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Officials at Canada's agriculture department are asking scientists who were abruptly fired earlier this year to help the agency decide its future research goals, Canada's National Observer has found.
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Epiphyte City
On The News Agents podcast yesterday, John Sopel and Lewis Goodall turned their attention to Covid while discussing the show-trial of Dr Fauci in the US senate. I wasn’t really planning on writing about Covid any time soon, but they offered two increasingly standard media pandemic takes that are simply not justified by the evidence and undermine both science and future pandemic preparedness.
Goodall and Sopel discussed school closures and the lab leak theory: “Legitimate questions have emerged and should be asked about, for example, whether school closures were a good idea or the lab leak theory itself.” Setting aside the fact that these questions have been asked continuously since 2020, they did not fairly represent the evidence.
On origins I’ll be brief because it is not my field. While a lab leak has not been disproven (and likely can never be), every piece of positive evidence that has emerged since 2020 about where the outbreak began points to a natural origin from the Wuhan wet market.
School closures are within my expertise[i]. Sopel and Goodall seem to come to the view that school closures were not justified (”I am not sure that even in the first lockdown, that school closures for any length of time were a price worth paying.”). This question is not settled - the Covid Inquiry’s Module 8 on children and young people has not yet reported and what exists right now is a media consensus.
A price worth paying implies a comparison. What was said next was that there is now “plenty of academic literature and evidence to show the damage of that on children, particularly children from the least well-off backgrounds and the most vulnerable kids”. That is true – school closures were very damaging to children – but Sopel and Goodall did not say anything about what the alternative would have been. Because the alternative is not “schools open and all other outcomes the same”.
This matters because of what comes next. What we now know about how covid affected children (and it was not as mild as commonly believed) is knowledge about one virus. The next pandemic may have a very different age profile, for instance flu pandemics have often hit the young hardest. Keeping schools open is a goal not a policy, and the lessons we need to learn are about how best to get there.
First school closures in March 2020: a price paid against what?
In March 2020, we weren’t testing, hospital admissions were doubling every 3-4 days or so, we had no treatment and no vaccine. The few countries ahead of us in the pandemic closed schools along with everything else, so we did not have evidence on the differential impact of school closures over other closures. We didn’t know that much about transmission (especially in infected people without symptoms), we didn’t know whether fewer reported cases in children was because they were less likely to be infected if exposed, if they were less likely to show symptoms (and so be less likely to be tested), or if they were less likely to be exposed because schools were shut - or a combination of all three. We had no idea about long term impacts of the virus. We did know that mixing in school and at home is an important factor in annual flu epidemics.
With hindsight, it’s plausible that with everything else shut, keeping schools open would probably still have allowed the wave to be brought under control but it would certainly have meant that it took longer to come down. We do now know that children, and schools where children mix in large numbers, absolutely do contribute to transmission. OpenSAFELY followed 12 million adults in England and found higher infection risk among those living with children. Lessler et al found the same association with in person schooling. And in Sweden, where lower secondary schools stayed open while upper secondary moved online, parents and teachers of the pupils still attending had measurably higher infection rates.
Children live with adults, and many live with vulnerable adults. They are taught by adults, including many vulnerable adults. Schools are maintained by adults, including many vulnerable adults. A longer first wave means more infections, more people in hospital, more deaths, more Long Covid. Children would have carried on attending school inside a longer lockdown. And if the numbers had not come down quickly enough, schools would have closed in the end regardless, later, with more damage already done.
Schools did reopen partially in June 2020, when community transmission was very low. With hindsight, they could probably have opened a week or two earlier if protective measures had been put in place. But we are talking days and weeks, not months (because decline is exponential just as growth was).
Summer 2020 onwards: a real failure
By the end of the first wave, we knew a lot more. But there was no government effort for education (and social) catch-ups, particularly outdoors, for children over the summer and no effort to make schools into safer environments. In September 2020, schools reopened against an airborne virus with class bubbles, staggered start times, hand hygiene and cleaning of surfaces. Masks were discouraged in classrooms. Financial support for isolation was among the least generous in the OECD, so a positive test was something many families could not afford to act on (and testing was overwhelmed that September). Ventilation was acknowledged as good practice and then barely funded: carbon dioxide monitors were not promised until August 2021 (long after the last lockdown) and then arrived late, and only 3% of classrooms had received air cleaning units by 2022.
