During World War II, the United States faced a labor crisis. Young men were at war, and work was still needed at home. But the young women who could replace them in the factories were often busy looking after their children. In response, the US government offered child care to any community where women’s labor participation was needed for the war effort. The federal government allocated about $52 million, with $26 million added by the states, adding up to about $1.5 billion in 2023 dollars. Families paid 50 cents per day (or about $7 today), which also covered lunch and snacks. Around 600,000 kids received child care through this program.

And when the war ended, the US government abandoned this nearly universal child care program, and Americans have never seen anything like it on this scale since. The experience proved that universal child care was possible—even fiscally prudent, as the value of the labor to the economy greatly outstripped the costs. Yet we’ve never gone back to this. We have targeted support for some families, but no universal benefit that would revolutionize caregiving, parenting, and labor.

At the beginning of the pandemic in March 2020, President Donald Trump and the US Congress enacted a flurry of measures intended to soften the blow of the coming economic crisis. Just like the child care measures funded by the Lanham Act of 1940, the federal government launched us into a great experiment, pushing us closer than ever to achieving the most unlikely of outcomes: free college and universal health care. Over the past three years, tens of millions of Americans have not had to pay anything toward their student debt, and even more Americans have gotten health care through Medicaid and Children’s Health Insurance Programs (CHIP) without having to worry about maintaining eligibility.

Unfortunately, with President Joe Biden’s announcement at the end of January to formally end the public health emergency in May, these positive outcomes of a terrible pandemic will cease. For years, pundits—right-wing and liberal alike—have warned that making health care and education free would cost too much, crash the economy, and lead to laziness. Yet when we look at the actual outcomes of these three experimental years—under the most adverse circumstances—we see something different. Right now, we have reached the lowest percentage of Americans without health insurancein US history. At the same time, more than 30 million Americans have seen their credit scores rise as result of the loan repayment freeze, while having generally more money for essentials.

Recently, the Biden administration has been rightly pointing out that the economy is surging, but we’re not seeing enough progressive politicians consistently draw connections between these policies and the strong economy. As we confront losing these programs, it’s worth recognizing what we just achieved.

Let’s take “free college” first. A pause in debt repayments isn’t the same thing as zero-cost education, but for borrowers, the freeze has been transformative. It started in mid-March 2020, when President Trump suspended federal loan payments and interest for 60 days, a policy then extended for a year by the Coronavirus Aid, Relief, and Economic Security Act a few weeks later. President Biden has further extended the policy eight times. Currently, repayments will start either 60 days after his debt relief plan goes into effect (if it makes it through the Supreme Court) or at the end of August, whichever comes first. Meanwhile, nearly 37 million borrowers are not required to make payments. Their credit scores are improving dramatically, which has allowed more younger people to, for example, purchase houses. While some borrowers have spent the extra money on big-ticket purchases (good for the economy!), a majority have used the funds to pay off credit-card debt and for basic needs like housing, food, and utilities.

One article from the magazine Money, hardly a bastion of progressive thought, recounted the story of Jennifer Cardenas, a Latina first-generation college student who graduated from Columbia University. She has paid down her thousands of dollars of credit-card debt, bought a washing machine for her parents, and can now see her way clear to applying to law school. This is the kind of investment that pays off for all of society.

I have a personal stake here. As an undergraduate adviser at a public university in a history department, I know how fear of debt shapes student decisions about what to study. I’ve talked to hundreds of undergraduates over the years who have chased after a degree they thought would pay well, only to find out that being a mediocre accounting major, for example, is neither as satisfying nor lucrative as excelling in a field you love. There’s been a lot of angst lately about the decline of the study of history, angst I share. The best way forward for the humanities is to push for lowering the cost of college so people can study the topics they love without panicking about debt.

I also have a personal stake in Medicaid, because my son, an autistic boy with Down syndrome, is enrolled. Over the years, the experience of trying to keep him enrolled has required endless hours of paperwork, arguments, and stress. In fact, I have paperwork sitting in my inbox right now that I’m avoiding, because I know it will involve endless filling out of personal information just so the state can confirm, once again, that my son still has Down syndrome. But even if I don’t get it done in time, my county can’t boot my son off the program thanks to the policies enacted at the beginning of the pandemic. The Families First Coronavirus Response Act contained a provision that required states to shift all Medicaid programs to continuous enrollment (in exchange for more funding), meaning that anyone who was on Medicaid or the Children’s Health Insurance Program (CHIP) as of March 18, 2020, or who has become eligible since cannot be kicked out of the program even if their financial situation changes—or if they are late getting their paperwork in.

The paperwork problem is real. Millions of Americans every year are removed from Medicaid despite having been eligible because they didn’t receive forms (often sent in the mail to the wrong address), didn’t understand them, or were simply overwhelmed. Others lose coverage because they receive a temporary bump in income but quickly fall back under the cap as jobs end or circumstances change. This churn creates high administrative costs for the state, but, more importantly, it results in people losing the care they need.

But not so under the continuous enrollment policy. About 91 million Americans are now covered through Medicaid and CHIP, up from about 70 million before the pandemic. That includes over 41 million children. With well over a quarter of Americans now receiving free public care through Medicaid, added to Medicare, plans through the Affordable Care Act, and of course the continuation of private employment-based health care, we’ve reached the lowest percentage of uninsured Americans in our history. Only 3.7 percent of children lack insurance, down from 6.4 percent in 2020. Just as with “free” college, this isn’t truly “universal” health care, but it’s closer than we’ve ever been.

But the omnibus spending bill that Biden signed into law this last December ends the continuous enrollment policy by April 1—though it does include some new tools to strengthen the safety net. The Department of Health and Human Services estimates that over 8 million Americans will lose eligibility and hence coverage, which is fair enough, but many won’t seek out other insurance options. About 7 million will be caught up in the churn, losing coverage despite being in fact eligible. Out of these 15 million or so, 5 million will be children.

It doesn’t have to be this way. There’s no reason Democrats should agree to restart student loan payments without significant debt relief and investment in lowering college costs. There’s no reason anyone should be booted off Medicaid unless the state verifies that they are receiving health care through some other program.

But witness how we fumbled our way into (temporarily) free college and (nearly) universal health care, just as we did with universal child care so many decades ago. The programs cost a lot—the repayment freeze is projected to cost $195 billion by June and although the Medicaid disenrollment halt’s numbers aren’t in yet, that too must have cost the US hundreds of billions of dollars. And yet the boost to the economy has been worth it. The saving of lives through reliable health care, likewise.

And so there’s a lesson here. When the uninsured rate starts to rise again, as it will, and if the economy tanks because borrowers no longer have as much spending power, we’ll need to remember that these outcomes are choices. We’ve glimpsed what happens when people don’t worry about losing health care or can go to college debt free: They live longer, get the care they need, escape debt burdens, and are able to make better choices in their lives. Such programs should be the starting point for what we try to do next. Instead, we’re letting a better safety net slip from our grasp.

On October 6 of last year, Erika López Prater, an adjunct professor of art history, showed a well-known medieval image of the Prophet Muhammad to her students. What happened in the classroom is a matter of some dispute and an ongoing lawsuit, but afterward, a Muslim student lodged an official complaint with the university, and eventually the chair of her department informed López Prater that she would not be returning in the spring to teach another course as previously planned. By December, the story had become the latest anecdote in the narrative about political correctness on college campuses, evidence that the “woke mob” was running amok.

But that’s not really what’s been going on, at least according to a group that has been largely left out of the news: the faculty of Hamline University. Yesterday, they were back on campus—the big news story took place over winter break. And today, in an unusual but not unprecedented move (though one more common lately), the faculty gathered for a meeting and voted for a statement calling for the president of Hamline, Fayneese Miller, to resign. According to Mike Reynolds, an English professor at Hamline, it passed overwhelmingly, 71 to 12, with eight abstentions (or 86 percent of the vote). It’s a risky move, but many of the faculty members told me that the president’s mishandling of the current crisis is dividing the community and that the only way to heal those rifts is through new leadership.

They told me that Miller had responded to the crisis by trying to pit students against faculty, but the teachers say they are refusing to take the bait. The faculty are nothing close to the “evil” progressive professors that right-wingers rail against; they are not indoctrinating students with their left-wing ideology. Instead, they insist that there is no conflict between robust debate and academic freedom and respecting your students in all their diversity.

What’s more, they feel that the president has mishandled this crisis, because, in the words of a faculty member who wished not to be named in order to speak candidly about their superior, “our administration overcompensated for a history of dismissing and minimizing and sweeping under the rug numerous incidents on our campus that are racist, Islamophobic, sexist. All of them and more. Specifically, towards students of color who are Muslim.” In other words, tensions in classrooms can happen and do happen whenever a course engages difficult material. But repeated failures of leadership not only to respond to incidents among students but also to problems sparked by the president specifically (according to her critics on the faculty) created the conditions in which the October 6 incident exploded in national controversy. Had there been more trust and better communication among all parties, perhaps the student and the professor might have been able to communicate more effectively about what happened in that class, rather than have it escalate to such a degree.

The resolution engages these issues directly, opening with

We, the faculty of Hamline University, stand for both academic freedom and the education of all students. We affirm both academic freedom and our responsibility to foster an inclusive learning community. Importantly, these values neither contradict nor supersede each other.

It praises diversity, inclusivity, free expression, debate, and “sharing of resources and knowledge without fear of censorship or retaliation.” Furthermore, it both rejects “unfounded accusations of Islamophobia” and condemns “the hateful speech and threats targeting students and other Hamline community members.” It demands due process, applauds those who have spoken out, and concludes: “As we no longer have faith in President Miller’s ability to lead the university forward, we call upon her to immediately tender her resignation to the Hamline University Board of Trustees.”

Shortly after the meeting, I spoke to Jim Scheibel—a professor of public administration, the chair of the faculty council, and a former mayor of St. Paul—who told me, “There are many things I really respected and admired from President Miller, and I think the relations she’s built with some of the students is a big plus.” But he went on, “Hamline is hurting. There is repair that has to be done, but the university is built on a great foundation. It’s the oldest university in Minnesota. The faculty do not believe President Miller is the one to take us through restoring the reputation we once had.”

Hamline media relations did not have a statement in time for publication.

s the story went national, the Hamline administration doubled down on their position that respect for student reactions needed to take precedence over everything else. In the fall, Miller signed a statement saying respect for the Muslim students in the class “should have superseded academic freedom.” As late as January 11, she issued a statement saying that defending “academic freedom [might] infringe upon the rights of students in violation of the very principles you defend,” and chided people who weigh in “from the security of our computer screens.”

On January 17, the board of trustees got involved and issued a joint statement that struck a more conciliatory tone:

Based on all that we have learned, we have determined that our usage of the term “Islamophobic” was therefore flawed. We strongly support academic freedom for all members of the Hamline community. We also believe that academic freedom and support for students can and should co-exist. How this duality is exemplified on our campuses, especially in the current multicultural environment in which we live, is an exciting, robust, and honest conversation for academics, intellectuals, students, and the public to have.

(The chair of the board of trustees did not respond to a request for comment.)

But the faculty have been having plenty of exciting, robust, and honest conversations over the past six years. Still, little has changed. One faculty member I spoke to pointed to the fall of 2019, when white Hamline athletes recorded a video of themselves singing a song that including the n-word. Many students of color said the response was insufficient and criticized a panel to deal with the incident that was composed entirely of white faculty. The administration promised conversations, but students demanded action. A 2021 article in The Oracle, the student newspaper, noted the lack of halal food on campus. A year later, despite pledges from the university to do better, that was still the case. A member of the Hamline community told me students have shared that there is now a single halal station in the dining hall, but that it is usually just a sign saying “Halal Station,” with no food to be seen.

Then, just last September, the campus protested when Miller gave a speech complaining about students who had money for cell phones and Starbucks but did not donate to Hamline. According to The Oracle, the president was not on campus during the protest and did not respond to student concerns. In response to queries, Hamline provided me with a statement reading, in full, “Like many colleges and universities nationwide, Hamline has had its share of incidents that call for community, tolerance and understanding. We strive to create a learning environment even from the most challenging events. This was the case in 2019. The September 2022 event was a small-scale student protest where we redoubled our efforts to take student opinion under full consideration.”

The faculty statement will not be the last word. The president is unlikely to resign. The board clearly is involved, but it’s unclear what it can and will do. And most of all, the students will have their say. On Monday, the day before the faculty meeting, the Muslim Student Association sent a letter to all faculty, thanking the “Administration (President Miller, Dean Marcela, Andy, David & Patti), Athletic Department, Some of faculty/staff members from School of Education, As well as few other faculty Members.” The letter also criticized “the strange silence from many faculty members” in the wake of the October 6 incident. The professors I spoke with would disagree, pointing instead to the way they have been cut out of the process, notified after the press about forthcoming statements, and generally sidelined.

After the meeting, English professor Reynolds told me that this isn’t the first time in Hamline’s history that the faculty have voted no-confidence in their president. “Sometime in [the 1930s], there was a vote of no confidence, and a faculty member was put in as interim president for a couple of years,” he said. “It’s talked about with a kind of lore…‘back when shared governance worked.’”

That’s his hope for what comes next: an interim president. A process to build a stronger shared governance between administration, faculty, staff, and students. A university where everyone is involved. He told me he “didn’t walk out of the meeting aglow with happiness. [Everyone is] unhappy we’re at this juncture. But faculty deliberations were strong and clear and expressed different opinions. I wanted us to hear one another, and I think we did.” He ended the interview making clear that he knew this wasn’t over. As faculty, he said, “we have a lot of work to do.”

When President Joe Biden took office, he immediately began using executive actions to unravel the worst of the Trump administration’s bureaucratic rulings. One of Biden’s first targets was the “public charge” rule, a policy of denying permanent residency or citizenship to people who are likely to rely on the state to meet their basic needs. But over the years, its enforcement has been variable and often limited.

Trump’s Department of Homeland Security shifted the rule from just considering cash benefits, which at the time only 3 percent of noncitizens used, to also looking at Medicaid, SNAP (food stamps), housing aid, and other programs. The formula for how accessing this help might affect a green card application was complicated, but the chilling effect was not. From the day the proposed changes were announced, immigrant families abandoned badly needed nutrition, health care, and other government programs.

Within a month of taking office, President Biden had rolled back the Trump regulation, but 14 Republican state attorneys general soon launched a suit claiming that Biden was sidestepping the rules around making new federal regulations. The Supreme Court is currently deciding whether those states’ attorneys have standing. The Biden administration isn’t assuming victory—wise, given the makeup of the Supreme Court—but the White House can render it largely irrelevant by publishing its own regulation to supersede the Trump one.

The wheels of federal bureaucracy move slowly, but last month the Department of Homeland Security released a “notice of proposed rulemaking” and call for comment by April 25 on a new policy regulating the adjudication of the public charge statute. If this is enacted, it will reshape the degree to which immigrants will be able—and, perhaps more importantly from a public health perspective, will feel able—to access public benefits. Some outside experts, however, remain concerned about the people who may continue to be excluded.

n North America, the public charge doctrine first became codified in the 1882 Immigration Act, which banned anyone “unable to take care of himself or herself without becoming a public charge” from entering the country, a principle reaffirmed by subsequent immigration laws in the 20th century. The current statute, from the 1952 Immigration and Nationality Act, says that a prospective immigrant who, “in the opinion of the consular officer at the time of application for a visa, or in the opinion of the Attorney General at the time of application for admission or adjustment of status, is likely at any time to become a public charge is inadmissible.” In 1996, as part of Clinton-era “welfare reform,” Congress and the president required more stringent enforcement of the public charge rule. The government would take into account age, disability, family size, education, and other related criteria, though the 1999 guidance barred immigration officials from considering food aid (SNAP) and health insurance programs like Medicaid and CHIP.

In the bitter struggles over immigration reform during the Bush and Obama presidencies, public charge policies were not amended or included in potential rulemaking or immigration reform legislation, though health care advocates recognized them as a barrier to signing up immigrant families for new health care programs in Obama’s second term. Many people hoping for green cards were worried that any kind of affordable health care, even for their children who might well be US citizens, would hurt them in immigration proceedings.

That fear of retribution for using public services intensified in 2018 under the new rule from the Trump administration. Maria Town, CEO of the American Association of People with Disabilities and a former official in the Obama administration, was the head of the Houston Mayor’s Office of People with Disabilities at the time. She witnessed how the Trump public charge rule instilled fear in immigrant communities. “We saw a huge reduction of families, especially mothers of young children, participating in public health clinics,” she told me.

The data backs her up. In 2019, according to the Urban Institute, one in five immigrant families reported avoiding seeking public benefits out of fear of being deemed public charges and denied visas and green cards. Among poorer families or families of people with disabilities, the rates were even higher. Town said, “It means kids are going without food.” And although the Trump administration touted saving money as its rationale behind the new public charge rule, immigrant families avoiding care ultimately cost the government millions, if not billions, in added expenses by, for example, shifting costs from cost-effective preventative care to emergency medicine.

Currently, the Biden administration’s actions have reset the clock to the 1999 ruling. But a lot has changed in the administration of public benefits since then, especially around Medicaid-related services, and the proposed rule tries to take these changes into account. First, as HHS Deputy Secretary Andrea Palm wrote in a letter supporting the change, more people above the poverty line receive these kinds of benefits now, a process that accelerated during the pandemic. But the nature of some benefits themselves have shifted. Over the last few decades, hundreds of thousands of disabled people have fought their way out of nursing homes and into receiving home and community-based services (HCBS).

