[On the slide is a link for the access copy, that is also linked in the pad for our work together these days.]
An access copy is a document that contains all prescripted parts of a lecture as well as image descriptions. In the coming 30 minutes I will talk about my work as an artist/designer and a few collaborative practices I have made to offer some sparks of imagination for our time together over these three days. I'll touch on frameworks that come from my practice like disability justice, trans*feminist shapeshifting methods and anti-ableist technologies. A lot of the work that I will speak about today comes from my work with my collaborator Iz Paehr, who I work together as MELT with. In the ecosystem of my practice I work with multiple collaborators and interloquters such as: Helen Pritchard, Romi Morrison, Goda Klumbyte, Jingyun Li, SchwarzRund, simo tier and Rosen Eveleigh. In my input, as with our time here over these days I offer the invitation that everyone is to participate in ways that feel good to them, please take a break when you need it, and get cozy when you want to - this is a relaxed performance (a term coming from disability culture) that invites you to be here in a way that feels good to you.
[On the screen there is an image which shows an abstract drawing with painterly lines that has been digitally cut out and is resting amidst some lime green text which repeats ’Tactile (access) Prototype'. The drawing includes elements like a piece of bread, some plants and some other drawn abstract forms that are sorta like puzzle pieces.]
[The slide reads: Getting Cozy: What do you need to be here fully?]
Let's start with a ritual for getting cozy. For finding a position that allows you to follow this input. What do you need to be here fully? Is there a pillow that would help you to rest more comfortably? A stim toy that you would love to play with? Would it take away some pressure to close your eyes? Was there too little time to get some water before this workshop started, and would you want to get it now? Is any part of your body sore and would massaging it with your hands be nice? I'll wait for 3 minutes, so we can get settled and all arrive here together.
Before I share about my work, I'll begin with some frameworks and terms that we will engage over our days together.
A lot of the work that I do is in response to the system of oppression that I practice towards unmaking: Ableism. To center disability justice as practice, Ableism is the system that must be unmade so that disability as a site of multifaceted creativity can be invented and made with. Disability Justice as practice resists ableism as it intersects with other structural oppressions like racism, classism and (hetero-, cis-)sexism.
[The slide reads: Ableism is a form of structural discrimination that is built on the belief that there is a good and normal way of being human, which is to say: a nondisabled way of being human. Ableism functions as a dehumanizing system that favors nondisabled people at the expense of disabled people.]
A scholar who's work I follow and who works on ableism and technology together is: Fiona Kumari Campbell. Campbell (which is on the slide) [defines ableism as "a network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as perfect and species-typical, and therefore essential and fully human."]
Ableism paints being disabled as being less, or less fully, human. As Tanja Kollodzieyski emphasizes, ableism is determined through judgements and imaginaries that nondisabled people project onto disabled people. As she explains, these imaginaries are often passively formed through negative media representations or ignorance, and are rarely reflected upon. Ableism means that nondisabled people understand these imaginaries as factual knowledge and consider them more accurate than what disabled people share of our experiences. Ableism shows in day-to-day-interactions like infantilization, and in structural issues such as access to healthcare, education and employment. It is important to remember that ableism affects everyone: we are all socialized in an ableist way, as Luisa L'Audace reminds, this creates more vulnerability for disabled people, particulary when multiply marginalized. And this perpetuates ableist beliefs among non-disabled people who aren't prompted to reflect on their biases, because of ableism. The work I do insists that we can work on changing ableist structures and beliefs.
Disability Justice
I center accessibility and disability justice across my work. I work with the definition of disability justice coming from the BIPOC Performance Collective, SINS INVALID who define Disability Justice as "Upholding and making space for non-normative bodies and minds". As a framework I take this as a methodological creative motor impacting how at every moment I can make more access, and more space for disabled communities' work, working through multiple modes of sharing and through finding ways to center caring and careful relational spaces within my work.
