HOLDING SPACE ACROSS CRIP TIME: Leah Clements, Taraneh Fazeli and K MacBride
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.
Here, curator and writer, Taraneh Fazeli and artist, K MacBride speak with Leah Clements about architectures of care, expanding ideas of access, disabled ‘elders’, and how these themes manifest in each of their practices. This conversation took place across Spring 2021.
Taraneh Fazeli and K. MacBride met while on residency at Jan van Eyck Academic (Maastricht, NL) and formed an ongoing supportive dialogue. They are currently working on a book rooted in Fazeli’s curatorial project Sick Time, Sleepy Time, Crip Time: Against Capitalism’s Temporal Bullying, a peripatetic series of exhibitions, public programmes, and community projects addressing the politics of health and care.
Between 2017 and 2020, arts, social services and community-based organisations across Turtle Island/the United States hosted iterations of the project. Artists involved were Navild Acosta and Fannie Sosa, Ava Ansari + Poetic Societies, Fia Backström, Berlin Feminist Healthcare Research Group, Canaries, Jesse Cohen, Danilo Correale, Wayne Curtis, Carolyn Lazard, Jen Liu, Jordan Lord, Zavé Martohardjono, Park McArthur, Sondra Perry, Carrie Schneider, Owólabi Aboyade (Will See), Katya Tepper, Cassie Thornton and Constantina Zavitsanos.
Sick Time, Sleepy Time, Crip Time: Against Capitalism’s Temporal Bullying — a field guide will gather the richness and depth of the long-term curatorial project into a book containing project documentation, primary materials, reflective essays, and different types of creative and practical resources used or generated throughout the project in both institutional spaces and community organizing. The series of “tools” or poetic and adaptable regulatory guides towards better care for various parties will be contextualized by “case studies” detailing the complexity of use.
The book will address the limits of universal ideas of open access in its analysis and by offering practices rooted in partiality, mutability, or identity-based separatism. These practices are rooted in the depth and complexity of doing access with multiple different sets of lived experiences at the center that may not necessarily engage in dominant Western disability discourses.
 ‘Crip’ is a political reclaiming by disability activists of the derogatory label ‘cripple’.
Ok, just to touch base quickly on where I’m at today: I’m pretty good but I have been a little fuzzy-headed, so if I forget what I’m saying mid-sentence, that’s what that is. And I think that’s it from me.
Yeah for me, I already checked in about how the weather is triggering a migraine and I have lots of little RA aches as a result today, so I’m a little fuzzy.
I am in a much less fuzzy place than when we spoke the other day! But that doesn’t guarantee that I won’t forget what I’m saying mid-sentence as well.
I can see it in your eyes K! They seem like you feel a lot better.
So! Shall we ask this first question? Of ourselves? I’ll just read it out:
Can we each speak about how we engage architectures of care (in art and beyond)? This ties into practices of care from our specific positions, which we can get into more detail on afterwards. Would one of you like to respond first?
I was wondering if you would like to go first Leah, since you didn’t get to share on this one the last time we spoke.
Yes, I can go first. For me, a lot of what’s important is where I’ve been and where I’m at now and how I got here. A really large landmark for me and something that I often refer to and people find me through, is having made ‘Access Docs for Artists’, which is this online resource to help people make access docs. We made it primarily for disabled art workers, but it’s an open resource that can be used by other people as well. It came through doing a residency at Wysing Arts Centre, where we were speaking to people who had more experience than us of functioning in the art world as sick/crip/disabled people, and we were just really trying to learn. We were kind of carving out how to function, and what a language might be for us. We were drawing a lot from people in the US, but through the whole process we sort of found our people in the UK.
The way I started engaging more with cripness/sickness/disability in the art world and also the theory behind it and lots of other stuff as well, such as language, was through the text that you wrote, Taraneh: Notes for ‘Sick Time, Sleepy Time, Crip Time: Against Capitalism’s Temporal Bullying’ in conversation with the Canaries. I got in touch with you, and then you put me in touch with Carolyn Lazard, who’s still a good friend, and I spoke to them a few days ago. My orientation originally was so US-centric, because everyone I knew was in America. I took a look around me and started trying to locate people in the UK, but I didn’t find it very easy to begin with. I actually think it’s a lot easier now, for many reasons – maybe because I’ve learnt where everyone is and how to find them, or maybe the whole landscape has changed to make us more visible as sick/crip/disabled art workers. Maybe both.
While we were at Wysing, Johanna Hedva came to stay with us for four days, and we – me, Lizzy Rose and Alice Hattrick – spoke to lots of other people by video call, and the clearest thing that we took away as a solid thing to help us function in the art world, or in the world in general, was these access docs that Johanna was using, and lots of the other people we spoke to were using. We hadn’t heard of that before, and we learnt through the residency how to make them and use them. So we said, ‘OK, we’ll make a resource to help as many people as possible who need this to be able to do the same.’ So that’s how that was born, and since then, other people have been finding me, and I’ve been finding other people, and that’s a really big part of my practice: finding people, putting people in touch. In this area of my practice and in my artwork, a lot of it has to do with re-collectivising people who’ve been hyper-individualised, isolated, or their identities or their experiences have. I could say a lot more, in terms of specifics, but perhaps I should leave it there so everyone can speak.
