Not Born But Made
Considering the argument that disability is a product of interactions with a disabling world.
Preamble
I do not hold a disabled identity. Most aspects of public life are accessible to me without much intervention on my part or as a result of adherence to legally-mandated infrastructure. And with the exception of two suspect employers and periodic public bathroom experiences when my gender is especially mysterious, I very rarely encounter barriers to participation in anything at all. But I am lucky in this regard.
If, say, my eyesight wasn’t 20/20, I might need to spend a few hundred dollars a year on glasses and contact lenses, or I might use a screen reader to best take in digital content. If my temporal lobe doesn’t quite know how to make sense of the messages coming from my vestibulocochlear nerve, life may be a bit quieter for me than it is for others. How about if I didn’t grow a right leg in the womb, or I underwent a medical amputation in adolescence? What if, in a different universe, one of my chromosomes organized itself differently and “intellectual disability” is written in my medical chart, forever influencing clinicians, teachers, employers, peers, and service providers?
Some of these examples are commonly understood to be disabilities, while others aren’t so much. Some are invisible, socially accepted, or spotlighted, depending on where a person is and who’s asking, under what conditions. What I want to look at in this piece is how the experience of disability, as well as disabled identities in some ways, can be produced by the ways that a person must navigate what I will describe as a disabling world.
I want to draw your attention to a couple of things before we get to this really juicy discussion. First, this piece is a final integrated project for my Inclusive Physical Activity class (hi Cathy!), and its purpose is threefold:
To demonstrate how different experiences of disability and identity interact with different aspects of our world, namely the social and physical environments in the context of participation in public life;
To illustrate the role of public policy in forming categories and experiences of disability;
To further explore theories and interpretations of disability from scholars and advocates I respect, with a slant toward the role of political economy in both prescribing and moderating the experience of disability within in a North American context.
Second, I expect this exercise to be uncomfortable. Talking about disability as a student or a researcher necessarily requires disclaimers and caveats to ensure what is said reflects the intended meaning. I especially want to be mindful of not speaking into the experiences of disabled folks when these are populations who often experience harm at the hands of purported researchers and practitioners seeking to “study” them1. My intention is not to use disability as an analogy for otherness or deficit, but rather as a specific descriptor for how a person comes to interact with our world, and how people in general understand their participation in public life. What interactions between a person’s lived experiences and the features of our world serve to allow or inhibit comfortable, barrier-free participation?
I’m setting out to examine how the nature of disability as an experience might change based on the context in which it exists, and the dimensions of pressure that ease or exacerbate its effects. This is a project of finding connections and identifying change, but it’s not one of disrupting or dispelling important aspects of self-identity.
Part 1: What is Disability and Who Decides?
In 2002, Dr. David Pfeiffer wrote a piece on the philosophical foundations of disability studies from the Greco-Christian tradition2 that ultimately serves as a starting place for understanding how disability can be described within the parameters of Western medicine and public policy. He argues for the abandonment of the deficit model, which positions disability as a condition that must be “corrected” in order for the person to be “normal,” and thereby able to learn, work, and be an otherwise healthy and productive member of society (whatever that means).
Disability does not refer to a deficit in a person. Disability refers to a value judgment that something is not being done in a certain, acceptable way. Just as race is not a viable biological term and has no "scientific" definition, disability has no "scientific" or even a commonly agreed upon definition. Disability is not based on functioning or normality or a health condition, but on value judgements concerning functioning, normality, and health. In other words, the term disability is based on ideology and social class.
False dichotomies like normal/abnormal and healthy/unhealthy serve to punish people for their failure to meet normative societal demands and absolves the constructors of public policy of their responsibility to maintain equitable access to the means of basic human dignity. After all, if someone experiences exclusion on the basis of their disability but some mental gymnastics can re-frame that exclusion as a necessary and acceptable burden in the larger pursuit of the ideal neoliberal society, then the illusion of an individualistic and meritocratic society remains intact. Under these conditions, it is always the responsibility of the individual to meet their own needs. If they fail to do so and therefore enter into negative interactions with employers or the state, then the blame can fall to the person as a symptom of their “deficits”.
Astra Taylor’s 2008 documentary Examined Life: Philosophy is in the Streets includes a segment with disabled artist and activist Sunaura Taylor in conversation with philosopher and gender scholar Judith Butler. The two discuss disability, individualism, and contend with how disability is socially constructed.