Disability policy expert Alison Barkoff writes in a blog post at the Administration of Community Living, a division of Health and Human Services, that the new rule would make it explicit that “Medicaid HCBS, as well as acute care benefits will not be considered in application of the public charge rule” (emphasis in original). In other words, federal dollars paid to support a disabled person living in a community, rather than in a nursing home, may not be considered in assessing whether someone might become a public charge. Funding for HCBS is limited, however, so even though the Supreme Court ruled more than two decades ago that community-based options are required where appropriate, the reality is that lots of people still get stuck in institutions and languish on waiting lists. (A recent effort at HCBS expansion failed, along with the rest of the Build Back Better bill). So people are still frequently and unlawfully stuck in institutions. Under the new proposal, such illegal institutionalization may not be counted against an individual. Finally, in perhaps the biggest conceptual shift, immigration officers will not be allowed to consider the mere presence of a disability, per se, as a reason to invoke the public charge statute in denial of an application.

But the new proposal specifically lists direct cash support such as Supplemental Security Income (SSI) and Temporary Assistance for Needy Families (TANF) as negatives in assessing whether an immigrant is likely to become a public charge. The administration is trying to mitigate the impact of those negatives. Barkoff stresses that “DHS also will not assume that just because someone received institutional care or cash benefits like SSI or TANF in the past or is receiving them now, they are likely to become dependent on the government in the future. Any determination will be based on the ‘totality of the circumstances,’ rather than on one particular factor.”

This language on totality is new and important, because the country is full of disabled people who used to be wholly supported by the state and now are living with increasing degrees of independence. One of them is Mia Ives-Rublee, director of the Disability Justice Initiative at the Center for American Progress. She said that as a child, adopted into the US, “I was on Medicaid, and I was on SSI. However, after rehab and getting my education, I am no longer on SSI. I am no longer on Medicaid, and I am a producing member of society.”

The question is whether that “totality of the circumstances” caveat will be enough to thaw the chilling effect that keeps people from seeking the supports they need and to which they are entitled. Town worries that the new regulation still lists a person’s receiving TANF and SSI or experiencing long-term institutionalization as reasons to deem them a potential public charge.

“It flies in the face of a lot of the advocacy the disability community has done to create pathways to economic self-sufficiency,” she said, and will continue to push people away from seeking the supports that they need. “People have to go through so many hurdles to get onto SSI and TANF already. If they have worked that hard to get access to the things that they need, we should be proud to have them as a citizen.”

The problem is that the law is the law. The public charge statute is written into the 1951 Immigration and Nationality Act. The Biden administration can reasonably argue that its hands are tied, that it must consider some benefits as potential evidence for a public charge ruling, and advocates recognize the reality. Julia Bascom, executive director at the Autistic Self Advocacy Network, told me in an e-mail that disability rights groups prioritized fixing the Trump public charge rule in their conversations with Democratic candidates during the campaign, and that although the proposed improvements are laudable, “public charge [as] a concept is a relic of the eugenics movement and reflects the racism and ableism deeply embedded in our immigration system. It should be eliminated. We’re asking the Biden administration to do everything they legally can towards that end, and we’re asking Congress to finish the job.”

But this Congress is unlikely to get rid of the public charge. None of the immigration reform bills considered between 1999 and 2019 addressed the public charge, although the New Deal for New Americans Act introduced by Grace Meng (D-N.Y.) in the House in February of 2021 does eliminate the public charge as grounds for deportation. The bill is unlikely to advance and is not a full repeal, but it is the kind of legislation needed to shift the process away from determining which benefits do and don’t count to whether we need a public charge statute at all. In the meantime, the Biden administration is limited to acting within the current system. Unless the law itself is changed, a future Trump or Trump-like president will have little trouble issuing a new proposal and once again using the fear of being designated a public charge to frighten poor and disabled immigrants away from seeking the public help they and their families need.

In 1998, a British doctor named Andrew Wakefield published a paper in the medical journal The Lancet claiming to have found a link between autism and the vaccine for mumps, measles, and rubella. There was no such link. The paper has been retracted. And an investigation into the controversy suggests that Wakefield, who lost his medical license, may have been trying to get rich by selling his own replacement measles vaccine. Still, Wakefield and others like him succeeded at sowing divisions that have continued to this day.

During the coronavirus pandemic, we’re seeing the consequences of that initial anti-vaccination scheme as it’s moved beyond autism discussions and become part of the scaremongering around the Covid-19 vaccine. And, inside the autism community, autistic people are being pitted against one another, in a scenario in which the only outcome is that everyone loses.

The antivax movement emerged out of the idea that autism was an enemy to be defeated, which lies in direct contrast to the neurodiversity movement and its focus on accepting and supporting autistic people (as well as those with many other disabilities). Today, that means that too many parents are getting the message that fighting for their kids, especially if their kids have high support needs, is in conflict with the neurodiversity movement led by many adult autistic self-advocates.

To make the situation worse, in December 2021, The Lancet—yes, the same journal that published Wakefield—set off a media firestorm when its report on the state of autism services included a proposal for a new label of “profound autism.” It created the label with the intention of establishing a category of autistic people that can be segregated, at least by definition, from the rest. But this is a false dichotomy.

The effort to divide up the autism spectrum has emerged mostly because some parents whose kids need a lot of support want to differentiate their child from autistic adults, whom they see as “not like their child.” Such parents believe that they are fighting a different battle than that of autistic adults who can, at times, pass as neurotypical; they see their kids as needing different kinds of support and different levels of restriction. But they are wrong on all counts. First, the fight for rights and supports for all autistic peoples is one fight—and indeed, a difficult one, given the many barriers to inclusion layered throughout our ableist society. Second, autistic people who seem very different from the outside may be more similar than we realize.

f there were really a need to divide the autism community between the parents and their kids who need high support and the autistic adults out in the professional world, we guess we’d be on opposite sides. Julia is the executive director of the Autistic Self Advocacy Network, while David is the father of an autistic boy with Down syndrome. Nico, David’s son, and Julia, have the kind of superficial differences that lead some to see a conflict where none exists—Julia gives speeches, and Nico is learning to use an Assistive Communication Device. Nico has an intellectual disability, and Julia does not. But in fact, in our years working on disability rights, we have seen that every policy goal and cultural shift around autism acceptance has been a rising tide that lifts all boats.

When self-advocates call for inclusive schools, ending restraint and seclusion, and alternatives to guardianship, they are taking on issues that are critical for people with the most significant disabilities in the United States. But too often the conversation around autism in policy circles, scientific communities, parent groups, and more all focuses on superficial differences, instead of on the policy issues that stand to benefit our whole community.

Here’s the problem: Despite the work of so many self-advocates, parent advocates, and allies, the dominant message in our society is still that autism is horrible, and that autism, intellectual disability, and other significant cognitive disabilities mean that you aren’t really a person. People don’t have to believe these things consciously; they can just absorb the messages they hear all around them without realizing it. This can have a few consequences.

When parents have absorbed these messages, maybe without even realizing it, that moment of diagnosis can lead to a very dark place. For many parents, finding out that their child is autistic or has a significant disability is an agonizing time, when all those subconscious beliefs and fears come crashing down. In that position, parents are very vulnerable to those who tell them their child needs to be “fixed” or “cured,” or that their future is bleak.

And it can be incredibly hard to break out of that trap. If you believe that autistic people can’t be happy, or live good lives, or grow up and learn new skills—as the dominant message tells you—then when you, the parent of a child with high support needs, see an autistic person who can do things as an adult that an autistic child can’t, or who seems happy, or who has a good life, it can seem easy to think that they must not have “real” autism. After all, in this false message, “real” autism means suffering in our society.

elieving that autism equals suffering, so people who aren’t visibly suffering don’t have real autism, is a classic logical fallacy that becomes difficult to refute. As a result, both of us have seen Medicaid assessments and other diagnostic reports describing autistic people who need 24/7 support as “mildly affected.” When parents like David say that their nonspeaking autistic child with an intellectual disability brings them joy, other parents have responded that we just don’t understand “real” autism. Meanwhile, the structural failures—the kinds of false scarcity that David wrote about in The Nation last year and that the Autistic Self Advocacy Network lobbies to change—that actually undermine quality of life for so many autistic people and our families, such as inadequate communication supports and lack of community services, go unaddressed.

Another piece of the puzzle here is that many people with significant disabilities and support needs work very hard to hide them from the public, both to avoid stigma and because it’s nobody’s business. People do not wear their developmental history on their bodies, nor should any autistic adult be pressured to disclose a difficult history with, say, toilet training, or the support needs they require today. But they do have them.

Julia, for example, gave a speech in 2018 at the UN. People have used this to argue that she must have a fundamentally different, and much “milder” kind of autism. What those people don’t know is that on the day of the speech, the organizers had to rearrange the entire event schedule because she had a meltdown and couldn’t speak. They don’t know about the emergency measures she took to be able to read her speech after that; the support person behind her; how sick it made her after; or even that she wore glasses to read her speech because she damaged her eyes banging her head as a teenager.

David’s son, Nico, has the opposite problem. Because he doesn’t speak with his mouth, because he’s unlikely to be the executive director of a major nonprofit, because his needs are so overt, people easily overlook his layers of understanding and competence. He’s cute, but that cuteness is the least interesting thing about him. And sometimes, sadly, even adult self-advocates are too prone to distancing themselves from people with intellectual disabilities—from Nico.

Everyone is harmed by these false divisions. Nico deserves to be seen as the complex, competent person he is. Julia deserves to be able to do her job without people denying her diagnosis. Parents like David deserve to know that a good life is possible for their children. Nico and Julia both love Mardi Gras beads, Hamilton, and stuffed animals. They both struggle to access necessary health care, and they both need the same kind of support to complete daily tasks. They both deserve a society that accepts, accommodates, and values them.

o what do we do now? First, we have to tell different stories, and lift up examples of people with significant disabilities who are happy, included, well-supported, and doing lots of different things. Without more accurate media depictions, it will be hard for new parents—or anyone—to rethink what they’ve been told about autism. We can work to increase inclusion in our own families, schools, and local communities, so that more people get to know us. We can presume competence—an important concept in the intellectual disability world that starts all interactions with the presumption that the other party is able to do things, able to communicate, able to be included. We can provide supports and accommodations for self-advocates, and we can normalize the idea of needing help—a lot of help—without sacrificing agency. We can be unwavering about the fact that autistic people and people with intellectual disabilities are full persons. And when systems fail, we can focus on those failures and hold our leaders to account, rather than saying that some people are just too disabled to deserve fair treatment.

Ultimately, dividing up the autistic spectrum doesn’t help autistic people–but it does distract us from the urgent work necessary to ensure that all autistic people, especially autistic people with the highest needs, have everything they need to thrive. The people who benefit from this division seek to maintain the status quo, where resources are scarce and where higher needs justify segregation and coercive control. We think autistic people–all autistic people–deserve better than that.

About halfway through the oral arguments before the Supreme Court in Dobbs v. Jackson Women’s Health, the case from Mississippi that threatens to overturn Roe v. Wade and end the right to legalized abortion in the United States, Justice Amy Coney Barrett mentioned bodily autonomy. She acknowledged that criminalizing abortion is “without question, an infringement on bodily autonomy,” but then noted, “which you know, which we have in other contexts, like vaccines.” In other words, she claimed that if you accept that the state has the power to mandate vaccines, then you can’t fight the criminalization of abortion by invoking bodily autonomy.

Throughout the pandemic, American conservatives have appropriated the language of the reproductive rights movement as a way to protest disease mitigation measures like masks and vaccines. As early as April 2020, people protesting mask mandates appeared around the country holding posters with the slogan “My body, my choice.” The conservative argument attempts to place the left in a bind: If you concede that the government can mandate vaccines, you must concede that the government can criminalize abortions, because bodily autonomy isn’t a core right. On the other hand, that means if you demand bodily autonomy for reproduction, you must also grant it to anti-vaxxers.

But these claims willfully ignore crucial differences. A pregnant person, of course, has the right to the autonomy of their own body, which includes the choice of whether to carry a pregnancy to term. And while the government should not send shock troops into homes to force needles into people’s arms, no one has the right to carry a deadly disease into public space and possibly infect the bodies of others, at least not when easy and affordable mitigation tools are at hand.

The right of each individual to bodily autonomy, as I wrote for The Nation during the first year of the Trump administration, is one of my guiding principles. It links so many different kinds of issues, from decriminalizing drug use and sex work to disability rights to trans rights to the right to health care and housing to decarceration and of course most centrally to reproductive rights. Like all abstract principles, it has its limitations, but it’s a concept that can articulate the rights of the individual in an increasingly authoritarian society.

Imani Gandy, the senior editor of law and policy for Rewire News Group, is a lawyer and has been a leading journalist covering reproductive rights and attempts to curtail them for well over a decade. In the aftermath of the Dobbs hearing, she’s been writing about what the right will do after Roe is overturned. She predicts that the GOP will focus on granting a fetus, from conception, the legal rights of a person. This, she argues, will criminalize women, especially Black women, for taking any kind of action—usually taking drugs or medication—that endangers a fetus. In this context, she told me, the principle of bodily autonomy remains critical.

In her recent work, Gandy cites five women whose decisions to take a variety of substances into their own bodies (meth, rat poison, abortion pills, cocaine) were treated by the state as crimes against their fetus, including Regina McNight, who “was sentenced to 20 years in prison after using cocaine while pregnant. After being incarcerated for eight years, she was released when the South Carolina Supreme Court overturned her conviction in 2008. The court said her attorney had ignored evidence that her pregnancy loss may not have been linked to cocaine.” During the Dobbs hearing last week, then, Justice Clarence Thomas invoked a similar case, Whitner vs State, while questioning to what extent courts were allowed to criminalize women for endangering fetuses. So the question is clearly on the anti-abortion movement’s mind. Gandy told me, “Personhood and increased criminalization of behaviors while pregnant will mean the government is going to be way more involved in the lives of pregnant people from ‘Were you wearing a seat belt?’ to the doctor says, ‘You need to have a C section.’ So you don’t get to have the natural birth that you want. It’s going to start infecting all areas of life.”

So if we can’t surrender the principle of bodily autonomy in defending the right to abortion, how do we respond to anti-vaxxers chanting, “My body, my choice,” or Barrett trolling pro-choice America by using the example of vaccine mandates? I am actually very uncomfortable with the civil liberties implications of digital vaccine passports (especially managed by private corporations via an app that tracks you) or mandatory vaccination for all Americans. Instead, a vaccine mandate proposes that you have a choice. Taking the safe mitigation step (obviously virulent anti-vaxxers argue safety, but that’s a different conversation than the one Barrett is invoking) of wearing a mask or getting vaccinated means that your presence in society is not threatening the bodies of others. Choosing not to mitigate risk to others means you lose your right to participate in certain aspects of society. There are always trade-offs, but masks and vaccines don’t present a particularly complicated case.

In a famous passage in Jean-Paul Sartre’s Anti-Semite and the Jew, the writer notes that you can’t argue with anti-Semites by pointing out their absurdity: “They know that their remarks are frivolous. They are amusing themselves, for it is their adversary who is obliged to use words responsibly, since he believes in words.… They delight in acting in bad faith, since they seek not to persuade by sound argument but to intimidate and disconcert.” Similarly, we will never persuade a member of the forced birth movement to respect the bodily autonomy of a pregnant person through words, logic, or nuance. Pointing out the hypocrisy or logical flaws of a Barrett, or an anti-vaxxer with a sign on the street, will not convince them of their folly.

But my arguments about bodily autonomy have never been about persuading the other side but rather about mobilizing the left and helping us locate points of connection. One of my introductions to left-wing politics was doing clinic defense as a college freshman. Now, as a 48-year-old father of an autistic boy with Down syndrome, I’m very focused on disability rights. One point of connection between these two issues—issues that the American right wing wants to place into conflict—is preservation of bodily autonomy for everyone. We make nuanced arguments about the limits and effects of principles like autonomy to help others to see how their issues connect to our own, drawing the left into overlapping networks of alliance and mutual interest. Ideally, this advances our various causes. When we fail to draw those connections, we leave ourselves open to being set against each other.

My son, a 14-year-old autistic boy with Down syndrome, has the right to be educated thanks to federal civil rights legislation passed in the 1970s and updated in the years since. These laws promise him a free and appropriate education in the least restrictive environment adapted, within reason, to his needs.

Notice the different components: One type of law focuses on the content of the education itself and provides the supports and adaptations to ensure he’s learning. Another makes sure the education is safe and accessible to him, including the school building itself. Together, laws like the the Americans with Disabilities Act (1990); the Education for All Handicapped Children Act (1975) and its 1990 update to the Individuals with Disabilities Education Act; and section 504 of the Rehabilitation Act of 1973, provide a well-tested, if always contested, set of protections, rights, and obligations for disabled children in school.

Now, lawsuits in Florida and Texas, along with emerging statements from the Department of Education under the Biden administration, are arguing that the laws mandating safe schools for disabled children can be applied to one of the most contentious issues in our pandemic-ridden society: masks.

During the pandemic, according to preliminary research, the systems helping many disabled children access education collapsed. To its credit, the Betsy DeVos–led Education Department refused to waive the rights of disabled kids in schools, but enforcement became rare. As we enter our third pandemic school year, there are signs that things are about to change. On the federal level, President Biden issued a memorandum instructing the Department of Education to use all available tools to make certain that governors “are giving students the opportunity to participate and remain in safe full-time, in-person learning without compromising their health or the health of their families or communities.”

In an interview with The New York Times, Education Secretary Miguel Cardona said that he would use the civil rights enforcement wing of his department to protect students from marginalized groups who have been hit especially hard by Covid-19. In a blog post, Cardona wrote, “The Department has the authority to investigate any state educational agency whose policies or actions may infringe on the rights of every student to access public education equally.”

Meanwhile, the Disability Independence Group, a nonprofit organization in Florida, and Disability Rights Texas, a protection and advocacy organization, have filed lawsuits on behalf of parents and children against their respective governors and education officials making a simple claim: Federal law requires reasonable accommodations to make school safe. For children with a wide range of disabilities, that means everyone in school needs to wear a mask. Therefore, governors cannot ban mask mandates without violating federal law.

