There Is No Spoon
On what human rights actually require — and why getting this wrong keeps producing Willowbrooks
On October 31, 1963, President John F. Kennedy signed the Community Mental Health Act and gave a speech about what it would accomplish.
He spoke of research facilities and treatment clinics. Of comprehensive care for people with intellectual disabilities — he used the term mental retardation, the clinical language of the era. Of coordination between state and federal government. Of parents and children finally having access to the diagnosis and treatment they needed. It was a speech full of genuine care, delivered by a person of genuine conviction, announcing a bill that represented genuine progress.
Nine years later, Geraldo Rivera walked into Willowbrook State School on Staten Island with a camera.
What he found was not what Kennedy had promised. It was not even close. Willowbrook held five thousand residents in a facility built for four thousand. Children were warehoused in rooms with no activities, no stimulation, no education. Some had been left naked on cold floors. The staff were insufficient in number and undertrained. The conditions were, by any honest accounting, inhumane.
Rivera’s footage aired on ABC News. The public was shocked. Lawsuits followed. Legislation followed. The modern disability rights movement gathered momentum in part from the specific gravity of what that footage revealed.
I want to sit with the gap between Kennedy’s speech and Rivera’s camera. Because that gap is not a story about bad intentions. Kennedy meant what he said. The legislators who voted for the bill meant what they said. The staff at Willowbrook were not, in the main, cruel people. They were ordinary people doing jobs inside a system that had been built on an epistemic infrastructure nobody had examined.
That infrastructure said: people with intellectual disabilities are patients. Their condition is a medical problem requiring treatment. The appropriate response is a facility staffed by professionals who can provide that treatment. The community cannot hold them. The family cannot hold them. The institution can.
Kennedy’s bill built a material world from that infrastructure. Constructed buildings. Hired staff. Established funding streams. These produced a system.
And then Rivera walked in with a camera and showed everyone what the infrastructure had actually produced.
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I have a concept I want to introduce — one I have been circling since the first piece in this series and have not yet named directly.
Everywhere I look in child welfare, in disability policy, in the history of well-intentioned institutional interventions, I see the same pattern. Someone identifies a problem. Someone builds a response. The response is constructed from an epistemic infrastructure — a set of assumptions about what the problem is, who the people experiencing it are, what they need, and what the institution can provide — that nobody in the room examined carefully because nobody had to. The infrastructure felt like common sense. The buildings followed. And then, years or decades later, it becomes a sordid exposé.
I have started calling these moments — the places where an epistemic and systemic infrastructure produces exclusion from both resources and participation — sites of contestation. Judith Butler talks about bodies as sites of contestation where the performances to unseen scripts — specifically with regards to gender and sexuality — materialize a body-concept that is as real as the flesh incarnates it. As a social worker, I want to run with this. Materialization is one half of a process I promise to return to, but for now we can extend this definition to include all the bodies materialized within a social problem. And the contestation is not the gender politics that push and pull on the individual toward inclusion and exclusion; it’s the social politics that push and pull on the group of bodies toward participation and exclusion. Exclusion from material resources. Exclusion from the sensemaking that produces the narratives disability as pathology.
Willowbrook is a site of contestation. The disabled bodies warehoused there were excluded materially — from adequate food, shelter, stimulation, education. And they were excluded epistemically — from the meaning-making that determined what their lives were understood to require. Nobody asked them. The infrastructure had already decided. The patients did not participate in the production of the system that governed their lives. The institution spoke for them, in the language the institution had developed, toward the purposes the institution had defined.
The ticket machine is a site of contestation. The word compliant is a site of contestation. The hearing where a father does not know what the proceeding is about until the caseworker summarizes the report in a side room is a site of contestation. Each of these is a location where specific people are excluded from the material resources and/or the epistemic participation that full membership in the social world requires.
The pattern is the same at every scale. The infrastructure precedes the institution. The institution produces the exclusion. The exclusion persists until someone names it — and even then, the naming is not sufficient.
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Here is what makes the history of disability rights instructive beyond its specific subject matter.
In 1973, Congress passed the Rehabilitation Act, which guaranteed accommodations for disabled people in public spaces. In 1975, the Education for All Handicapped Children Act mandated appropriate public education for disabled students. These were genuine achievements. They changed material conditions for millions of people.
But they were achieved, in significant part, because disabled people themselves had entered the rooms where the epistemic infrastructure was being produced. Ed Roberts and the independent living movement did not simply demand better facilities. They contested the assumption that facilities were the right response. They said: we are not patients. We are not problems requiring institutional solutions. We are people who need accommodations in a world that was built without us in mind. The epistemic shift preceded the legislative shift. The material change followed from the epistemic change.
And then, in 1981, President Reagan — responding to the real problem of institutionalization — cut federal funding for community mental health services. And then the block grant restructuring that followed left the most vulnerable members of the disability community with few alternatives. By the end of the decade, a significant portion of the population experiencing severe psychiatric disabilities had been rehoused in America’s prison system — a fact that should arrest anyone who believes that systemic change, once achieved, is permanent.
What happened was not simply a political reversal. It was the consequence of an incomplete intervention. The material infrastructure had been partially dismantled — the institutions closed, the funding redirected — but the epistemic infrastructure that had produced the institutions had not been fully dissolved. The assumption that these bodies required management rather than accommodation, treatment rather than access, containment rather than community — these scripts had been challenged but not replaced. When the political winds shifted, the old infrastructure found new concrete to pour itself into.
The prison became the new institution. Different building. Same script.
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This is why I have come to believe that the epistemic dimension of human rights is not a supplement to the material dimension. It is its precondition.