I love hearing about the origins of the access riders site. Before we move on, if you’re comfortable, K and I both watched To Not Follow Under and it’d be great to hear a bit about how you address spaces of care in your videos. I don’t know if you’d distinguish the access riders from these artworks as more direct acts of advocacy or activism. Obviously, they’re a necessary first step to create a ground from which to allow yourself and others to participate.
LC: I think I’m still working out how to separate or hold together those parts of my practice. The Access Docs online resource, for example, is at the very practical end of disability/access stuff, and then there’s my artwork, which is obviously formed in that context, but to a lesser or greater degree involves those things as themes. I can’t escape my body, I’m never going to make work that isn’t formed within this context, but sometimes it doesn’t have so much to do with it directly. Maybe one day I’ll make work about the colour blue or something like that. Though that does now make me think of Derek Jarman’s Blue which is totally about illness…
Actual architectures of care appear in a lot of my work. Hyperbaric (2020), for example, is a performance I did in London and then Vilnius, which has a script based on interviews I did with people who’ve spent prolonged periods of time in hospital, and a huge part of that is the imagery of those spaces – crunchy plastic bed sheets, chubby weighted furniture … The London performance centred around NHS spaces, while the Vilnius iteration was sited in Lithuanian healthcare spaces, where Soviet architecture bumps up against Western-looking interior design. When we did that performance we had some trouble with the wifi being blocked by the concrete walls of the gallery space, so the actual architecture itself, formed by and within a very particular political and ideological context, interfered with the performance, which felt kind of poetic.
To Not Follow Under (2019) was partly filmed in a hyperbaric chamber, which is what the performance grew out of and got its name from, but another film I made that really typifies that aspect I mentioned of recollectivising hyper-individualised experiences is Collapse I interviewed seven people who fall asleep as a coping mechanism in times of distress, and not a single one of them thought that anyone else did this. They all thought that they were the only one, and a lot of them hadn’t spoken about it to anyone, because there’s no word for it. A lot of our words, unfortunately, in this context of disability and illness, come from the medical industrial complex and come from diagnosis. It’s a complicated thing, and when you don’t have a word for it that you’ve been given, you have to work harder to find it amongst yourselves, to share it with others. Collapse was filmed in a sleep clinic where I was being tested for narcolepsy. So I’m in the clinic, with my wires on and stuff, but it’s sort of fuzzy and blurry. It’s filmed in thermal imaging in black and white, so it’s kind of a bit other-worldly. I talked to them each about whether they felt falling asleep could be an act of resistance, kind of like your touring show, Taraneh, even in the title: Sick Time, Sleepy Time, Crip Time: Against Capitalism’s Temporal Bullying, or K, having the beds in your exhibition Having Been Breathed Out/ Patriarchy Over And Out at the CCA Glasgow. They had varied views. Some of them said, ‘Yes, definitely’, and some of them said, ‘Not really, because I don’t want to lose my job, and if I fall asleep at work it’s me that this comes back on, not the wider system.’
This all ties into your recent text too, Diagnosis. In Canaries – a support group, Listserv, and, formerly, art collective of women, non-binary and trans people with auto-immune diseases and other chronic illnesses – we’d talk about the various ways one can or cannot be helpful. In some ways a diagnosis can feel legitimating, particularly with diseases that are wrapped in accusations of hysteria and hypochondria, or if you’re someone who’s not believed or perceived as the norm in the bio-medical industrial complex, whether due to your race, gender, sexuality, religious belief, financial status or what-have-you. Still, for many idiopathic diseases it might not make much of a difference for treatment, depending on how you approach maintenance and healing. Still, once you have it, it is somehow validating because you’ve spent so much of your time trying to receive care from these systems and having a diagnosis can be a key to unlock some form of access.
But then if you can’t erase that label, that can fuck you over in the future as well. So if you have control over it, that’s one thing and if you don’t that’s another.
Agreed. In asking you to elaborate I was thinking specifically of To Not Follow Under or Collapse, which very directly address spaces or architectures of care. But we’re bringing up language too. The codes and the languages used to access care in those spaces are part of the architecture.
LC: The last scene in To Not Follow Under where Nephertiti is standing on the bed, that’s the same room in the sleep clinic that I stayed in. So it’s kind of woven in there even though you don’t know that from watching it.
Okay, I guess it’s my turn. First, Leah I really appreciate you sharing that the initial Sick Time, Sleepy Time, Crip Time curatorial essay was meaningful to you. My text was written to honour the people I was newly coming into community with. These connections are part of a big web and, in the sharing of support and information, you’re not always sure where the resources originally come from. These small ways in which we share resources to build a disability community, where you can pay it forward, or across, are so cool. Just this weekend I was sitting with a friend who recently had a stroke. We got to talking about their evolving relationship to capacity, so I shared spoon theory as a tool for understanding (even if it is limited, in some ways). I really loved experiencing that moment.
