’m really excited, so the pleasure is all mine!

Well, I’m Kyla, and I am a woman of colour in my 30s. I am using a power chair that I call Edna, and I am in my living room with loads of paintings and plants. And I am wearing a dusty pink dress, with some gold and pearl earrings.

Leah Clements

So I’m just going to give a little introduction, first of all, just to give a bit of background to our relationship. So we recently met online, through what’s kind of the internet-connecting tendrils of art and disability online, and we’ve been having a back-and-forth since then about disability in the arts, sharing bits of our experiences, and I think trying to work through some questions together as well. And to give a brief introduction to you and your practice Kyla: Kyla is a visual artist, writer, and activist, who explores the perspective of ‘the Other’. I’m doing that in quotation marks as her work subverts relationships with the body, capitalism, and normativity. And we’re going to talk about a number of things, but one big point of reference here will be Kyla’s recent film ‘It’s Personal’, made in collaboration with Lou Macnamara, which we’ll link to on this page. ‘It’s Personal’ is a reality TV-esque challenge where Lou attempts to learn all of Kyla’s necessary 24 hour care in one week, exploring disability and interdependence, a growing friendship, and what it means to truly care for each other.

So I’m going to start off with a question that I really want to ask you, Kyla about that work in particular, which I think also relates to a lot of the themes we’ve been thinking about together in general. I actually want to quote Rebekah Taussig – am I pronouncing their name correctly? Taussig?

Kyla Harris

Yeah. Taussig/Taussig I think is probably fine.

Leah Clements

Ok. Who wrote a text in response to that piece, so I’ll just quote here something that they wrote in that text:

‘To begin, Kyla wasn’t silhouetted sadly in her wheelchair, isolated in a hospital room, sterilised into a cliché. She wasn’t pushing herself over metaphoric mountains as the people cheered either, held above and apart from the rest of humanity. She was integrated into a messy, playful community of her own making. She was funny. And smart. And ordinary. And she had a specific problem to solve – she needed care during the global pandemic, and she’d decided to train her friend Lou to fulfill the role in a mere seven days.’

I’d like to talk more about this idea of representation that Rebekah brings up, I think it’s why it makes a lot of sense that the film ‘It’s Personal’ is in this reality TV show format. Because there’s a day-to-dayness about it, not a transcendent experience like Rebekah said – not moving mountains or anything. And it’s not that narrative of ‘cure or death’ that’s usually imposed on disability and disabled people in film, and neither are you being used as a narrative device in someone else’s story. Where I think it extends beyond reality TV, though it’s unfortunate that’s the case, is you taking a really direct approach to tackling politics – specifically austerity measures in the UK, and the precariousness and meagreness of provisions for you to have PAs. I was just wondering if you could talk a little bit more about that reality TV element as a stylistic choice?

Kyla Harris

Yeah, well firstly I want to say I enjoyed just hearing you read that, and I feel like you would make a great audiobook narrator! So think of that as a career, just saying.

(both giggle)

Yeah, so Lou and I are massive reality TV fans. We’re kind of huge reality TV fans and that’s something that we really bonded over. Apart from art, as well, or in addition to art. And we wanted to use the reality TV style partially as an homage to our love of reality TV, but also because it’s very accessible. You know, it’s not this kind of like, high-brow art, or film or you know, that I also love, and want to do as well. But I think disability is seen as quite…people are just really afraid, you know? People are so afraid of disability. And talking about it, and having a disability and all of it in the ways that we internalise ableism, and the ways it pervades and is part of the fabric of our society. We wanted to make it really accessible and easy for people to engage with. And I kind of didn’t realise in a way, and now I do in hindsight, that reality TV really does act as a kind of activism. It’s a great platform for activism. Because it is engaging, it’s a format people feel very comfortable and familiar with. There is an everyday pace to it as well. The transitions in reality TV although we see and think of reality TV as cat fights and glamour and excess, I think that there are also these moments of transition where we see people doing everyday things. I also think this also humanises them and makes the people that participate,are collaborators, or you know participants in reality TV, or the people that we’ve gotten to know like Erica Jane from the Real Housewives of Beverly Hills, and the Kardashians, and you know, the echelons of reality TV royalty. I think so many people feel connected to them because we get to experience their everyday lives. And so that’s kind of what we wanted to do: bring that connection, so it breaks down that fear. So it feels like a manageable topic and all of the… I don’t know, planets that orbit around disability, like ableism, capitalism, and fear, felt manageable.