Through the autumn of 2020, schools and year groups shut repeatedly when too many staff or pupils were ill or isolating. By July 2021 (months after the last lockdown) more than a million children were out of school during the height of the Delta wave. To end the disruption, the government stopped asking child contacts of cases to isolate in August 2021. But the disruption continued throughout the autumn of 2021, as the driver became infection. By the end of 2021 prevalence was around 6% in primary and 8% in secondary pupils, and when Omicron first hit in early 2022, almost 15% of primary school children were infected in one week at its peak.
Letting the virus run through schools produced schools that partly closed, unpredictably, at no notice, with little remote provision ready. Disadvantaged children lost the most and received too little support both during and after closure.
November 2020: the lockdown with schools open
England did in fact run the experiment of lockdown with schools fully open: the second national lockdown, from 5 November to 2 December 2020. It worked but was not as effective as the first and third lockdowns. National surveillance from November found infection rates falling first in adults and then, about a week later, in children. While adults’ contacts were similar in all lockdowns, children’s contacts were markedly higher in November, when schools were open. Before the lockdown had even ended infections had started climbing again in London and the South East due to the emergence of the more transmissible alpha variant. Lockdown with schools open (and no vaccines) was simply not enough to contain the alpha variant.
From 23 November 2020 cases rose rapidly across all age groups in London and the South East. Prevalence in school age children reached levels higher than any other age group by mid-December 2020 and the December rises in children came before the rises in everyone else.
January 2021: the last and longest lockdown
Vaccination had begun on 8 December but cases were rising too fast for enough people to be vaccinated in time to either reduce spread or reduce sickness without further restrictions. I’ve already written about that devastating wave in which 87,000 people died and the NHS was brought to its knees. Modelling from the team behind the CoMix contact survey estimated that a lockdown under November conditions with schools open would have meant that R remained close to or above 1 during the Alpha wave – that would have meant a much much longer and more devastating wave. Schools – rightly – were the first things to open in March 2021.
What we now know about Covid infection in children
So far, I’ve not said anything about the impact of Covid infection on children. Media consensus again seems to be that it is minimal. It is not. Children can be at lower risk than adults and still be at risk. Note that much of the evidence I’m going to talk about in this section was consolidated after 2021, after decisions on schools had to be made.
In our study analysing a national cohort of 3.2 million children in England, published in 2023, there were 29,230 hospital admissions associated with a first covid infection. Covid was the cause of, or a contributory factor to, 21,000 of them. 1,710 involved paediatric critical care. There were 70 deaths in which covid or PIMS-TS was listed as a cause. Hospital admissions were disproportionately in children from the most deprived areas and from minority ethnic backgrounds, the same children who bore the heaviest costs of school closure.
PIMS-TS, a dangerous inflammatory syndrome that could attack children several weeks after infection, was described for the first time in May 2020, during the first wave. It is rare: in England, during the January 2021 wave, it was estimated at roughly one in 2,600 infections in children but it is serious. Of the 1,790 children admitted with it in our cohort, 30% needed intensive or high dependency care, the highest proportion of any category of admission we looked at.
Then there are the children who develop Long Covid. It is hard to measure (especially as Covid infections in children are more likely to be either ‘non-typical’ symptoms or asymomptatic and so are often missed) and so there are a wide range of estimates for how common it is. I will use conservative figures from high quality studies. Among adolescents, the CLoCk study matched those who tested positive against those who tested negative and found, three months later, 30% of children with Covid infection had three or more persistent symptoms vs 16% of those with no confirmed Covid infection. The comparison group lived through the same pandemic and the same school disruption, so that gap of roughly 14 percentage points is an excess attributable to infection.
The ONS Schools Infection Survey estimated that 1.8% of primary and 4.8% of secondary pupils had symptoms lasting at least twelve weeks after a positive test that affected their daily life. Among adults, the REACT programme’s study of 242,712 people, compared against people who had never been infected, put persistent symptoms at 7.5% at twelve weeks and 5.2% at a year, and found longer durations for infections acquired when the original variant was dominant in 2020. That is exactly the variant a first wave mass infection event would have involved.
And more than 16,000 children in the UK lost a parent to covid.
This idea that we could have simply kept schools open, without changing anything else, and all would have been fine is just not supported by the evidence.
So what are the lessons?