I’ll share a few broad resources that we don’t have time to dive into right now and then discuss three examples. I often talk about how the Sick Time, Sleepy Time, Crip Time exhibition, which included 20 artists in the last version, was just the tip of an iceberg. While the show is the main access point, there’s a vast rhizomatic underbelly of workshops, performances and group work that’s intentionally not available to all and may or may not have seeded or emerged out of the artworks shown in the galleries. This layering of opacity is intentional. In a recent event at Squeaky Wheel, Amalle Dublon helped me articulate how my approach to accessibility goes beyond open access in institutions to different configurations that operate via partiality (out of the limits of identity-based separatism). For further background on how I approached it temporally as well as spatially, Tao Fei’s review provides a nice glimpse.
The first example I’d like to share is The Waiting Room, which I wrote about in that essay you mentioned. It reproduces an architecture of care from a clinical setting – one that has come to symbolise the inequities of care in the bio-medical complex – and brings it into another institution, one of art.
The Waiting Room originates from an installation resembling a doctor’s waiting room in the initial show by Jesse Cohen and Carolyn Lazard with Canaries. The newspaper we made, Notes for the Waiting Room, shared poetic ruminations on surviving in and outside of medical institutions, thereby extending the commons of the group outwards. In the first show, only this publication was available alongside an unfolding grid of photos that Canaries members sent to the gallery whenever they left the newspaper in actual doctor’s waiting rooms while seeking care. This was a very important collaboration for me and helped seed the show, alongside the time I spent with Constantina Zavitsanos and Park McArthur at the New Museum examining issues of debt, dependency, and care right before I had a bad auto-immune flare-up.
After the Canaries art collective disbanded, which I discussed with The Berlin Feminist Healthcare Research Group in …we all got sick, The Waiting Room morphed. In subsequent exhibitions it became a broader reading room, housing numerous historic and contemporary publications on health autonomy and mutual aid from art collectives, radical health collectives, and local healing justice or health organisations for under-supported populations. It was a bunch of different resources and a site for other site-specific commissions. For example, alongside the Black Panthers Service to the People manual was a new colouring book on food sovereignty by former Black Panther and artist Baba Wayne Curtis, who runs the urban farm Feedom Freedom with his partner Mama Myrtle in Detroit. I recently dove into waiting as a part of crip time in this series, in which I discussed Lisa Baraitser’s thoughts from Enduring Time on care as a being-with in an affectively dull time or asynchronic time without demanding a march forward. Perhaps we’ll get into that more later as it relates to working, collaborating, movement building and living on crip time.
Secondly, again looking to architectures of care outside of art, at the project’s core was the pairing of artists with community groups, either through old-school charity-type social service organisations or more radical organisations that sustain alternative infrastructures of care specifically for oppressed people. This involved groups of people with chronic illnesses, refugees or asylum seekers, local disability communities, activists experiencing burn-out and others.
In the iteration in Houston, some of the artists worked with two groups: young single mothers living in residence alongside me at Project Row Houses and women transitioning out of the carceral system in residence at Angela House. Project Row Houses is an exemplary Social Practice organisation that catalyses community creativity in the wake of displacement centred in the historically Black neighbourhood of Third Ward, so we all learned a lot from the programme that was in place for the young mothers on self, family and community care. On the other hand, there was Angela House, a transitional housing programme in a former monastery led by a nun who used to be a police chaplain. I worked with a doctor, who got frustrated with the limits of biomedicine and, after doing volunteer work in the county jail, helped develop Angela House’s year-long programme on reintegration that involved trauma-informed therapies around sexual exploitation and addiction recovery for the women in residence. This environment was more of a complex object due to the overlapping lenses of care at play, so a good deal of the work was exchanging with Dr Andrea Link on how the space of art challenged or reconfigured some assumptions around what a supportive environment was.
Third, beyond working with partners to hopefully help them evolve their approaches to care, each time I work with hosting art organisations, I push them to develop more accessible infrastructures and practices. Taking an approach specific to location, each host was called upon to make longer-term changes regarding accessibility, decolonial and other anti-oppression practices.
For example, in the last version in Detroit, in addition to the web of working practices created between staff and artists in the production of artworks and the show – such as me sending a google form that included a link to ‘Access Docs for Artists’ for those without existing access riders and other more subtle practices – I made it a condition of participation that the host, Red Bull Arts Detroit, embark on a multipart accessibility audit. There wasn’t any one person positioned to do this through multiple lenses, so we partnered with a local disability justice organisation called Detroit Disability Power, a mobility consultant working with them, and Ezra Benus, a disabled artist and educator from New York. We audited the hosting art organisation’s physical infrastructure (galleries, offices and residency) and programmes, as well as supporting the establishment of a ‘tool kit’ for outside programmers to use after workshops to ascertain local needs, which includes physical resources like ramps, listening devices, grants for language interpretation (ASL and otherwise), stim kits and various guides that are locally oriented but draw from national and international resources.
There are a lot of complexities to Detroit’s funding landscape in general, and in the arts specifically (which I discuss more in this essay). After the intentional decimation of radical Black institutions, industry leaving the region, the city’s bankruptcy and then subsequent redevelopment, very few people, often extractive developers and foundations, hold most of the capital resources. Since Red Bull Arts Detroit had money and is a key player, it was important that I used the temporary embrace there as a curator-in-residence to get them to commit resources to local infrastructure. I said, ‘Yes, let’s attempt this transformation to make institutions be openly accessible.’ But I also understood that this requires a long deep process beyond the time of my residency and, if it doesn’t work, which is often the case, it can be quite violent for someone to think a space will be accessible to them and then find it actually isn’t.