Also, one of the things that I think reality TV does that, say, more formal or Obs Doc, or I’ll say observational documentaries do, is that they allow you to build a connection over time with participants. So Lou and I, ideally we would be living our best BBC Three life, on Netflix, either one, we’re happy with either, just sayin (both laugh). What it does is that kind of, the years of series and the amount of episodes allows you to build and connect with the participants. And that’s something that we’d love to do as well, is that understanding of building a connection, not with me in a sense necessarily, but with myself as a vessel for understanding disability. And Lou as a vessel, as a way into understanding disability as well. And her learning – we call her Ingenue Lou, we have different Lous throughout, we also have Didactic Lou, we have Sad Lou (both laugh). Because she’s not disabled, she kind of acts as a way in for people that don’t have any experience with disability. And also because of her personal experiences – I won’t give any spoiler alerts if people out there haven’t seen it – but she has a connection to care and disability and illness, that has really affected and made her who she is. And made her also very political, about her wanting community care, not being able to rely on family structures, nor should that be necessary to be able to receive care in life. So yeah, that’s kind of why we chose that format.

Leah Clements

Yeah, and I think one of the things I was thinking while you were saying that is a bit about the control you have over making it, because you’re making it, you and Lou collaboratively. You’re in it, you’re the subjects, and you’re the ones that are in control of your own representation, which I think is a really important element to it. And you know, you mentioned the Kardashians and people like that who do have a lot of control over their own narrative in that context, but there’s the other end of reality TV where people are pretty much exploited, and that tends to be along class lines as well as other intersectional marginalisations. I was wondering if you could talk a bit about having control over your own representation?

Kyla Harris

My god I just, I love this question. Because I love talking about what’s behind the scenes and how that translates to being in front of the camera and the end result. And I mean this is just a massive massive topic for me because I spend a lot of my time researching and creating and writing about these subjects, and advocating for disabled people to represent themselves. Reality TV can absolutely be exploitative, and that was also something that we wanted to not continue. You know, we’re interested in ethical filmmaking, and filmmaking on crip time, and all of the ways that we can make it manageable and as I say, as ethical as possible.

What I really loved is that the response we’re getting from the film from the disability community has just been incredible. Like so incredible. It’s just like ah! It really warmed my heart. But I think the reason – a lot of the feedback we’re getting is ‘I’ve never seen anything like this before.’ And it’s true, it’s an unusual style, it is reality TV with a kind of – well, we’ve been told by a fantastic kind of mentor/fan of ours that it’s a documentary with reality TV visual grammar. And that’s kind of our style. And because you know, there isn’t a style like that I’ve ever seen, and I think that’s one reason why people are saying ‘I’ve never seen anything like it before.’ But I think what comes through is that it is a disabled person representing themselves, with agency, with control, with power, with autonomy, and with their best friend who’s supporting them. And that’s true not only of allyship, but of coalition, and I think that’s where filmmaking needs to go. The well known disability slogan ‘Nothing about us without us’ is something that I feel is imperative in filmmaking. And filmmaking that represents disabled people. And I think that disabled people obviously need to be involved behind the camera, and in front of the camera, as well. Because there is a position where I think a lot of disabled people are in front of the camera and potentially exploited. And so I think people are saying it’s refreshing because of those two elements. That it’s very much from me, and someone who supports me, and there’s an equality that I’ve never experienced before. That intense sense of equality that Lou brings. But also because it is this accessible style.