We need to build a system in which we do not need to close schools (and even then, a virus may emerge that makes this impossible). Evidence from Covid did find that schools with better mitigations had lower infection rates than those without.
I suggest six key learning points.
1. Do not prejudge the next pandemic. Everything in the section above is knowledge about SARS-CoV-2 (coronavirus). It says nothing at all about what the next pandemic virus will do. Influenza pandemics have often hit the young hardest (e.g. 1918 or 2009). Turning “covid was milder in children than adults” into “never close schools” is fundamentally stupid.
2. Clean air as infrastructure. Ventilation and air quality standards in school buildings, should be funded and built before the next airborne pandemic rather than procured in a panic during it. This will make it easier to keep children in school during an airborne pandemic, while having a whole host of other benefits on child health and learning in normal times.
3. Invest in effective public health measures. Open schools are an outcome, and to get there we need cleaner indoor air, excellent community testing and contact tracing, generous support for isolation and a host of other public health measures including early action to suppress growth.
4. Support children in disadvantaged communities, funded in advance. This includes devices, connectivity, food, safe spaces to learn, and the staff to deliver catch up. The unequal impact of the pandemic on children was inherited from our ongoing deep structural inequalities.
5. Mental health and social support during school closures designed in from day one. If school closures do become necessary, have a planned and strong roll-out of measures to support mental health and social contact. The ongoing technological revolution should make this easier.
6. Build the capacity to generate evidence faster next time. It took years to establish what covid did to children and how much schools contributed to transmission. Surveillance and study designs that can deliver that within months, rather than years, would support schools to stay open during pandemic waves, because they are what tells us how to do it.
[i] I’ve published quite a bit on children and covid including: a peer-reviewed BMJ analysis of how UK policy on children and schools related to the evidence available at each point; a peer-reviewed BMJ cohort study of 3.2 million children in England examining who was admitted to hospital with Covid and why; a short piece on Long Covid in Children for Lancet Child & Adolescent Health.
Epiphyte City
Virtue Hoarders by Catherine Liu (University of Minnesota Press, 2021)
Catherine Liu argues that the professional managerial class (PMC) are marked by their use of meritocracy, philanthropy, and virtue signaling to promote the core premise of neoliberal economics: an isolationist individualism that simultaneously preaches self-sufficiency and achievement and blocks collective efforts towards social justice. Liu is unsparing in her assessment of the PMC, and the book is an uncomfortable read if, like me, you are an erstwhile member of it. But we cannot change or interrupt what we cannot face, and here is our chance to face it—to look squarely at the set of cultural and political practices that the PMC have promulgated and come to terms with what they have wrought. Liu concludes that the principles of professionalism itself—with its twin concerns for truth and accountability—are critical to upending capitalism and building towards socialism. But only if the PMC get out of the way.
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Epiphyte City
In Virtue Hoarders, Catherine Liu’s polemic against the professional managerial class, she calls attention to how Obama talked about reading in the waning days of his presidency. In his farewell address on January 10, 2017, he said:
Social attitudes oftentimes take generations to change. But if our democracy is to work in this increasingly diverse nation, then each one of us need to try to heed the advice of a great character in American fiction—Atticus Finch—who said “You never really understand a person until you consider things from his point of view…until you climb into his skin and walk around in it.”
Obama paraphrased this line a few days later, in an interview with Michiko Kakutani for the New York Times book review, where he said that reading allowed him to “get in somebody else’s shoes.” It’s a curious reference. Finch is the white lawyer who represents a Black man falsely accused of raping a white woman, in Harper Lee’s 1960 novel, To Kill a Mockingbird. The villain in the novel is a man named Bob Ewell, the woman’s father, who beats her and helps her frame the Black man for the crime. As Liu notes, the book holds up Finch as the “good” white man who fights for justice while Ewells are the “bad” white people who live off public assistance. But in Go Set a Watchman, the sequel published1 in 2015—eighteen months before Obama’s speech—it’s revealed that Atticus Finch was a member of the Klan.
Many Klansmen were in fact educated and upstanding citizens by day, even as they donned hoods and rained terror at night. Their daytime performance of polite civilization was as much a mask for the violence and brutality as the hoods themselves. Similarly, Liu points out that Finch’s righteousness and commitment to justice contrasts with Ewell’s “white trash” status to elevate Finch into white saviorhood while simultaneously denigrating the people who depend on welfare—valorizing the performance of justice absent the realization of it.