In tandem, the other half of the access plan was to take one of the installations from the exhibition Black Power Naps by Navild Acosta and Fannie Sosa out of the Downtown/Eastern Market area, which gets most of the resources, and position it and the show’s programmes in a community centre in a majority Black neighbourhood. While The Waiting Room rerouted a site that symbolises the inequities of care in the bio-medical complex towards mutual aid, Black Power Naps refused to wait for an end to harms caused by structural racism, instead reclaiming stolen time via collective rest. In the US, from the Middle Passage to the plantation, there’s a long history of strategic disruption of Black people’s restorative sleep patterns so as to better subjugate and extract labour from them. The arc of this racially configured violence extends into present-day inequities in access to education, housing, labour conditions, healthcare, food and rest, and, now, in the uneven effects of COVID. In highlighting the racial sleep gap, the artists demonstrate how collective resting can be resistive. The project gives back stolen time by asking white-led arts organisations to fund beautiful Afro-futurist napping environments for Black, Brown, Indigenous, migrant, queer and trans people to cultivate laziness and idleness together. It also asks them to compensate Black artists appropriately.
Visiting an earlier iteration, I’d perceived discomfort from some people resting while being watched by white visitors, even if they respectfully witnessed from a distance. I imagined this resulted from the norms of open access at the host organisation, so I asked Navild and Sosa if they’d be interested in exploring separatism or partiality alongside the open access of the Red Bull Arts gallery space. In other words, we first considered installing it in a neighbouring event space alongside the exhibition proper so that only people identifying as QTBIPOC could enter. Then we went the route of seeking a space to which some of the people we were trying to centre already had partiality, which wouldn’t be publicised in the exhibition proper. Unfortunately, due to the pandemic and some of the organisations that I had hoped would support the programmes closing, we never moved past me floating the possibility. The programmes with local artists and organisers morphed into some smaller engagements feeding into the book that K and I are working on now.
I was making some notes about this earlier and I was thinking about several different kinds of architectures of care. The first one I just wanted to mention really briefly, because I know that we made a sort of separation between architectures and practices, but I do think it blends both. Something I think about a lot in terms of potential architectures of care is the organisational structures in which I work. And I’m often working with other people, especially in self-organised or collective practices, or unresourced or under-resourced projects.
Organisational structures are about addressing different access needs for participation in the shared project or shared undertaking, but also about the interrelation between creating access for reasons related to health, access around gender, and (as a white person) trying to undo white supremacist modes of working. Ableist practices uphold many different aspects of power structures related to multiple vectors of oppression. And I relate this to architecture because I think the protocols that groups establish for thinking about how to communicate and how to meet – when and where, what are the limits – are forms of architectures of care. And I’m thinking a lot about these kinds of experiences of working in groups. How do you make a structure that works with the fact that people are really different and have different communication needs? How do you find ways that allow all these differences to exist, and not feel squashed? So that’s one kind of architecture that I’m interested in.
I’ve been thinking about the sorts of digital spaces that are now more dominant with the pandemic and the urgency of making these spaces more accessible, or the responsibility as an organiser of thinking about those architectures. Because I think there’s something super important about accessibility online, where it gets really into poverty and economic access. But it’s also a super interesting space for neurodiversity, so there’s a kind of nuance in organising online. And it’s shocking that people aren’t doing stuff that’s so easy to do! And so I’m also thinking a bit about making my participation conditional on the architecture that I might be involved in, setting up functioning in a certain way.
And then I was thinking in an arts-based context about when I’m making an exhibition, and about access in quite a broad way there. Part of that is temporal – I was thinking about the different kinds of attention that works might call on from the viewer – and there is a spatial organisation to that. So I like to think about different forms of embodiment in the space in really practical ways – to do with seating, or like you said before, making beds for an exhibition. I really like to make my work tactile. For me, it’s important that people can touch things, because that’s something that people might want to do for lots of different reasons. And something that I’m very interested in, which emerged partly through my own needs I think, is thinking about different sensitivities to sound, or how an exhibition space can work with sound and also work with the fact that people have different sensory sensitivities, and how to incorporate that into an exhibition design – different kinds of attention and different kinds of embodiment. I also feed into the construction of the work in two slightly different ways. I understand my responsibility for constructing an exhibition as making a space that could be an architecture that’s more caring, I’m not going to say it’s completely caring, but it is also about how to balance an idea of openness, a non-didactic mode of making things available, with a responsibility to speak about difficult issues. I’m really interested in how to make a space that’s comfortable in which you can talk about ideas that might be really uncomfortable. I have different accommodations for doing that.
The last thing I was thinking about relates to disability access in particular, and something I’m increasingly interested in as an artist is thinking about that as not a layer of mediation that comes afterwards, but as something that’s integral to the creative thinking of how your work is conceptualised and made. And again, some of that is also really practical – thinking about collaboration and the need to work with others on realising work, and how that means making certain budgetary and temporal decisions. I always try to start collaborative conversations a as far in advance as possible, given the conditions. One thing that we’re doing with the book that makes me really happy is that we have a timeline long enough to work with each individual writer according to their access needs as part of the initial conversation. So it’s kind of constructing the timeline around people, rather than the other way round. Within the constraints of working with an organisation, I try to make space for that sort of flexibility of timeline, which often means allocating more budget to people, and people’s knowledge and people’s skills, than to material things. That’s the way that I negotiate the economic architecture of that.