Carleton University’s Dr. Kelly Fritsch, critical disability studies scholar and self-described crip theorist, coined the phrase “neoliberalized biocapitalism” in a 2015 article3 titled Gradations of debility and capacity: Biocapitalism and the neoliberalization of disability relations. She points to the rapid advancement of biomedical engineering and life sciences as an engine for updating binary categories of disabled/non-disabled with “gradations of capacity and debility”. She contends that:
Debility and capacity are not absolute categories pertaining to individual bodies, but rather draw attention to what bodies do, their capacity to act, including their affective processes. Bodies are neither solely capacitated nor debilitated: there are gradations of debility and capacity.
I’ll be returning later on to an extension of Fritsch’s work, where she deliberates on how these gradations impact the idea of differential inclusion and the ways in which some may capitalize on “grievances” with the failures of inclusive practices. For now, though, her discussion of individuals’ pain, risk, and identity helps explain how power is distributed amongst the population. She describes how certain expressions of disability subdivide groups into smaller and smaller subgroups until the individuals are pitted against each other for the purpose of, for example, participating in oppressive labour models that only further reinforce the suffering of others.
Where framing disability using value judgments places the individual at the centre of their normative failures, this pervasive focus on the individual aspects of identity also emerges in the clinical, diagnostic, and self-identification aspects of disability. Granular conceptions of what makes someone who they are so often hinge on the nature side of the nature/nurture dichotomy, with lifelong labels based on genetic tests and predictions superseding lived experience.
In her publication Cosmic Anarchy, Dr. Ayesha Khan discusses how categorical biological essentialism has enforced prescribed limitations for virtually every component of our beings. She notes that if every person can be quantitatively evaluated on a matrix of hundreds or thousands of characteristics4 then they can inhabit both a wholly unique position within our social fabric and also one that is separate from every other person. To drill down to such a minuscule level to assign type is to internalize the notion that all of our traits are intrinsic, immutable, and resistant to purposeful and autonomous change.
As in discussions of sex and gender, for example, the idea of being “born this way” ultimately still reinforces cisheteronormativity5 and its institutional underpinnings without offering any liberation from oppressive social structures. Similar in application is the “right” way to be cognitively disabled or neurodiverse, which is via DSM-V diagnostic criteria. Medicine is a wonderful tool for many things; accounting for individual variation in needs and experience is not usually one of them. One of the more illuminating (to me) ideas about the connectivity between identity, diagnosis, and human epistemology is that, in Khan’s words, “much of the world exists incomprehensibly beyond that spectrum, by choice and not because we are too backward or uncivilized or helpless to know better”. Perhaps we as a species are too complex for the categorical parameters we use. But how would we otherwise make sense of anything? Khan reflects on the empowerment that can be derived from “acknowledge our vastness and our indescribable, uncategorizable, undiagnosable, imprecise, fluid, ungeneralizable, complexities that can never be reduced to biology”.
So if the prospect of making sense of disability from a place of discrete, personal identity poses a challenge, it follows that the ways in which institutions wield identity labels would be considerably more fraught because of the interconnectedness of life-sustaining services that are dictated by those labels. Canada continues to have both segregationist and assimilationist disability policy, while deploying structural eugenics6 under the guise of “dying with dignity” without the same material commitments to living with dignity.
A recent piece by Roni Holler and Yael Ohayon in Social Policy & Society7 communicates an important distinction when it comes to policy creation pertaining to disability rights:
When we talk about bureaucrats, we should not lose sight of the fact that policy implementation is often integral to the policy-making process. This is especially so in cases where the implementation stage is open to broad interpretations, leaving professionals with high discretionary power. Although this discretionary power is relevant to a wide range of social policies, this is particularly so in disability policy, as historically, the medical professions have played a hegemonic role in gatekeeping the allocation of social rights to disabled people.
So pathologies, diagnoses, and rights are closely connected, whereby the capacity to seek (or meeting the criteria for) social support and constitutionally-defined rights must be accompanied by the legitimizing forces of the medical fields. There is an oxymoronic flavour to this revelation, isn’t there? The people creating these policies are not the ones to moderate its implementation; instead, those who permit (or don’t permit) access to “proof” of disability become the arbiters of social policy.
