“The idiot is that very ‘other.’ […] a body made for blows and lowly tasks, a body long since dispersed, to be derided and not in need of being defended, no longer having anything to defend. […] already he is ‘waste.’” (Michel de Certeau, The Mystic Fable, Volume One: The Sixteenth and Seventeenth Centuries, 1982).
As Western medicine’s vocabulary around “idiocy” continues to shift, we witness an emergence of clinical terms ranging from “feeblemindedness,” “retardation,” and “developmental delay,” to the internationally recognized, now current referent “intellectual disability.” Suffused with notions of backwardness and corrupted development, these labels are at once pseudo-scientific and imprecise, shrouded in the same obscurity that defines the marginalized and invisible lives they seek to identify. A lot of readers may feel that we are heading towards more inclusive times, an era of deinstitutionalization where people with intellectual disabilities are no longer prevented from living freely in the broader community. As always however, the risk of such misconceptions is immense. To realistically assess the truthfulness of any claims to positive change for people with intellectual disabilities, lets ask ourselves some questions:
When was the last time you met someone with an intellectual disability? What do you know about the T-4 program and the Holocaust of the Handicapped? How about the forced sterilization campaigns in California and Alberta? Or the continued confinement of people with intellectual disabilities in large institutions both in the Global North and Global South? It is unlikely that we are well versed in these issues, and it is just as unlikely that we have the benefit of a personal relationship with a person with an intellectual disability that would allow us to get up to speed. Despite whatever developments have taken place in recent years, the truth remains that people with intellectual disabilities are forced to exist on the uttermost margins of our society.
Quite paradoxically, the social isolation of people with intellectual disabilities and the invisibility of their histories go hand in hand with the mass production of knowledge related to their so-called defects. Characterized as lacking reason, self-control, and prone to crime and “welfare-dependency,” their assigned status is one of the lowliest: a perversion of human nature that risks infecting the social order. In fact, so many alarmist campaigns have been waged on the premise that people with intellectual disabilities are sub-human.
Eugenicists new and old have worked tirelessly to keep them “out there,” on the fringes of society and our social imaginary, and at all costs to keep them away from a healthy and productive citizen body. Better yet, to prevent their birth altogether. As a result, this group has been scientifically studied, pathologized, and quantified, from mandatory IQ testing to the new psychometrics and prenatal screening. And as in all cases involving rabid social phobia and out-grouping, the careful control of those who are thought to be intellectually inferior goes hand in hand with the recognition and fear that they are indeed “out there,” freely living their lives.
Yet in many jurisdictions, people with intellectual disabilities are still not allowed in our schools, in our neighborhoods, in our community spaces. Very often, as we will see further on, they’re not even allowed in our country. They are among the poorest in any given society, experiencing disproportionately high rates of homelessness, sexual violence, criminalization, the death penalty — the list of wrongs goes on and on. So how can we address years of vicious exclusion and degrading treatment against one of the most invisible and poorest communities in the world? Where do we begin? First, we can try to understand why it is exactly that people with intellectual disabilities are so feared.
Sadly, for a lot of people, the very existence of those labelled as “retards,” who are infantilized as adults and denied the right to make basic decisions about their own lives, pushes the boundaries of what is considered human. In economic terms, the threat they pose comes from their perceived failure to embody market rationalities. They are viewed as social burdens: un-productive, non-contributing, “useless eaters.” And for all these claims, it is people with intellectual disabilities who bear the brunt of our social prejudice, the heavy burden of austere measures that target the poorest and measure our worth according to market value.
Second, we need to recognize how these eugenic ideas are reflected in spatial arrangements — from the forlorn, weed-ridden idiot asylums of the 19th and 20th centuries, to more modern and sometimes subtler methods of disability incarceration. These strategies of containment even creep into border control policies and immigration laws where they brazenly deny permanent residency to children with Down’s syndrome, for instance.
If you’re imaging that these punitive measures are restricted to one historic era or just a few countries, you’d be wrong. Eugenic philosophy and history run across local and transnational boundaries, leaving destructive legacies around the world. Canada, where I write from, is no exception. A personal story illustrates an all too common problem.
In a rural township in Eastern Canada, a truck stops for a hitchhiker. She is a woman in her early 30s with an intellectual disability who has run away from her group home. She says she does this often because she hates the home; there is nothing to do there and she feels unsafe — there is so much screaming and the residents, unsupported by staff, abuse each other. We stop at a coffee shop for a while and talk. Eventually she decides to return, as she has nowhere else to go. She gives us directions and we arrive at a building where over twenty people mill around the outside smoking. The lawn is littered with trash and inside, a few staff members are gathered in the kitchen and seem unconcerned by her disappearance. The woman tells us that she wants to use her funding to rent her own apartment. She asks us to assist her in contacting her social worker so she can arrange for the move. We ask staff for the number and reach the social worker by phone. No help there: the social worker explains that the woman has done a lot of things to end up “in this place.” Besides, she says, this is the only form of supported housing available.
