A New Culture of Accessibility
How might a social model of disability be practiced within the context of The Netherlands? What would it look and feel like if the Dutch art and culture scene led the way for a radically new way to be solidary with people with a disability?
A social model of disability, as cultivated by disabled people, sees barriers and limitations as that which disables people in society, not their impairment or difference. This counters the current medical model of disability, which focuses on the impairment(s) or the so-called shortcomings of the individual, rather than looking at societal, systemic inaccessibility as well as the grammars of ableism. We find that the medical model is not only a dangerous approach, it also reverberates in the ways we are (not) living together. Historically and today, the sick, disabled, and mentally ill are isolated from social life. A new dimension of this is laid bare within the pandemic, which is not only a medical event but as we’ve seen, a social and political one.
The framework of Disability Justice examines disability and ableism as it relates to other forms of oppression and identity (race, class, gender, sexuality, citizenship, incarceration, size, etc.) and sees them as interconnected. This terminology and practice was drawn from the political and cultural work of Black, Indigenous, and people of color. BIPOC queer and trans disabled and poor people have emphasized abolitionist approaches to life since prisons and policing further isolate people from communities and mandates a status quo of what is considered normal.
These approaches allow us to understand disability, debility and illness not as an individual circumstance which one must overcome in the face of structural barriers, but forms of life that navigate and survive societal structures that exclude, isolate, and stigmatize people that do not conform to socially constructed ideas of normalcy, intelligence, and excellence. These ideas come from decades of disability resilience and articulation. What we’re saying is nothing new. Disability necessitates the daily reproductive acts that sustain lives as well as the cultures that help us to deal with it all. We believe cultures of accessibility can take shape in The Netherlands too.
We’re inspired by movements in disability communities from the U.S and the resistance and activism to the conditions there which Disability Justice is born out of, in response to the lack of government support, the material conditions of capitalist productivity on the body, and the eugenics and medical violence that have taken place. Yet we also learn from the different forms of care, mutual aid, and collective support that is necessitated out of those conditions when there is neither State nor affordable private support. Considering our place in The Netherlands, or any other place for that matter, requires nuance in the commonalities and differences when addressing social care.
When comparing, there is considerably more government support and resources for people with disabilities in The Netherlands. Yet we surmise that this support is by empowering individuals with individualized pursuits for independence: the best wheelchair, electric doors, an amount of interpreting hours per month. While we expect nothing less, these efforts are to increase individual independence to conform to ableist life rather than confronting the structural barriers navigating public and private life: the inaccessible information, buildings, facilities, events, parties, restaurants, houses, and so on. Governmental care is essential but it can’t be the only form as it simply does not change the ableist society we’re living in. An additional impediment is that the generally accepted attitude in The Netherlands is that everything has been generated and taken care of, while it is not the case. We are certain we need different forms of care webs which requires a great deal of vulnerability. This is often talked about and expressed in theory as are other positions of lived experiences (for example in the areas of race, gender, and sexuality) but caring practices of tending to accessibility aren’t as readily discussed, paid attention to, or implemented within the actual material cultures of production, gathering, and being together.
[blockquote]It’s incredibly difficult and challenging when the necessity of care is one-sided or when the body is in pain and vulnerable in a way the other isn’t
Leah Lakhsmi Piepzna-Samarasinha details the many ways in which disabled people have organized, built communities and carewebs with power and brilliance in her book Care Work: Dreaming Disability Justice (2018). For example, Loree Erickson, a self proclaimed queer femme gimp porn star academic, created a care collective where interdependent care is the core philosophy. For the past fifteen years her care-collective has included disabled and non-disabled friends who work shifts and help her with her personal needs.
As Erickson explains in Care Work her care collective became a more explicitly political space: “It was more like mobilizing a community. I was meeting new people, I was connecting with folks, and I started to see the ways that collective care functions as anti-ableism training for folks.”
In Other Forms of Conviviality by Park McArthur and Constantina Zavitsanos, a text and score published in Women & Performance (2013), the artists draw on both the slippery necessities and intimacies of care labor as events of incommensurability. In the 2021 Spring Cycle of Wxtch Craft, co-presented by KABK Studium Generale and Casco Art Institute: Working for the Commons, Mia Mingus spoke about access intimacy, an “elusive, hard-to-describe feeling when someone else gets your access needs” and a sense of “comfort that your disabled self feels. ”This kind of intimacy, considered by Mingus and many from disability communities as ‘the missing link’ between structural limitations of access and community building, paves the way for interdependent connections as opposed to isolating, individual circumstances. Mingus emphasises that access intimacy needs to be cultivated because interdependence is often romanticized: “we all need each other” or “we’re all connected.”. It’s incredibly difficult and challenging when the necessity of care is one-sided or when the body is in pain and vulnerable in a way the other isn’t. In Capitalism and Disability, Marta Russel outlines the need to build unity against the divisive tendencies which hide the common economic interest shared between disabled people and the often highly-exploited direct care workers.