Leah Clements

LC: Yeah, definitely. I mean it’s kind of wild how inaccessible most filmmaking is. You know, the general standard is that people are expected to work twelve hour days for days in a row, which I don’t see being sustainable for an able-bodied person anyway. But as soon as you start working on crip time your costs go up, we really need to be prioritising access to make sure that more disabled filmmakers can be working, and in all elements of film. But it’s kind of wild how inaccessible it is right now.

Kyla Harris

Absolutely.

Leah Clements

And I was thinking of – I don’t know if you know the writer Tom Shakespeare?

Kyla Harris

Yes! Yeah.

Leah Clements

Right, who talks about, if you think of somebody who – I can’t remember the exact quote but, if you think of somebody who is driven everywhere, has somebody else taking control of their finances, prepares meals for them you might be thinking of a disabled person but you could equally be talking about the Royal Family.[1]

(Both laugh)

Kyla Harris

That’s great! Wow.

Leah Clements

Yeah! So, we have this double standard, and I was thinking about that again in the context of, just taking the Kardashians as an example of a very wealthy family who has a lot of power and control over the way that their reality TV show is made and presented, and you could perhaps say the same thing for big Hollywood superstars who are allowed to have a lot of requirements met behind the scenes, and be very particular about what their needs are, versus people who are more marginalised, don’t have that amount of money and control therefore, not being able to have our basic needs met, which mean that we can function and survive.

Kyla Harris

Which is why I love your Access Docs so much, they were just such a game changer. And I think that they’re necessary for everyone.

Leah Clements

Yeah, I’m so glad. I mean that was something that people – a lot of people that me, Alice and Lizzy spoke to were using and we just thought it was the most…it was the biggest change we could make most easily.

Yeah, and then I was kind of thinking a bit about, in this work ‘It’s Personal’ but also beyond that, you wear many hats. And I was thinking about how you manage those things together. I was thinking about things you’ve done like a Q&A with the team that made the film, the wonderful film Crip Camp, and you organised an event called ‘The Other Screen’, where you played a film and you had a Q&A afterwards. So you’re acting as a presenter, a curator, you’re taking care of the other people involved and their access needs as well as managing your own, you’re negotiating between the venue, yourself, the other people involved, whatever other institutions or companies or organisations are involved, and then opening up to a Q&A in any instance you have the possibility of ableism entering the space, and if that happens you might not only be affected by it but you’re also potentially the person that’s got to deal with it. A lot is going on there, and I was just wondering about how you manage giving and taking care in a way that works for everyone, and doesn’t overburden the people who are doing the most to address these issues, which the burden often falls on.

Kyla Harris

Yeah I mean, so much to say again about all of this. I mean sometimes I feel like I wear so many goddamn hats I should be a milner.

(Both laugh)

Just like, screw this! Ugh, listen, you know so well that if we could we’d just be creating. That would be what we want to do. So we’re kind of activists and advocates by default. Which is sad, but necessary. And I feel like what happened with my career trajectory, and what is happening, is that I start going down one route and then it explodes into sixteen others! Because you go ‘Oh my gosh, yes I want to make this event happen. Right. How do we find an accessible venue? Ok, we’ve got an accessible venue. But look at all these other venues that aren’t accessible that we’ve contacted or have treated us really you know, in a shit way.’ Are we allowed to swear?

Leah Clements

Yeah. Sure.

Kyla Harris

Shit. A shit way.

(Leah laughs)

Kyla Harris

And then it goes kind of like ‘Alright, well then we need to get the community involved in changing this, because I can’t do everything by myself. So now I need to negotiate things with the community.’ And it just kind of – the hats start piling up. I guess also, I think being a producer, a content creator, a cultural creator, I don’t know, I don’t really know what to call myself. But what I love doing is making connections with people. To me, that’s what I feel gives me life. Connecting with people, engaging with people that are open and willing to listen. And willing to share. And willing to be themselves and to learn. And I want to do the same, you know. To be myself and to learn. So that’s really what I do. I mean sometimes I feel like on my cv I need to put ‘Actress, Blogger, Café Owner’ (both laugh) You know like: ‘Meugh meugh meugh’.