If you’re a person with an intellectual disability you likely don’t have a say about where you live or who you live with. These decisions are probably made on your behalf by social services agencies, based on rare openings in an underfunded supported housing landscape. When it’s finally your turn and you’re successfully “placed,” you are consigned to the daily churn of custodialism. Your schedule reflects the schedule of a hustling and bustling, underpaid staff team. There is little room for the exercise of choice in your life and the interactions that take place in “your home” are shaped by risk-avoidant protocols that staff are obliged to follow.
These supported housing arrangements range in size, from congregate care facilities — like the one described above — to smaller homes that house five or six individuals, and mega-institutions with thousands of beds. For all their variations, the institutional quality of these sites remains the same. Ultimately, an “Institution is a state of mind,” according to People First of Canada, a national self-advocacy organization of people with intellectual disabilities, which leads the deinstitutionalization movement. Not surprisingly, the state of mind that is cultivated in institutional contexts is one of obedience, because the tight budgets, staff rotations, and risk-oriented protocols preclude any room for individuality.
Resistance, however, does and always will take place. In the province of Ontario, institutional survivors have fought to bring what happened to them to the public record. Accounts from Huronia, a large, government-operated institution that closed in 2009, describe repeated beatings, acts of rape, humiliating rituals ordered by staff, forced and unpaid forms of labor, and murder. Still struggling for recognition of this violence, self-advocates are leading campaigns and memorialization efforts to preserve the unmarked graves of former inmates who died during their time at Huronia (see “A Message from Cindy Scott, Huronia Regional Centre Survivor,” YouTube, 2016). Recently, a group of survivors attempted to halt a bid that would turn the site of the former institution — situated on a lake-front property and deeply coveted by developers — into a cultural center that promises to generate tourism in the region.
But the bodies remain, the deaths unaccounted for, and a thousand more like them have been discovered in unmarked graves outside similar institutions in the United States. It’s very likely that more have been, or will soon be, discovered elsewhere. Today, mega-institutions specifically designed for people with intellectual disabilities remain open in many places, and even where they don’t exist, unlawful acts of confinement continue to force members of the intellectual disability community into hospitals, psychiatric facilities, and other institutional environments.
To be sure, there have been tangible signs of progress. Prompted by the deinstitutionalization movement and the dedicated work of self-advocates, including class-action lawsuits, positive changes have been taking place in some countries and many governments can now say that they embrace a politics of inclusion and “community integration.” With the phasing-out of mega-institutions in these places, alternatives are indeed being tried under the rubric of community living. But the facts lurk close by, and as the above vignette suggests, so much remains the same.
Of course, the move from overt confinement in large-scale-institutions to covert forms of institutionalization in smaller buildings does achieve a form of inclusion, in the sense that it literally disperses people with intellectual disabilities throughout the community. However, placements in these smaller centers and specialized forms of housing tend to take place without choice and without the disability supports that are required for social, economic, or political participation. This casts doubt on the potential for these new arrangements to address issues of segregation. Further still, it imposes a kind of vulnerability that denies people with intellectual disabilities the basic means by which to address the many risks they may face in these new, closed settings.
In this view, the true scale of the crime goes beyond the unremarked deaths, the institutions with their rows of beds, and the high walls that hide atrocious acts of violence and human warehousing. It touches on the human status of a deeply marginalized community. Today, many people with intellectual disabilities are still without legal rights and formal recognition before the law. Decreed incompetent by capacity boards and inadmissible under immigration systems, they exist as a veritable underclass. In People First’s words, “The Left Behind of the Left Behind.” And the array of strategies used to keep this group behind reflects nothing less than a collective fear of disability and diversity — a fear that can be mobilized for multiple purposes, not least of which are efforts at “national cleansing.”
After all, what better way to lower the number of people with intellectual disabilities in a country than by preventing their entry in the first place? Ableist immigration laws that target disabled people for exclusion effectively constrict the transnational movement of people with intellectual disabilities. These laws are based on a widespread acceptance that the provision of disability supports represents a drain on the system, rather than an investment in human flourishing or, better still, a basic right. I explore these practices in depth in my own research, and case after case reveals how applicants are readily written off as “medically inadmissible” based on the tried and true belief that they pose a social burden.