The Intersectional Disability Justice Network from Berlin speaks of DJ as: [Which is also on the slide "... an emancipatory global social justice movement that focuses on profound intersections of disability and ableism in relation to other forms of discrimination along race, gender, class, queerness, etc., as such interlocking dimensions of discrimination and exclusion can potentially reinforce each other at specific intersections."]. Disability Justice was developed in 2005 by Mia Mingus, Patty Berne, Stacey Milbern, and Leroy F. (Disability Justice Collective).
Technology + Ableism => Technoableism
Disabled people have a complicated history with technology. Technologies support many of us in gaining access. For example, the technology of wheelchairs can create freedom and joy in movement, like in the video we watched in preparation for this workshop where Sara Hendren speaks about her collaboration with dancer and choreographer Alice Sheppard who made a ramped stage for the performance of their work, Kenetic Light.
[On the screen you can see two images of Alice Sheppard and Laurel Lawson, two dancers who are also wheelchair users rolling around on a ramped stage.]
Technologies not made specifically with disabilities in mind such as online chats create remote access and text based ways of communication for disabled communities, who can then participate online and/or from home. Other technologies are inaccessible because they rely on nondisabled functioning of body and mind: like when websites can be only navigated through sight, or when captchas require high speed identification of objects to prove that a user is "human", or when online conferencing technologies only provide captions in their paid versions of their programs. At worst, technologies can perpetuate ableist beliefs, such as the idea that disability needs fixing or that nondisabled ways of doing things are better. This is called technoableism.
[On the slide is the word "Technoableism" and the definition of it from Ashley Shew.] who writes: "Ableism (discrimination in favor of nondisabled people and against disabled people) impacts technological imagination. Like sexism, racism, and other types of bigotry, ableism works in insidious ways: by shaping our expectations, it shapes how and what we design (given these expectations), and therefore the infrastructure all around us." Technoableism means that often nondisabled people invent technologies for disabled people instead of with us. And often these technologies use a rhetoric of empowerment, while in reality they reinforce ideas about how a body is supposed to function.
One example of technoableism [content warning: it's ableist] are exoskeletons that wrap around the body of a person with a mobility disability and bring them into an upright position to make motors guide their legs into performing walking movements. Exoskeletons are very expensive and require high maintenance. A quick online search on this technology shows headlines like: "Watch an Exoskeleton Allow the Disabled to Walk". This technology positions the ability to walk as an ideal and ignores the fact that wheelchairs, a technology invented by the disabled parapalegic watch maker Stephan Farffler, already exists.
Another example is a Google Glasses application that "helps" and "trains" autistic children to hold eye contact and to read facial expressions. This is ableist, because it places autistic people's ways of socializing as less valuable. It sets a standard for autistic children to become like their nonautistic peers and to "compensate" for what this technology defines as a deficit. Instead of finding ways to communicate between people of different neurotypes, or to shift social norms around what kinds of communication is good and welcome, the responsibility to assimilate is placed on disabled children to express themselves according to allistic (non-autistic) norms.
Unsurprisingly, ableist technologies are mostly developed without disabled people on the team. Accordingly, in my practice, I practice with what happens when disabled people and our accomplices make technologies from our lived experiences and for us.
To describe the kind of work that I do, often as MELT with my collaborator Iz Paehr. I have been working on a framework around: anti-ableist technologies. [Anti-ableist technologies are not just about making things accessible, instead they intervene into ableism as a structure.] Anti-Ableist Technologies seek to intervene into technological imaginaries and practices by pushing for political change within digital and infrastructural practices. I want to make technologies that aren't just accessible - but that are actively anti-ableist. Anti-Ableist technologies put forward ways of moving through the world that are frictional to the status quo, and that are anti-assimilationist, which means that they don't ask for disabled people to change, but instead they demand for the conditions to change.
ACCESS POINTERS
[Slide: Access Pointers dance across the slide - the pointers pointing out incessibilities in an industrial site.]