Leah Clements

Yeah, I’m alway just like, I think ‘Artist’ says it all you know?

Kyla Harris

Yeah but you know it’s also a bit poncey!

(Both laugh)

So, I don’t know – what do you call yourself?

Leah Clements

I usually just say Artist. It depends what the context is, sometimes I need to highlight one thing or another. But I do consider ‘Artist’ to include writing, a bit of curating, or things that are between curating and not and…yeah.

Kyla Harris

But you also do a lot of activism.

Leah Clements

Yeah.

Kyla Harris

And advocacy through your work. So do you feel like the term ‘Artist’ also encompasses that?

Leah Clements

Um, I don’t know…I changed my Instagram little bio thing recently to include ‘Co-creator of Access Docs for Artists’ which is – a lot of people find me that way I think. But I don’t know, I’ve put that there and then I think I deleted it and then put it back, because I just want to be an artist. And like you were saying, we’ve become activists out of necessity, just to be able to make our work possible. I dunno, I’ve never called myself an activist I don’t think, but I don’t know why. I think it just feels like other people are always doing so much more.

Kyla Harris

Oh, I mean!

Leah Clements

It feels like a grand title or something! (laughs)

Kyla Harris

I totally know what you mean, but it is what we’re doing. You know what was really odd, when I put on ‘The Other Screen’ for the first time, maybe two or three years ago now, and someone wrote about it, and in it, when they were describing me they called me an activist, and I was like ‘Really!? What? Little old me?’ kind of thing. And then I was like no, fuck it, that is so much of what I have to do to just be able to create. And then I’ve kind of really embraced that and started actively pursuing things that you know, I’m often asked to do in an unpaid capacity, and being like ‘screw this!’, you know? ‘Pay me! Pay me for this shit! Pay me for my opinion! Pay me for my experience!’ because you know, that’s what should happen!

Leah Clements

Yeah! I think it takes a while to build up those boundaries. I’m definitely still in the process, I definitely still haven’t got it locked down. I’m sure you’re still learning as well, learning as you go.

Kyla Harris

Yeah, I mean I think we’re constantly learning our boundaries in general, and I think that disabled people – I don’t know if you feel this, but for me because I have personal assistants, I feel like my communication skills are kind of, necessarily need to be on fleek all the time.

Leah Clements

Yeah.

Kyla Harris

To really get my autonomy and quality of life. In all of my reviews for my care, I’m advocating for myself, you know? And it’s so difficult going through those experiences every year, having my care reviewed, or PIP, all of these things. What I come away from in those experiences is I am determined, I am extremely communicative, and marginally articulate, and have stamina and fight in me, a lot of the time, and then what happens to people that don’t have all of those ingredients? And that really, that’s what gets me every single year. And so to me, I also feel obligated because I do have those qualities, to try and advocate for people who can’t but want to, or through advocating for myself I feel like I’m advocating for the wider community.

Leah Clements

Oh yeah definitely for sure. And I don’t know about you, but I really try to leave any place I’m in better than when I arrived. I mean there’s a limitation to how much control you actually have over that, and you can drive yourself round the bend trying to take more control than you have, or feeling bad when things don’t work out. That’s difficult.

Kyla Harris

Yeah, oh my god it’s ugh! It’s awful. Actually right now, since December, until now, I’ve been working as an impact campaign producer.

Leah Clements

What’s that?

Kyla Harris

So what that is, is there are – I’ve only seen it in the documentary world, but when a film is made, let’s say Crip Camp, for instance, to try and uplift and create the impact that has happened in the film, there is an entire campaign around that to engage the community and people who haven’t been in the community but have seen the film and want to have the resources to take the issues that are raised further. And it’s similar work to production and producing, but not on set and in post-production as well.

Leah Clements

Yeah, like a parallel programme to it?