I spoke to attorneys behind both lawsuits and two other attorneys not involved in either case. I asked Matthew Dietz, litigation director at Disability Independence Group Inc, whether this lawsuit represented a new legal strategy. Laughing, he told me, “I try not to do new arguments because new arguments usually lose. This is the oldest ADA argument that there is. Kids need to go to school. They are entitled to a reasonable accommodation. It’s not an undue burden at all for somebody else to wear a mask. This is an argument that’s 40 years old.”

Kym Rogers, litigation attorney for Disability Rights Texas, said that “both the ADA and section 504 guarantee access to individuals with disabilities. So these children are entitled to access their education, just as children without disabilities are. Prohibiting the use of masks is effectively a barrier.”

Ruth Colker, a law professor at Ohio State University, explained that the core of the argument is that during the Covid-19 pandemic, “a mask is a ramp.” In other words, the same legal authority that requires schools to have ramps can make schools compel people to wear masks. Colker said she loves the approach because it allows for structural action, rather than trying to fix things for just one child at a time. A more potent analogy, she suggested, was peanuts. If there’s a child with a peanut allergy, the school district needs to impose a structural accommodation barring peanuts from the building in order to keep the particles of the allergen out of the air. It’s not enough to make sure the allergic child doesn’t have any peanuts in their food. “Peanut particles are a bit like Covid,” she said, and is “an analogy people can grasp.” Plus, she added, “it is easier to enforce a mask mandate than a no peanut policy. Just hand out the masks. [It’s] hard to know where peanuts may be hidden.”

Tauna Szymanski, the executive and legal director of Communication First, told me via e-mail that she thinks “there’s a strong legal argument under the ADA and other civil rights laws for these mandates,” but that she was “skeptical that these steps alone are going to make schools accessible to high-risk students with the most significant disabilities.” Masking may not be enough to protect vulnerable children, especially in schools with overcrowded classrooms and poor ventilation.

If safety is going to be the standard, then she wants students to continue to have virtual learning options. “The Department of Education really should be focusing on ways to ensure equal access for students who cannot return to school even with mask mandates in place,” she said. Returning to school, masks or not, is going to force students “to choose, once again, between risking their lives to show up in person, or receiving no support at home.” That’s certainly a concern for our son, who despite being vaccinated, just caught Covid-19 for a second time.

I asked Matthew Dietz, in Florida, whether the arguments he’s making about mask mandates in schools might be applied to work and other public sites under the ADA. He said that, to some extent, it’s actually the other way around. The Equal Opportunity Employment Commission published technical assistance “about what’s reasonable and what’s not in the workplace. And there’s nothing that EEOC has done that can’t be applied to schools.” He’d like to see not only Cardona but also the Department of Justice follow this lead. “Unlike the EEOC,” he told me, “the Department of Education and the Department of Justice have not put out guidelines for ensuring a safe environment and what a reasonable accommodation should be. That was and is a huge mistake, because it would apply not only to places like schools, but would also apply to concerts, fairs, and other things.” The Department of Education did not return voicemails left with its public affairs officers. The Department of Justice did not reply to an e-mail query sent via its website.

What happens next isn’t clear. On August 19, the Texas Supreme Court temporarily blocked Governor Greg Abbott from banning mask mandates, but didn’t decide on the merits of the cases. What’s more, these cases hinge on debates about the limits of gubernatorial power, which Dietz explained, have a very high standard to overcome. And he pointed out that the disability rights legislation should provide a stronger legal argument: “Our standard as to whether it’s a reasonable accommodation is an extremely low standard,” and the burden of proof that a mask mandate is an undue burden or fundamental alteration is much higher. So Rogers and her colleagues continue to seek preliminary relief from a federal court, as does Dietz. In Florida, school boards and the state are required to submit testimony by August 24, after which they may quickly get a preliminary ruling as to whether the mask mandate ban in Florida can proceed.

Meanwhile, kids are going back to school, case counts are rising, and pediatric hospitals are filling. At one Houston hospital, hospitalizations for kids soared from single digits to more than 30 in less than a week. In Hillsborough County, Fla., about 13,000 staff and students—over 5 percent of the total staff and public school student population—are currently Covid positive or in quarantine due to exposure.

Gattaca

little less than halfway through the 1997 film Gattaca, Irene (Uma Thurman) steals a strand of hair from the desk of a coworker she knows as Jerome (Ethan Hawke), and takes it to an all-night DNA testing booth, passing a woman who is having her lips swabbed just five minutes after kissing her date. A few seconds later, the technician gives Irene her answer: “Nine-point-three—­quite a catch.” But 9.3 of what? How does her printout of amino acids translate to a scale of 1 to 10, a “genetic quotient” that leads the technician to think her boyfriend is a catch?1

After nearly a quarter century, Gattaca has aged disturbingly well. The New Zealand writer and director Andrew Niccol crafted a noir dystopian thriller of a society trapped by eugenic ideology and ubiquitous biometric surveillance. Those with poor GQ are deemed “in-valid” and condemned to a life of poverty, drudgery, and crime. But those with good GQ also measure themselves against impossible standards, believing that their DNA determines what they should be able to do, and they plunge into depression, suicidality, and self-sabotage when they’re unable to meet expectations. Today, as we charge into an age of biotechnology, the film feels especially prescient, providing a benchmark against which to compare our trajectory. Our capacity for both genetic manipulation and biometric assessment is advancing, but we have not improved our ability to hold conversations about genetics, disability, or even abstractions like the relationship between probability and outcomes. I worry that our Gattaca future is nigh.2

The hair fiber may have scored a 9.3 GQ, but it doesn’t come from Hawke’s character, whose real name is Vincent. Vincent is an invalid, a child conceived in the back seat of a Buick and allowed to develop as nature sees fit. He’s got a 99 percent chance of developing a heart condition, and his life expectancy is 30 years. He’s also brilliant and wants to be an astronaut, but he has no chance of passing the genetic screening for a space gig at the Gattaca Aerospace Corporation. So he engages in a criminal conspiracy with the real Jerome (Jude Law). Jerome was genetically engineered to near perfection, becoming a champion swimmer and a silver medalist in the Olympics before suffering a spinal injury in a car crash. (Later we find out that Jerome, unable to tolerate being second best, had stepped in front of the car. It’s the rare disability-suicide plot point that places the blame on society rather than on disability.) Jerome makes a deal to provide Vincent with hair, blood, urine, and skin samples in exchange for a portion of Vincent’s salary. The fraud works. Vincent becomes a navigator, but before he can launch into space, the mission director at Gattaca is murdered. A manhunt ensues, the cops find an eyelash from Vincent himself, and the movie rolls forward.3

It’s a pretty good plot. Vincent has a genetically engineered younger brother, Anton, against whom the naturally conceived in-valid measures himself, a tension that plays out in adulthood. Vincent helps Irene realize that even if she’s not perfect according to the charts (she’s “valid,” but no 9.3), she can do more than she realizes. But it’s not the plot that’s made the story endure; rather, it’s the film’s vision of the world.4

The premises of Gattaca feel real not just because its characters espouse long-held eugenic principles in the development of prenatal testing and genetic engineering technologies but because the movie pairs those ideologies with surveillance. It’s one thing to have an ableist viewpoint about the value of people, another to have the technology for genetic engineering, and yet a third to build a society around the routine penetration of the body to extract blood, urine, and saliva and measure it against a universal database.5

The film isn’t perfect. Aside from the presence of a Black geneticist and a few extras, its world is extremely white, and I don’t think that’s an accident. As we watch Vincent embark on his early career as a janitor, he provides narration about the times, saying, “I belong to a new underclass, no longer determined by social status or the color of your skin. No, we now have discrimination down to a science.” That’s nonsense. Ableism and eugenics intersect with racism, classism, and other forms of discrimination. Inventing new forms of discrimination does not erase the old ones.6

Still, a single film, like a single essay, doesn’t have to do everything. Make no mistake, our Gattaca future is coming; the technology can’t be held back. What we must do now is work to undermine the eugenicist ideologies that will lead those technologies to cause increasingly greater harm. And that’s where this movie comes in. When I talk to people about designing babies, I often get assurances that discrimination against kids like mine—my son has Down syndrome and is autistic—is bad, but where’s the problem in trying to create advantages, to alleviate burdens? Gattaca, however, makes the case that you cannot design your way to happiness and that trying to do so will build a world ever less free—even for those who achieve high marks in GQ, IQ, or whatever other rubric we use to mismeasure potential.7

David M. Perry8

Parable of the Sower

he events in Octavia E. Butler’s 1993 novel Parable of the Sower presage this moment of mass shootings, global warming, en masse migration from California, a pandemic that throws into relief rampant structural inequities, widespread drug abuse, and a presidential candidate who campaigned on returning the country to a sense of so-called normalcy. (In the book’s sequel, 1998’s Parable of the Talents, one politician promises to “Make America Great Again.”) When the novel was published, it was set 31 years in the future. The gap between the version of life Butler imagined and the one we’re living in is closing.9

Parable of the Sower tells the story of activist Lauren Oya Olamina, who is 15 when the book begins and lives in an increasingly destabilized Southern California with her minister father, her stepmother, and her four brothers. Like other micro-communities in their Los Angeles County town, the Olaminas and a handful of other families live behind a wall to escape looting, murder, sexual assault, drug abuse, arson, and corporate slavery. Responding to her environment, Lauren has already started to develop Earthseed, the spiritual philosophy she creates based on the notion that “God is change.” She lives with a condition called hyperempathy, which causes her to become ill when she vicariously experiences the suffering of others. It is perhaps this hyperempathy that makes Lauren so attuned to the impending doom around the corner (literally, for her and her compound). She seems to be the most worried person in her community and suggests that people refine their emergency preparedness for a series of catastrophic events. She reads history books to fortify herself; in a conversation with a friend, Lauren underscores the significance of the Black Death in the 14th century, saying, “It took a plague to make some of the people realize that things could change.” Eventually her suspicions come true, and Lauren leads a band of travelers to Northern California in search of freedom, paying jobs, and affordable water.10

In a present-day America that’s reeling from the toll of the pandemic, the War on Drugs, the prison-industrial complex, reproductive oppression, and weakened labor unions and that is constantly threatened by white supremacy, the cowardice of career politicians, and the avarice of the wealthy, the lessons of Parable of the Sower have practical application. The principles of Martine and Bina Aspen Rothblatt’s Terasem Movement (founded in 2002), which focuses on nanotechnology and cyber-consciousness, were inspired by the book’s Earthseed philosophy. adrienne maree brown’s 2017 manual Emergent Strategy: Shaping Change, Changing Worlds was also influenced by Earthseed. Since last spring, Tananarive Due and Monica Coleman have hosted a series of webinars called “Octavia Tried to Tell Us: Parable for Today’s Pandemic,” in which Butler scholars explore the context and imaginative implications of the book’s predictions. In an October 2020 interview in The Believer, writer and housing attorney Rasheedah Phillips advised people interested in envisioning survival to start with Butler. “She is the person who prepared me, to the extent that I am prepared for this,” Phillips said.11

Yet it is not only because of its pragmatism that Parable of the Sower should be considered the more prescient dystopia; it also ingeniously foresaw movements in today’s culture to recenter marginalized groups, including young Black girls and women; Indigenous communities, whose botanical and nutritional insights are crucial to the survival of Lauren and her band; and youth, of which the Earthseed collective is mainly composed. Lauren is a fictional forerunner to courageous young people like Darnella Frazier, X González, Greta Thunberg, and the late Erica Garner.12

Perhaps the biggest indication of Parable of the Sower’s foresight is its understanding that as powerful as empathy is, it’s not enough (Namwali Serpell’s New York Review of Books essay “The Banality of Empathy” is also useful in articulating this idea). When Lauren’s lover suggests that it might benefit society if most people had her hyperempathy, Lauren calls the notion a “bad idea.” “You must know how disabling real pain can be,” she insists. Just as hyperempathy is not enough to save Lauren, it won’t be enough to save us. Empathy takes courage, compassion, and an interest in alterity, and many people in her world and ours lack those qualities. But art, at least, can prompt us to think critically. Like empathy, critical thinking requires compassion and a desire to move past pretense toward truth.13

Here again, Parable of the Sower is telling. “Use your imagination,” Lauren tells a friend. “Any kind of survival information from encyclopedias, biographies, anything that helps you learn to live off the land and defend ourselves. Even some fiction might be useful.” And the novel has been. But as Lauren learns, reading is only the first step. Explaining her impetus to move beyond studying, Lauren tells someone from her old neighborhood, “I thought something would happen someday. I didn’t know how bad it would be or when it would come. But everything was getting worse: the climate, the economy, crime, drugs, you know.” Yeah, I do know—and all of that requires thoughtful action now.14

Niela Orr15

Sometimes, after educating teachers about the Tulsa race massacre of 1921, after dealing with racist incidents in the classroom, after spending hours talking about slaughter and mass graves, Karlos Hill weeps as he drives home. “When I talk about sobbing, it’s because of the emotional toll of doing the work. It just sort of drains you,” he told me. 

But when I ask him to talk more about this toll, the chair of the African and African American Studies Department at the University of Oklahoma changes the topic. He’d rather discuss the joys of his profession: “I wake up every day, even when I’m tired, with a deep sense of purpose and deep sense of mission.”

I called Hill on a quiet Saturday in late April, a rare day when he had some time in his impossibly busy schedule. As the centenary of the Tulsa massacre approaches, he wants to talk not only about his research and teaching on the subject but also about the obligation of historians to work for social change.  

Hill came to my attention through his essay, “Community-Engaged History: A Reflection on the 100th Anniversary of the 1921 Tulsa Race Massacre,” forthcoming in the American Historical Review. It’s the most personal article I’ve ever read in an elite academic publication. Hill deploys his experiences in Tulsa teaching the history of the massacre to confront the myth of objectivity. For the last three years, Hill has been the cocreator and coleader of the 1921 Tulsa Race Massacre Teachers’ Institute, which trains K-12 teachers to inform students and dispel the bad history that too many have learned.

The facts of the massacre are, of course, important: The violence began on May 31, 1921, when a white mob gathered outside the county courthouse, set on lynching a Black man named Dick Rowland, whom a local newspaper had accused of attacking a 17-year-old white woman. Two groups of Black men arrived to guard the courthouse. Hill’s article describes what ensued when “a white bystander moved to disarm one of the black men. As the two men struggled, one of their guns went off. In the ensuing chaos, some men among the white crowd began shooting indiscriminately at the retreating black men, and some of the blacks returned fire. Twenty people were killed or wounded in that brief initial episode. It was the opening salvo of the worst race massacre in American history.” Over the next half-day, thousands of white Oklahomans descended on the Greenwood District to murder, loot, and burn down the prosperous neighborhood known as Black Wall Street. Police and national guard detained at least 4,000 Black residents and zero white residents. To this day, no one knows for sure how many Black Tulsans were killed or where their bodies are buried. Last October, archaeologists identified a mass grave with at least 10 coffins. 

But the facts alone aren’t enough. Until recently, despite the magnitude of the violence, Hill told me that the massacre was little known in the United States, and when it was taught at all, teachers typically characterized it as a “riot.” Correcting that requires not just a more accurate scholarly narrative but also helping others tell a better story. His teaching experiences, which have not always been easy, led him to open his new essay by saying, “In the twenty-first century, a historian’s power lies in being a catalyst for social change.”

He told me that he’s “trying to nudge historians to think more deeply about what their commitments are, what their research is, and how it maybe connects to what’s happening, not just around the nation, but in their own community.” He contended that as scholars, “our power, our capacity to impact people and institutions and culture lies in the extent to which we are willing to align our talents, our abilities, our gifts with community struggles and issues.”

By encouraging academics to deliberately effect change, Hill is placing himself on one side of a long-standing debate about the nature of history. He is arguing against a still large contingent of the discipline who say that historians should be dispassionate and strive toward objectivity. Let the sources do the work, they say, and keep politics and activism out of it. Hill, on the other hand, argues that historians can “do legitimate scholarship that advances the field while simultaneously engaging our communities.”

History, of course, is not the only field where these debates play out. Journalism has been wracked with debates about objectivity for decades. Science also faces a reckoning over the way that that pretending all inquiry is value-neutral promotes harm. In all cases, the discourse revolves around questions of race, gender, and other forms of identity, as well as the question of who sets the parameters for making knowledge. In his article, Hill points to a recent debate published in the same journal around Native American and Indigenous Studies, in which one non-Native professor “expressed deep skepticism about [historians’] capacity to center scholarship on the communities of which they are a part and/or which they desire to serve while simultaneously doing history objectively, performing ‘cold’ readings of historical documents.” But if scholars can’t support marginalized communities, what is their research even for? Why is being a “cold” reader a virtue? And will that even result in better analysis or understanding? 

When I asked Hill about his argument about the role of historians, he admitted to being intentionally provocative. But he said, “I’ve just come to understand, that my value to my community is my ability to align my research, my writing, my teaching with community struggles, community initiatives, justice work that’s happening.” He acknowledged that not every historian will be studying the history of a place or people where they live, but he told me that his piece is “really about trying to nudge historians to think more deeply about what their commitments are, what their research is, and how it maybe perhaps connects to what’s happening in their own community.”

Hill’s own decision to rethink the work of history came in a mid-career moment. He received his PhD from the University of Illinois in 2009, and took a tenure-track position in the history department at Texas Tech that same year, eventually completing an academic book about anti-lynching movements and narratives from Black Americans. He received tenure, moved to Oklahoma, and found himself a little lost. “In the lead up to getting tenure, I was so focused, and really frightened of not getting tenure that that was my only thought. Just get tenure. Work really hard. Write this book. Write as many articles as you can. And, and hopefully, that’s enough. And so once that force leaves, it’s like, ‘OK, who am I? What am I doing?’” He began to ask himself not “What to write?” but “Who are you writing for? And why are you writing?” He told me that at the time, “I didn’t have answers to those questions.”

