The Future is Disabled by Amble Skuse & Shelly Knots: Crip Futures Collection
Disability Pride Month initially started as a single day of celebration in 1990, the year that the Americans with Disabilities Act (ADA) was signed into law in the United States. The city of Boston held the first Disability Pride Day that year. Then, in July 2015, after years of advocacy, the first official celebration of Disability Pride Month was held, commemorating the 25th anniversary of the ADA. Today, we recognize Disability Pride Month as a cultural and political movement built on decades of international organizing, resistance, and care work.
The Catalyst is a blog and community hub for the work of healers, organizers, artists, and storytellers. Throughout Disability Pride Month, artists, writers, activists, and healers were invited to submit their work for our Crip Futures collection. The following was presented by Amble Skuse & Shelly Knotts at the Radical Futures Conference held by University College Cork (UCC) as part of their Radical Humanities Laboratory in 2024. Our editor has made minor formatting and grammar edits for clarity, but otherwise the presentation is largely unchanged.
A photograph of two wheelchair users with artistic yellow, blue, and green lighting. The Asian person in the background is in focus while the white person in the foreground is blurred. Photograph taken by Cottonbro Studios and distributed on Pexels. Supplemental use at the discretion of the editor for this feature on The Catalyst.
The Future is Disabled
Amble Skuse & Shelly Knotts.
Presented at Radical Futures Conference, UCC 2024.
1. The Future is Disabled
This presentation considers a post-capitalist future that learns from Disability Studies theories of the Social Model and Access Riders. We will discuss how industrialized working models have created damaging hierarchies, maintained systems of power, and excluded people from society.
The networked age offers the potential for new distributions of power. However, transitioning into it, we have instead replicated the capitalist models (streamlining, optimization, and human disposability), creating the conditions of global technocracy. We are all only not-disabled as long as we can keep up with the demands of late-stage capitalism. We look at opportunities offered to us by the networked society, and how, by centering the needs of the person, we can create interlinked, supportive, and humane ways of working.
2. Capitalism Is Inherently Ableist
Surviving disability means addressing the inherent ableism in capitalism.
The ableism inherent in our society dates back to pre-industrial societies, where communities were reliant on agriculture. If someone were physically or mentally impaired, it could spell disaster for the family. This is then amplified during industrialization, where efforts were geared towards maximum profit for the owners. With labour laws in their infancy and little social support, an impairment could still spell disaster for a family.
Capitalism fundamentally determines the value of a human by their capacity for productive output, in doing so, vilifying those who require support to survive. In the 1980s, political ideology shifted towards individualism, away from community action, and demonized the welfare state, partly as a way to dismantle workers’ rights. The lie, of course, is that taxes, which pay for infrastructure, are far from an individual effort, and that we are all reliant on this communal base in order to prosper.
Industrialized and capitalized structures dehumanize employees, seeing them as replaceable, with a job description serving as a generic template for work, which the next incumbent would adopt. This streamlines costs, reduces disruption to production, and maximizes profits for the company, whilst devaluing individual capabilities and skillsets.
3. Capitalist Society Creates Boxes For Streamlining
Yaneer Bar-Yam explores how organizations are systems of humans influencing each other: “in human organizations, coordination occurs because individuals influence each other’s behavior. The influence is often called control.” Bar-Yam describes changes in control hierarchy: “The traditional structure for the past few thousand years is a control hierarchy. In a control hierarchy, actions must be decided upon by the ‘controller’” (Bar-Yam, 1997). Messages are passed through the controller in order to maintain the focus of the organization.
4. Designed By Certain Types Of People
In a Hierarchical model, where the decisions are made by one controller, those decisions will be influenced by this controller’s experience of the world. In this situation, there is a high probability that the needs of the disabled person will not be considered, either due to a lack of awareness of the controller or in order to streamline activity to reduce costs.
5. Suits Certain Types Of People
In most circumstances, decision makers will replicate an environment that fits their experience of the world. This tends to elevate those for whom that system works into positions of control. The new controller then perceives that the system works, and so replicates it. Those for whom the system does not work, they do not proceed into positions of control, and as such, their voices are absent in system design processes.
6. Creates Disabled People — Those Unable To Fit Into Those Boxes
Disability is ‘created’ by this mindset of streamlining production and interchangeable workers. The system enforces particular ways in which people “should” behave in education, employment, and social settings. Those who can step into those normative boxes comfortably are not disabled. Those for whom those boxes cannot and will never fit because of their physical or mental impairment become, by default, disabled.