Kyla Harris

Yeah, yeah exactly, that wasn’t a really great way to explain it but you got it, exactly. A parallel programme and campaign. So I’m undoing that with just such an incredible filmmaker, who is D/deaf and disabled themselves, Lindsey Dryden, she’s just absolutely fabulous. And it’s such a joy to work with her.

Leah Clements

And is that the toolkit that you’ve made?

Kyla Harris

Yeah, I had quite a small part in writing that, but I’m so proud of that in itself. I helped write A Toolkit for Inclusion and Accessibility Changing the Narrative of Disability in Documentary Film. And that is some of the work that I’ve done, that was just an absolute dream to work on. Because I was working on it with a team that was also in the US, and in terms of advocacy and representation, I think we have so much to learn from disability advocates in the US, and that movement. And I think unfortunately it comes out of having no support, in terms of care, and in terms of medical care, and we have the NHS, and so I think we’re a little bit more relaxed in our advocacy than in the United States. So it was a really fantastic learning experience working on that as well. But this did not drain me, this gave me life, this gave me energy. This gave me another five years of wanting to push on.

Leah Clements

That’s wonderful. And we’ll link to that on the webpage below. Yeah, I mean, I’ve definitely learnt a lot from activists, artists and people in the US. Also, where we’re at owes a lot to people of colour, trans women, Black people of all genders. I don’t want to go through the conversation without acknowledging that.

Kyla Harris

Absolutely. Yes. I completely agree, because there’s just such an incredible community. There’s a fantastic book – I don’t know if you’ve read it? Care Work by Leah Lakshmi Piepzna-Samarasinha?

Leah Clements

Oh, I’ve been meaning to read it for ages – I think Leah Lakshmi has been writing sci-fi as well which I’m very interested in!

Kyla Harris

Yes, they have! I totally want to read their sci-fi. But it’s a game changer. Care Work, that book is just an absolute game changer. And there’s something about it that certainly allowed me to connect with our disabled ancestors. Who you know, were people of colour, and Black people, and were within that family, you know? We’re totally within that family. In fact, as you mentioned before, the Q&A that I did with the co-directors of Crip Camp and Judy Heumann. And we had this kind of pre-interview chat before we started recording, maybe like a 5 or 10-minute chat. And I just thanked Judy, I was just like ‘Thank you so much for all the work you’ve done, and I’m just so in awe’, and everything. And she actually just turned to me and was like ‘That’s ok, we’re family.’

Leah Clements

Awwwwwwww!

Kyla Harris

I know! I was just like ‘Yes we are Judy! Yes!’

Leah Clements

I had that a while ago, it was kind of like the continuation of that, as I had met somebody who had recently, very recently, become disabled – like a week before.

Kyla Harris

Wow.

Leah Clements

And I was the first person that they really spoke to about it. And I was like ‘Welcome to the family!’

Kyla Harris

Aww!

Leah Clements

Because that’s what I would have wanted to hear, do you know what I mean? Not ‘Oh I’m sorry’.

Kyla Harris

Yes!

Leah Clements

I mean obviously I have empathy for the shit that comes with that in all forms, but it’s also like: ‘We’re here! And there’s good stuff here!’

Kyla Harris

Yeah! Well I think a really kind of easy way to explain that transition – because obviously when you acquire a disability, it’s traumatic, there’s a lot of grief, for sure, that comes with being a human and having those experiences. But I always say: imagine if the doctor or whoever it was that gave you the diagnosis said ‘Listen, your life may physically and emotionally be different from what you expected, but it’s going to be amazing.’ What if every doctor said that? What if that was a line that we used? How different would the world be?

Leah Clements

Yeah. Yesss!

(Both laugh)

Kyla Harris

Yeeeesss! And so back to the book Care Work, so you know, the thing about disability is that obviously, it can happen to anyone in the world regardless of race, class, gender, sexuality, disability can happen to anyone and all of us. And so I think that is a family. We need to kind of keep that in mind as well. And you know, I’m a woman of colour, I’m also pansexual, and I’m in a very long-term beautiful relationship with a woman, and that’s all of me. And I bring that to all that I do as well, because I think there’s something we can learn from all of those communities.