We Regret to Inform You… (2015) is a short film by disabled filmmaker and playwright Heidi Janz. The film explores Janz’s baffling rejection for social assistance due to her “productive mind,” despite being profoundly physically disabled and requiring adaptive infrastructure and technologies to thrive. Here, Janz having “overcome” disability by attending graduate school and working in the arts have worked against her. The expectation of disabled people to languish in poverty and infirmity in order to qualify for assistance while the state withholds assistance to those who participate in society only serves to reinforce the position of disabled people as disposable in the eyes of their government.
Michael Oliver wrote on the social construction of disability in his 1990 book The Politics of Disablement. Disability, he contends, is operationally defined by public policy alone, meaning that the embodiment of disability exists exclusively in the “problem or disadvantage that requires compensatory or ameliorative action. The concept does not seek to specify whether the problem is located in the individual or in the environment. Nor does it attempt to identify the rationale for measures that are taken in reaction to the perceived disadvantage.”
Despite being 35 years old, this formulation continues to establish an effective base for understanding the structural and institutional ways that disability (that is, systematic disenfranchisement via social, physical, and political exclusion) is maintained. It is advantageous for unsympathetic governments to cast aside their disabled constituents because denying access to aspects of human dignity like appropriate housing and the ability to participate in public life ultimately saves “taxpayer dollars” via perpetually delayed infrastructure upgrades, while those constituents have fewer and fewer avenues to advocate for change.
But what would it look like to remove those barriers? If all public infrastructure, for example, had a statutory requirement to meet the highest possible standards for physical, economic, and social accessibility, it might follow that a lack of disadvantage (i.e., equity of access via things like universal design) would neutralize the need for a disability label altogether. That’s not to say that markers of experience and identity have no place, because the interdisciplinary evidence is overwhelmingly in support of the positive social driver that is sharing aspects of identity with others. From a structural perspective, however, if we accept that the presence or absence of contextual capacity socially constructs a person’s disability, I think there’s something to explore there.
Would true universal design render the disability category moot? Up for debate. What might pose an equally as worthwhile a question is thinking about the features of our world that contribute to the experiences of disability. So I present our next topic for consideration:
How have the principles of neoliberal governance and a capitalist economic system collided to magnify exclusion across so many spheres of life?
Part 2: Capitalism and the Architectures of Exclusion
In this section the most important takeaways are the overrepresentation of disabled people in conflict with hostile physical, political, social, and economic architecture. I want to draw some connections between the role of capitalism (i.e., profit motives), neoliberalism (i.e., the push for privatization and the hyper-individualization of social structures), and their debilitating effects on one’s ability to meaningfully participate in public life.
The Physical
Turning our attention to the built environment and design of public space, there’s a lot (A LOT) to say here about the fundamental aspects of physical accessibility (ramps, automatic doors, high-contrast wayfinding elements, accessible washroom facilities, clear and wide pathways, seating and rest areas, appropriate customer service desk heights, etc. etc. forever). Hostile physical architecture is the design of a space that dissuades certain groups from being there. If you’ve ever walked around in Vancouver, you’d likely recognize this style of street awning from the regret you incurred by not bringing an umbrella:
The gap in the awning allows rain to fall onto the sidewalk below, in the otherwise most protected area from the elements, so that it becomes unusable for people who need to rest or stay dry (to say nothing of creating slippery conditions for pedestrians and a narrowing, congestive effect for sidewalk traffic). An incomplete list of populations that are dissuaded from existing in these places are:
People experiencing homelessness
People needing a dry place to rest
People who need sure footing to walk safely
People using wheelchairs or pushing strollers
In an even more hostile decision, New York City’s MTA said the quiet part out loud in 2021 with a reply to a question about why the benches were removed from a subway stop. The transit authority said the move was made to “prevent the homeless from sleeping on them.”
What happens when policy aims to erase groups from public spaces? Everyone else feels unwelcome, too. In an attempt to crack down on people sleeping on subway benches, the MTA created a hostile place for anyone who, for any reason, needs to sit down while they wait for a train.