Kennedy’s bill addressed the material dimension. It built facilities. It funded staff. It produced infrastructure. What it did not do — could not do, from within the epistemic infrastructure that produced it — was contest the assumption that the institutional response was the right response. The material intervention was built on an unexamined episteme, a two-dollar word for the body of knowledge that makes up a social reality. When that episteme was finally contested, the material infrastructure it had produced could not survive the contestation.
The independent living movement did something different. It intervened epistemically first — contesting the patient model, naming the independent living model, insisting on the right to participate in the production of the social world that governed disabled lives. The material changes that followed were more durable because they were built on a different episteme. Not a perfect one. Not a final one. But a different one, developed with the participation of the people whose lives it would govern.
This is what I mean when I say that human rights are not just about resources. The right to speech, assembly, press, food, shelter, healthcare, education — these are real and essential and non-negotiable. But their conference is incomplete. The person who receives food and shelter from an institution that has decided in advance what they need, who they are, and what their life can mean, has received a material benefit and an epistemic violation simultaneously.
Full human rights require both dimensions. The material: the protection of rights and access to the resources a just society owes its members. The epistemic: participation in the production of the social world that determines what those resources look like, who is seen to need them, and what it means to receive them with dignity.
Sites of contestation are where one or both of those dimensions has been foreclosed. The work of justice is the work of reopening them — not through the replacement of one epistemic infrastructure with another imposed from above, but through the conscientization of all the people producing and experiencing the site, toward a social reality that includes rather than manages the bodies it was built to serve.
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I am a child welfare caseworker. I am not, most days, thinking about Kennedy’s 1963 speech or the history of deinstitutionalization. I am thinking about a family I am going to visit in an hour, a court report due at the end of the week, a Child and Family Team Meeting. I need to schedule before the ninety-day deadline.
But the framework I have been developing across these pieces — slowly, from the specific encounters that forced it — is an attempt to name what I am actually doing when I practice well, and what is missing when I don’t.
When I write compliant I am producing a site of epistemic contestation — excluding a parent from authorship of their own story within the document that will govern their family’s future. When I unfurl instead — when I write the specific texture of a mother’s effort in language that asks the reader to see a person — I am making a small epistemic intervention at the site of contestation. Not solving the structural problem. Reopening, in one document, one dimension of the participation that the institutional script had foreclosed.
When Mark walked city officials through the problem of the ticket machine, he was naming a site of contestation — a location where the material infrastructure of the city was producing epistemic exclusion, where the built environment was saying to thirty thousand disabled drivers that their presence had not been anticipated when the plans were drawn. The mayor’s response — the script change, the reconcretization toward accessible parking — was a small material and epistemic intervention at that site.
When the CFTM modeler team sits in on meetings across a county, we are trying to build the social capital that makes sites of contestation visible to the practitioners who are, mostly inadvertently, producing them. Not to condemn anyone. To conscientize — to make the scripts legible enough that the people performing them can begin to imagine performing them differently.
The framework locates the social problem — the when and why of intervention — as the site where people are excluded from their full humanity. Not their full comfort. Not their full preference satisfaction. Their full humanity: the right to be a meaning-maker in the social world that governs their life, alongside the material access that makes meaning-making possible.
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The Social Construction of Reality gave new meaning to one of my all-time favorite movies — The Matrix. Berger and Luckmann observe that social reality is sort of like the spoon — not in the sense that it doesn’t exist, but in the sense that its existence is constituted rather than discovered. The metal is real. The spoonness of the metal is a production — a compression of material reality into a form that serves specific cultural and bodily practices, that becomes invisible as a production the moment it achieves sufficient density to feel inevitable.
There is no spoon, the philosopher says, meaning: the thing we call a spoon is a historically specific production that we have collectively forgotten we produced. But there is metal. And the metal has been shaped in a way that serves some bodies and not others. The fine motor function required to hold a spoon is assumed. The alternative has not been anticipated.
Kennedy’s bill was a spoon. It was shaped from real concern, real resources, real political will — and from an epistemic infrastructure that had decided in advance what shape the response should take and whose body it would serve. Willowbrook was what happened when you walked into the spoon factory and looked at what was actually being produced.
The sites of contestation are where the spoon fails. Where the shape the institution has produced does not fit the body trying to use it. Where the epistemic infrastructure that produced the shape has never been examined by the people whose bodies it was supposed to serve. For the social worker, they are the precisely located social problem.
The work is not to melt all the spoons. The work is to examine the infrastructure that shapes them — and to ensure that the people whose bodies will be asked to hold the result are in the room when the shaping happens.
That examination has a name. But before we get there, the framework needs another test — the one I have been putting off because it requires the most honesty. What happens when this analysis travels beyond the familiar terrain of child welfare practice, beyond the disability access work that started all of this, to places where the rights frameworks themselves are culturally contested? That is the next piece. That is the next piece.
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Sources
Butler, J. (1993). Bodies that matter: On the discursive limits of “sex.” Routledge.
Berger, P. L., & Luckmann, T. (1966). The social construction of reality: A treatise in the sociology of knowledge. Doubleday.
Freire, P. (1970). Pedagogy of the oppressed (30th anniversary ed.). Continuum.
Hamraie, A. (2017). Building access: Universal design and the politics of disability. University of Minnesota Press.
Ife, J. (2022). Human rights and social work: Towards rights-based practice (4th ed.). Cambridge University Press.
The Social Construction Worker has worked in child welfare for six years and has recently completed an MSW at an accredited institution. This Substack explores the nos framework — a theory of how social reality gets produced, maintained, and disrupted — developed at the intersection of child welfare practice, social construction theory, and a deep suspicion of any map that mistakes itself for the territory.