I love what you were saying about balancing openness and responsibility, and how you approach that by practising open access alongside partiality.
I’d love to hear more about that, because you’ve got a three-layer structure Taraneh, I think, which is really relevant to what K was just saying, of going from openness to separatism to partiality. But we don’t have time.
So shall we pivot to the next question?
Yes, let’s do that.
So I’ll read the question:
Do we understand access only in relation to disability? Can we describe how we are each understanding access just now?
Previously, I’ve described access as, broadly, the ability to enter a space (and that doesn’t necessarily mean a physical space), fully participate and feel like you belong. As Mia Mingus has described recently, in thinking that emerges from her widely circulated writing on access intimacy, the best access feels like love, not compliance or simply the procedural meetings of rights.
Accessibility, in how I understand and use the term, should centre disabled embodiments but also include others marked by a structural process of exclusion. So, related to what you said K, it should incorporate economic and racial equity, for example, by not just building accessible websites with alt-text but also thinking about who globally has internet access and supporting community mesh networks. For me, access must counter ableism’s pervasiveness. I really love community lawyer Talila A. Lewis’ definition of ableism as:
A system that places values on people’s bodies and minds based on societally constructed ideas of normalcy, intelligence, excellence, and productivity. These constructed ideas are deeply rooted in anti-Blackness, eugenics, colonialism, and capitalism.
In this formulation, you don’t need to be disabled to experience ableism. It also holds a horizon of abolition, not integration into a violent system. Ableism can’t be solved by reformist practices of ‘inclusion’ or ‘diversity’, which only seek to expand the current formulation of institutions. Accessibility is often co-opted as part of institutional languages of reform. We spoke last week a bit about the rise of accessibility departments in museums in the US, which largely get isolated within education departments and often approach access as an afterthought via ‘accommodations’ or interpretation (versus being access-centred) This is due to curatorial hierarchies. K, you highlighted various ways in which you work against those tendencies. Even the more effective accessibility departments, like for example, The Whitney Museum’s, which brings access into the early stages of curatorial commissions and has supported wonderful programmes like I Want to be With You Everywhere, are still limited when those who lead and fund the museum profit from the targeted creation of debility and disability in certain racialised populations. I’m speaking in this case specifically about the former Vice Chairman-of-the-Board Warren B. Kanders, whose company Safariland produced tear gas used in Palestine and at the US-Mexico border. Without the pushback by the artists of the biennial, weekly actions of Decolonize this Place, and an open letter by staff members (many of them workers of colour with the least protections), this contradiction would still stand. For me, especially as an Iranian-American who has seen American imperialism and white supremacy cause illnesses in my family that I’ve inherited, decolonisation and disinvestment is key to creating accessible worlds and institutions.
That’s a great summary. I think that Talila A. Lewis quote is fantastic, and really says a lot. I guess I’m increasingly thinking about access, to keep it simple, as being about embodiments that might be comfortable in a place. And that could be in relation to the many things that affect each person’s experience of embodiment. It’s important, especially in art institutions and organisations, to recognise that they’re coded as white spaces and that they’re in many cases hostile spaces for people who are not white. But then I also think it’s really important to maintain the specificity of thinking about accessibility in terms of disability because most organisations aren’t even doing that. It’s this super complex quesion of how to work on access in a system that is in its essence exclusionary, and is designed to be exclusionary – how to keep all of these things in play at the one time. Living in the Global North, all access to anything is built on the expropriation of people in the rest of the world from access to the basic things needed to live, like land and water. I’m interested in practices of access that really address the complexity of need that might exist, and fundamentally in a capitalist system that’s really difficult. It requires a completely different system of values. So I guess as an individual I’m trying to juggle how to divest from these really harmful systems while also making them more functional for people who have immediate needs now while these systems still exist and are where the resources are.
I’m not sure what to add to what both of you have said. My understanding of access is also along those lines. We spoke elsewhere about environmental justice as a racist issue – I mean the people who contribute to climate change the least and suffer the most from the fallout are people of colour, people in the Global South. But environmental justice tends to look very white in the way that we’re sold it. I was also just thinking while you were talking about box ticking, and how identity markers get put into boxes, and you can tick one or a few but there’s no real linking, there’s no real understanding of how those things affect one another or are inseparable, and it just comes down to something really bureaucratic and that functions in many places including in the art world, in art institutions, and in a medical context. And who does that serve, to think of it that way? And where does that come from? Probably British colonial desperate attempts to understand things that colonisers couldn’t actually understand.
Just to briefly to pick up on what you said before about language Leah, I was thinking that something that connects these different aspects of access is that people who are in some way denied access, for whatever reason, what they maybe hold in common, although it’s different in each case, is a need to work with different codes of signification in order to get what they need.
To have the right word.
That kind of ties into the next question.
Great! Ok, let’s go there! The next question is:
The wonders and limits of disability identity: how do or don’t we each lay claim to this and why? If we do, how did we come to it and which elders are we honouring?