The same can be said in instances where neighbourhoods purposefully fill parks with features that look welcoming and inclusive (benches with armrests, tables with big cutouts for wheelchair users to roll into, even some cases of urban agriculture). Armrests arbitrarily set the width of seating and exclude people whose bodies don’t fit. They also prevent expansive use of the feature, including sleeping but also unique configurations for families and people using mobility aids. Roll-up tables must account for the location of the other seats and the height of the table relative to someone who is seated in a wheelchair, not to mention the quality of the surrounding pathways for wheeled access.
Even public vegetable gardens constructed on grassy boulevards and in under-utilized areas of parks may have the secondary (or primary!) effect of disrupting places where people pitch tents to sleep overnight. Pavement spikes, pay-to-sit benches, and other anti-loitering infrastructure all create hostile conditions for the public, regardless of ability.
These are simply tools of segregation by which undesirable (i.e., racialized, youth, disabled, poor) populations are forced away from public spaces because of aesthetic and epistemic understandings of what beautiful or safe commons look like. Pursuing beauty over function and exclusivity over accessibility is a symptom of an “us and them” perspective on behalf of planners and designers. It is telling of a catastrophic but purposeful disconnect between what the function of public spaces should be and what it functionally is. For someone encountering these installations and experiencing diminished capacity to exist in that space, the nature of their disability or social position does not lead to their exclusion, the environment does.
The Social
More subtle but no less insidious, social architectures contribute to exclusion through avenues like surveillance, behavioural expectations, and segregationist social planning policy. Public libraries are a perfect example of how third places can operate with a veneer of radical inclusion but sometimes perpetuate failures of community care through exclusionary social environments. Similarly, we are socialized to understand disability as both tragic and pitiful, as well as something to be inspired by, so when a disabled person participates in very normal social interactions, these perceptions are transferred back onto them in ways that neglect their humanity and thus exclude them from many aspects of the social world. And finally, social exclusion starts early and its effects are lifelong. Educational segregation reinforces the inequality and false hierarchy so that they seep into the social fabric of children and youth.
Public libraries, while a free public service and third space, reinforce similar modes of social exclusion as private spaces like cafés thanks to subtle means of surveillance and control. Codes of conduct and dress codes are excellent examples of policies that are understood to be functional and reasonably adhered to. This is not the case when it comes to patrons who are visibly “other” and as such create concern for safety in the eyes of the spaces they are accessing. A disabled person who vocalizes loudly and uses large gestures to communicate, for example, may not meet the library’s standards for acceptable behaviour. Library staff may field complaints from patrons who expect quiet or feel uneasy at the person’s unpredictable movements. Based on the code of conduct, staff have cause to ask the disabled person to leave despite not having caused any harm at all, and in fact merely existing how they are.
An important distinction that I think is missing in many discussions of social exclusion is between feeling uncomfortable and feeling unsafe. In some cases I think discomfort and fear come from the unknown. We don’t spend time consuming media about disabled folks very much (another dimension of social exclusion: lack of representation!) and have historically annexed the people who are not acceptably inspiring in their disabledness into isolation. It’s no wonder witnessing new (to the average person) ways of being causes discomfort; we are rarely asked to think about these things. What this gap in understanding means is that the social sphere is primed to reinforce a climate of surveillance and exclusion rather than to engage in empathetic community care. Defensive mechanisms of social control do not work in service of inclusion or accessibility; they magnify otherness and interrupt human connection.
So if we are working up to empathetic community relations, what else is in the way?The late Stella Young says in her TedTalk that “no amount of smiling at the flight of stairs has ever made it turn into a ramp. No amount of standing in the middle of a bookshelf and radiating a positive attitude is going to turn all those books into braille.” It’s true: no amount of positivity on the part of disability advocates has ever achieved their objectives. Structural change relies on the mass uptake of a purpose, not single instances of tokenism.