A small recent project of MELT's connected to the energy of anti-ableist technologies is called 'ACCESS POINTERS'. An ACCESS POINTER is a pointer folded from a piece of paper that literally points out access barriers. In a pointed moment of an ACCESS POINTER workshop we asked participants to 1. Move through a building and consider: What is accessible here, what is not? For whom?; 2. Choose one inaccessible element / barrier and become its accomplice. Write onto the arrow what the barrier is. Add what would need to be done to remove the barrier. 3. Fold this paper into an arrow and position it so that it points towards/onto the barrier.
Through pointing to the barriers in any space this practice sensitizes people to the barriers that we live with and amidst. Through noticing, naming and pointing out barriers in spaces, they can become everyday topics of discussion, and transform apathy into sites of situated resistance and transformation.
ACCESS SERVER
Another example of 'anti-ableist technologies' that refuse technoableist frameworks is ACCESS SERVER, another project of mine with MELT.
[On the slide is an image of a server stack with diffrent arms reaching out of it, a bubble on the end of each arm.] To start talking about access server I will share two dreams from my practice of dreaming up accessible cultural institutions. When I think of visiting the accessible institution, I feel excited and calm because I know how to get there, what to expect and most of all: that I am welcome – and that in fact, everyone is welcome (as our being welcome is interwoven). The accessible institution communicates that there are ramps, braille signage, and multi-modal access in audio, visuals, texts, sign language, as well as accessible and gender neutral bathrooms.
The accessible institution asks for your access needs, because they are ready to care for the replies. Beyond a list of practical things that are centered, the ethos of the accessible institution is one of care and centering accessibility as a mood. When accessibility is the mood there is space for joy, collectivity and for new concerns to emerge – and when they do emerge, there is time available to take them into account and funding allotted to care for meeting expressed needs. The accessible institution knows that there is no feminism without considering disability. There is no de-colonial work if it is not work dismantling ableism too and vice versa. There is no Disability Justice work without anti-racism. This practice of dreaming emerged from Iz and I asking ourselves: what dreams for accessible cultural institutions do we need to make more radical and more direct demands of cultural institutions today?
ACCESS SERVER is an email server that anonymizes, collects and financially compensates access requests that disabled people send towards cultural institutions. This means that any disabled person writing an email to a cultural institution asking for access can do this in an anonymous way through ACCESS SERVER and will be paid 20€ for their labor. [The slide shows an illustration of an example email which is sent to request@access-server.com, has the subject line "ACCESS REQUEST: Sign Language?" and is addressed to hello@culturalinstitution.com. The email reads: Dear <cultural institution>, I was hoping to join your event <> as it is relevant to my research practice. Will there be International Sign Language interpretation available? With my best wishes, Access Seeker. The email quotes another email from a previous disabled email writer who wrote: Hi <cultural institution>, I would like to visit your exhibition <> with my electric wheelchair. Can you please tell me if doors and pathways are accessible? With my best wishes, Access Seeker]
ACCESS SERVER does not exist yet, it is still a work that is in the prototyping and design phase, everytime I present on the projct I think of this as part of my research on how the project might unfold. Although the project's target has been European cultural institutions, I find that it comes to bear on structures within universities as well. Often, [in European cultural institutions, there are no ramps, no captions, no sign language interpretation, no gender neutral bathrooms, no braille signs, no rest areas, no breaks, no support for care workers, no image descriptions and other things that make it possible for disabled people to visit, work and be in cultural institutions.]
When Iz and I talk about ACCESS SERVER, we say that this project is conceptualized for disabled people.
Disability
[On the slide the question 'What is Disability?' alongside three summaries.]
So when I say Disability, what do I mean by that? There are different definitions of disability in the world. Probably every disabled person understands their disability and the meaning of disability a little differently. But there are some common definitions too.
Two of the most famous frameworks of disability are the medical model and the social model. The medical model understands disability as located in specific bodies. Disability is diagnosed by doctors, and the goal is to fix them or to make disabled people adjust to existing environments. Disabled people have resisted this definition of disability for a long time, and accordingly formulated the social model of disability in the 1980ies.