I don’t identify as disabled, although when I applied to university this time I did tick the box, because the way they articulated it, I thought, ‘Oh! That’s me!’ It said, ‘Do you have chronic conditions that have affected your day-to-day life for more than a year?’ I was like, ‘Yes!’ But if asked if I was disable, I’d tick, ‘No!’ And that’s to do with not feeling it’s really OK for me to take that space, because that space is already very…I don’t know, it has a lot to do with resource allocation, and knowing that there’s not enough, and knowing that I’m relatively OK. I do have several chronic illnesses, and now, later in life, I understand those as being connected through auto-immunity, and that affects my functioning in fluctuating ways. I think a lot about the interrelation of health and the socialisation of gender, because when I got diagnosed I’d normalised so many symptoms, I don’t know how I was doing my life! I was just doing my life, and I was just like, ‘I’m fine, everything’s normal’, and then I was like, ‘Oh no, I’m really not fine! I’m not supposed to be feeling like this.’ Something I just wanted to put out there was that although I can manage my conditions much better than I used to, I actually have no idea what a baseline of normativity would be any more. Is that a fantasy? Is there even one?
Who am I honouring? I really wanted to mention my old friend Alice [surname?], who I think is probably the first person in my life who I had conversations about any of this stuff with, and I’ve learnt so much and continue to learn so much through being friends with them. And all of my elders are actually not elders, they’re all people who are alive, and many of them are younger than me. I’d like to highlight the work of Alison Smith, Collective Text, Emilia Beatriz, Rebecca Tadman, and Sandra Alland.
Most of mine are peers too.
Same! A lot of my elders are people only slightly older than me or even younger than me. Again, people who helped us work through the residency: Johanna Hedva, Carolyn Lazard, Abi Palmer, Lou Coleman, and all of the people I pointed to on my residency page, some of whom, like Jermaine Greaves, who runs Black Disabled Lives Matter, are younger than me. There are loads of people I also want to mention, like Bella Milroy and Emily Barker. I mean if I wrote an exhaustive list it would go on for miles! And you Taraneh – I’ve already mentioned how pivotal reading your text was for me. I think what we’re realising is ‘elders’ doesn’t have to mean age, it’s more parallel, and for me it’s ever expanding, in that for example now you and I, K, have met through Taraneh.
I also wanted to point to the people who got through the Disability Discrimination Act in the UK, whose work was really important and I’m incredibly grateful for. I don’t think chronic illness was really properly involved in that movement, and in that formation of the Social Model of disability – the way that’s been carried into a bureaucratic level that applies to employment policy, for example. I was actually speaking to somebody a while ago who was involved in the 90s in the UK in that movement to get it through as law, who was saying that impairment was taboo in those conversations. I don’t know if that was the case for everyone, or just from this one person’s point of view, because the push for the Social Model was: we will not be disabled as long as there are accommodations made. That’s so fucking important and remains too fucking important and we’re still not there. What that leaves out is that for me, as an example, no matter how many adjustments are made, I’m still going to be in pain. and it needs to be OK to talk about that. There are changes that I do need that will help me function in day-to-day life and to do everything that I need to do, but it also needs to be OK that I’m going to be in pain, because there’s no way around that.
It’s totally a personal thing, K, and I can’t really comment on why you may or may not identify as disabled, but I’m thinking about that in the context of chronic illness not being traditionally included in a lot of conversations around the rights for disability. So I do identify as disabled, I do also identify as crip. I don’t know if we want to get into that conversation, it’s a long conversation that we were talking about last time. It’s a word that I’m processing after what you said previously Taraneh: That crip studies is an academic field, which is pretty white in the States. It can overlap, but is often distinct from disability justice ideas and values. That it can sound rarified/elitist as many are unfamiliar with the term and its use in certain communities is sometimes interpreted as an appropriation of the crips gang, which further complicates the rarified academic (often white) space tie s. I’m still thinking about that and processing it, because it’s also a word that’s helped me find people, and it’s also a word that automatically indicates a level of political engagement. I came to identify as disabled, A) because I needed stuff to happen in my workplace, which at the time wasn’t as an artist but in other workplaces, but B) I also have a chronic illness, and for a lot of people living with chronic illness, and this is certainly the case for me, I started looking for a cure, and came to the identification of disability when I realised there was none. It’s kind of sad that it had to happen that way, and there was no-one around to say ‘Welcome to the family!’ as soon as I was diagnosed, or pre-diagnosis when I knew I was ill but hadn’t jumped through all the medical hoops yet. The way we’re socialised automatically identifies disability as something negative, unfortunately, so it’s a shame that it took me so long to get there. But then once I did, it was about finding my people.
I often remark that I feel it’s important to start off by recognising my position as someone who’s had non-apparent disabilities for much of her life and the attendant privilege (and challenges) of passing as able-bodied and white in institutional spaces, although I’m neither. I essentially lived two separate lives. Then I came to understand how grappling with my own corporeality in curatorial and creative work might help institutional structures change to support other embodiments that these structures deny. My father as an immigrant essentially said, ‘American society is run by institutions and they aren’t structured to support us, so you have to demand that they do.’ Which is what drew me to the arts and to studying institutional critique, originally with Hans Haacke. So this is where the demand comes from that institutions that hold a lot of resources and power should transform, while simultaneously believing that care in a community is often the best kind.