In our conversations, it became obvious that he found those answers in serving his community, saying, “I think I found my muse.” In the lead-up to the centenary, he’s devoted himself to the collaborative work commemorating and memorializing the Tulsa race massacre. Teaching teachers is part of it, but he’s also published a photographic history. He told me, “In 2016–17, the default phrasing was ‘race riot.’ The community used that language. It became clear that ‘massacre’ was much more appropriate, and the book [tries] to visually represent what that really means, what ‘massacre’ really connotes, to compellingly portray the destruction, the loss of life, but also the rebuilding.”

The challenge of the book, The 1921 Tulsa Race Massacre A Photographic History, is that the surviving photographs were taken by white Oklahomans “to tell the story of whites suppressing a negro rebellion, or insurrection.” But Hill said he realized, “If you could pair the photographs of destruction that were taken by whites with oral history testimony, there’s a way that testimony could recontextualize those images and help people profoundly understand the massacre from the point of view of victims, survivors, and descendants.”

But Hill is not just saying that people whose fields fit so neatly into the needs of their community should push for change. I ask him how scholars like me, originally a historian of medieval Venice, might fit into his vision. With a laugh, he replied, “I think scholars are smart enough to figure out the how if they really want to.” 

For many, the how emerges in teaching. Hill encourages academics to stop thinking only about scholarship. “Who’s in your classroom?” he asked me. “Whatever you’re teaching, are you teaching it in socially and culturally responsible ways? Or are you putting equity at the center of your classroom?” Every class, he said, offers opportunities to emphasize social justice.

History is always contested ground, but fights over the past have been especially fierce of late—first with conflicts over statues of Robert E. Lee and his fellow Confederate leaders and then with the right-wing backlash to the 1619 Project from The New York Times and the obsession with banning critical race theory (or what conservatives imagine CRT to be, anyway). Taken together, it’s clear that Republican lawmakers are trying to forbid the teaching of structural racism in American history and mandate lessons that reinforce the fiction of a white, Christian, meritocratic America. What we see in the right’s manufactured culture-war controversies is the understanding that the stories we tell shape the futures we can imagine. Hill’s decision to place his expertise, talents, and training in the service of a community in need of access to truer stories couldn’t come at a more consequential moment.

In his essay, Hill writes that Tulsa’s Greenwood District “was built on hope, destroyed by white mob violence and vengeance, and then raised again from the ashes through the strength of black resilience and faith. Buoyed by its powerful past, Greenwood lives on, and with the activities surrounding the approach of the 100th anniversary of the massacre, working toward healing history has taken center stage.”

For Hill, “healing history” requires scholars to amplify suppressed voices and create the conditions for new narratives to propagate in the communities that long to hear them. It’s in working in service of others, Hill argues, that historians can find their power.

It’s the second day of my son’s life, and I’m crying because our four best friends won’t stop congratulating us. We’re in a hospital room, and our son is upstairs receiving extra oxygen, although everyone says there’s nothing to worry about. He was diagnosed with Down syndrome about five minutes after his birth, and medical professionals have been pouring out a lifetime of risk factors as a kind of ex post facto informed consent. Nothing’s going wrong at present, but the doctors want to tell us about everything that might go wrong eventually. We’re feeling numb and isolated. I’d posted a birth announcement on LiveJournal (the social media of the time) but disabled comments. I didn’t want to hear from anyone.

Then our best friends, two couples, arrived at the hospital bearing cards and flowers, chocolate and champagne (for everyone but my wife, which seemed a bit unfair). Fortunately, in this age of information, they were able to go online and find out what to do when someone’s child is diagnosed with Down syndrome. They’d internalized the core message: Congratulate your friends on the birth just as you would with anyone else. They just wouldn’t stop treating the occasion of my son’s birth as a cause for celebration, which is good, because we had so much to celebrate once we broke through our own ableism and ignorance. I cried then. I’m crying now as I type this.

y son is 2, and a lovely group of women are leaving the house after his two-year evaluation. Thanks to Part C of the Individuals With Disabilities Education Act, disabled children can access quite astounding levels of support if they qualify, and one of the benefits of our son’s Down syndrome (as opposed to other disabilities) is that no one has ever questioned whether he qualified. So therapists come to our apartment in suburban Chicago and work with him on his gross and fine motor skills, speech, and overall development. We pay nothing. There’s money in the program for medical expenses that our health care plan doesn’t cover, and the state will even pay for durable medical equipment—braces for his ankles, a speech device that will say words when he presses an icon, the rental of a mini-treadmill to help him learn to walk. And all we have to do is to sit there, annually, while these kind therapists write out how far behind our son has fallen from “normal” developmental milestones. They’ve been praising him for so long, telling us what good parents we are and how great he’s doing. But the team leader, a social worker, explains that the piece of paper has to be a record of delay and struggle; otherwise we’ll receive less help. When they leave, my wife and I are quiet for a long time and don’t really talk about it until late at night, when we cry.

t the end of second grade, we get an e-mail from his classroom teacher—my son has a special education instructor and is “included” in a mainstream classroom with its own teacher. The class is going to end the year doing reader’s theater, in which students in groups will act out various books they’ve read. I scan the columns listing book titles and students, and I can’t find my son’s name, so I e-mail the teacher. He “will get to participate as an audience member” is the eventual reply.

As with early intervention, a whole team of educators gets together at least once a year to craft an Individualized Education Plan, or IEP, for my son. What a dream to have a child’s needs so carefully considered and then supported, rather than the one-size-fits-all model of American education that serves so many children so badly. By now, the wound of seeing our child described solely in terms of deficits in official paperwork has long since scarred over, but this e-mail cuts anew. I know this teacher means well. I know she is a good person, a hard-working educator, a part of the team, and she doesn’t mean to exclude my son. But it’s also clear that she doesn’t really see him as her student.

t’s our second year in Minnesota, and two county social workers are sitting at the table with me, playing a game I have come to call acronym tennis. They throw jargon back and forth at each other as I stare in bewilderment, frustration, and rising anger. We moved back to Minnesota at least in part to obtain better support for people with developmental disabilities (especially into adulthood). Nearly 24 months into our time here, we’ve accessed none of those resources. The first social worker came over to assess our son, and we cheerfully talked about how great he was, then later were told we qualified for very little. Yet every other parent and teacher kept talking about “waivers” that we should qualify for—but a waiver from what? What service or requirement was getting waived? We struggled through form after form, lost in the bureaucratic hurdles that stood between us and help.

Eventually we found out that a social worker had used “mild” for my son’s developmental disability on his first assessment, so we had to argue with the state that, in fact, his disabilities were not mild. Someone at a local nonprofit advised us to create a spreadsheet that detailed every minute of every day that we had to do something for him that we might not have to do for a typical kid. I tried for 15 minutes, characterizing difference as struggle, then deleted the spreadsheet. I didn’t like the way it was making me look at my son. I went to a mandatory training from the county at a local library, where a well-intentioned employee advised us to describe our “child’s worst day” in our application. We gritted our teeth. We argued for “severe” instead of “mild.” We dehumanized our son in the paperwork but got support.

isability systems rely on artificial economies of scarcity. Programs are underfunded, so caregivers, teachers, social workers, and disabled people themselves are all pushed to project their needs as necessary and virtuous. But it doesn’t have to work that way. Instead of focusing on challenges, we could emphasize goals. Julia Bascom, the executive director of the Autistic Self Advocacy Network, tells me that “the alternative would be a system where, first, we identified what someone’s goals are and then identified the supports to get them there. So we might identify that a student wants to participate in a science class, and then that they need a notetaker, someone to help with self-regulation, a communication device, etc., in order to do that.” The goal leads the way. What’s more, every child would benefit from having their goals prioritized as we allocate supports, not just disabled children. Bascom tells me that experiences like ours happen because disability service systems are never designed to support people with disabilities but are “about managing access to scarce resources. We start with the assumption that these resources are limited, so you have to prove over and over again that you need them more than anyone else. If we as a society invested more resources in supporting people with disabilities, we could redesign our systems accordingly.”

The problem of false scarcity isn’t lost on providers, but until it’s addressed, it can’t be fixed. “Right now,” Bascom says, “there are some localities and providers that try to come from that positive, goal-oriented approach, but then you wind up with person-centered planning meetings where people have great plans based on their goals, but no services can be provided because the resources aren’t there. We have to fix both problems to really change things.”

Rebecca Cokley, one of America’s leading disability rights activists, formerly at the Center for American Progress and the National Council on Disability, tells me that we need to revamp the basic framework for how we support disabled people and their families. “We need a universal design for the social safety net,” she says. Universal design is a core concept in the disability world. Initially developed in the 1970s with the goal of designing objects and spaces to maximize utility for the broadest possible set of needs, the principles of universal design are now routinely applied to education, websites, and other fields. When it’s implemented, not only do disabled people benefit, but there are positive knock-on effects. One classic example is the curb cut, which makes sidewalks accessible for people in wheelchairs or with a wide variety of other movement-related disabilities. But they are also great for kids on bikes and parents pushing strollers.

Yet on a programmatic basis, disability policy and other social programs remain enmeshed, even at their best, in accommodation models, where specific proven needs or deficits generate specific individualized responses. What might it look like to shift our framing of the social safety net to a universal model? Cokley says we’re a long way from being able to answer that, though we do have a few hints. “We’re seeing it somewhat in schools around the creation of universal learning plans, clearly modeled after the IEP, that lay out how all students learn best.” Cokley hopes to map out the true cost of being disabled in America—what she and others call the “criptax”—and link it to other categories of identity like race, class, and gender. With the “pandemic, recession, civil unrest, if there was ever a time for us to be bold,” she says, “that time is really now. When policies are inclusive of the disability community from the beginning, it’s better for everyone overall.” She adds that “long Covid”—the chronic effects of the disease that have been reported by some—will likely lead to the “biggest boom in the disability population since AIDS/HIV in the ’80s and polio in the ’50s. I do think that nobody’s talking about how we make the social safety net stretch for the long-haulers.”

t’s the second week of November, and my son has been sent home from school because someone in his classroom has Covid-19. We have no support in our home. The Minnesota Department of Human Services says you can’t use Medicaid money for school. The state’s Department of Education says that a school district may hire an aide through a third party and send them into the home, but it isn’t required to do so, and our district says it won’t for nebulous “pay and qualifications” reasons. (When I’ve asked repeatedly in meetings, the school district has refused to clarify what this means.) We hire a lawyer, and she tells us to log my son’s struggles, so one morning, instead of helping him, I open a document and write that he can’t type his password, can’t click on his e-mail, can’t open Google Meet, can’t click the “join” button, can’t mute or unmute his microphone, can’t join a breakout room, gets frustrated when he says no 20 or 30 times about the class’s song choices, gestures at a screen in ways his teachers can’t see, dances out of view of the camera so his teachers don’t know he’s participating. On and on the list of “can’t”s goes, and again I’m crying. And even with the documentation that distance learning is failing, the school district doesn’t seem to care.

We’re living a good life. Our kids are amazing. Minnesota is just the place we want to call home. The state—and notice how we’re tangled in local, county, state, and federal systems, often in conflict with one another—should help every family with education, child care, developmental equipment, and all the other things. Every time the system works well and a team of educators meets in a room to decide how best to support my son, I think that every child could use that level of individualized care, if only we decided that our collective responsibility extended from the “worthy disabled” to all. The same can be said for my son’s publicly subsidized health care, therapy, and other benefits.

But we need to rebuild the systems that support him and could support so many others around enabling strengths rather than projecting helplessness, around justice rather than false economies of scarcity. Because otherwise there are too many tears. Too many struggles. It doesn’t have to be so hard.

In the waning moments of the Friday night debate before the 2016 New Hampshire primary, Senator Hillary Clinton ended her closing statement by drawing a distinction between the fight against income inequality and the battles against other forms of inequality, like “the continuing struggles that Americans face with racism, with sexism, with discrimination against the LGBT community, with new Americans, with people with disabilities.” This kind of framing had become a feature of her stump speech, but that last clause was new. I remember rushing online to talk to friends in the disability community. We were buzzing with excitement. Just hearing the word “disability” in a presidential debate felt new and important.

During this election cycle, with one important exception, disability has been foregrounded as a major issue in Democratic Party presidential politics for the first time. Multiple candidates released credible disability policy plans. I characterized each one as the best presidential campaign document on disability I’d ever seen—until the next candidate built on the previous one and released something even better. What remains unclear is how this will play out not just in the campaign, but in the next Democratic administration, whoever and whenever that is. Democrats have learned that left-leaning disability activists are increasingly organized in both formal and informal communities. They—or we, because I am both disabled and a parent of a disabled child—want to be heard. Will the next president listen?

I’m worried that the answer is no. That exception is Joe Biden. His campaign has not released any new policy on disability. His messaging around disability remains stuck in the past.

In the latter half of 2019, Democratic presidential campaigns started to publish their disability plans. Not all of them were great, but the good ones were exceptional. We need plans that recognize the breadth of disability-related needs across diverse aspects of society, along with specific ways that the federal government might help meet those needs. Moreover, I want to see candidates prioritize listening to advocates who are themselves disabled rather than parents or outside experts. For example, I’m disabled (dyslexia, severe depression, anxiety), but as a cis-white man with a PhD who entered the disability community as the parent of an autistic boy with Down syndrome, it has historically been pretty easy for people like me to get attention from politicians. We’ve seen campaigns hiring directly from the disability activist community, just as they do from other justice-oriented groups. We’ve also seen campaigns finally understand that disabled Americans are the largest minority group in the country (and the world), and that our issues are both specific and stretch the length of society.

In August, Kamala Harris released a credible disability policy plan. In early November, Pete Buttigieg put out a comprehensive 19-page document that may have been the best disability policy plan ever released by a major presidential candidate, a distinction that lasted only until Julián Castro offered an even richer document a few weeks later. Castro applied his campaign’s expertise in intersectional justice to disability, demonstrating that the needs of disabled Americans go beyond the standard—and critical—issues of employment, health care, federal entitlements, and education. Castro’s plan included rigorous enforcement for community-based living, accessible housing (fitting for a former HUD secretary), and, perhaps most importantly, changing some of the traps that keep disabled people both in poverty and out of marriages to continue to qualify for benefits.

Castro’s top spot didn’t last long. As Sara Luterman wrote in The Nation, Elizabeth Warren’s argument that “all policy issues are disability policy issues” offered an even more holistic approach to identifying the optimal ways that the federal government can make America more equal for disabled Americans. And then along came Bernie Sanders, whose 2016 campaign never responded to my queries on disability issues. Before the Iowa caucus, the Sanders team published a plan that somehow exceeded Warren’s in depth and ingenuity. The plan opened with the basic principle, “Disability rights are civil rights,” and then over 30 pages offered creative solutions and arguments based in fundamental moral principles to wield executive power to make America more inclusive. Best of all, these plans all emerged out of consultation with a diverse pool of leaders in the disability community. They built on each other, with each raising the bar for what might be a newsworthy set of policy goals related to disability, which then subsequent campaigns cleared. We’ve come a long way from my exclamation of delight to just hear Clinton say the word “disability” on a debate stage.

Except that we’re now looking at Joe Biden, whose campaign seems not to have learned the lessons of the last four years, but continues to rest on the laurels of important, but now decades old, disability legislation like the Americans with Disabilities Act.

A full accounting of the rise of the disability rights movement is a decades-long story featuring scores of organizations and hundreds, perhaps thousands, of leaders. Even just looking at presidential politics would require starting in the late 1960s or ’70s, with a seriously scaling up during the ’80s with the efforts that lead toward the passage of the Americans with Disabilities Act in 1990. In 2008, the Obama team formed what I believe to be the first disability policy working group for a presidential campaign. Many of those same people worked in the Obama administration and were involved during the Clinton campaign, with particular successes convincing the policy leaders to spend as much time listening to self-advocates as parent-oriented groups when it came to their autism policy. Still, Clinton largely focused on employment when it came to disability, a far cry from the more sweeping plans of today.

Between 2016 and 2020 two things happened that I think have chiefly, but not exclusively, driven this change. First, during the last campaign, the most connected elements of the disability community came together under the loose rubric of the hashtag #CripTheVote. The hashtag community—which included regular chats, blog posts, and other forms of virtual organizing—provided a focal point specifically on Twitter for disabled people to connect, discuss, and ultimately magnify their voices by speaking in something closer to unison. Formed by Alice Wong, Andrew Pulrang, and Gregg Beratan, #CripTheVote made disability as identity and community visible to other groups and political campaigns. Both Elizabeth Warren and Pete Buttigieg participated in #CripTheVote chats this year.

It’s easy for people to dismiss online activism as somehow fake, or at least not significant. When it comes to disability in particular, that’s a mistake. Twitter is the most accessible real-time conversation. It is not perfectly accessible, but its text-based public nature allows people to talk to one another who have radically different modes of interacting with the world. People who have difficulty leaving their homes for reasons of physical or social disabilities, people who are blind or deaf (or both), who do not speak verbally and communicate by typing (regardless of appendage used to type), and those with other disability-related access needs can all use Twitter to talk to each other. I have been in wildly accessible physical spaces, with captioning, ramps, sign, and warnings about a lack of scent. It is possible to make accessible spaces, but Twitter brings us together by design. It’s a space, therefore, where the disability community can manifest as a powerful constituency. And it doesn’t hurt that both journalists and political operatives also hang out on Twitter.