The social model of disability states that people become disabled by society. This model understands environments as disabling. For example: steps without a ramp disable wheelchair users. In the social model, it is society that creates a disability, not a person's impairments. However, disability is still something negative here: something that prevents someone from participating.
In the work that I do as a designer/artist and in our time here together, I invite you to work with a third framework, Disability Justice. Disability Justice from SINS INVALID states: “When we speak of disability we are celebrating the brilliance and vitality of a vast community of peoples with non normative bodies and minds, whether a disability is visible or not. This includes though not limited to, folks who identify as disabled, chronically ill, Deaf, mad, neurodivergent, and more.” I work with this definition of disability because it places the authority to identify as disabled with disabled people, it undoes any stigmatizing of identifying with disability and because it emphasizes that disability is not just something that happens in a body, or between a body and an environment, but that disability is culture, community and solidarity. In this disability justice framework, disability is understood as valuable site of knowing, feeling, and reinventing the world.
Next, I would like to talk about access. [The slide reads: Access describes the conditions under which people can approach or be in a space. When you can fully be in a space, it means the space is accessible to you. Access requests describe what people need to be in spaces, be they online or physical.]
With ACCESS SERVER, access is described as what people need to fully be in a given space. Access for all community members takes time as well as commitment. Access is always a work in progress, and access can be love (Wong et al., 2019). I practice with access as a value that cares for and understands disability as a desirable part of the world and that requires solidarity. Access is a framework that understands that interdependence is a political technology (cf. Crip Technoscience Manifesto). Access can feel intimate: like the "eerie comfort that your disabled self feels with someone on a purely access level", as Mia Mingus describes it (2011) and it can be entirely practical, like the need for captions to understand and participate in a conversation.
Access requests describe what people need to be in spaces, be they online or physical. For example: you may need a rest area if you are chronically ill, autistic or breast feeding. Having to ask for access in and of itself is already a barrier to being in a space. How can you be sure that your request will be cared for, and that you won’t be discriminated against for bringing up a topic that institutional workers might feel unprepared to answer or defensive towards? To care for these requests ACCESS SERVER anonymizes emails, from disabled people writing access requests, and works with cultural institutions to grow their access knowledges so that those who want to make access are well resourced to do so. ACCESS SERVER centers the agency of any disabled person who wishes to write an anonymous email about what they require, and it pays the person writing this email 20€. For example, as people requiring closed captions on video calls or on live streams, I would ask cultural institutions to enable automated captions or organize a captions worker in order for me to attend an event they are hosting. All the while working towards contexts in which this information would be available already so that nobody would need to ask.
To let fellow disabled people know about ACCESS SERVER project, Iz and I have made a trailer to explain the inner workings of the project. This trailer for ACCESS SERVER can be visited in two places, our website http://meltionary.com/accessserver.html and on PeerTube https://tube.systerserver.net/c/access_server/videos. PeerTube is a peer-to-peer video sharing platform that we were invited to engage with by Systerserver, Anarchaserver and Lever Burns – three feminist technology collectives working to set up non-big-tech online platforms for trans*feminist projects. In collaboration with these trans*feminist server projects, we began to unfold the possibilities of working with accessibility while centering what we as disabled people need from technical tools.
[A diagram of how Access Server works is on the screen.]
Another work that I would like to share with you from my practice as MELT with Iz Paehr is called, COUNTING FEELINGS. [On the slide is an image of a few works from a COUNTING FEELINGS exhibition in Cologne, Germany. There is the work "Pop Up Disabled Data Center", which looks a bit like a tent, "Beginning nodes for revolutionary data practices or groundwork for reimagining data" that has statements on the floor and small clay sculptures and the third "Data Set of Weight" which is a weighted blanket/data set.]
[And on the slide now is the same work, "Pop Up Disabled Data Center" shown at the Regenerative Energy Communities project that Helen organised alongside with their colleagues: Daniel, Miranda and Eric in Zürich last summer.]