Liu locates a similar move in Obama’s embrace of his role as “reader-in-chief.” Despite a public commitment to raising educational standards, Obama’s policies “left 19.3 percent of American children under the age of five living in extreme poverty.”2 That is, while Obama ostensibly raised educational standards, he did not substantially increase funding to schools, nor did he upend the anti-labor practices that punished teachers when their (often poor) students didn’t make the cut. And those same standards promoted an approach to reading in which stories were stripped of their social and political standpoint and read naively, as if the world from which the stories emerged didn’t exist. Liu asks us to imagine a child from that nineteen percent of the population, being instructed to read a book in which those who take public assistance are dismissed as trash, while responding to a prescriptive writing prompt about how the book asks people to “take a stand.” But who is taking that stand, and for what?
Liu writes: “Atticus and Obama showed us that individual acts of empathy and private self-cultivation would produce justice and understanding in a world torn apart by racism and violence.”3 This is what Jade Davis warns of in The Other Side of Empathy, the reproduction of an empathy culture in which “change and action stop being necessary…because the feeling and sense of understanding are action enough.”4 Rather than giving someone money, we feel what it’s like to walk in their shoes; rather than ending social disparities, we passively read stories about their lives. In this mode, empathy is a kind of terminating gesture: once you’ve empathized with someone else, you’re relieved of taking any action on their behalf.
Liu proposes: “Let us read Atticus Finch as a political project and the novel in which he exists as a piece of well-crafted, anti-welfare state, antisocialist propaganda. Reading matters deeply, but not in the way Obama and Kakutani want it to.”5 That is, reading isn’t about reaching empathic dead ends, or recruiting platitudes about how we must understand each other; it isn’t about the performance of social class absent a criticism of that class structure. To reduce reading to the practice of empathy is to divorce it of its real power and pleasure: to enjoy the fruits of another person’s creative effort, to think with the writer and their characters, not becoming them, but becoming more fully yourself. But this means that you are there when you are reading; you, the reader, with your feet on the ground, a ground on which racism, misogyny, and extreme poverty are not so easily dispatched. You must read where you are, not in some hypothetical sanitized reading room, but in the dirt. To use reading to step into someone else’s shoes is to leave yourself behind.
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There is some controversy here: it’s unclear whether or not Lee approved of this publication (she died early the following year), and while her publisher insisted the book was always intended as a sequel, it seems more likely that it was an earlier draft of To Kill a Mockingbird. In either case, there is no disputing that Lee wrote both books. ↩︎
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Liu, Virtue Hoarders, page 49. ↩︎
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Ibid., page 46. ↩︎
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Davis, The Other Side of Empathy, page 2. ↩︎
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Liu, Virtue Hoarders, page 55. ↩︎
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Epiphyte City
Sometimes even I can be sickened by the banality of evil:
The government has decided to cut reimbursements for “heavy users” of healthcare. The purchase of medications and consultations are targeted by this trim. But who is affected? #JT13h
— franceinfo (@franceinfo) July 23, 2026
“Heavy users of healthcare”, aka: the sickest people.
Always it is the weakest who are targeted. Once we taxed the rich to help the poor, now we kill the poor so the rich can afford another vacation property or mega-yacht, or, really, keep up with the Musks.
When the revolution comes, people like Macron need to be charged with mass homicide, and either be executed or sent to prison if (when) they are found guilty.
The West’s rich are in a red-Queen’s race with each other. If you fall behind, you get bought out and even if you still have lots of money, you’re no longer a player in the game. To keep their place in this game they must immiserate everyone else. The other option, to stop playing the game and put in controls over buying out other members of the elite never serious occurs to them.
It’s similar to how carbon taxes are always regressive, rather than massively hitting private jets and private mega-yachts and people with multiple homes. Nope, hit farmers and ordinary people. Certainly don’t really tax oil majors.
The West has only one inviolable rule during this sub-ideological period: the rich must always get richer. Everything else is sacrificed to that goal.
What I write here is for the benefit of everyone, but alas, I live in capitalism and I, and the site, take money to keep running. If you value the writing here and can, please subscribe or donate.