7. The Social Model Of Disability
The underlying concept of the Social Model of Disability is: the way that society is organized disables the person, not the individual’s impairment. For example, it is not my impaired legs that disable me, but the fact that there are stairs between me and my desk.
8. Disabled People Have To Address This So As Not To Carry The Burden Of Being Disabled
A key part of dealing with disability is to understand that the way society is organized is actively preventing us from contributing something of value. Surviving mental health issues that are caused by toxic capitalist structures requires us to recognise that our worth is not inherently connected to our productivity.
Surviving disability means addressing the inherent ableism of capitalism. It requires us to shift how we think about productivity from quantitative production to qualitative production. If we begin to measure value not by how much a person can produce, but by what they can offer, which is different, interesting, and useful to humanity and the planet, this upends the assumption that Disabled people are a burden on society.
9. The Hybrid Model Is To Request Adaptation — Compromise
In the hierarchical “controller” model, we may see that the structure is one-size-fits-some, creating difficulties for those who do not fit the template set by the controller. In a Hybrid model, we may see a desire to adapt an already existing structure to accommodate a person for whom the system does not work.
Disability access begins by asking how we could adapt structures to make them more appropriate for disabled people. This model considers that disabling structures can be adjusted in order for a disabled person to access them. Adaptation requests are, however, often counteracted by the fact that they introduce inefficiencies to a system. So, often, the required resources or capacity are not allocated in order to enact the access adjustments.
10. Adaptation to Original Mistakes
Disability access in this (hybrid) model requires additional funds, because we are adjusting a system that was poorly designed, without human variation in mind to begin with. This reinforces the idea that access for disabled people is expensive and, therefore, a burden to society.
11. One Place We Can Think Outside Of Capitalism Is Disabled Studies, Because We Are Placed As Onlookers
As disabled people have been excluded from systems of education, employment, and social life for so long, they are in a unique position to critique them and to offer strategies for working differently.
We can reference the work of disabled scholars around hierarchy, productivity, value, human worth, exclusion, use of time, and connectivity in order to unpack the replication of these harmful systems and find ways in which we can move beyond destructive capitalist mindsets. As Ellen Samuels and Elizabeth Freeman put it in the introduction of Crip Temporalities (2021), “Crip time is ... a time of survival and even of world making, and offer[s] both strategies for surviving the normative violences of capitalist time and, in the key of liberation, strategies for inventing new models of work, sociability, and being.”
12. The Arts — Think In Terms Of Quality and Quantity
Because so much work in the arts resists capitalist frameworks, this is somewhere where we have been able to develop new working structures that incorporate the needs and values of disabled people. For the majority of artists, it is the quality of work that matters to them, and they are less concerned with productivity, quantity, and profit. Artistic values include creative development, developing meaning, experimentation, exploring novelty, expression of voice, and connection with other human beings. The creative sector is almost uniquely placed to think about what we need to do our best and most authentic work, and not just be our most productive selves.
13. Revolution in Disabled Arts Practice — Access Riders
Disabled artists are creating a culture that prioritizes the needs of the individual, uses inclusive design methods, and develops projects in compassionate ways.
One approach that disabled artists have adopted is the Access Rider. The rationale of the Access Rider is that each disabled person will have different requirements to the next. In the rider, they identify the things that would enable them to engage better in a project or work structure. At best, Access Riders act as the starting point for a negotiation of working practices, rather than as a request for adaptation of an existing structure as discussed in the hybrid model above, and ‘one size fits all’ structural changes are avoided.
Editor’s Note: An access rider or access statement is a document that outlines an individual's specific access needs to ensure they can participate fully and comfortably in a given situation, event, or task. Alexandria Hemsley created and published a template Access Rider through Disability Arts Online that can be accessed here.
14. It All Starts With Adaptation Access — What Do You Need To Do Your Best Work?
The disabled person makes a list of requirements and measures that would enable them to do their work, such as level access, a disabled parking space, a sign language interpreter, paperwork all supplied in audio format, etc. Examples of measures that may enable someone to do their best work could also include remote working. As many disabilities are fluctuating and involve pain and fatigue, disabled people often have to request things that will mitigate that pain and fatigue. In this example, working from home might mean no longer having to deal with travel, navigating the (physical) space, engaging with others, background noise, etc. This may, in turn, increase the capacity to work, and, more importantly, increase the quality of the work and of life.
This incorporates a form of qualitative value alongside the quantitative. This becomes a fundamentally anti-capitalist position because it prioritizes quality of life over the amount of output.