Disability Justice, like other anti-violence frameworks, takes time and time is what we’ve got
Art and culture can be the place where accessibility is reimagined and practiced beyond diversity, equity, inclusion, and access frameworks that are often based on state intervention, legal compliance, and adjudication. Instead, accessibility in the arts can be in support of justice, interdependence, liberation, and intimacy. We find that this produces an aesthetic and poetic register of mixed-ability and abundance that forms new ways of being together. We need to look at access not as something incidental or inconvenient that needs to be fixed, but as part of the entrance to an event or artwork. For as much as we articulate accessibility in the arts here, we want to mention how often disabled people and the reality of disability are left out of activism and movement organizing.
We wish to bring forth another terminology from Mia Mingus that can help us in our efforts: ‘Liberatory access’ is thinking beyond ramps, sign language interpretation, or simply ‘accommodation.’ It is a kind of access that is done in the “service of justice, connection, community and love.” It is the kind of access that is built into event planning and organizing and is not an afterthought. It is radically different from performing diversity and inclusion. Just like there is no such thing as a ‘safe space,’ there will be no completely accessible space but there can be skills and tools to create safer and more accessible spaces. Since art and media too have their own material possibilities, capacities and limits, creative approaches to accessibility can be generative from an anti-ableist point of view.
We can only start imagining new kinds of aesthetic social practice once accessibility starts becoming part of creative practices
We can only start imagining new kinds of aesthetic social practice once accessibility starts becoming part of creative practices. There are, however, several recent and leading examples of disability organizing. Nearby, the recent exhibition at Het HEM titled Abundance and guest-curated by Simon(e) van Saarloos, for instance, shows through sense and feeling the many ways we can care for one another and disrupts how we think we know what is true. Similarly, the recent exhibition and online platform at Argos titled Activating Captions engaged captioning, which is essential for deaf and hard of hearing people and many others, as an autonomous artistic form of expression. The exhibition explored audiovisual culture’s exclusionary nature and considers future, expanded possibilities of the captioning medium. Other examples from elsewhere include I wanna be with you everywhere at Performance Space New York, organized by Arika, Amalle Dublon, Jerron Herman, Carolyn Lazard, Park McArthur, Alice Sheppard and Constantina Zavitsanos, a gathering of, by, and for disabled artists and writers for a series of crip meet-ups, performances, readings and other social spaces of surplus, abundance and joy.
Sick Time, Sleepy Time, Crip Time: Against Capitalism’s Temporal Bullying curated by Taraneh Fazeli, is a traveling exhibition focusing on how the body is articulated in various discourses oriented around health. It proposes that better incorporation of the states of debility, disability, and rest into society (particularly their temporalities) could be resistant to forms of oppression and provide possibilities for rethinking collectivity. Like we’ve learned from essential care, this work takes time, but we also believe it creates time for new forms and values of life.
As we’ve witnessed in the pandemic, many institutions swiftly and even creatively shifted to online platforms and live stream possibilities to explore the fundamental art of gathering. For a long time, disabled and chronically ill people have asked for such possibilities without being listened to or accommodated. Far too often this has resulted in them not being able to participate fully in social life, graduate or sustain jobs. It is only when able-bodied people are confronted with barriers, and the fragility of their own temporarily abled bodies, do they take such action and power to make accessibility options. We wonder what it could take to continue these forms with respect to the more fragile lives of others. Like dismantling other oppressive systems of colonialism, patriarchy, and capitalism, this requires learning to no longer think only in the likeness of yourself and to reflect critically on who is gathering together. What does it take to make this leap without being personally affected by oppression or violence, debility or loss? What does it take for you to make the leap away from any idea of normalcy? And how do we make room for the failures and mistakes, the glyches and mishaps, the crip time?
More knowledge and culture around disability is needed. This is material and relational work. It takes efforts of connection, hiring disabled people (empowering their agency, determination and respecting their access needs), implementing accommodations in budgets and planning, communicating options in access, and ultimately expounding upon our creativity, which is our renewable resource. We’ll continue to make mistakes as we learn and grow. Disability Justice, like other anti-violence frameworks, takes time and time is what we’ve got.
DEZE TEKST IS GEPUBLICEERD IN METROPOLIS M NUMMER 4 ONBEPERKT TOEGANKELIJK. STEUN METROPOLIS M, NEEM EEN ABONNEMENT. ALS JE NU EEN JAARABONNEMENT AFSLUIT STUREN WE JE HET NIEUWSTE NUMMER GRATIS OP. MAIL JE NAAM EN ADRES NAAR [email protected]
Staci Bu Shea en Mira Thompson
Staci Bu Shea is curator at Casco Art Institute: Working for the Commons; Mira Thompson is singer-songwriter