Epiphyte City
There was a time when throwing up during pregnancy wasn’t just seen as a frustrating symptom. Instead, some doctors considered this fetus-induced queasiness as the harbinger of a lifelong, debilitating condition for the unborn child—and they called this condition “idiocy.”
Back in the late 1800s, beliefs about this so-called “poverty of the mind” were rapidly evolving. Vomiting during pregnancy was just one of many hypothesized causes, with everything from neurotic parents to the weather considered possible culprits at one time or another. At the extreme, some medical professionals even saw idiocy as a moral failure—a sign that children, or their parents, had “so far violated the natural laws” that their bodies were no longer fit to house the “powers of the soul.”
It is easy to condemn these early theories from where we stand today, decades of medical and psychological research later. But doing so would be a disservice to the complex and surprisingly recent history of what we now understand as intellectual disability.
“The history is an incredibly sobering one,” says David Wright, historian at McGill University in Canada. “But try to understand the past in its own terms … not to ignore the terrible things that occurred, but also try to understand the context in which they occurred.”
Wright grew up in Ontario, Canada, with a sister, Susan, who was born with Down’s syndrome. His family’s experiences navigating Susan’s condition motivated him to study the history of the asylums—or as they were later called, “institutions”—where people with intellectual disabilities were sent to spend their lives in medicalized settings.
Read more: “A Mental Disease by Any Other Name”
“My sister was born in the 1960s, and my mother was encouraged to send her to an institution,” he says. “That is what one did, right? That would be better for her, that’d be better for the family, that’d be better for society.”
Wright’s mother declined, as did a growing number of parents facing the same decision in that era. Although these institutions were still the norm, shocking exposees by journalists, photographers, researchers, and advocates had started to call their use into question. Harrowing accounts of life on the inside revealed frequent cases of physical, sexual, and emotional abuse: Heavily-sedated people walking through the halls in drug-induced stupors. People sleeping on concrete floors, naked, sometimes in their own excrement. By the time Niels Erik Bank-Mikkelsen, director of the Danish Service for the Mentally Retarded, visited the Sonoma State Hospital in 1967, he described it as “worse than any institution I have seen … In our country, we would not be allowed to treat cattle like that.”
Despite these disturbing accounts and growing public skepticism, society’s longstanding reliance on these facilities meant it took more than three decades for most of the last long-stay residential institutions in North America to close. “These were full of thousands of people,” Wright explains. “You couldn’t just discharge them all.”
What the hell is going on here?”
That’s what historian and writer Simon Jarrett found himself wondering when he arrived at one such institution, back in the 1980s. He’d been working with people with intellectual disabilities for years, but never in an institutional setting like this one. In need of a job, he decided to try a role as a nursing assistant, not knowing quite what he’d encounter.
“There were guys … who’d been in there since they were 5 years old,” Jarrett recalls. “They had gone in in the 1910s or the 1920s and they were just going to live out their whole lives there. And I thought, ‘How did this come about?’”
STRANGER THAN FICTION: This engraving was made from the 18th-century painting The Madhouse, by English artist William Hogarth as part of a series, called A Rake's Progress, that traced the tale of Tom Rakewell, who wastes his family fortune and ends up in Bethlehem Hospital, a mental institution. Though the story is fictional, the scene is based on London's infamous Bethlehem (Bedlam) Royal Hospital, an asylum where people with all manner of psychiatric disorders were mistreated in squalid conditions for centuries. Image by William Hogarth / Wikipedia.That initial question became the seed for a decades-long career exploring the history of intellectual disability, especially the centuries before long-term residential institutions became the norm. By digging into old court proceedings, caricatures, jokes, and other documents describing the daily lives of “idiots,” “half-idiots,” and “imbeciles,” Jarrett’s research has shown that society has not always been so quick to hide people with disabilities from view.
“They were part of the conversation,” he says. “The institution simply wasn’t an option for disabled people prior to this big asylum movement that happened in the 19th century, so the locus of care for people was in the home and the neighborhood—the community.”
Particularly striking are the “Old Bailey” criminal court proceedings, which describe countless examples of people sticking up for “idiot” neighbors, friends, or family members who had been accused of minor crimes in a London court from 1674–1913.
Take the story of Ann Wildman, for example, who was tried for stealing “nine yards of black silk ribbon” in 1762. Multiple community members stepped forward in her defense, including her mistress, who argued that “she was very silly, but had behaved honestly before” and promised to take her into her charge if her name was cleared.