With Counting Feelings, our initial question was: How and with what intentions are the experiences of marginalized groups quantified and counted as data, and how can data be used to recount different -or other- stories? From this question we learned about quite some data practices that are not what we would wish for - meaning that many data projects that claim to speak about trans*gender, disabled and autistic lives are infact not authored by us, nor supporting our thriving or well being. The paradigm within larger health research frameworks is often still collecting data about 'others' without any of those people on the reseach team at all.
Recognising this as harmful early on, this turned into another question: What kind of resistant data practices can be crafted that refuse to foreclose our experiences? What could data come to mean were ableism and anti-queer sentiment not the primary forces of our everyday? We realized that in order to answer this question, we had to understand but then rewrite what data is currently defined as, and to do so we needed to invite some lived experience experts. We are defining lived experience experts as people who have lived experience that shapes their perspective on an issue. And we are unhooking 'data' as a practice that only serves to quantify easily transferrable information - as its current function under capitalism, ableism, racism and anti-queer sentiment is. Rather we are considering data as a series of processes that can sensorially share experiences between peoples and assemble commonalities towards better understanding of community experiences. Towards these investigations, we hosted three workshops on the role of data in the everyday and invited and paid our our colleagues who identify as Trans* and/or disabled.
In these workshops we spent time dicussing how our lives intersect with data practices, and what would be actually needed in terms of data to remove barriers. Many participants were already engaged in data collection processes without them being named as such, like collecting and sharing lists of accessible/non-pathologizing doctors or regularly taking note of their health. These habits of collecting often emerged from a lack of information. In this work we focused on presencing, and consent practices which we took to make space for people's experiences, without applying or imposing a scientific framework of comparability and analysis on these conversations, and without recording in convential ways. Consent is centered in this: Stories stay within the room they are shared in, unless an explicit decision to share them is made. This makes presencing a non-extractive method that resists harmful research and artistic habits that extract and decontextualize knowledges of marginalized people. Our method of presencing relates to a question posed by Arseli Dokumaci in the anthology Crip Authorship: Disability as Method "[...] whether there could be ways of approaching disability as a methodology; modes of considering the disabled body as something to think with rather than to think about."
In the last one of these workshops we composed one sharable outcome with everyone, a data set titled "Data Sets and Lists we wished existed".
[On the slide there is a close-up photo of a booklet resting on a flat pillow made from curled-up white plastic ropes. The booklet's thick grey pages are held by a metal ring. The font OpenDyslexic reads the letters: Data Sets and Lists We Wished Existed. Collection made during the 3rd Counting Feelings workshop with Trans* and disabled participants.]
[Some examples from this data set, are on the slide. "a list of accessible art/cultural institutions and potential access need options to request at such institutions (e.g. earlier opening times for neurodivergent viewers); data on alternatives to big tech access tools (captioning for example); a list of queer & disability focused parenting/reparenting resources, data on re/parenting; data on access barriers to work, employment and freelancing; data on institutions (non) attempts to reduce barriers; lists of accessible practices for precarious art/design workers; ideas about how to move towards sustainability"]
In this research project a few other works emerged, one I wanted to also briefly share about is called Data Set of Weight. [On the screen is this work which is a weighted blanket with many pockets, each of the pockets carry a specific material that has been weighed, you can read all of the materials and their weights in a dangling booklet.]
To experience this work, you have to lay under it and consider what kind of data set this feels like, by engaging the neurodivergent and queer technology of calming down by laying under a heavy weighted blanket. A sensorial and tactile experience of knowing the weight and feel of something by inviting visitors to lay under this blanket focuses on embodied knowledges as just as important of a way to know something as other modes of knowing.
This work, and also the tactility of the 'Pop Up Disabled Data Center' - which you can see [on the slide here are two images of this work, one including bubble wrap that could be popped if someone touched the work, as well as embroidered braille which holds messages, especially for those who read braille].
In Counting Feelings, tactility, worldbuilding, and accessibility move together by foregrounding multiple sensorial modes of touching feeling, knowing and accessing. In this work we considered data as a series of processes that can sensorially share experiences between people and assemble commonalities towards better understanding of community experiences. This work engages anti-ableist technologies through developing practices of data sensing, naming and feeling out that resist foreclosure and compile community based ways of collectively sensing and naming our worlds.