What Young is pointing to here is the bifurcation in expectations society places on disabled people. “Inspiration porn” is her name for the particular brand of toxic positivity that is foisted upon people just trying to live their lives. Think of the way newsmedia and social media respond to human interest stories of “overcoming” disability or oppression. This person is blind and walks 5 miles to work every day for less than minimum wage. This person crowdfunded for a new wheelchair after crawling to safety during an apartment fire. This former professional athlete has debilitating chronic illness and still runs triathlons. The voyeuristic nature of reporting and consuming these stories shifts the focus from the person to their disability, often in conjunction with activities they are presumed unable to do. People with cognitive and intellectual disabilities are particularly targeted with these ideas. This video produced for World Down Syndrome Day 2024 illustrates the impact of presumptive incompetence:
On one side is the assumption of deficit, whereby someone is deemed unable to fully participate in every aspect of their life. On the other side is the expectation of personal drive to “overcome” that will lead to a “normal” life. The two are at odds and also establish an untenable application of individualism in the face of structural barriers. This perspective reinforces the neoliberal belief that you will be rewarded for working harder than those around you (i.e., the unshakeable belief in meritocracy).
The assumption of deficit might be one of the most undermining causes of social exclusion I have discussed here. Let’s look at a site where its application has multigenerational impacts: the education system. The film Out of My Mind explores this phenomenon in great detail, showing a segregated classroom for all of the school’s disabled students regardless of their capacities to learn. Further, the story interrogates how even well-meaning administrators and educators uphold ableist structures by failing to advocate for the needs of their disabled students. Mainstream students grow up in segregated classrooms without opportunities to connect with their disabled peers, only seeing them from afar and learning to accept their separateness as justified. This social learning reinforces social inequality and false hierarchies that colour the social fabric into adulthood.
The Economic
I almost can’t determine a beginning and end for this element because of its far-reaching influence on what it’s like to be alive. A discussion of economic hostile architecture needs to consider the influence of profit motive in housing and the privatization of public space to capture its influence on accessibility. They’re not comprehensive, but these two pieces provide a helpful starting point to illuminate the features of this type of exclusion, which reconfigure public life to have such a high economic cost as to make its participation a privilege rather than a right.
Gentrification and displacement in the housing market is a multidimensional beast. What I want to focus on here, though, is how for-profit housing creates fewer options and higher rents, especially for accessible units. Here are some insights into why and how the housing market has become an economic force for harm:
Accessible units take more up-front investment to retrofit or build (think wide doorframes, low countertops, and roll-in showers for wheelchair users, for example).
Landlords and developers prioritize time of occupancy to maximize revenue.
They also delay maintenance and renovations for the same reasons.
According to Disability Alliance BC’s accessible housing matching program The Right Fit, there is no common standard for communicating the level and type of accessibility features with enough detail to determine fit.
Most accessible housing stock no longer meet current standards for accessibility but have been grandfathered in.
In 2022, CBC reported over 5000 disabled people in British Columbia were waiting for accessible housing, including over 1000 for wheelchair-appropriate units.
In contrast, the BC Housing Registry reports funding only 3,242 accessible units in the province.
There has also been an increase in people with disabilities accessing shelters, something that advocates attribute to a combination of inflated housing costs, lack of housing inventory, and an overall increase in disability across the population.
Under gentrification, affordable units are converted into above-market units, forcing former tenants out of their communities of care and into greater precarity. That same precarity blooms in public spaces as well, but not in the same ways we’ve discussed to this point.
“Buying power” is generally used to describe the degree to which a population can stimulate the economy by spending their money. On what? Doesn’t matter. Things! And the more private ownership spreads over our world, the greater control those entities have over who belongs on their property and under what conditions. The rule is usually: you can be here if you’re buying something, but otherwise get out.
Considering consumption and privatization and their implications for existing in a space, imagine being on a street of shops. It’s a sunny day and you’ve been enjoying an afternoon out and about. You feel thirsty and your legs are aching. You need shade, a washroom, water, and a place to sit for a little while so you can continue on.
The experience you’re about to have will skew positive or negative based on one primary driver: whether you buy something or not. There is a bench on the street, but no water fountain, and no washroom. Patios line the street and their tables, though empty, have signs that read SEE SERVER TO BE SEATED. The café nearby will have shade, but you’ll have to buy something to use their washroom and sit down inside. You know there’s a park a few blocks away that has a water fountain and some seating, but it’s too far to go.
Everywhere you look in this example, there is unmet need. Despite standing on the sidewalk on a public street, basics like water, shade, seating, and washroom facilities cannot be found without entering into an economic relationship with the business that controls what you need. Choosing to sit in that café or on that patio without making a purchase will result in being shoo’d away.