Akin to what you said K, I recognise that the effects of my chronic illnesses might make living less difficult for me than for some other disabled people. So the level of difficulty I have in relation to others, potentially, has to be recognised. That said, I also feel that the more people show how they don’t fit ableist notions of ‘normal’, the more power disability as a political category has. In relation to our shared experiences of chronic illness or pain and cure discourses, I want to recognise that there are different kinds of disabilities that, if the built environment were structured differently, wouldn’t be painful. So that’s socially constructed. Whereas, if you have idiopathic illnesses, in line with what you said Leah, such transformations won’t necessarily resolve the pain, just allow you to exist more easily in society.
We don’t really have time to dive into the trajectory in the US from medical or rehabilitative models to disability rights to crip studies and neoliberal design to disability justice. But, Leah, related to what you describe in the UK, disability rights put an emphasis on visible or apparent disabilities and was originally motivated by white men newly disabled after combat. When I say ‘disability’, I understand it in the sense of the term ‘cross-disability culture’, which ranges from the Mad, Deaf, Blind, D/deaf, Deafblind communities to neurodiverse people, those with chronic illnesses, physical or cognitive disabilities, and many more. I love the definition we used for Crip Fund, a group of disabled activists who came together to practice mutual aid shortly before the pandemic hit. Our understanding of disability was formed regardless of whether the Bio-Medical Complex recognises it as such. The way in which our understandings don’t often sync with these labels is important to raise. Like for race, an option that fits me is rarely there, so then I’m like, do I check anything at all? And what am I checking this for – to feel represented, to get closer to being understood, to get resources I personally need, and/or to unlock more resources for my community, to be tracked?
Crip Fund highlighted the need to support those who might not identify with the disability label for many reasons, whether because they already face multiple other oppressions, because the whole range of possible disability categories is not known, or if the definition provided is good for that specific occasion but not others, like you mentioned K in your Uni app. I really learned about the complexity of this here in the global Black metropolis of Detroit, because of how disability gets tethered to rights-based frameworks. There are many people here who don’t really feel they ever had access to those rights. We saw that last fall when they tried to throw out all the presidential election votes here.
K and I have been speaking about how this difficulty can be understood through Jasbir Puar’s articulation of how, while there has been a rise of disability pride in some communities across the Global North, many racialised populations in the Global North and the Global South are pre-ordained for injury and targeted maiming and have never felt they had access to this identity by way of rights or even justice frameworks. So we should consider how to cherish the love for our disabled bodies, lives and communities alongside this awareness that not everyone globally has access to disability- and healing-justice frameworks.
That said, the rise of these movements over the last ten years in the US has been very influential to me. In addition to my collaborators, there’s an abundance of powerful people to cite, so I’ll just name Patti Berne, Leah Lakshmi Piepzna-Samarasinha, Stacey Milbern, Mia Mingus and Cara Page. As for art, I would quickly call in Frida Kahlo, whom I looked to when I was a perpetually sick brown kid, plus Act Up’s die-ins.
I think holding peers in equal reverence to ancestors or elders has to do with the importance of the disability community as a means of survival and joy. This syncs with the wisdom of other kinds of immigrant or racialised communities where collective care and mutual aid has always been a thing and could never fully buy into the myths of independence historically propagated by white men who actually rely on the unrecognised support of others.
There’s not time to go into it properly, but I think there’s a parallel between this rights-based pride-based model of disability and a rights-based pride-based model of queerness that means it’s really useful for those things to talk to each other. Those rights-based pride-based movements started as protest movements, and they need to stay connected to protest.
I’m going to make a pivot now as we have one final question that’s important but we don’t have time to address it fully, so I’ll try and draw some threads together in relation to it.
How do we approach access from our unique positions and responsibilities, with their respective powers and limitations? For example, in roles like artist, editor, curator, educator; in paid, unpaid, independent/freelance, institutionally supported, community organized relations; bringing our full intersectional selves and others to into solidarity, affinity, similarity and difference.
Leah, in our preparatory conversation, you explained that you were approaching your residency with Serpentine in three stages. First, you did some disability awareness work with the organisation (preparing the ground for others who come after you), then you’re doing these three interviews for the website (making space for developing collective thinking and doing), and finally you’ll do some of your own work (making space for your own desires). I thought of this as a really clear way of addressing the complexity of roles and responsibilities that you as a single artist might embody in relation to this residency, and also a really clear way of organising them for yourself in time so as to perhaps set boundaries around the part where you focus on your own work. Everyone is always going to be holding multiple positions at any one moment, but that can also be quite overwhelming or exhausting. I know that Taraneh in her curatorial work has tried really hard to address some of this multiplicity. For example, in working with institutions she does that, preparing the ground so the artist doesn’t have to, and a lot of the work there might involve insisting on accessibility practices and anti-racism practices through legalistic frameworks. Whereas when she works in community projects, a lot of the work is about nurturing relationships and thinking about accessibility as a relational process made with people rooted in a specific context. So sometimes the work is administrative and didactic and sometimes it’s about shared processes of learning together.