The trial of Peter Cunniford, accused of stealing a coat in 1759, tells a similar story. Cunniford’s brother, in-law, employer, former roommate, and two colleagues all testified to his character, emphasizing that he was “next kin to an idiot” but also hard-working, well-behaved, and, most importantly, “honest.” Both Wildman and Cunniford were eventually acquitted, as were many other people who presumably had intellectual disabilities tried around the same time.
Of course, life before institutionalization was far from perfect for people with intellectual disabilities. There were no formal supports available, some people were teased or bullied, and many lived in very poor conditions. But Jarrett emphasizes that quality of life was worse for almost everyone back in the 18th century, not just those with intellectual disabilities—a kind of “equal opportunity terrible,” as he puts it.
Stories like those in the Old Bailey trial records are important, because they suggest that people with intellectual disabilities were not necessarily outcast or marginalized. In fact, for centuries, the designation “idiot” was not used as an insult, but as a legal term, reflecting whether a person was mentally fit to manage their own property, get married, or be held criminally responsible for their actions.
For Jarrett, the Old Bailey trials are also significant because they are evidence that people with intellectual disabilities were often able to work and live at least semi-independently in their communities. Some, like Wildman and Cunniford, were described by witnesses as valued workers and productive members of society.
This way of thinking seems to have been eradicated by decades of institutionalization, as Jarrett experienced firsthand when institutions started to close and people were resettled back in their communities.
“Everyone in the hospital told us it wouldn’t work: ‘Well, they’ll all walk into the road and get knocked over by a car. They’ll fall out of a window, because they’d never been upstairs,’” he recalls. “[But] they did incredibly well … the only thing that happened was they all burnt their mouths on the food, because they weren’t used to having hot food.”
It’s clear that somewhere between the 1700s, when the bulk of the Old Bailey trials took place, and the late 1900s, when institutions finally shut their doors, society’s understanding of intellectual disability underwent a radical shift. What’s less clear is exactly what led to this misguided notion that people with intellectual disability had to be contained and controlled, rather than integrated.
Jarrett attributes the move toward institutionalization to a wider change in mindset sparked by the French Revolution around the end of the 18th century. The radical overthrowal of the social hierarchy that took place in France led both reactionaries and progressives internationally to see people with disabilities as problematic—but for very different reasons.
The reactionaries were horrified that the poor, whom they saw as an “imbecile class,” had overthrown the wealthy elite in France. As a result, Jarrett says elites “became very frightened, suspicious, hostile toward anybody that displayed extreme signs of difference from anyone else, because these people were a threat.”
The progressives, on the other hand, had started to envision a better future, promoting utopic visions of a society free of illness, disease, and, in the most optimistic accounts, even death. “For them, the [intellectually] disabled person … was not one who belongs in this new society,” Jarrett says.
Adding to this were other factors, including the growing authority of the medical profession, scientific attempts to investigate idiocy and its causes, and Enlightenment beliefs that humankind could be improved. According to Wright, financial considerations also played a role, as many “respectable” families did not have the funds to provide private care for their loved ones.
Wright says the institution was introduced in this context as a promising solution, as an “investment of society.” The idea was to provide modern medical care and, where possible, treatment for people suffering from disabilities and mental illness. Institutions were often framed as temporary, educational facilities where children could spend a few years gaining self-care skills, developing basic literacy, or learning a trade, before eventually reintegrating into society.
“It’s a very progressive, self-congratulatory approach,” Wright explains. “An argument that [people with intellectual disabilities] are amenable to educational and social improvement in a way that past generations, who were foolish and unscientific, never appreciated.” At least in theory, institutions were introduced as a path toward social progress.
The problem, Wright explains, is that these facilities failed to deliver the utopian results they promised. Residents did not typically “improve” in the ways that proponents of institutionalization had hoped. Moreover, in the cases where children with intellectual disabilities were able to be discharged, “some families refused to take them back.” Many parents, especially those near the poverty line, simply didn’t have the resources to care for the loved ones they’d previously sent away.
Read more: “Yes, You Can Catch Insanity”
While more and more children entered these facilities, very few ever left them. In this sense, Wright says these institutions “became victims of their own success”—too popular to house the droves of people entering them. Huge swaths of residents were needed to work the fields that produced the food some of these institutions ran on, creating a self-perpetuating cycle where more and more residents were needed to feed the growing number of mouths housed in an institution’s walls. Over time, facilities became overcrowded, funding dwindled, and conditions rapidly deteriorated.
