What RFK Jr. Doesn’t Understand About Disability
The HHS secretary’s ignorance of the political history of disability shows he is the last person who should have a role in shaping its future.
IF YOU’RE YOUNGER THAN ABOUT 60, you probably don’t know anyone who’s had measles, because almost everyone you know got their shots as a kid. The measles, mumps, and rubella (MMR) vaccine has been widespread for decades. It’s a triumph of medicine: The United States, which once saw hundreds of thousands of measles infections a year, recently fell below two hundred a year. It was under control—effectively “eliminated.”
So far this year, though, measles has re-emerged in thirty states, surpassing the count for all of last year. If you’ve never encountered measles, mild cases resemble the flu, but with a nasty rash all over the body. In young children, though, complications from measles can be deadly; it’s already killed children in Texas this year.
Why is measles back? In short, measles numbers are up because vaccination numbers are down. In many parts of the United States, the MMR vaccination rate is below the threshold that would protect people who can’t receive the vaccine themselves for medical reasons. Clashes over the COVID-19 vaccine helped turn vaccination into an increasingly partisan issue, but the MMR vaccine has been a target of the anti-vax movement for much longer: It’s the shot that gave rise to the modern outrage about vaccines, with rumors of mercury, side effects, and lifelong disability swirling around it.
Why parents avoid vaccines is as complex as any other question of human behavior. (As The Bulwark has reported, under Secretary of Health and Human Services Robert F. Kennedy Jr., the National Institutes of Health will stop researching reasons for vaccine hesitancy; the Department of Health and Human Services is now less equipped to ensure our food is safe, our medicine is effective, and our loved ones protected from infection. On Friday, Kennedy doubled down on his support for experimental treatments for measles at the expense of prevention by vaccine.) Fear of the unknown is understandable. We’ve all become sick and eventually recovered, but vaccines are made by scientists in a faraway lab before doctors inject them into our bodies. You can’t trust anyone these days. How can you believe that the doctor knows best?
ONE WAY OF THINKING ABOUT DISABILITY involves defining it as any condition where something is “wrong” with a person’s body or mind: They can’t walk, or hear, or see, or they are worse than expected at learning information or focusing on a task. Another way of thinking about disability is that it is what happens when a body or mind doesn’t fit into the world’s physical constraints or social rules: A person disabled by a world of staircases could have an independent, dignified life if ramps and elevators weren’t an afterthought. (The rules can change with surprising ease: For instance, the cultural meaning of a walking stick has shifted between inelegant mobility aid and chic fashion accessory at multiple moments in history.)
Unlike other traits that attract discrimination and bigotry, like race or sex, a disabled status is something any of us could acquire at any time. Luck is the only thing that keeps you “temporarily non-disabled,” as some activists joke. And with luck, you will live to a ripe old age—the time of life when one disability or another becomes inevitable.
Luck is unfashionable in bootstrap America, with its disavowal of things like structural racism or generational wealth as factors that can influence life outcomes. Many in power today reject the idea that being born in another family, or in another place, would dramatically change how a person turns out. The randomness of disability, then, is an affront to the hardline meritocratic worldview: Even if a lifelong disability wasn’t the result of an accident, there must be some immediate cause for it—something that could, in theory, be prevented or fixed.
Lately, powerful men including Kennedy have renewed their speculation about the cause of autism. Lies about autism’s link to the MMR vaccine are what cost Andrew Wakefield, the original propounder of those lies, his medical license. (They are also in some part responsible for Kennedy’s career change from environmental lawyer to public health doubter.) In spite of his professed dedication to furthering our understanding of autism, Kennedy has gone along with the Trump administration in largely defunding further research into the condition.
After decades of research, scientists tend to talk about autism as arising from a complex mix of factors—mostly genetic, sometimes environmental. (The word “constellation” is often used to convey the variability of autism, both in genotype and phenotype.) Nevertheless, Kennedy and his allies have persisted in calling autism a “preventable disease” that “destroys families,” and he has tied it to a “chronic disease epidemic.” Autistic people, he has claimed, “will never pay taxes,” work, play baseball, or otherwise participate in ordinary life. He apparently believes that our improved diagnosis of autism, and the greater visibility of autistic people, are signs of a public health crisis rather than signs of improved childhood services and a larger move away from secretive, abusive mental institutions.
Having vowed to announce a definitive cause of autism by September—a promise that can only be fulfilled on such a tight timetable if the answer is a foregone conclusion—his department then signaled plans to create an autism registry based on accessing autistic Americans’ private medical records. (Those plans have since been walked back, and a department flack says the project is better understood as a “data platform.”)
Kennedy’s claims about autism involve multiple inaccuracies that are easily debunked. (And indeed, among those to offer rebuttals have been Kennedy’s own family members, whose forceful denunciations of his remarks about ability and disability are shaded by the remembrance of their family’s treatment of RFK Jr.’s aunt Rosemary.)
But Kennedy’s assertions also rest on a more foundational error: an assumption that a life is only worth what it can give back to society. This idea, in turn, is also central to the suggestion that “severely” autistic people—those Kennedy’s defenders might say he really has in mind—differ in kind from the rest. Such “productive” autistic people, like Elon Musk, would in the past have been diagnosed with Asperger syndrome. (This distinction did not protect Dr. Hans Asperger’s own patients, in whose murder by the Third Reich he acquiesced.)