I spoke a bit before about how this question of responsibility and positionality needs to be continually worked in relation to time and resources, and I just wanted to close by saying how much I’m enjoying thinking through these questions in our book project, because they’re there in the editorial process and also in the content and commissions. So, for example, we mentioned that we’re working with timelines and forms of editorial process that are developed differently with each person who’s writing for the book. We’re also trying to think about this expansive definition of access that we all articulated before in relation to future readers. The book will speak in different modes and voices, it will contain moments of rest and is designed with different types of reading attention in mind. It’s also thinking about where those readers are coming from, what they might or might not already know about art, or community organising, or disability, or the relations between how racism and imperialism play out where they live and where someone else lives. We’re trying to develop a book that shares knowledge that can be applied in different contexts from different positions and responsibilities.
This tension between creating access wherever you are (with the resources and specific needs in your community) and the legalistic universal modes of access or DEI in institutional spaces is something we continually grapple with. We keep discussing how to hold the horizon of abolition and decolonisation while dealing with compromises for surviving in the conditions of the immediate present.
Building on what K said, the book will share a bunch of tools that are starting points in ongoing interrogative relational processes, as opposed to checklists you complete. We want these resources to be useful for necessary but often neglected negotiations and practical skills that help build community by navigating one’s own needs alongside others. As such, we’re careful not to focus only on the articulation of individual needs (which some access riders do). Furthermore, we understand that not everyone has the ability to articulate needs, or they sometimes communicate them non-linguistically, which may make them easier to go ignored. Cultivating the role of intuition versus articulation in this process is something for which I often revisit Mia Mingus’s ‘access intimacy’ concept. She defines access intimacy as ‘that elusive, hard to describe feeling when someone else “gets” your access needs. The kind of eerie comfort that your disabled self feels with someone on a purely access level.’ I endeavour to cultivate this in all collaborations, but it’s much harder to do in institutional spaces.
The last thing I’ll say is that, amidst this moment of transition with COVID restrictions, it’s important to discuss how the recent widespread implementation of mutual aid and accessible practices originated from disabled, queer, immigrant and communities of colour, often without credit or promises to continue them. We’re already seeing a diminishment of accessible options that arose when the ‘ableds’ finally desired them too, early on in the pandemic. Relatedly, in the book we’re thinking deeply about how to learn from traditions that work within specific contexts without lifting/stealing them. K gave the example of Indigenous land recognitions, which originate from tribal traditions, meant to honour those one is accountable to/where one is from. They’ve become an epistemological performance of settler guilt in the form of a neoliberal protocol. Instead, one could endeavour to be in the right relation with Indigenous people and the other longstanding communities of a place you create within without performativity, all while learning from the tradition’s practice of hospitality, interdependency, and revering roots as a way of unlearning white supremacy.
I just want to say thank you, I really enjoyed this.
Yes, thank you so much for joining me. The only frustrating thing is the conversation needs to be another week long!
I trust over time we can continue the conversation.
Taraneh Fazeli is an Iranian-American curator living between Waawiiatanong/Detroit and Lenapehoking/Brooklyn. In 2016, after a decade working at NYC-based arts organizations such as Artforum, e-flux, Triple Canopy, No Longer Empty, and The New Museum, she became an independent curator working primarily through residency programs. She teaches at the Center for Creative Studies, Detroit lectures widely, and has written for publications including Artforum, Art in America, Hyperallergic, and Flash Art.
Her recent exhibitions include Sick Time, Sleepy Time, Crip Time: Against Capitalism’s Temporal Bullying (2017-20) on the politics of health, disability, and care and I let them in. Conditional Hospitality and the Stranger. (2018), a two-person show with Kader Attia and Candice Breitz which used hospitality as a lens to understand the limits of empathy and effects of “white benevolence.”
Taraneh’s curatorial practice engages art as a site to constitute reparative cultural rituals, interrogate the techniques of representation, and dream more-just ways of being together. She roots her approach to curating at the intersection of the disability and diasporic communities she calls home. She is co-director of Poetic Societies, Detroit-based organization that uses arts and healing technologies to focus on transnational celebratory cultural events to help participants regain ancestral knowledge lost due to migration, forced displacement, processes
of enslavement, or colonization. In Detroit, Taraneh co-founded Relentless Bodies, a creative disability and healing justice collective, is a Detroit Equity Action Lab fellow, and advises on accessibility committees for organizations such as Allied Media.
K MacBride is a white Scottish artist and editor currently living in London. They work with performance, installation, writing, video, and event making, with and without institutions. Much of their practice focuses on relational entanglements, listening across and being attentive to difference, and working creatively towards an ethics of inseparability and interdependency. Collaboration and supportive practices are important to them; some of these look like art, some don’t. During times when they didn’t identify as an artist (and during times when they did) they worked in the care industry.
They are currently undertaking doctoral research, funded by the UK Arts and Humanities Research Council, at University of the Arts London with a research project titled “Listening as creative practice, listening and decolonial practices: plural methods, plural experiences.”
As an artist, they address accessibility in how they produce their exhibitions and events. For example, the exhibition having been breathed out/patriarchy over and out, and its partner performance tongue breaks inhaling, CCA Glasgow, 2019, and the series of workshops and performances undoing listening, Transmission Gallery, Glasgow, 2017.
They used to live in The Netherlands where they were part of a collective that ran a queer community center called Tender Center.