But it’s not just virtual organizing that’s shifted left-wing perceptions of disabled Americans. During the summer of 2017, it looked like the Republican Party was not only going to repeal the Affordable Care Act but was also fixated on turning Medicaid into a block-grant program (they remain obsessed with this). Numerous disabled groups organized public protests, taking to the Senate floor and staging acts of civil disobedience. The cameras rolled as disabled protesters were dragged, bleeding and chanting or handcuffed to their wheelchairs, out of the Capitol.

ADAPT had been staging direct actions for years. The group started protesting inaccessible buses and would simply roll their chairs in front and behind the buses, then stop until they were arrested, but they weren’t well known even in other civil rights communities. Captivated by the story, outlets began interviewing the leaders behind the protest, introducing the nation to people like Anita Cameron, who has been participating in actions for 40 years, with over 130 arrests. In the media, the activists were transformed from nameless individuals protesting to well-known activists to movement leaders. The Center for Popular Democracy provided another space for disabled activists to organize protests and coordinate messaging, as of course did numerous other disability organizations around the country. Every state has a Protection and Advocacy organization that is nonpartisan but allowed to lobby and organize around policy. Protecting Medicaid was an urgent call to action, and the P&A network gave activists state-by-state hubs around which to organize targeting specific legislators.

There were too many groups involved in saving Medicaid to recount here, but one new organization stands out, Little Lobbyists. Too often, parent organizations seek the limelight and the big funding, often at the expense of self-advocacy groups. Elena Hung, the mother of a disabled daughter, found a way instead to organize parents in solidarity with both their children and the larger disability community. They came to national attention during the 2017 ACA protests, and have remained involved. Elizabeth Warren recently released a video of her meeting with Xiomara, Hung’s daughter. Nancy Pelosi and several other representatives invited Hung and other leaders from Little Lobbyists to the most recent State of the Union address.

As we’ve entered 2020, then, disabled activists and allied organizations are integrated in both the insurgency and establishment within the Democratic Party.

And yet, as the dust settles from the last 14 months of this endless primary season and Super Tuesday results finalize, we see some of our gains being leeched away. Biden looks poised to seize the nomination. I have spoken to many different disability activists who were consulted by Castro, Warren, Sanders, and other campaigns. None have had substantial interactions with Biden, and there is no expectation that a comparable disability policy document will be forthcoming from the campaign. They have not formed a disability policy team nor performed visible outreach to the disability community that helped saved Medicaid.

I reached out to the Biden campaign to ask them about their policy plans and whether they were consulting any members of the disability community. Jamal Brown, national press secretary for the campaign, said that Biden “will release a plan that builds on those gains by restoring essential services and protections gutted by Donald Trump, advances critical investments, and ensures the federal government lives up to its commitment for people with disabilities—in health care, education, housing, and across the board.” They did not respond to follow-up queries about more specific timing. Brown also touted Biden’s achievements with “Rehabilitation Act of 1973, the Fair Housing Amendments Act of 1988, the original Individuals with Disabilities Education Act in 1975, and the landmark Americans with Disabilities Act in 1990.” This is an admirable record, but I’ve been concerned that when Biden does talk about disability, he doesn’t demonstrate growth beyond those bills of the 1970s and ’80s.

For example, Biden has been admirably forthcoming about his stutter, his own disability, but the disclosures have not prompted a broader exploration of disability culture. Instead, during a CNN town hall event, he said that “stuttering is the only handicap that people still laugh about.” That’s just not true. The current disability page at the Biden website, as Luterman has pointed out, is just a stub with four short paragraphs pointing to other sections (education, justice, older Americans, and reforming the ACA). When Biden met Samuel Habib, a disabled college student in New Hampshire who interviewed most of the Democratic candidates, Biden confused the ADA for IDEA (a core education bill), then reached out to stroke this adult man’s face as if he were a pet. Habib told Pulgrang, “I felt like he talked down to me. And I was mad that he touched my face. Because I have a disability and use a Tobii communication device, he was perceiving me differently than another 20-year-old. As not being smart.”

The history of the disability rights movement is full of paternalism like this, but this present moment demands so much more. It’s troubling to see the Democratic base coalesce around the one major candidate who seems stuck in 1990. We’re in the 30th anniversary year of the ADA. It was a great bill, but the challenges of 2020 require a different approach.

And yet I am optimistic that on the American left, members of the disability community—whether they are online, protesting on the streets, or running for office themselves—are organized and doing everything we can to work with our leaders in building a more just society. And if politicians don’t want to listen, we’re ready to make as much trouble as it takes to be heard.

The House of Representatives on Monday overwhelmingly voted to recognize the mass killing of Armenians by the Turkish government in 1915 and 1916 as a genocide. Armenian Americans have been pushing for this since at least 1984. This week’s vote happened in the context of widespread condemnation of Turkish human rights abuses and war crimes in Syria. Shockingly, 11 Republicans voted against the measure. One Republican, Paul Gosar of Arizona, voted “present,” a kind of affirmative abstention. Two Democrats joined him: Eddie Johnson from Texas, and Ilhan Omar, from Minnesota.

Omar acknowledges that the Armenian genocide was, in fact, a genocide. She wanted to point out that our foreign policy is driven by politics rather than principle and that she’d like to change that. But the “present” vote alone didn’t communicate that well, and the statement her office put out only further muddied the water. A line about relying on “academic consensus” was misinterpreted to imply that Omar doesn’t think there was consensus about the genocide. She does, and told me over the phone (after initial publication of this piece) that she was not questioning the academic consensus on the genocide, but rather that she wants recognition of genocide to be based on that consensus, not politics. What’s more, the statement seemed to say that we can’t talk about one genocide—of the Armenians in this case—without also discussing other genocides such as those of indigenous Americans or the violence of North American slavery. She later had to clarify on Twitter, “*Of course* we should acknowledge the Genocide” and that her whole goal was to argue that “we should demand accountability for human rights abuses consistently, not simply when it suits our political goals.” That’s a laudable principle, but what she’s done is generate a news cycle that undermines her own political work as well as the broader progressive goals she champions.

Having just spent months reporting on Omar for The Nation, I see a clear pattern. Omar places her ideals above practicalities, even though this can create distractions or even harm people she might otherwise count as allies. In our conversation, we talked about Israel and Palestine and how she’s made it sometimes more difficult for progressive Jews to support her, despite sharing the goals for peace in the Middle East and the desire to protect Palestinian rights. This time, she’s hurt Armenians who rightfully want their historical trauma to be recognized. Omar’s office tells me that she is working to set up meetings with Armenians in her district.

Here’s a quick history. In 1915, the military and political leaders of Turkey began forcibly deporting the approximately 1.5 million Armenians living in the Empire, driving them to the north and east of Anatolia. Over the next year and half, hundreds of thousands of people were displaced, with somewhere between 664,000 and 1.2 million killed. Those who survived endured forced migration, torture, rape, family separation, enslavement, and other horrors. The fracturing Ottoman government, run by the “Young Turks” of the Committee of Union and Progress, sought to promote political and cultural homogeneity among Turks by scapegoating Armenians. They also confiscated Armenian wealth and distributed it to their supporters. The recognition of its horrors paved the way for the modern definition of genocide as a specific crime against humanity.

In the meantime, the post-Ottoman Turkish government has been denying the reality of the Armenian genocide since the end of World War I. But with the exception of Turkish government–funded academic centers and programs, scholars of genocide are in agreement about the basic facts I’ve written above. In Congress, both Republican and Democratic lawmakers have worked for acknowledgement of these facts, while other lawmakers, both Republican and Democratic, have been hesitant to challenge Turkey. Turkey was a key ally against the Soviets during the Cold War, and after that, the United States saw it as an Islamic secular democracy and thus an ally during the Iraq Wars and myriad other conflicts in the region. Only now, with Turkey bombing our erstwhile Kurdish allies, was momentum sufficient in the House to get the resolution to the floor. A Senate resolution is not close to a vote, and I doubt Trump would sign it.

Omar’s “present” vote has sparked more coverage in the past 36 hours—of which this column is admittedly part—than the Republicans who voted “nay,” the GOP senators who aren’t even voting, or Trump’s complicity in Turkey’s ongoing massacre of Kurds. Good-faith critics on the left are concerned about “academic consensus” and “whataboutism,” but of course bad-faith critics on the American right are having a field day. As has been true since she took office, national right-wing media is eager to portray Omar as non-American, and now have fixated on a meeting Omar held with the Turkish president in 2017, alleging that she’s a foreign agent.

That’s not what’s going on. Omar does not operate like other politicians. Her commitment to principle is one of her great strengths, but it creates the conditions for what seem like unforced errors. She’s bringing Bernie Sanders to Minnesota this weekend, and I wonder if this vote will overshadow it. More important, Armenians are upset. I spoke over the phone with the Rev. Tadeos Barseghyan, a pastor at St. Sahag Armenian Church in St. Paul. The church is located in the adjacent district to Omar’s, but serves Armenians throughout the region (including neighboring states). Barseghyan told me that the vote was long past due, but that it’s “wonderful to see that the country that we all respect and love officially recognizes and hears the voices of our people.”

He said that although Armenians have been in Minnesota since at least the 1890s, the first survivor of the Armenian genocide arrived in Minnesota in 1919, the marks of enslavement literally tattooed on her body. Tadeos said that he found it difficult that Omar chose not to vote for the passage. “It is discouraging,” he said, that a representative who serves many Amenians in her district “chose not to hear their voices. It goes against her work, as she claims to be fighter for justice, for doing what’s right.”

Tadeos added, “Denying the Armenian genocide is denying gravity.” And I’m sure Omar agrees. She voted “present” to make a statement against a foreign policy of convenience. I’m sure she didn’t want to derail the conversation around the truth of the Armenian genocide or to cause pain to Armenians still searching for justice and recognition. Yet she did both. She’s seeking to make a better politics, but the jury is still out whether she can succeed without alienating people who would otherwise support her.

Just a few days after President Donald Trump incited his fans to chant “Send her back” at a rally in July, Representative Ilhan Omar and her staff fanned out down Lake Street in the heart of South Minneapolis. The road was closed off for a neighborhood festival, with sidewalks lined with informational booths, musicians, and people selling fruity drinks and local beers. People smiled and drew close to the then-36-year-old congresswoman. A trio of a cappella singers improvised songs about her. She played soccer with a few kids, skillfully nutmegging one of them.

I’ve seen politicians work crowds before, and Omar moves with a different energy. Instead of drawing the attention toward herself and her agenda, she expands the spotlight to those around her. At her core, she’s still a community organizer, building networks across the microcommunities that make up Minneapolis. As I walked with her team, I turned to her and said, “You seem to know everybody.” She replied simply, “It’s home.”

As one of the first two Muslim congresswomen in the United States, she’s a focal point of Trumpian racist fantasies about creeping Sharia. She’s also one of a handful of progressive and newly elected officials pushing the Democratic Party to the left. It seems her every public statement generates intense scrutiny from both the right and the center.

But to fixate on the national discourse obscures how Omar rose to prominence and how she operates in communities that have elected her by overwhelming margins. Since February, I’ve attended every public appearance of hers that I could, got to know her staff in Minneapolis and in DC, and sat down with her to talk about her political philosophy. Here’s what I learned: She likes to listen. She asks questions. She spends more time passing the microphone than speaking into it. She cares about the details of policy, especially the ways they might affect vulnerable communities. She is a product of inclusive Midwestern politics, not the result of a localized identity politics.

When I moved to Minnesota from the East Coast in 1997, I was fully infected by Lake Wobegon stereotypes. I thought the food would be bland. I thought everyone would be white. I thought I was surrendering diversity for pastoral homogeneity. We see that false vision manifest every four years in the buildup to the Iowa caucuses, when the heartland gets equated to a minority of rural white communities. Such stereotypes fuel anti-black and anti-Islamic bigotries and posit Omar as an outsider in the “real” Midwest.

Yet according to the 2010 census, more than three-​quarters of Midwesterners live in urban centers, not rural communities or towns. Even rural spaces aren’t as white as the media commonly portrays. For decades, Hmong families have been farming in Minnesota, and now increasing numbers of Somalis are doing likewise. Minneapolis, however, remains over 63 percent white, and Omar’s 5th Congressional District is more than 67 percent white. Her political ascent required the ability to connect across diverse communities.

Omar grew up in a Somali neighborhood in Minneapolis, but it’s a mistake to see her as someone whose political activity has been as a representative of just that community. She went around the traditional pathways into politics. “There isn’t really a Somali person who will say they see me as an organizer within the Somali community. That thought has been really laughable to many Somalis,” she told me.

After graduating from North Dakota State University in 2011, she worked as the child nutrition outreach coordinator for the Minnesota Department of Education. In 2013, she also served as the campaign manager for Andrew Johnson, a young engineer running for the Minneapolis City Council. When he won, she became his policy aide, seemingly placing her in line to run for office herself.

Her rise, however, wasn’t smooth. She encountered hostility and, in one case, violence. In 2014, at a local Democratic Party caucus where she was organizing in support of a Somali politician running against an incumbent Minnesota House member, multiple assailants, their identities never revealed, held Omar down and beat her, sending her to the hospital with a concussion. Afterward, she wrote an op-ed for The Star Tribune arguing that she was assaulted because “my opinions are contrary to those of a few male political leaders in our community” and in service to others who wanted to keep additional Somalis out of local politics.

It was clear then that Omar couldn’t be easily silenced, but she remained a reluctant candidate. She once told an audience she had to be asked 14 times before she agreed to run for office. She credits her decision to try for the Minnesota House of Representatives in 2016 in part to joining Women Organizing Women, a group led by another local Somali leader, Habon Abdulle. Since being elected, Omar has proved a natural politician. She authored 38 bills in the Minnesota legislature, and in the US Congress she has refused to back down in the face of the president’s cruelty.

n the day Omar flew home in July, a crowd of over 150 supporters, including Abdulle, greeted her at the airport, assembling on short notice as Facebook invites shot through Minnesota’s progressive networks. She entered the baggage claim area to cheers, grabbed a bullhorn, and delivered remarks that shifted quickly from radiant to serious. She said Trump turns his hate on her because he “is threatened [that] we are inspiring people to dream about a country that recognizes our dignity and our humanity.”

That was the last time over the weekend that she allowed Trump’s insults to dominate the conversation. I followed her that evening to a town hall at the Sabathani Community Center in a historically black neighborhood in South Minneapolis.

Here’s what happens at Omar’s events. She arrives to thunderous applause. She speaks briefly. If Trump has tweeted about her recently, she acknowledges it but then immediately turns to the issue at hand. That July night, for example, she invited Representative Pramila Jayapal to speak on a Medicare for All panel with Erin Murphy, a nurse and former Minnesota House majority leader; Melisa Franzen, a state senator; Rose Roach, a nurse and labor activist; and Dave Dvorak, an emergency room doctor. All the panelists spoke, then Omar asked them questions. She weighed in from time to time but mostly encouraged others to mobilize and educate the crowd. The same thing happened in a May panel on global warming and in August panels on maternal health for women of color and on immigration reform. She convenes and presides.

Omar is strengthening and expanding the networks that she is going to need to change the country’s direction. Her model of politics as an extension of community organizing helps make people feel empowered to seek transformative change themselves. At the end of the Medicare for All panel, attendees buzzed happily as they dispersed, no longer angry about Trump’s tweets but focused on taking the small steps required to build a more just health care system. Her brand of politics sends the message that we’re all in this together.

n August I made my way to the warehouse district just north of downtown Minneapolis to interview Omar. Her office is on the second floor, with a narrow reception area that opens up to a well-lit open space. She settled down on a couch and pulled a gray blanket over her lap. I asked her about her panel events, observing that I had never seen a politician talk so little. She told me, “It is an organizer’s philosophy. You set the table, and you allow for people to not only be seen but be heard.”

She traced this habit to her family, saying, “There was no hierarchy in my home, there was no one really smarter than the next person. We could just interject as kids, and whatever adult was in that space would pause and say, ‘You have something to say? Finish your sentence.’ I think it allowed us to grow and feel internal liberation. And it allowed whoever was the leader, the adult in that room, to feel more secure in whatever decision or thought process they were going through, because it wasn’t solely their own.”

She said this childhood experience still informs her philosophy of cogovernance—and not just when planning town halls. “If you think about the fundamentals of a representative government, you hear everyone so that you can represent their voice. That’s kind of how I think about my position as a leader,” she said.

I asked her if there is something especially Minnesotan about that, and she answered, “There’s something human about that,” but then elaborated, “I think that is why so many of us feel alive in Minnesota politics, because there is something about building consensus. There’s something about having joy in politics, knowing that everything is local, the decisions that you’re going to make are impacting your friends, your neighbors, your colleagues.”

Omar’s desire to bring new voices into politics has led her to sometimes avoid the traditional community spokespeople who crop up in diverse cities. “I have a complete disdain for gatekeepers, and I try to keep them at a distance,” she said, adding that she has developed “a complete disregard” for “talking to the subcommunities as a voting bloc.”

I pressed her, asking, “But don’t different groups have different needs sometimes?” She replied, “Not in the way that I see it. I don’t have particular needs as a Muslim refugee immigrant that aren’t really similar to anyone else wanting proper health care and full education and a world that’s safe from persecution.” While she acknowledged that different groups encounter distinct barriers and threats, she insisted that “our core needs as humans” are universal and that universality should govern our politics.

Although attacks on identity politics often come from the right, Omar offered a cogent reframing from the left. She said she never wants to assume, “because [people] have a particular identity, that they must be very different in the kind of world that they want.” She looks for ties based on common values instead of asking, “Who are the black leaders I’m connected to, so that I can do black organizing? What Somali leaders do I work with so I can do Somali organizing? What Jewish leaders am I connected to? That framework,” she added, “has not been part of my organizing work.”

This disregard for convention, though, may have also contributed to Omar’s early stumbles, when her criticisms of Israel invoked anti-Semitic tropes. These are the kind of unforced errors that she might have avoided had she spent more time cultivating those designated leaders who are skilled at navigating the rhetorical pitfalls of their communities.