Kennedy seems to have a subtractive view of autism, a belief that it steals a child’s “true self” from their innocent parents. This and similar attitudes have been present for decades: One infamous ad campaign depicted autism as a kidnapper of children, threatening parents with ransom notes. This also explains why the puzzle piece has become a symbol of autism: to parents who see it as a disturbance or aberration, something is missing from their child, and they wish for that problem to be “solved.” Autistic adults, who are former autistic children, generally dislike the symbol, and some have offered the infinity symbol as an alternative, emphasizing their wholeness—each individual, no matter their condition, is a complete universe. Their goal for the public perception of autism is not awareness, but acceptance.
Acceptance would entail improving normal workaday support for autistic people—according to the view of disability as a mismatch with the environment, to make society less disabling for them. But this renewed focus on autism’s causes (and potential “cures”) seems to be taking place at the expense of improving and supporting autistic people’s lives, not alongside it. At last count around half a decade ago, over half of all federal autism research funding went to projects focused on either biology or genetics; just 5 percent supported research on services and supports. Many in power would rather cure an imagined future autistic person—something that is probably impossible—than ensure a happy, adequately supported life for an actually existing autistic person today.
Admittedly, autism is an especially divisive topic. Proud autistic self-advocates see it as an innate gift and part of their identity, reflecting the infinite range of human variation, which leaves them little common ground with those who consider it a debilitating condition to be eliminated. The latest actions from the Department of Health and Human Services, however, have elicited unified opposition from a broad swath of autism organizations that otherwise normally agree on little. Their message is clear: Autistic lives deserve respect and dignity, and fearmongering about vaccines is not going to change the rate at which autism is diagnosed. What it will do is accelerate the spread and increase the severity of actual preventable diseases.
THE MMR VACCINE, WHICH COULD have prevented the illness and death that measles is now causing across the country, was introduced in 1971 following a decade that saw the emergence of its three component vaccines. Back then, among the trio of measles, mumps, and rubella, the most notorious villain was rubella. In pregnancy, rubella results in congenital rubella syndrome, which, if it is not deadly, affects the baby’s hearing, vision, or function of the brain or heart. (Amid a recent measles outbreak in Texas, there was a mistaken but credible report of a case of rubella as well.)
A rubella outbreak in 1964–65 infected 12.5 million Americans. As a result, 11,000 babies died in the womb and 12,000 were born deaf; others were born blind or intellectually disabled. When the MMR vaccine was introduced a few years later, it was a godsend.
Like autism today, deafness was once deeply polarizing. For over a century, scientists like Alexander Graham Bell had sought to eliminate evidence of deafness from polite society. Even as deaf schools punished sign language with restraints or mittens, spending most of the day on speech and lip-reading instead of math or literature, deaf communities, especially congenitally deaf families, celebrated the unique perspective and culture that grew from signing and an intensely visual view of the world. Where the mainstream world described only their “hearing loss”—another exclusively subtractive view—they experienced something hearing people could not: “deaf gain.”
It was also in the 1960s, nearly coincident with the rubella epidemic, that American Sign Language started to gain recognition as a language in its own right, with a consistent grammar distinct from that of English. The “rubella generation” was entering a deaf world in the middle of a revolution: After decades of suppression, ASL had finally become a source of pride. As the headlines saw marches for racial equality, deaf America was building an identity. In 1977, disabled activists occupied a federal building to demand enforcement of an existing nondiscrimination law; when the phone lines were cut, it was deaf signers who, through the window, kept contact with the outside world.
As rubella’s children approached adulthood, the country’s two deaf-centric college institutions feared the squeeze. But the result was a flourishing, not an implosion. Without the critical mass of proudly deaf students, Gallaudet University in Washington, D.C. may never have seen the famous revolt that forced the board of trustees to appoint its first deaf president.
And those “Deaf President Now” protests in the streets of Washington paved the way, a few years later, for the dramatic crawl up the Capitol steps that emphasized the need for a law protecting disabled Americans’ civil rights. (When Capitol police arrested protesting wheelchair users later that day in the Rotunda, they encountered a logistical problem: There was just one elevator in the building. The absence of access requirements meant they had to be hauled out one by one over the course of many hours.) This pressure helped lead to the passage of the Americans with Disabilities Act, which has shaped the physical and moral landscape of the country we live in today.
The 1960s rubella outbreak was a tragedy: Many thousands of babies died needlessly, and others were set on a path their parents could not have imagined for them. But this tragedy was not visited on the survivors. Life in a world designed for the hearing was intensely challenging, but as medicine progressed and vaccines allowed us to prevent mass death, the living children of rubella were able to live as citizens with dignity and worth. In their numbers, they were able to take up the prerogatives of citizenship through political action. Equality with the hearing world was largely irrelevant: What they demanded was the right to determine their own future.
Today, in its words and deeds, the government seems to treat autistic life as a deadly infection while dismissing the very real threat of preventable disease as merely the cost of liberty. This is exactly backwards. Each human life—no matter how much it might diverge from the expectations of the powerful—is a self-grounding good; it is its own reward. If Kennedy is sincere about finding a cause for the suffering he sees, he would do well to begin his search in his own heart.
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