It is frowned upon to enter an establishment without the intention to make a purchase, and yet private enterprises control many of the spaces we tend to congregate. People who simply do not have the economic privilege to buy their access to these areas are condemned to be excluded from them. We do not belong in places where we cannot buy our welcome.
This mode of exclusion is the result of a system that sees people as sources of profit and risks of loss. Under mass privatization, we do not receive the dignity of simply being human; the transactional nature of access necessitates arranging society by social class, where we negotiate our participation with what we can pay to do so.
The Political
Let’s start with the big picture stuff: public health policy. Failures of policy adherence have plagued disabled populations across public services, but the impact of disability policy failure is particularly wretched in cases where the policy exists to provide relief when in reality it magnifies suffering. A SSHRC federal report reveals troubling evidence for the experiences of caregivers of youth with neurodevelopmental disabilities attempting to access the federal Disability Tax Credit (DTC).
Some of the primary gaps in access for the DTC involve interconnected dimensions of accessibility failures and structural barriers. Physicians, for example, play a primary role in policy application as we discussed. One recurring theme in the report is that those caregivers who successfully received the DTC had a physician who advocated on their behalf and was “persistent in the face of rejections”. Those without such devoted or knowledgeable practitioners incurred greater challenges in receiving timely diagnosis and correct paperwork. Similarly, the form itself posed a barrier to access due to unclear instructions and phantom parameters for wording in order for the application to be approved. Finally, the DTC application/re-application process tended to require re-application even in cases where the diagnosis was lifelong. These, plus lengthy processing times without application status updates exacerbated frustration of waiting for tangible support.
The DTC is an example of a widespread policy designed as a financial supplement for people with disabilities and their caregivers. The administration of this policy appears to be the point at which it falls short of its mandate, leading to potential beneficiaries incurring harm as a result. These individuals and families are under-resourced and therefore have less capacity to seek further support either economically or politically. Failure to fulfil the obligations of this policy is a form of political exclusion.
Another worthwhile case study for political exclusion is the COVID-19 pandemic. To me this is an example of structural ableism and exclusion occurring in real time, where a mass disabling event does not spur on mass public health reform but instead entrenches new barriers to political participation for everyone, including disabled people.
Firstly, the rollback of masking requirements and the absence of proactive air quality standards in combination with disallowing hybrid or remote work options fundamentally excludes disabled people from public life. Immunocompromised people in particular continue to be faced with the choice to remove themselves from society altogether for their own safety, or risk exposure to the virus by remaining in the public sphere. Risk-based exclusion emerges from the growing split between those who accept the risk of harm and those who do not (or cannot). Whether someone is managing long-term symptoms or avoiding crowded spaces for their own protection, they become more and more invisible. In this way, inaccessible public health policy continues to drive disabled populations away from public life.
Second, the way that entire sectors pivoted to remote work was both a positive development and a disappointing realization for disabled workers who had been advocating for such options for years. Schools moved online, conventions went virtual, concerts became live streams, and telehealth appointments became the norm, all of which represented changes that enhanced accessibility across the board. It seemed like the changes advocates had been pushing for had finally arrived for good. But once the pandemic was deemed “over” and the push to return to “normal” pervaded public consciousness, those options were quickly revoked in favour of traditional models. Deliberate, abrupt removal of these accessible means of connection demonstrated how little value is placed on the needs and lives of disabled people. It is possible and in fact quite simple to maintain these tools, but they have not been, thanks to the inconvenience and cost8 they pose to those in power.
Third, COVID-19 is a mass disabling event9 with chronic, long-term effects reported in the millions and including profoundly negative health outcomes. It is both a leading cause of disability in the world and an under-legitimized diagnosis for accessing accommodations. There are about to be hundreds of thousands of people in Canada and the United States experiencing disability for the first time and thus will be thrust into a system that denies them social and medical supports, accommodating work environments, barrier-free access to public spaces, and compassion in the face of precarity. Widespread abandonment of COVID-19 protections has not only stunted the evolution of public health policy in general, but it has contributed to the oppression of current and future disabled populations. Medical vulnerability is a collective issue, not an individual one.