She seems to be learning. Her office said that after she apologized for tweeting that political support for Israel was “all about the Benjamins baby,” she and her team reached out to local Jewish groups. She organized a call that included Jewish Community Action, the Jewish Community Relations Council, and several rabbis in her district to make sure her rebukes of Israel would not unintentionally divide allies.

She knows that controversy will follow her. As I wrote this piece, she tweeted a death threat that she had received. The wife of a DC political consultant alleged in a divorce filing that her husband was having an affair with Omar (who denies it). The Alabama GOP voted to expel her from Congress. And she shared an anodyne political cartoon about being barred from Israel—but the cartoonist, it turned out, had placed second in a 2006 Holocaust cartoon contest in Iran.

She said she’s handling the pressure easily enough. Being Somali, she explained, has given her a thick skin because of her community’s habit of good-natured mockery. “I also grew up in a Somali culture, where we are extremely direct and are trained to not take much offense. I mean, 90 percent of our nicknames are based on our abilities or defects that we might have as humans. Somalis call me ‘half-life’ because I’m so tiny. The natural thing for a Somali person when they see me [is] to say, ‘What is happening to you? Why are you dying?’”

What does worry her, though, is that people who identify with her will feel the blow. “I know that if they say something about Muslims or immigrants or refugees, that there is a refugee or an immigrant or a Muslim person who sees themselves in me and who will take it personally.”

Meanwhile, Omar and her team keep working to find new audiences to educate and experts to elevate. She’s always the “optimist in the room,” she said. “I am the kind of person that really isn’t challenged by any circumstances. I will see an opportunity.”

Last November, Utah voters simultaneously approved a ballot measure to expand Medicaid and elected a state government opposed to that expansion. The result is that the state hasn’t fully extended Medicaid eligibility while it spends extra money to cover fewer people.

As residents suffer without access to affordable care, an increasing number of Utahns are fed up. The Utah Health Policy Project, a nonpartisan group working on health care solutions in the state, submitted over 1,600 comments to state authorities, and has now collected almost 6,000 more responses to its survey. Reading through the whole collection, two consistent trends emerge.

First and foremost, the state is putting people in danger by blocking access to care. Second, the state is turning down federal money because of the GOP’s nonsensical anti-Medicaid ideology.

Utah isn’t alone. Since 2017, when the GOP failed to repeal the Affordable Care Act, the fight over publicly funded health care has largely moved to the states. Conservative governments are deploying work requirements and other administrative burdens to reduce the number of Medicaid recipients. Voters, meanwhile, used the 2018 elections and ballot initiatives to expand Medicaid in deeply conservative states like Utah, Idaho, and Nebraska, setting up showdowns between the clearly expressed will of the voters and their governments. Nowhere has the struggle been more convoluted than in Utah.

Instead of complying with the ballot initiative, the Utah legislature moved quickly last winter to avoid full implementation of Medicaid expansion by passing SB 96, a set of procedures that drags out the expansion for years while imposing new barriers to obtaining Medicaid. The governor, for his part, claims that these measures are necessary to make the expansion “financially sustainable” and to balance “Utah’s compassion and Utah’s frugality.”

The Centers for Medicare and Medicaid Services (CMS), part of Health and Human Services (HHS), helped the state impose the two standard GOP moves to limit Medicaid: work requirements and per capita caps. Under the Medicaid statute, states have the right to apply to the CMS for waivers to “test new approaches in Medicaid that differ from what is required by federal statute.” Trump administration officials, therefore, have a lot of say over the degree to which state governments can deviate from the broad expansion authorized in the ACA. First came work requirements in Arkansas, Kentucky, Utah, and other states, which require Medicaid recipients to demonstrate consistent effort to find work or apply for a waiver due to disability or other exceptions. Trump’s CMS has approved such waivers, even as courts in subsequent lawsuits keep ruling them contrary to the basic mission of Medicaid: providing health care to those who need it. Now Utah is a test case for the second move, imposing “per capita caps.”

Traditionally, Medicaid is funded at a set rate; for every dollar a state spends, it gets between $1 and $3 from the federal government. There’s no set cap on the total number of federal dollars; that is pegged to actual need. The GOP has been trying to set caps since the 1980s. Medicaid expansion under the ACA increased eligibility from households at 100 percent of the federal poverty line to those at 138 percent, with the federal government initially covering 100 percent of all increased costs and settling at 90 percent by 2020.

So far, the CMS has accepted Utah’s waiver requests for work requirements and to impose caps, but rejected a request for more federal funds in order to cover a limited pool of qualified applicants. Utah had wanted the full ACA funding but wanted to offer Medicaid only to the people at or below the poverty line. The CMS declined because, according to its response letter, doing so “would invite continued reliance on a broken and unsustainable Obamacare system.”

And yet despite conservative opposition, the core Medicaid statute and the ACA expansion remain the law of the land. So now Utah’s government has a choice. It can go ahead and pursue the full expansion of the program, as authorized by the ACA and mandated by the state’s voters, or it can spend more state money to cover fewer people. So far, Utah’s legislators have selected the second option.

tacy Stanford, a health policy analyst with Utah Health Policy Project, laid out the twists and turns of the last eight months over the phone with me. “It’s definitely been a roller coaster,” she said, since the “governor and legislative leaders started plotting their repeal effort.” Instead of full Medicaid expansion, SB 96 laid out a four-phase process requiring multiple rounds of federal approval, each of which can slow down expansion. Phase 1, which lasts through 2019, kept the federal match at the “70/30” rate, with the federal government providing only 70 percent of the funds, not the 90/10 rate authorized by the ACA, while limiting Medicaid to those at 100 percent of the poverty line. Phase 2 keeps expansion at the 100 percent level, but asks for 90/10 reimbursement and imposes the per capita cap and work requirements. Phases 3 and 4 push forward to the full expansion with the full ACA reimbursement, maintaining the caps and work requirements to limit access to the program. Stanford sums up these wonky details by explaining, “We’re currently paying three times more to cover about half as many people.”

Stanford told me that the work requirement is not designed to help people get jobs. “The work reporting requirement is just bonkers,” she said. “It includes a requirement to complete 48 job applications,” for example, before one can apply for a waiver. “If you get a job, you can file for an exemption, but there’s paperwork for the exemption, or if you’re a caregiver, if you’re disabled.” She paused, frustrated: “They think advocates are opposed to requiring work, [but] our concern isn’t requiring work, our concern is the paperwork barrier, and they made that worse instead of better.”

Again, Utah isn’t alone. Georgetown public-policy professors Donald Moynihan and Pamela Herd have studied the ways that governments impose “administrative burdens” to limit access to government services. In their book on the subject, Herd and Moynihan find that across the board—not just Medicaid, but also regarding driver’s licenses, voting, and other services—conservative governments impose significantly higher administrative burdens on their constituents. The 48-application requirement is a perfect illustration of their thesis. It’s not about getting people off Medicaid and into jobs, but raising a barrier to the public service for those least able to cope.

Via e-mail, I asked Herd and Moynihan to explain the root of the GOP opposition to expanding Medicaid. Herd responded that Republicans see Medicaid expansion “as a backdoor way to get to a single payer system.… Of course, the GOP in general has tight alliances with private health insurers who oppose these kinds of expansions.”

But there’s hope. Medicaid is still the law of the land, and both courts and career HHS officials are enforcing it, placing Utah’s attempt to undermine it in limbo. The Utah Health Policy Project has now collected thousands of comments from Utahns (and more recently from across the country, since what happens in Utah will set precedents for other states) in an effort to hold lawmakers accountable to the will of the voters. Most of the comments stick to either the principle of providing health care to the most vulnerable, the rejection of voters’ choice, or the preposterousness of the lawmakers’ choice to reject federal money. Occasionally, though, one can sense the fears emerging out of the anonymous voices. A therapist talks about patients who are “one bad night away from suicide” now facing new burdens of paperwork. A parent writes, “Medicaid enrollment limits tell my son his life is worthless and he might as well die because he is diabetic.” Another respondent worries that enrollment caps will “limit my ability to get my asthma treated and medications covered.”

People now receiving care for chronic conditions are terrified they will lose coverage. One writes, “Healthcare is a life or death situation for my family. As a working single mother I could not afford to pay out of pocket for coverage not to mention the rising cost of medications. I have no savings account, I have no wealthy relatives, I have no ability to borrow money from a person or institution, I have no assets. An arbitrary cutoff date shouldn’t be the reason a person lives or dies due to healthcare in any first world country.” Another sees Medicaid as a pathway toward stability, precisely the kind of process Republicans claim to want when they enact work requirements. The respondent writes, “I am a type 1 diabetic, and my SO has been struggling with complications from endometriosis. I am working toward an electrical engineering degree, and we both work hard to keep our heads above water; but we are always above these cut-offs financially. We want to work. We pay for what we use. We try to be responsible, but when I can’t afford my insulin, our lives are transformed into complete garbage. In engineering, you design with safety factors in mind—margin of error—so I hope designers of health policy would start doing so too.”

Stanford told me that for some people health care is coming too late. Her organization helps people sign up for Medicaid, and she says that one of her coworkers related a story in which someone committed suicide because they just couldn’t get the care they needed. Right now, the slow-moving expansion has locked out as many as 40,000 to 78,000 of health care. Across country, at least 15,000 people have died because their states didn’t expand Medicaid, according to a study out in July.

One lesson from Utah is clear: Voting for Medicaid expansion isn’t enough if you don’t also elect a government committed to providing health care to those who need it. Five more red states—South Dakota, Mississippi, Wyoming, Florida, and Missouri—have recently approved Medicaid expansion ballot initiatives for the 2020 election. Passing those initiatives matters, but it won’t be enough. We also need lawmakers who listen when the people speak.

Toward the end of Stacey Abrams’s powerful response to the State of the Union address, she turned to the reason she’s not currently the governor of Georgia: “Let’s be clear. Voter suppression is real. From making it harder to register and stay on the rolls to moving and closing polling places, to rejecting lawful ballots, we can no longer ignore these threats to democracy.” Between Abrams’s speech and the introduction of the voting-rights bill H.R. 1, the first piece of legislation proposed by the new Pelosi-led House, Democrats are systematically focusing on strengthening our democracy. They better, because America is in a strange political space: Progressive ideas are wildly popular, but nearly impossible to enact. To fix this, we need to reshape our electoral systems to allow everyone’s vote to count equally and finally kill the zombie myth of the center-right nation.

On issue after issue, American voters are firmly left-of-center, and in some cases ready to embrace our most progressive ideas. They want more gun control. They want increased abortion access. They want criminal-justice reform. Fifty-six percent of all Americans want nationalized single-payer health care, and nearly everyone wants the government to do more to bring down costs. Fifty-nine percent of registered voters support higher taxes on the wealthy. Fifty-four percent of Republicans and 70 percent of all Americans want to “soak the rich.” Even fifty-seven percent of people who identify as conservative Republicans support the main components of a Green New Deal. Seventy-two percent believe climate change is a threat. Everybody hates gerrymandering.

Given that so many Americans support these positions, what would it take to actually make progress on any of them? As Senator Cory Booker joins Senators Kamala Harris, Elizabeth Warren, and Kirsten Gillibrand as credible candidates formally running for president and with Senator Bernie Sanders and former Vice President Joe Biden likely close behind, we are beginning to see Democrats not just organizing around policies but advocating ways to make sure these policies can become law. H.R. 1, The For the People Act, would expand access to the polls, prevent voter purges, and ensure paper backups for electronic voting. That’s an important start, but if we really want to enact a progressive vision that an overwhelming majority of Americans support, we’re going to have to attack larger misconceptions and structural issues as well.

One major problem is that too many people keep believing that America is a center-right nation. If that were true, then trying to enact progressive policies would be political suicide. That’s not true now, and it may never have been. In 1986, authors Thomas Ferguson and Joel Rogers tried to dissuade the Democratic Party from fleeing to the middle by writing in The Atlantic that “there is little direct evidence that mass public sentiment has turned against the domestic programs of the New Deal, or even the most important components of the Great Society, and little evidence of a stable shift to the right in public attitudes on military and foreign policy.” At least in that era, Republicans were mounting major electoral victories. In 2008, in middle of a wave of Democratic wins, pundits on Fox News, MSNBC, and even the cover of Newsweek confidently told newly elected President Barack Obama that this was a country of moderates. Doug Schoen, a center-right pollster, tried to claim that the 2008 results were a rejection of conservatism but not an endorsement of liberalism. When Republican Scott Brown won a Senate seat in Massachusetts in 2010, pundits used that as evidence for the center right. In 2017, Schoen returned to declare that the Democratic Party was on life support because the electorate “remains center-right on issues ranging from immigration to tax policy to abortion.” Most recently, Howard Schultz’s flopping spoiler presidential run was based on advice that a huge percentage of Americans define themselves as moderate. This is, as The Atlantic writer Derek Thompson notes, a fundamental misreading of data that in fact shows so-called independents skewing more and more partisan.

This myth is hard to kill for two reasons. First, “conservatism,” note the lowercase c, is safe for corporate hegemons, patriarchs, and pundits. The mythic center doesn’t threaten the role of capital, the military, or the dominance of white men over both public and corporate entities. As we drift toward the poles, the authoritarianism on the right likewise is much less scary to the vested powers in American society than comparable ideologies on the left.

Second, the most influential American voters are much more conservative than the country as a whole thanks to the GOP’s efforts to manipulate the electorate. As Ari Berman has documented for The Nation and Mother Jones, the GOP has intensified its efforts to suppress voting in communities of color across the nation. Berman told NPR, “You’re seeing a national effort by the Republican Party to try to restrict voting rights, and it’s playing out in states all across the country.” North Dakota Republicans tried to keep Native Americans from voting. North Carolina and Arkansas passed new voter-ID laws. Brian Kemp spent six years suppressing black votes in Georgia as secretary of state, easing his path to the governor’s mansion. Thankfully, Democrats are fighting back in ways we did not see in 2006 and 2008 (when they reclaimed first the House, then the Senate and presidency, and had a chance to pass voting reforms). They are pushing for felon re-enfranchisement across the country, opposing voter-ID laws, and elevating voices like Stacey Abrams and her voting-rights organization, Fair Fight.

The information landscape is even trickier to fix. Lots of people who want change continue to vote for the status quo embodied by the GOP, whether due to racism, single-issue voting on abortion or guns, or concerns that other people will benefit while they get left behind (usually another form of racism). A study by Columbia Journalism Review described right-wing media as “an internally coherent, relatively insulated knowledge community, reinforcing the shared worldview of readers and shielding them from journalism that challenged it.” People inside that community may love the idea of higher taxes on the rich, but they aren’t going to read the French leftist economist Thomas Piketty or hear from pundits who have. The authors of the study conclude that “traditional media needs to reorient, not by developing better viral content and clickbait to compete in the social media environment, but by recognizing that it is operating in a propaganda and disinformation-rich environment.” That’s going to require media to actually push against the right-wing grain. We’ve never really had liberal media, just liberals working in corporate contexts that encourage speaking comfort to power. The CJR report was published before the 2018 elections, and it may have underestimated the importance of virality. Through tweets, Instagram stories, and what I call “the politics of digital imagery” newly elected Congresswoman Alexandria Ocasio-Cortez has already shifted the debate around a 70 percent marginal tax rate for incomes above $10 million.

The third piece, and the one least discussed by serious presidential candidates, are the structural issues. The Senate is antidemocratic, offering small, homogeneous states the same degree of influence as large, diverse ones. Progressive policies are popular across the country, but the Senate—especially given the “filibuster everything” strategy the GOP adopted in 2008, stands in the way. The Electoral College does likewise, diminishing the political power of the masses and acting as a check against the voice of the people. Both of these antidemocratic institutions were put together by elitist founding fathers who didn’t trust the majority. They’re designed to suppress the vote, but these structures can be changed.

The National Popular Vote movement is spreading state-by-state to try and change our systems without federalizing elections or having to amend the Constitution. Proponents are pushing states to pass laws to guarantee the presidency to the winner of the popular vote. So far, states totaling 172 electoral votes have passed such legislation; if it reaches 270, then we will effectively have a popular-vote system. Then there’s the Senate. We need filibuster reform so that the party that controls 51 votes in the Senate can actually govern. Yes, that may empower a majority I don’t like someday, but the filibuster has hardly slowed the GOP so far. Rule changes, though, aren’t going to be enough. In lieu of abolishing the Senate, we should at least have more senators, and we all know just where to find them: DC and Puerto Rico.

The District of Columbia, which has a larger population than Wyoming or Vermont, has overwhelmingly voted for statehood. Puerto Rican statehood movements have been more contested, but it’s hard to imagine that Trump’s lackadaisical response to Hurricane Maria would have been possible had the island’s two senators been able to act. Four more senators won’t make the Senate less elitist, but would at least create a body more able to reflect the will of the nation’s majority. All of the major presidential candidates appear to support DC statehood.

Americans want progressive ideas, even ones widely considered impossible to enact. The fact is we live in a left-wing nation with a voter-suppression problem. Politicians who want to govern need to address the latter at the same time as they put forward their vision for a progressive future.

There’s nothing wrong with the 25th Amendment. It’s a tool intended to handle the orderly transition of power when it’s universally acknowledged that the chief executive of the United States is unable to fulfill his or her duties. There might be all kinds of things wrong with Donald Trump’s mental faculties, but, with apparently unwavering Republican support for the president, the 25th Amendment will not help us respond to the White House’s current occupant. It won’t stave off nuclear hellfire. It won’t even stop Trump from tweeting.