It’s been really difficult over the last couple of years having all of these conversations around diversity, and that disabled people are still left out. And that just goes to show how marginalised and oppressed we are as a community. That even in those conversations that we should be right on the same level and on the agenda, just as high on the agenda, we’re not on the agenda at all. And that’s been quite heartbreaking.

Leah Clements

Yeah. Especially because people who are marginalised or oppressed in ways that have been more included in those conversations, a lot of disabled people also have those identity markers too! It’s not one or the other, is it? It’s an intersectional struggle. Yeah, I know what you mean, sometimes it just seems like a step too far for the agenda.

Kyla Harris

Yeah, and it’s really interesting as well. You know, I’m part of the BFI disability advisory group, and we try to come up with ways of engaging the film community to be more inclusive. And the BFI itself has different groups. So they have a race equality group, they have an LGBTQIA+ group, and none of us meet. There’s not a traversing along the BFI diversity groups that I think needs to happen. And I think that’s where I think the future needs to go, we just really need to work together.

Leah Clements

Instead of ticking these individual boxes.

Kyla Harris

Yeah.

Leah Clements

I’m springing this on you, I’ve just thought of this now so you don’t have to answer if it feels like a big question, I was just wondering about – you kind of touched on it when we first started talking – just what you’re thinking about in the future for your filmmaking? I mean, yeah, a big question! (both laugh) You’ve just done this really huge project so don’t answer if you don’t want to think too much about what you’re doing in future, but just – what do you want to do? Do you want to make reality TV for Netflix and BBC?

Kyla Harris

Yes.

Leah Clements

Brilliant.

Kyla Harris

Yes, yes is the simple answer to that, yeah. I feel like to me, getting the response from ‘It’s Personal’ was just so fantastic. To just get messages from strangers all over the world, being like ‘I have a son who’s just been diagnosed and this has given me some kind of hope for the future, and less fear around the idea of care and what he might need.’ I’ve been getting messages like that and it’s just been incredible, to me that’s proof of concept, and that there is just such a thirst. I mean our community – we’re thirsty bitches! (Leah laughs) We want that shit! Give the people what they want is what I say! (Both laugh) So I think yeah, there’s definitely a market for it, and a need, and a necessity, and I’m not just talking about myself but you know like, for authentic, nuanced, intersectional stories about disability.

Leah Clements

Yes, definitely.

Kyla Harris

So yeah, I wanna work with youuuu! I would love to be a part of your future.

Leah Clements

Yes please!

Kyla Harris

And to me what I would love to do is just collaborate. I love collaboration and I just love collaborating with like-minded people, because to me that’s how we build and grow and that’s the best use of our time, I think really, and energy.

Leah Clements

Wonderful, I think that might be a good place to leave it.

Kyla Harris

Yeah.

Leah Clements

Yeah? Unless there’s anything we’ve skipped over or you wanted to say?

Kyla Harris

No, I think that’s it, that’s fantastic. Thank you so much.

Leah Clements

Thank you!

Kyla Harris

It’s been really lovely.

References

It’s Personal | Kyla Harris & Lou Macnamara

https://www.fvu.co.uk/projects/its-personal

The Fluidity of Care | Rebekah Taussig

https://www.fvu.co.uk/read/writing/the-fluidity-of-care

BFI at Home | Crip Camp Q&A with James Lebrecht, Nicole Newnham, and Judy Heumann

https://www.youtube.com/watch?v=U2NPg8DjXf8

A Toolkit for Inclusion & Accessibility: Changing the Narrative of Disability in Documentary Film

https://static1.squarespace.com/static/5dd1c2b5a0f7a568485cbedd/t/602d4708d39c1d1154d0902a/1613581716771/FWD-Doc+Toolkit+small.pdf

 

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