15. The More Disabled People Involved — Increasingly Complex
The more disabled people who are involved in a project, the more necessary it becomes to redesign existing structures. Where there are one or two disabled people involved, we may be able to make adaptations with some success; however, as the number of disabled people in a project increases, the complexity of adapting something becomes overwhelmingly complex. The futility of trying to maintain the established structure of ‘Controller Down’ instructions becomes apparent when we try to make a myriad number of exceptions to the rules.
16. Composing For Groups of Disabled Musicians
As a creative example of this, when writing music for a group of disabled musicians, we need to consider each person’s disability, how they request their part to be written, and any additional needs relating to rehearsal and performance structures and contexts. Blind players may require their parts in advance and in audio format to give them adequate time to learn the parts by ear and memorize them. A player with hypermobility may require their parts to contain regular rest and recovery breaks. A player with a limb difference may require certain stretches and chords to be avoided to suit their physicality. A player with chronic fatigue may be unable to attend long rehearsals.
Considering each player’s needs gives the composer a unique opportunity to work in a human-centered way, building from the players outwards. We cannot assume that placing a score in front of all musicians and sitting through 4-hour rehearsals will work; we need to use a wide range of approaches and skills to meet the needs of the performers and maximize how we use their musicality. This likely involves meeting the musicians and working with them to develop something that suits them both musically and physically.
Working in this way reflects the Social Model of disability, and sits in opposition to traditional classical music composition processes, which assume that each musician will have been trained to a particular “standard” with a certain technique, and will deliver an accurate rendition of what the composer imagines. (It’s easy to see how this model replicates the controller model of capitalist production.)
17. Leads To A Complex Networked Structure — Working From The Ground Up
Working with Access Riders in such contexts enables us to start the creative process by first consulting everyone in the group. When we begin with the concept of each individual defining how they undertake their best work, we can design the working environment from the ground up. Extrapolating this process over multiple humans with different needs leads to a networked structure, which then acts as the basis for a negotiation of the best working structure and practice for this particular group of people.
In adopting Access Riders, Disabled artists may have found a way of ‘hacking’ the hierarchical structure of capitalism and transforming it to a networked model. The more people in each group who use Access Riders, the fewer ‘normal’ models apply, and the more the structure becomes a product of a universal design process undertaken by those participating in using the system.
18. Networked Model — Create The Structure Which Best Suits The People Involved
In the networked model, each person is a ‘node’ in a system with a unique set of connections to other nodes. In a working context, we could imagine this as colleagues who, instead of communicating via a controller and working in standardized formats, respond directly to their working colleague, creating a dialogue about how to best organize themselves to work together. How two people in an organization respond to each other may be completely different from the next two. This approach is, of course, more complex, requiring dialogue, negotiation, and agreement between many individuals. It may not be efficient in the ways that hierarchical capitalist structures are, but it does create a space for people to define a way of working which enables them to thrive and contribute.
19. A Vision For Post-Capitalist Structure — Think Like Disabled Artists
We are creating an increasingly networked world, on a societal level, as technology now enables many of us to connect directly with individuals all over the world without waiting for a “controller” to mediate our interactions. Each person can interact with the network around them on their terms, becoming a node within a system that is growing in complexity as our connections expand and diversify. The issue is that we have subconsciously replicated the structures of industrialized society with uneven reciprocity between nodes.
This networking of society offers an opportunity to develop thinking about disability as something we deal with together. Using our understanding of the social model to influence our networks, we may be able to eradicate the concept of being disabled by society, and think of every one of us as disabled in some way, with complex needs in order to thrive.
20. In doing this, we refocus away from profit, away from seeing people as part of the machine, and recognize the humanity in each other, ask for what we need, and provide that for each other
How can this enable us to imagine a radical future? The first step is to imagine a workplace where it matters if the worker is doing their best work, not just their most profitable work. A world in which we value the quality of contribution from each individual, and where the well-being of the worker is valued as a human right, as opposed to something secondary to the pursuit of profit.
Disabled Access Riders teach us that every individual is different and that to thrive, they will need to outline what works for them. We can incorporate into our thinking that each person is an individual with their own way of finding happiness, peace, fulfillment, joy, and will have their own unique contribution to the world, if given the right conditions and environment.
Amble is a composer and sound artist who uses disability theory, body sensor technology, spoken word interviews, and electronics to create unique sound works. She is interested in the interface between the disabled body and the exterior world, and has explored this through numerous sound walks using her wheelchair. Amble is a Royal Philharmonic Society Composer 24/25, recently won a Special Commendation Daphne Oram Award for her work in electronic music, and was selected as Scotland’s representative for the International Society Contemporary Music Festival 2024.