Over the past two years, pundits, politicians, mental health professionals, and countless folks on social media have weighed in with their thoughts about Donald Trump’s brain. While it’s possible that he is experiencing age-related cognitive change (humans, after all, do that as they age), he’s also the same racist, sexist, abusive liar that he’s been throughout his life. When people casually speculate about a pathological basis for his disgusting behaviors, they have zero impact on him or his presidency. They do, however, spread the stigmatizing idea that mental illness causes objectionable behavior. It’s a stigma that people who identify as mentally ill know all too well. It leads to closeting, shame, lack of care, and self-harm.  

Perhaps in response to the pushback to the casual use of mental-health stigma against Trump, even people eager to call Trump crazy are moving away from armchair diagnoses. Most recently, 13 mental-health professionals, all extraordinarily qualified, have joined with Brave New Films to assert the need in a new short film for a formal assessment of Trump’s mental function. The experts calmly state that in the face of the presidential power to start a nuclear war, we need a board of experts to assess whether Trump is fit to perform the duties of the presidency. They do not, of course, explore whether the very existence of a nuclear arsenal capable of destroying all life on Earth is a post-rational fact that no human could competently handle.

The new film picks up on a general shift in our conversations around the president’s brain. In early 2018, Trump reportedly “aced” the Montreal Cognitive Assessment, as reported by his doctor. It’s a fairly simple test that establishes a useful baseline for certain kinds of overt cognitive change—I have close members of my family who can no longer pass it, I’m sad to say. I like to think that a president who couldn’t pass would eventually generate sufficient press coverage and concern among his or her staff to invoke the 25th Amendment as an appropriate intervention. But merely erratic and detestable conduct, even with diminishing vocabulary and incoherent phrasing, won’t shake Trump’s grip on power. The GOP, as evidenced by their support at the State of the Union, has made that clear.

In response to the news about the test, despite Trump’s risible “very stable genius” tweet, the discussions about presidential mental health have taken a new turn. Journalists and mental health professionals are no longer calling Trump crazy; instead, they are calling for non-partisan, formal, and transparent mental-health assessments to become a standard part of presidential vetting. The New York Times editorial board, in a piece that ultimately suggests the best response to Trump is politics (something I’ve argued as well), writes, “In the future, it would be a good idea if presidential candidates voluntarily submitted to a mental health evaluation.” Margaret Sullivan, in The Washington Post, warns about shattering norms (i.e casually diagnosing Trump from afar), writing, “When norms are shattered, they stay that way, like so many Pandora’s boxes with their lids wide open for all time.” In The Atlantic, James Hamblin agrees that identifying mental illness without talking to a person is an exercise fraught with bias and unprofessional conduct. But we need to do something, he argues: “The idea that the president should not be diagnosed from afar only underscores the point that the president needs to be evaluated up close.” He picks up the idea of a “presidential fitness committee,” which first got attention after President Ronald Reagan’s diagnosis of Alzheimer’s went public, writing, “It could regularly assess the president’s neurologic status and give a battery of cognitive tests to assess judgment, recall, decision-making, attention—the sorts of tests that might help a school system assess whether a child is suited to a particular grade level or classroom—and make the results available.” The recent Brave New Film production reaffirms Hamblin’s sense that we must do something about measuring presidential mental fitness.

From a disability rights perspective, this kind of suggestion is a vast improvement on casual stigmatizing, though still concerning. Formal assessments of “fitness” are laden with normative assumptions about how brains work, something which has long disadvantaged people with neurological differences. Still, it would be good to include medical transparency as part of a wide-reaching effort to re-establish norms in a post-Trump era someday. I’m much more concerned about emoluments and corruption than Trump’s mental health, but I’m in favor of mandating certain kinds of disclosures for future presidential candidates. Norms, it seems, no longer hold. We’re going to need rules.

But then what? What happens when someone with bipolar disorder, schizophrenia, depression, anxiety, or any number of other neurological conditions runs for president? We witnessed in 2016 the constant barrage of right-wing attacks on Clinton’s physical and mental health, vicious in both frequency and ableism (and sexist ageism, since Trump, older and in worse shape, was allowed a freer pass). If we’re to push for a mental-fitness examination, we can’t allow “fitness” to consist of “no diagnosable conditions.” Instead, these efforts to assess Trump’s brain should be re-positioned to support the idea that people with disabilities can do everything non-disabled people can, given appropriate supports.

Best of all, the 25th Amendment actually supports the notion that people with psychiatric disabilities can be president (as first pointed out to me by philosopher and writer Elizabeth Picciuto). The document instructs on procedure in cases when the president “is unable to discharge the powers and duties of his office.” That’s a functional description, not a pathological one. It fully allows for a president to require both appropriate supports and reasonable accommodations to do their job. What’s more, it’s in line with what we know about history. Many presidents have, to the best of our powers of retrospective diagnosis, had conditions such as depression, anxiety, and alcoholism. Left unsupported, as is true with non-presidents, these conditions can lead to problems, but that’s a social and cultural problem, not a medical one.

The Brave New Films video shows that the drive to pathologize Donald Trump isn’t going away, but neither, alas, is he. Trump’s vice president, Cabinet, and party are sticking with him until the end. So let’s use this moment as an occasion to talk about mental health and supports. The problem isn’t the 25th Amendment and how it’s written, but us, and how we might put these tools to use. We don’t resist Trump or Trumpism by embracing ableist conceptions of normal.

Anti-choice activists have found what they think is a winning wedge issue: Down syndrome and other “sympathetic” disabilities. The latest attack was in Ohio, where, in late December, GOP Governor John Kasich signed a bill that bans abortions after a prenatal diagnosis of Down syndrome. Ten states have either passed similar bills or have presented them before legislatures. The function, and I suspect the goal, of these laws is not to improve the lives of people with Down syndrome or even to stop abortions based on prenatal diagnoses. Instead, the anti-choice movement is trying to use the public’s positive feelings about cute kids with Down syndrome, like my son, to undermine reproductive rights.

In response to these threats to reproductive freedom, I’ve had to start saying something new and difficult: If individuals want to terminate an otherwise wanted pregnancy due to a prenatal diagnosis, I support their decision.  

I’ve spent many years now asserting the need to reorder how we ascribe value to diverse human lives. My son might not participate in the capitalist economy, live independently, or speak (he might also do all of these things!), but his value as a human is intrinsic. I’d like others to see it that way too. Selective abortion, as I’ve written for The Nation, reveals our attitudes about disability and other forms of difference. Still, it’s time to affirmatively support the right to eugenic abortion, even as we fight the need for it. The struggle for disability rights begins with the affirmation that no one gets to tell anyone else what to do with their body. That includes abortion.

Some background is necessary here. Down syndrome is only one of the conditions for which we can test, but it is perhaps the condition around which contemporary opinion is most divided. It’s not a fatal condition (unlike Tay-Sachs, for example), but most people would characterize the disability as significant, though widely varied. With community and educational supports, people with Down syndrome live happy, inclusive, meaningful lives, and there’s data showing that having a sibling or child with Down syndrome strengthens overall familial bonds. At the same time, screening technologies are becoming more accurate and can be used earlier in a pregnancy.

Enter the anti-choice activists and their politics of division and destruction. They can exploit people with Down syndrome (often stereotyped as angelic) to push back reproductive rights. Republicans in North Dakota, Indiana, Louisiana, and now Ohio have successfully shepherded bills banning abortions if the pregnant individual is seeking to terminate due to a prenatal diagnosis. And more of these prohibitions are coming. According to a database of anti-choice laws maintained by the nonprofit publication Rewire, multiple other states are bringing forward bills intended to ban abortion following a prenatal diagnosis of either any genetic anomaly or, as in Ohio, just Down syndrome. Imani Gandy, senior legal analyst for Rewire, told me that anti-choice activists are trying to take “social-justice frameworks and rubrics and then shove their anti-choice framework into that.” She said there’s a similar history of citing feminism as a reason to ban abortion. Now it’s disability rights, which, she said, is not a priority for the bills’ proponents: “Once the child is born, and someone is taking care of a kid with Down syndrome, where are the conservatives? Nowhere to be found.”

Gandy is right. In Ohio, for example, parents of kids with Down syndrome are finding fewer and fewer resources. One parent of a daughter with Down syndrome, columnist Holly Christensen, wrote in the Akron Beacon: “Our statehouse is controlled by the Republican Party and has been for many years. The same legislators who voted to outlaw abortion of fetuses with DS [Down syndrome] also voted this past year to remove language that would have increased funding to county DD [developmental disability] boards.” In an e-mail, Christensen told me that she’s constantly encountering “workers and teachers telling us what they used to provide but no longer can due to budget cuts.” The same story can be found in other states, where GOP-held legislatures are using austerity to shred access to disability services.

So what are parents like me—not to mention other pro-choice allies and self-advocates in the disability community—to do? I put that question to Shain Neumeier, Rebecca Cokley, and Elizabeth Picciuto. Neumeier, who wrote an extremely important essay on the intersections of reproductive and disability rights for NOS Magazine, identifies as an autistic attorney and activist with ectodermal dysplasia. Cokley, the former executive director of the National Council on Disability and now a senior fellow at the Center for American Progress, identifies as a little person, is the mother of two biracial children with dwarfism, and is pregnant with a baby projected to be of average height. Picciuto identifies as neurotypical. She’s a philosopher and mother of a child with multiple disabilities, including cri du chat syndrome.

All three independently said much the same thing: Concern over selective abortion is serious, but placing the autonomy of a pregnant individual over their own body comes first. Not only is it ethically correct, but prioritizing bodily autonomy remains the best path forward to support disability rights.

Neumeier sees the current attempt to deploy disability to restrict reproductive rights in the long context of states asserting the right to disabled people’s reproduction. In the past when the government has claimed this authority, disabled individuals who were disproportionately poor and non-white were forcibly sterilized. It’s with this history in mind that Neumeier wrote in the Nos Magazine piece, “Because the disability community knows the costs of medical coercion, we shouldn’t support, much less work toward, any restriction on reproductive freedom in the name of opposing eugenics, nor should we allow ourselves to be used by anyone who would.”  

Over direct message, Neumeier argued, “the ‘pro-life’ crowd of legislators isn’t meaningfully on the side of people with disabilities. They’re not advocating for all the things that prenatal screening could actually help with—e.g., accessing supports and neutral/helpful information in advance of and then after birth.” The laws are really “part of their campaign to restrict bodily autonomy for pregnant people.”

I asked Neumeier how they would respond when people with Down syndrome come out in favor of these anti-choice laws. It’s not a scenario they have encountered personally, Neumeier told me, but the answer is clear. “People with Down syndrome have the total right to decide whether to be pregnant themselves,” they said, “but they [are] no more than anyone else in the position to make a decision about a body that’s not their own.”

Cokley agrees. She told me over the phone, “I think the challenge for any disability community is to really develop cultural bodily autonomy. For the dwarfism community, we’re seeing this with genetic testing and genetic engineering.” It’s not that she rejects the benefits of medicine. She said, “There are symptoms of our dwarfism we’d like to see lessened or treated, but a majority of people with dwarfism aren’t looking for a cure. We see our dwarfism as an intricate part of all who we are.”

She’s had hard conversations with both anti-choice members of her community and folks in the reproductive-rights arena who don’t seem to care about eugenics. To the former, she said, “telling me what I can or can’t do with my body is just as bad as the medical-industrial complex [and its focus on eugenics]. We have the right to abortion. That right is important. People in our community fought for it.”

She said she has to be ready to support someone who chooses to have an abortion after a prenatal diagnosis, but she also said she believes that the reproductive-rights community needs to affirm her right to celebrate dwarfism and to choose whether or not to have kids with dwarfism.

Negotiating conflicting ethical perspectives is complicated, calling for someone with expertise in bioethics, a subject Picciuto teaches at the University of Maryland, Baltimore County. She’s also wondering what this brave new world means for her own choices and her son’s future. Over the phone, she told me that she does, indeed, “have moral qualms for people having abortions for a reason that’s child related, [for a reason] that’s a property of the child.” That said, she’s morally opposed to all kinds of things that she believes should be legal. Abortion belongs to a “category of autonomy and decision making” that supersedes her qualms, she said.

Personhood, for her (and other philosophers, such as Kant), lies in the power to make choices for oneself. Supporting that agency comes first, not only in abortion, but in the whole framework of how to think about disability rights and building a more inclusive society.

Right now, Down syndrome and other genetic anomalies are being politicized as Republicans try to take away autonomy by playing on fears of eugenics. It’s time to defang that threat by affirming that a pregnant individual has the right to make whatever choice they wish to make, under any circumstances. This affirmation serves, rather than works against, the broader campaign for disability rights.

Neumeier knows that Down syndrome is the canary in the coal mine. The ways in which Down syndrome are being politicized are coming to other conditions, especially as well-funded initiatives looking into the genetics of widespread disabilities like autism move forward. Neumeier said, “A lot of us in activism circles are looking at what’s happening in the Down syndrome community and legitimately worrying, ‘when’s that going to be us?’”

This is the moment in which we need to build ties across communities. “Being pro-neurodiversity, anti-eugenics, and pro-choice,” Neumeier said, “it feels like we’re in a race against time to establish through our advocacy that we’re all valuable and deserving of support.” What comes next isn’t knowable, but the GOP anti-choice bills are doing their part to make sure the future unfolds in fear, division, and silence.

Over the summer I moved from Illinois to Minnesota, in large part because state governments matter for families like mine. My son has Down syndrome, and eventually he’s going to be dependent on a state government. We wanted one that was functional, well-funded, and inclusive. Illinois fails on all three grounds. Good government, especially at the state level, can create the conditions for people with disabilities to live independently and thrive. Bad governments, on the other hand, magnify and intensify vulnerability.

Mostly buried beneath early November’s onslaught of news, stories from Oklahoma, Iowa, and Maine reveal the ways that state governments, through both apparent incompetence and maliciousness, are failing disabled residents and their families. In the first two examples, disability programs are being cut as a result of self-imposed budget crises. In the third, the governor is using disability as a shield to ignore the will of the voters, while at the same time not serving disabled Mainers.

Oklahoma is the worst of the three. At the beginning of November, agencies received letters stating that the “ADvantage Waiver,” a program funding home-based care for disabled individuals and seniors, would lose funding as of December 1. About 21,000 Oklahomans will lose the care that enables them to live independently. About 10,000, according to the Department of Human Services, will be forced to move into nursing homes—except that the state doesn’t have enough beds in nursing homes. So disabled Oklahomans are caught waiting to find out what will happen: Will they be trapped in their homes without services? Will they be forced into nursing homes or Hospitals? Will they be abandoned?

The problem, of course, is money. The conservative state has stripped away its tax base in a wave of Tea Party glee. Now it’s broke and, rather than raise taxes (a budget just failed to pass in special session), it is closing nursing homes and slashing Medicaid.

Iowa also has a budget crisis, if a less acute one than in the Sooner state. The state, like most, relies on contracts with private providers to provide services. In order to ease its revenue shortfall, the Department of Health has been trying to lower or hold costs steady. On October 31, the Department of Human Services revealed that AmeriHealth, a giant corporation that ran about 75 percent of the Medicaid services in Iowa, is going to stop working with the state. That’s not good, but the specific problem here is that DHS has known since the end of September and just didn’t tell anyone. Ignoring a problem, it turns out, doesn’t make it go away.

Now the over 215,000 individuals who used AmeriHealth are scrambling. DHS has assured affected Iowans that they will be automatically enrolled into extant programs run by other corporations, but the transition will be abrupt and complicated. Companies like AmeriHealth contract with local providers who actually run services. These providers have contracts with AmeriHealth, but not with the new companies, and now have just weeks to negotiate new contracts. AmeriHealth offered services that the other providers currently don’t, and it’s not easy to scale up so rapidly. The odds of gaps in care for tens of thousands are high. Gaps in care can prove fatal.

Meanwhile, in Maine, voters just resoundingly approved a measure calling for the state to adopt Medicaid expansion under the Affordable Care Act. Governor Paul LePage has refused to act on the expansion, though, saying it would harm disabled Mainers. He said, “The last time Maine experimented with Medicaid expansion it…took resources away from our most vulnerable residents—the elderly and the intellectually and physically disabled.” Trying to use disabled individuals as a shield against providing health care to more people, including people with disabilities who might not qualify under Medicaid otherwise, is bad enough, but LePage has a terrible record on caring for the needs of disabled Mainers. Last August, federal audits and local reporting revealed serious neglect in LePage’s Health and and Human Services. First, the state reduced available care for disabled people in crisis (for when individuals feel they pose a threat to themselves or others). State law mandates the maintenance of “adequate” beds for crisis situations, but when a private contractor withdrew from the system, taking two-thirds of the supply with it, the state did nothing. On the flip side, when disabled Mainers were victims of violence, the state didn’t bother even investigating in a third of the cases.

None of these stories are unique to the three states in question. In many states, especially those now governed under austerity agendas, disability services are always teetering on the edge of being cut.

Disabled individuals and those who care for them are constantly being forced into exhausting battles just to cling to the bare minimum of supports. We saw that all summer as ADAPT and other disability-rights groups fought to save Medicaid at the federal level in DC. But it’s the states that actually run and provide the services, and the systems of administration and distribution of care are collapsing across the country. These looming health crises are, moreover, self-inflicted by failing and flailing state governments.

Good government matters. It matters for individuals who depend on state programs. It matters when state agencies can’t manage partnerships with corporate entities. It matters because a well-run state can maximize autonomy, agency, and independence. When states can’t fund and manage programs or communicate changes to residents, the harms spread quickly through large swaths of the population.

There are going to be 200,000 Iowans thrown into new programs. Seventy thousand Mainers are waiting for Medicaid. Ten thousand Oklahomans are terrified of being forced into nursing homes. We cannot allow our states to fail those for whom effective state government is the only answer. In their frenzy over tax cuts and austerity, too many state governments are betraying the people they were elected to serve.