Many countries have these laws. Canada, for example, recently received a lot of bad press after migrant workers applying for permanent residency spoke out against medical inadmissibility practices. These women disclosed how they had been denied reunification with their children with intellectual disabilities after years of working in the country through an official labor program, with the hope of permanent status for themselves and their families. Such experiences are just the tip of the iceberg. Inadmissibility cases involving intellectual disability abound, showing how colonial processes that marginalize racialized people from the Global South interact with disability discrimination — a problem I cover in more detail elsewhere (see “The Medical Inadmissibility of Intellectual Disability: A Postcolonial Reading of Canadian Immigration Systems,” in Disability and the Global South Vol.3 No.2, 2016).
Disability researchers and activists have indeed shown how ableism and colonialism relate multiple, intersecting forms of oppression. On the one hand, ongoing exploitation by the Global North both creates and sustains the conditions that make the provision of disability supports impossible in some regions. The resulting issues are many and far-reaching. As one example, people with intellectual disabilities may try to avoid institutionalization by drawing upon family support; they may also use these supports to make decisions and to direct their own lives. While there is no guarantee that families (if an individual is lucky enough to have one) will play such an empowering role, there are certainly situations where they do. Such positive arrangements, which are essential to daily living, can be disrupted by forced or coerced migration. The injustices encountered by the women mentioned earlier illustrate this dynamic. All of these women were separated from their children with intellectual disabilities for many years after moving from countries in the Global South to the wealthier Global North, compelled by poverty and the unjust conditions that often result from colonial processes.
Their conflict with the Canadian immigration system brings to light the cold calculations that are applied under the excessive demand regime, which subjects even children to scrutiny. Once under the view of immigration authorities, disabled people can be rejected based on many factors, including the perceived severity of their impairment. In this way, people with intellectual disabilities are especially susceptible to rejection given the entrenched belief that they are among the most “profoundly disabled.” Making matters worse, the only recourse available to those deemed inadmissible is financial proof that they or their family can afford to pay out of pocket for any costs associated with their disability. For many migrants already facing the reality of poverty, this is rarely an option.
So, while these cases turn on ableist systems, they are also further evidence of what scholars like Sunera Thobani, Yahya El-Lahib, and Samantha Wehbi have described as the abiding racism of immigration laws in receiving countries, which provide few opportunities for applicants from the Global South to obtain permanent status. Additionally, they tell us that we must be all the more attentive to the transnational experiences of people with intellectual disabilities and most importantly, to how ableist ideologies interact with racist colonial agendas. Such awareness is vital in times of growing inequality, during which bigotry stealthily creeps into everyday politics. Historically, the exclusion of people with intellectual disabilities has always coincided with contempt for the poor and the denigration of other forms of difference from the dominant norm, and it would be unwise to ignore these tendencies.
At a broader level still, we must consider what it means for a society to dismiss people with intellectual disabilities as non-contributing “useless eaters.” This idea usually gets attributed to other eras but here it is, alive and well and still largely unnoticed. Many of us may say we don’t agree that people with intellectual disabilities are better off dead or locked away, but unfortunately, these individual reactions don’t tend to win out. As we have seen, the propensity to exclude people with intellectual disabilities is systemic and is premised on the belief that they are “defective humans”; it easily slips under most people’s radar, including even those watchful individuals who are concerned with justice.
New policy initiatives may be heavy with promises of disability inclusion, but these don’t always translate into an actual acceptance of disabled people. The distinction between acceptance and inclusion — along with related accessibility efforts — is a powerful litmus test for assessing whether new initiatives really contribute to social justice. Drawing on similar observations, disability critics have pointed to the various limits of inclusion strategies, arguing that this model is a thin disguise for the requirement for disabled people to fit themselves into ableist social structures (for an excellent discussion of this trend, see recent work by David Mitchell and Sharon Snyder). This seems especially true when inclusion efforts are geared towards employment and become preoccupied with disabled peoples’ entry into the workforce. What this means in practice is that those who are most hurt by the way society is currently organized become further marginalized when governments claim to have met their inclusion and accessibility goals. Situated at the bottom of the impairment hierarchy, with an unemployment rate that often outstrips the general disability unemployment rate, the experience of people with intellectual disabilities provides a stark reminder of the failure of this approach.
To better understand the difference between inclusion and acceptance, we have to start observing what is not happening: who is missing from our conversations and our media stories, who is being stopped at our borders, and who is not receiving the supports they require to join our communities. In sum, who is being left behind? These questions are firmly rooted in the need to improve the status of people with intellectual disabilities during a time when the tendency to operate under market-driven forces is increasing. As austerity measures intensify, so too does the invisibility of this segregated community. Falsehoods around disability inclusion and the degree of actual change experienced serve no good when the eugenic threat has never really left our door.