In perhaps the darkest moment of disability history, progressive ideals about “improving” humankind started to take a new, more extreme shape toward the end of the 1800s, as eugenicists promoted deeply unethical beliefs about controlling human genetics to produce a more intelligent, productive, “ideal” human race. In line with this vision, institutions kept women and men in separate wings to prevent them from reproducing. Some started sterilizing residents—a practice that continued as late as the 1970s in some parts of North America. In California alone, almost 300 people with intellectual disabilities were sterilized during the 20th century, under this deeply flawed mandate to produce the “perfect” society.
Eugenics-driven sterilization efforts disproportionately impacted people at the margins of society, including people with disabilities but also immigrants, the poor, and people of color. Black people were especially impacted, because they were seen by the white elite as “idiotic and imbecilic” by default—a perception reinforced by racial biases in the intelligence tests that were used to assess “feeblemindedness.”
It’s undeniable that conditions for people with intellectual disabilities have improved in the decades since. We no longer sterilize people or prevent them from reproducing. Most people with intellectual disabilities live at home or in smaller community facilities, rather than in overcrowded institutions hidden from society’s view. In the United States, legislation currently ensures people with intellectual disabilities have the right to go to school and live life, just like anyone else. With support, they can now learn alongside their peers, grow up, get jobs, and be part of society.
But Mary Hartley, president of the disability advocacy organization The Arc of Greater Pittsburgh (Achieva), warns that this legislation may be in jeopardy. “There have been multiple discussions, if not threats, from United States federal offices about these hard-fought rights,” she says. “We really can’t afford to go back at all … it is deeply, deeply concerning.”
On June 18, 2026, the U.S. Department of Justice published a legal opinion that questions a seminal disability rights decision from the Supreme Court, Olmstead v. L.C., delivered in 1999. Olmstead was a landmark moment, as it recognized the institutionalization of people with disabilities as a form of discrimination under the Americans with Disabilities Act (ADA). In the decades since, it has allowed people and their families to advocate for the support they need to live life in their communities, rather than cordoned off from society.
The recent opinion presents a reanalysis of the 1999 documentation to conclude that Olmstead “held nothing more than that unjustified institutionalization of individuals with mental disabilities can constitute discrimination on the basis of disability.” While this recognition of discrimination is often used to “demand certain treatment services from states,” the legal opinion argues this right to services “is not granted” by current legislation and is thus “unlawful.”
While an opinion statement alone isn’t enough to change the law, The Arc has warned it cannot be taken lightly. “[R]ights mean less when the federal government refuses to enforce them,” reads a statement on the organization’s website. “This opinion seeks to undermine one of the strongest protections people with disabilities have from being pushed into institutions when they can and want to live in the community.”
The publication of the government’s opinion on Olmstead follows several other concerning developments, including the largest ever funding cuts to Medicaid, the governmental financial support that makes community living possible for people with intellectual disabilities, and a planned reorganization of the offices responsible for special education that could make it more difficult for parents to demand supports for their kids—and to hold schools accountable when they don’t provide them. Collectively, these developments threaten to undermine decades of advocacy work to ensure people with disabilities are integrated, rather than institutionalized.
As a parent of a son with autism, these threats hit close to home for Hartley. “I’m deeply, deeply concerned about … the health and safety of people with disabilities,” she says. “History has shown when people are segregated, the one thing you can count on is abuse … When other people don’t have eyes on you, can’t report something, that’s when abuse happens, that’s when neglect happens.”
These legal, policy, and financial threats underscore how fragile the line separating historical injustices from current realities can be, and how easy it is to overlook the flaws of the present when scrutinizing the past. “We’re talking about how marvelous we are, because we’re moving [people] back [into community],” Jarrett says. “But there’s much more of a conditional acceptance now than there was before. You have to conform … to be an acceptable person in the community.”
Wright agrees: “I don’t think we can look at our society today and say, well, ‘Look how far we’ve come in terms of providing supports and integration.’ I don’t think we have. I don’t think society largely cares. I don’t think it’s a priority.” 
Lead image: vectorial / Adobe Stock
Epiphyte City
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