Dr. Karen Tani of the University of Pennsylvania discusses the “false promise of handicapitalism,” a phrase from the late 1990s when disabled people became commodities through expansion of for-profit residential care facilities, for example. Tani deploys the term to discuss the double-edged sword of disability and social support, pointing to an “impoverished policy landscape that results from simultaneously wanting to keep disabled people out of the formal labor market and pathologizing any dependency on government aid”. This framing supports my thesis from the start, that disabled and chronically ill people are understood to be disposable, and are framed as burdens for needing institutional protections.
To be alive is to be political. We are simply unable to separate our personhoods, that is, the multitudes of experiences and identities we hold, from how the state and its structures try to bend us into an acceptable shape. The modes of exclusion experienced by disabled people in this world come from all angles, bending and warping the sense of self and the ways that disability manifests as a result. Hostile architectures turn embodied experiences into disabilities. What’s left to explore there are the means by which those constructed disabilities might be attenuated.
Part 3: Beyond reasonable accommodation
Legal scholar Ruth Colker draws on the work of late disability justice activist Marta Russell to remind us “what disability rights cannot do,” which is either to change the economic system that stifles civil rights laws, or to improve the application and enforcement of those laws at the micro level before contraventions of the law occur. Colker and Russell operate with an American lens, focusing on the Americans with Disabilities Act (ADA) which has been in place since 1990. The reactive model of reasonable accommodation, as Colker describes it, is a “structural feature of the ADA” that “reflects its inherent neoliberal limitations by forcing remedies to occur one person at a time.”
A reactive model requires someone to encounter an inaccessible place before seeking a remedy, while a proactive model would place the onus on the institution to meet the legal standard from the start of the program or service. Colker argues that the reactive model makes seeking group remedies very difficult because of the individual nature of the claims process. Each person who files an ADA case does so on their own behalf; that is, they are suing for the right to have their personal needs met rather than to enact structural change. It takes both time and economic power to lodge an ADA complaint that must be resolved through legal intervention. Marta Russell’s original critique of the ADA focused on the absence of legislative volition for enacting change at a systems level in favour of another source of post-injustice harm.
As promised, I am returning to Dr. Kelly Fritsch to reflect on the concept of differential inclusion and some approaches that might make equity a possibility in cases where identity moderates degrees of inclusion. A quick rundown:
Inclusion is context- and identity-dependent;
It can be offered or withheld;
Inclusion confers the power to bring grievances to those already participating;
And those grievances from included parties may create further barriers to dignified participation by others.
Differential inclusion says: I am a hockey player. I am included in my hockey league by meeting their criteria of a) wants to play hockey, b) can pay the registration fee, c) meets the demographic criteria for age. I bring a grievance to the organization because I don’t want to play with members of a lower socioeconomic status than me. I want to increase the registration fee to facilitate that change. The league’s response to my grievance (i.e., acceptance or rejection) will determine the degree of differential inclusion they confer on both me and potential members.
Beneficiaries of differential inclusion tend to reinforce the conditions that led to their marginalization in the first place; a “good capitalist” wants to participate in the systems of oppression for personal gain, while the foundation of reasonable accommodation (and ultimately a reorganization of political and economic life) is born out of the wreckage of those catabolic systems.
In a 2024 essay, Dr. Devon Price discusses how context influences how he experiences his own disability, noting that he doesn’t “feel disabled at home,” where he is free to dress how his sensory needs require, hold his posture in ways that are comfortable, eat and use the bathroom when he needs to, and control the types and volume of noise in the environment.
None of that is possible in public. As disabled people, we have to stuff ourselves into uncomfortable clothing and postures and then compose ourselves through the pain of it if we wish to be even tentatively accepted. We have to plan for the world to be a sensory assault and a digitally-mediated, advertiser-funded hail of confusion. I forget at home sometimes that I am disabled, but once I attempt to interact with the broader world, I am forcibly reminded.
I have pasted more excerpts from Price’s piece here, but it’s really best read as a whole. This is me saying “I wish I wrote this” because it captures exactly what I’m trying to say about the interconnectedness of disability, capitalism, and this overwhelming fear of otherness that influences public perceptions of what is “normal”. Click below and see the dominoes fall from “teen watches TikTok on speakerphone” to public transportation sensory hell, then to McCarthyism and white supremacy, and finally to the requirement to evaluate ourselves and others against professional standards and the ability to produce profitable work.