One last work that I wanted to share with you is a recent comission that I worked on myself for some colleagues at Constant, an association for Feminist Media in Brussels. I bring it up last because I think, this score "Towards Life thriving relations: Trans * Feminist Disability Justice Action for Institutional Practitioners" -- invites good and bad idea invention for tooling up on 'how' and 'what to do' when thinking about changing barriers in any institution / situation.
[On the slide are two images one is a a group of disabled protestors holding a sign that says "Everybody needs equal access, and next to it is a concrete piece of a curb that has been chopped away from the street by disabled activists in Denver, historicized within a museum in the United States. ] I also think this score has resonance in what we will do over these few days. This score is informed by Chela Sandoval's theorizing around the term, Oppositional Consciousness, which considers different feminist tactical strategies.
Through offering different situations that sit at the intersection of accessibility, technology, city relations, institutional frameworks, care labor, finances etc -- the score proposes problems that have no one easy solution and sits with that as the work of access making. An example from the score is here:
You are given the SCENARIO:
There is no curb cut outside of your institution: wheelchair users, folks with suitcases, anyone pushing a stroller, anyone with reduced mobility — all cannot or struggle greatly to enter the front door.
There are different TACTICAL STRATEGIES you are invited to engage:
EQUAL RIGHTS — Your institution comes together as a group with local actors and begins a petition to the city to get a law written that all curbs in your city must have a cut.
REVOLUTIONARY — As workers at your institution, you decide to invest in sledgehammers for each of your employees. Everyone brings their sledge hammers around with them in their daily activities, and when they notice a curb that needs to be dropped, they start hammering at the concrete/rock until it crumbles.
SUPREMACISM — As workers at your institution you have noticed how there is no curb cut outside of your front door. You begin collectively drafting a theory about why ableism in the built environment is shameful and denounce the moral grounds upon which this has continued.
SEPARATISM — Your institution and its workers decide to leave the building it has been in for more than 50 years. You move to a new building that is fully wheelchair, ramp, reduced mobility accessible with elevators and automated everything.
DIFFERENTIAL — Two working groups are set up to consider what to do about this problem. One focuses their attention on speaking with other nearby institutions to see if there could be a collective action of curb-cutting done with the city. Another looks into what would need to be done to change this in the short and long term ie: getting quotes from builders, buying a mobile ramp, hosting events in different locations so that sometimes wheel accessibility is guaranteed.
In this score I invite you to become companions to the barriers around us and to consider different modes of organizing around and against these barriers. To come up with ideas, some good and some bad that resist the notion that there is nothing to be done or that there is only one very expensive solution for how to think about accessible and disability justice oriented practices.
This practice of accompanying structures that must be changed because they are embedded within systemic ableism and yet are difficult to be challenged because of so many frameworks that maintain persistant exclusion is the kind of work that we will get into over today and through Friday. And is the kind of practice based reseach praxis that I wish to invite you into.
To transition a bit into an overview of the days. Today right after this input I will invite everyone to ask any quick questions you might have, and to make a tactile response - to take a piece of clay and model a texture that you would like to touch (once the clay dries) and also a second small piece that feels like a response to this input. You can set them over here.
Tomorrow we will spend some time with an input from Helen around practice-based research practices, and then will work on tooling up together, learning some tools of access making. As part of ableism itself is that some tools of access making are not yet considered part of our standard practices, so we will learn about them together and practice with these tools to unmake these ritualised ableisms or keep learning with these tools to get other perspectives on them, if they are already things you work with too.
Tomorrow and Friday we will move into making a tactile (access) prototype where we will play with different tactilities, description practices and contextualising modes so that by Friday at the end of the day we will have together made a sculptural object that will remain here in the lab to continue to be an agent of situational access, change making.
More soon, and there is also more structure in our pads for these days, but that's all for my input - for now.
Many thank yous for your time & attention :)