There is simply no straight line from where we are today and what needs to change; to identify how disability is manufactured by the material conditions of our society is to ask a fish why it is wet. Starting with the acknowledgement that the world is disabling by virtue of its intrinsic architectures and centuries-long sociocultural trajectory, however, is a worthwhile starting place.
What I want to draw out Price’s work is that there is no acceptable standard of accommodation that can exist in our world as it is today. Without radical, universal change in how we do society, from work to public spaces to social norms and governance, we will fail to rewrite the social contract10 in a way that allows for all the beautiful and vastly different human experiences to thrive. It all needs to change. Reasonableness cannot be the goal! Right? There’s more than that for us all. There is a fundamental backwardness to a hierarchy of priorities that places profit and productivity so cosmically high relative to the commitment to ensuring every person can thrive in public and private life.
I want to leave you on a hopeful note. Dr. Ayesha Khan is here again with a beautiful meditation on how difference, divergence from the norm, and being part of a collective that recognizes the diversity of experience in every person can be used as a model to imagine a radically inclusive future for us all.
Thanks for being here with me.
Or conduct experiments, or do eugenics.
Pfeiffer brings it back to ontologies and epistemologies that arose from ancient Greek and Judeo-Christian tradition, including how the Catholic question of transubstantiation created the intellectual ability to consider the material world as distinct from the spiritually-constructed world, and thus ushered in the era of scientific inquiry. If we have a way of being (physically in the world) and an accompanying epistemology (a way of knowing the things we know), then we can build a paradigm for making meaning of our experiences.
Fritsch, K. (2015). Gradations of debility and capacity: Biocapitalism and the neoliberalization of disability relations. Canadian Journal of Disability Studies, 4(2), 12–48. https://doi.org/10.15353/cjds.v4i2.208. Full text available here.
This phenomenon can be seen in the evergreen popularity of personality tests like the Myers Briggs Type Index (the podcast Maintenance Phase did a banger of an episode on its history last year), as well as the sheer number of dating profiles and social media bios that list everything from D&D moral alignments to psychiatric diagnoses as a means to triangulate themselves in the social world.
Khan references a piece by Queercoded Dividual, quoting, “Many more radical-minded queer people and queer activists have challenged the “born this way” narrative from many perspectives: From the perspective that it denies any fluidity and agency, that it undermines more radical politics to challenge the cisheteronormative gender system, that it comes from a place of queerness having to justify its existence, that it naturalizes historically relative and constructed gender and sexual categories (and therefore cisheterosexist structures as such), that it has insufficient scientific backing etc.”
Two policy nerds that I have learned a lot from over the years are Sandy Hudson and Nora Loreto. Their podcast, Sandy and Nora Talk Politics, is a deep resource for policy analysis from the left. Episode 138 on the MAiD policy expansion in 2021 discusses the shortcomings of a system that continues to make living with disabilities and chronic illness immensely difficult while establishing further avenues for mass death.
Holler, R., & Ohayon, Y. (2024). Understanding disability policy development: Integrating social policy research with the Disability Studies perspective. Social Policy and Society, 23(3), 611–626. https://doi.org/10.1017/S1474746422000367
Maybe it’s more a perception of cost. The more workers are remote, the less overhead cost the entity incurs. And that’s likely more than the price of a webcam.
Owen, R., Ashton, R. E., Bewick, T., Copeland, R. J., Ferraro, F. V., Kennerley, C., Phillips, B. E., Maden-Wilkinson, T., Parkington, T., Skipper, L., Thomas, C., Arena, R., Formenti, F., Ozemek, C., Veluswamy, S. K., Gururaj, R., & Faghy, M. A. (2025). Profiling the persistent and episodic nature of long COVID symptoms and the impact on quality of life and functional status: A cohort observation study. Journal of global health, 15, 04006. https://doi.org/10.7189/jogh.15.04006
Lockean (1690) social contract theory functions to protect individuals against each other by centring the right to the preservation of life, liberty, and estate. Rousseau’s (1762) conception of the social contract is more the style of what I’m referencing here, where the common good or “general will” of the collective requires an understanding that some members of society would forfeit some privilege so that excluded or under-resourced groups have their needs attended to (what we would now call equity). This is not a rigorous or precise interpretation of Rousseau’s original text, but I think it functions well as an analogy here.