Within a day of the massacre of men, women, and children in a Texas church, President Donald Trump made three claims. First, he maintained it wasn’t a guns problem. Second, he said the shooter was stopped by someone else with a gun. Third, he blamed mental illness. Together the statements made one thing very clear: There is no amount of violence or sympathetic victims that will ever shame today’s Republican Party to take action on guns.

The details are horrific. The details are always horrific. The shooter, a white male with a history of domestic violence, went in to First Baptist Church of Sutherland Springs, Texas, armed with an AR-15 style rifle. He opened fire. Victims included the 14-year-old daughter of the pastor, a 72-year-old, numerous young children, and a pregnant woman. One family hid in a bathroom, shots penetrating the walls. An 8-year-old ducked beneath a pew as his brother and two sisters were shot. After the killer had murdered 26 people, injured 20 more, and spread trauma throughout his community, he left the church. There he encountered at least one armed civilian, dropped his rifle, fled in his car, crashed, and seems to have shot himself in the head. A “good guy with a gun” did not stop the incident. The broken bodies lying in the church and the trauma of the survivors demonstrate clearly that the incident was not halted. Trump, unsurprisingly, claimed that “fortunately somebody else had a gun that was shooting in the opposite direction.”

Trump’s comments on mental health are typical of Republican response to violence. He characterized the killer as a “very deranged individual” who has a “mental health problem at the highest level.” This was also his and Representative Paul Ryan’s (R-WI) response after the Las Vegas shooting. Republicans (and some Democrats) have been making comments like this for decades. On Monday in Japan, though, Trump added, “We have a lot of mental health problems in our country—as do other countries—but this isn’t a guns situation.”

That middle clause, “as do other countries,” is quite the tell. Trump regularly runs his mouth freely, revealing the subtext that lies beneath the usual GOP talking points. Trump isn’t wrong. Many countries have not adequately met the mental-health needs of its population. But linking acts of violence to people with mental health is gross stigmatization that belies the data. People with mental illness are vastly more likely to be victims of violence than perpetrators of it.

Still, let’s take Trump at his word here and agree that around the world other countries also have people with unmet mental-health needs. And yet among 171 nations of the world, the United States is the clear leader in mass shootings. It’s the guns. Of course it’s the guns.

Stigma is dangerous. When we spread the lie that mental illness leads to perpetrating mass murder, we push people to closet their conditions. Mental health, like all forms of health, requires maintenance and support. Secrecy just leads to vulnerability and self-harm. Even worse, the GOP, led by now-disgraced Representative Tim Murphy (R-PA), has frequently used high-profile incidents of violence to call for forced medication and easing the requirements for involuntary commitment. In other words, the GOP is more than willing to strip away liberties from people with disabilities in order to avoid talking about guns.

Just as we were processing the carnage in Texas, the news broke that Clark County Sheriff Joe Lombardo was crediting Stephen Paddock’s mass murder in Las Vegas on the killer’s becoming depressed after losing money. When white men kill, law enforcement, media, and elected officials seek out explanatory mental-health-based narratives to avoid talking about guns. Notice that the recent violence in New York generated no such talk, as the president and his lackeys quickly launched into anti-Islamic and anti-immigrant diatribes. This kind of prejudicial discourse is typical when people of color commit violence.

The emphasis on mental health is merely a craven deflection from the need to talk about guns. Our mental-health system needs a lot of help, though not to stop gun violence (only 3 to 5 percent of violent acts involve people with psychiatric disabilities, who otherwise make up about 18 percent of the population). The GOP spent the summer trying to defund community and medical-health supports in their attacks on health care.

Trump’s little slip, “as do other countries,” makes his agenda transparent. The problem is guns; Republicans know it; and they’re not going to do anything about it. The GOP has decided that the murder of children in church is a reasonable price to pay for the continued support of billionaire gun merchants and the NRA.

To stop, or even slightly slow the violence, we are going to have to elect different politicians.

Magdiel Sanchez, a 35-year-old Latino man, was sitting on his porch in Oklahoma City on Tuesday night as two law-enforcement officers approached his house. He got up and walked toward them, when, according to news reports and a statement, the officers noticed he was holding a metal pipe. They started giving him “verbal commands” to lie down, then one fired his Taser and the other shot him in the chest with his sidearm. Sanchez died. Officers later claimed not to have heard neighbors shouting that Sanchez was deaf and couldn’t hear their commands.

The police were there because allegedly Sanchez’s father had been in a hit-and-run (injuring property, not people, if the accusations are true). Sanchez carried the pipe, neighbors said, to ward off dogs. He was deaf and reportedly developmentally disabled. In a statement, the ACLU said, “Magdiel Sanchez was shot at his own home, without having committed any crime, and in front of neighbors who knew he was deaf trying to communicate to the police that what they were about to do was wrong.”

Sanchez is far from the first deaf or disabled person to be killed or brutalized by police. It happens almost every day. According to The Washington Post, police have shot 165 people in mental-health crisis in the first 263 days this year (and 715 total). When you add people like Sanchez and individuals with invisible, undiagnosed, or unrevealed disabilities, the numbers start to get much higher. In a white paper I co-wrote in 2016 for the Ruderman Family Foundation, I noted that disability-rights advocates routinely argue that a third to a half of all people killed by police are disabled. Most of those people, especially in cases where police clearly misused lethal force, turn out to also be marginalized by race, class, gender orientation, or other factors that intensify vulnerability.

Sanchez is actually the second high-profile killing of a disabled person just this week (and the fourth probable case, with Eric Alvarez, possibly in mental-health crisis, killed on a Los Angeles highway, and naval officer Nicholas Perkins killed outside his home in Washington after he would not put down a long gun). Georgia Tech campus police killed Scout Schultz, a trans and intersex activist who had been expressing suicidal thoughts. They had called 911 to report themselves as a person with a knife and possibly a gun. After police shot and killed Schultz, the officers found only a closed Leatherman multi-tool. The specifics of each case matter. Each victim’s life deserves to be mourned. Most cases are more like the Perkins situation than the Sanchez one. Still, when it comes to body count, this was a pretty typical week.

I first wrote about disability and policing for The Nation in 2013. I’m not sure anything has improved since then. The people who have been working on this the longest, people like the lawyer Talila Lewis and the organization HEARD and artist and activist Leroy Moore, remain unfunded, even as organizations pour money into trainings for cops. But police don’t need training to choose not to shoot folks like Sanchez. They just have to stop treating noncompliance as a justification for escalation.

Another story of police force and disability, thankfully not involving a fatality, made news this week. The abuse of Connor Leibel, a white, autistic teenager, perfectly demonstrates the ways that escalation in the face of noncompliance puts disabled people in danger every time they encounter the cops. In fact, what I call the cult of compliance puts everyone in danger, if not equally.

Leibel was walking down the sidewalk in an affluent part of Buckeye, Arizona. He first appears on the body cam video as he’s shaking a string in a mild rhythmic motion with his left hand. Officer David Grossman of the Buckeye police department, steps out of the car and approaches the boy, asking him what he’s doing. “I’m stimming,” he says. “I stim with a string.” Within a few minutes, Grossman has Leibel down on the ground, cuffed. “I’m OK, I’m OK,” the boy says to himself, but eventually starts to scream. Later, other officers would arrive, find Leibel’s caregiver nearby, and restore order. Leibel suffered bruises and abrasions. Grossman, reportedly a DUI recognition expert, has claimed in his report that he thought the boy was on drugs. Buckeye Police did not respond to requests for comment.

I took this video particularly personally. My son, a 10-year-old with Down syndrome, also likes to shake things as he stims. His hands are often wrapped around plastic “Mardi Gras” beads, shaking in a kind of circular motion. It’s mesmerizing to watch. He has a pattern that moves the beads from a spin to a drop straight down and then into a slight circle. It’s not typical behavior, but it’s quintessential to my son’s identity. It should not be criminalized.

I reached out to Julia Bascom, executive director of the Autistic Self Advocacy Network. Via e-mail, she told me that stimming is normal. “If you’ve ever tapped your fingers against a counter while you were waiting, congratulations, you’ve stimmed. Autistic people tend to stim more often and more intensely. Stimming helps us process the sensory input we’re gathering, stay calm and grounded in an overwhelming universe, and express joy, distress, or whatever we might be feeling.”

Bascom notes that stimming is often treated as aberrant or undesirable behavior by authority figures—not just police, but also teachers and parents. “That said, and this is important,” she continued, this case is not about lack of awareness regarding autism. “Regardless of why he was stimming, this young man should never have been approached at all. ‘Bouncing around’ isn’t a crime. Being autistic in public isn’t a crime. There was absolutely no justification for this young man to be stopped, and obviously no reason for him to have been restrained or slammed to the ground.”

Alex S. Vitale, author of The End of Policing, agrees. He told me that, beyond the issues of disability and policing, “This all starts as a self-directed search for drugs. And since drugs are conceived of [as] automatically dangerous and illegal, the police approach people as dangerous and a threat to be controlled. As soon as the young person said, ‘I’m fine,’ that should have been the end of it.” Both he and Bascom, as well as numerous other experts I consulted from the disability-rights and police-reform movements emphasized that this is not a matter of lacking training, but rather the criminalization of any behavior deemed abnormal or undesirable.

Back to Sanchez, we see similar patterns of police conduct, this time with horrible, lethal, consequences. Sara Nović‏, who identifies as Deaf and is an assistant professor of creative writing at Stockton University, told me via e-mail that the killing emerged from a “perfect storm of communication anxiety for many d/Deaf and hard-of-hearing people.” It’s hard to talk to strangers, especially when the stakes are high. It was also dark. She notes, “Even the most skilled deaf communicators/lipreaders struggle in the dark. It is only natural that Sanchez would try to get closer so he could see what was going on, especially because he’d had no involvement in the traffic incident they were investigating. He was sitting on his porch minding his own business; he’d done nothing wrong.” But he didn’t—couldn’t—comply with orders, so a police officer killed him.

o what do we do? When incidents like these happen, departments and some advocates often focus on two deeply troubling solutions: training and registries. Both are based on the idea that police just don’t recognize disability when they see it, or don’t know what to do if they recognize it. Instead, we need to reframe policing, decriminalize noncompliance, and remove police from as many situations as possible.

In abstract, training is a fine thing. Crisis Intervention Team (CIT) training was developed in the 1980s in Memphis and has now spread around the country. I’ve sat through many hours of CIT training in states such as Texas, Maryland, and Illinois. The quality of instruction varies, but the curriculum is constant: Hours spent describing disabilities, what it’s like to be disabled, and then some (actually pretty good) role-playing exercises. Many states have implemented developmental-disability specific training, including (as noted in The New York Times), autism programs. It’s good for police to know what a mental-health crisis is, that autistic people might not look you in the eye, and how to find resources.

At the same time, trainings send the message that the problem is behavior in cases related to disability, rather than core issues related to quick escalation. If a person with autism shouldn’t be brutalized for shaking a string, neither should a drug user. If a deaf person shouldn’t be shot for not hearing commands, neither should a person wearing ear buds. These trainings are also not free, and every dollar spent on policing could be spent elsewhere. A year ago, the Department of Health and Human Services gave Chicago a million dollars to address trauma in the communities. The city spent most of it on police training, not on the communities.

The second suggestion, registries of disabled people, is even more concerning. There have long been advocates for making lists of disabled people to give police more information, but people should not have to hand their names to the police to be guaranteed basic civil rights. Most recently, an app called Vitals has been making news. It allows police to read personal data off an chip that one can wear. “It’s the Mutant Registration Act,” said Rebecca Cokley, former executive director of the National Council on Disability, referring to a bill from the comic series X-Men that required individuals with super powers to lodge their identities with the government.

Instead of training police to grant people they recognize as disabled specific rights, victims like Leibel and Sanchez demonstrate the need for police to operate with a baseline of presumption of compliance. When significant threats emerge, as does tragically happen, officers will need to respond. But when Sanchez walked forward, surely the officers could have stepped back. When the autistic boy was shaking his string, the officer could have just decided not to cuff a child, even if he didn’t recognize the word “stimming.” There are so many ways to improve the situation without asking for specialized training.

At least four disabled people died at the hands of police this week. One previous case of unjustified police violence came to light. Except for the brief media attention of the Sanchez and Leibel cases, that’s a pretty normal week. It’s unlikely anyone will be held accountable, except possibly in the situation where Leibel, a white teenager in an affluent neighborhood, was brutalized. There, the combination of powerful video, a compelling victim, widespread coverage, and a good lawyer might help. In the other cases, the multiply marginalized status of the victims plus the lethality of the encounter will make accountability difficult, if not impossible. And then next week, alas, the same types of stories will play out again, and more people will die.

In the face of the constant terrors brought about by the misrule of President Donald Trump and his GOP enablers, how do we organize politically? Come up with a laundry list of laudable policies? Abandon identity politics (as if there are any politics that aren’t about some form of identity)? Micro-target the needs of specific communities? The diversity of the American left is where we find our strength, but it presents challenges to organizers and sloganeers alike.

As an advocate for disability rights, I’ve been seeking ways to link my core issues to those of other groups—people who prioritize reproductive justice, racial justice, decriminalization of narcotics, queer rights, antipoverty measures, and so much more. Each of us exists at specific intersections of needs and concerns. To win, we must find ways to unite our struggles without erasing our differences. One place they connect: the need to defend bodily autonomy.

“Bodily autonomy,” as an abstract philosophical principle, dates back at least to the ancient Greek philosophers. Over the centuries, legal scholars and political philosophers have thought hard about the relationship between rights and laws, the individual and the group, and the sovereign state and the autonomous individual. In American activist circles, bodily autonomy is most often invoked around the fight for reproductive rights. But what I haven’t seen is an effort to harness this principle in a way that binds our seemingly separate movements together.

Let’s start with the disability piece. I’m the father of a boy with Down syndrome. My concerns for him and for the extended disabled community include opposition to institutionalization, forced sterilization and other eugenic practices, involuntary surgery, mandatory drug regimes, denial of rights for disabled parents, protection for disabled children from violent caregivers and teachers, and lack of accommodations for non-typical bodies. In each case, these issues require a government that refrains from coercing disabled bodies and protects disabled bodies from private coercion. Bodily autonomy extends over these seemingly quite disparate issues.

Reproductive rights has long been the most obvious place where we must empower each individual to exercise sovereignty over their bodies. Time and again, “pro-life” Democrats demand to be included within the party. Despite Democratic National Committee Chair Tom Perez’s flirtation with that faction, our response should be clear. Everyone is entitled to their beliefs and to develop practices based on those beliefs, but the government may not regulate anyone’s access to full reproductive choice. A woman exercises sovereignty over her body and that’s not subject to debate, whether we are talking about abortion, birth control, or stopping sexual violence.

Reproductive rights and disability rights are often seen as being in tension, but they don’t have to be. As recently argued by attorney and autistic activist Shain Neumeier, history shows us that allowing the government to exercise control over reproduction always goes badly for disabled people. This is most famously visible in the history of eugenic sterilization of disabled men and women in the United States, but continues in more subtle battles about whether disabled people should be allowed to have sex at all. Disability rights and reproductive rights find common ground over resisting governmental intrusion into individual reproductive decisions. The abstract principle of bodily autonomy unites rather than fragments.

Bodily autonomy can extend into other rights campaigns, protecting, for example, Americans who identify as LGBTQ. The principle supports the basic right of transgender people to access surgery, hormones, and other medical care without discrimination. Moreover, while we’ve largely decriminalized non-heterosexual sexual practice, far-right theocrats always loom, looking to find new ways to legally punish homosexuality. Vice President Mike Pence allegedly supported conversion therapy when was he running for Congress in 2000 (Pence has denied this). Bodily autonomy gives us yet another way to articulate our opposition to this barbaric practice.

In fact, the rights of children emerge as particularly important, beyond the troubling issue of conversion therapy. Female genital mutilation, for example, runs against the right to control one’s own body, as does pain-based corporal punishment in all contexts.

Concerned about mass incarceration and the war on drugs? The principle works here too. You have the right to put substances in your body so long as you do so in a way that does not endanger others. We’re also going to need to decriminalize sex work as part of our respect for bodily autonomy. To all the libertarians disappointed in Attorney General Jeff Sessions, welcome back to the Democratic Party.

Black lives do matter. The basic human-rights and racial-justice framing remains paramount. But if we organize around the principle that a body is sovereign to itself, we are required to push back at stop-and-frisk and to limit the use of lethal force by cops. Black bodies deserve autonomy equal to all others’.

When we prioritize rights over one’s body, we have to defend universal access to healthy food, safe housing, and clean air and water. We fight against sexual assault and torture, and defend the rights of prisoners (including disabled prisoners, an issue of special concern to me).

There’s no use in pretending that coalition building is easy. No principle, including bodily autonomy, should be adhered to absolutely, as we’re going to need compassion and flexibility in order to coalesce. We live entangled lives filled with conflicting rights and choices. At the far limits where we argue extreme cases, basic principles often break down (think free speech or pacifism, for example). But a commitment to bodily autonomy could emerge as a core tenet of today’s left-wing movements.

In this difficult time, the forces afraid of change will try to divide us. If each activist group is fixated only on one slice of policy, then we can be pushed to compete over the scraps of reform. That’s not a recipe for electoral victory, let alone for justice.

Principles reveal the places where seemingly divergent campaigns overlap. We can join together around the fight for bodily autonomy and support specific policy initiatives that might otherwise seem outside our area of activism. It’s vital for a person chiefly focused on disability rights to labor for decriminalization of narcotics. Those who want to legalize marijuana should also join the struggle for reproductive freedom. These specific agendas are, and always have been, part of the same battle.

A few weeks ago, two stories crossed paths. In MIT Technology Review, we learned that, for the first time in the United States, researchers had used the gene-editing technique known as CRISPR to modify a human embryo. Several days later, CBS News released a report that through nearly universal prenatal testing followed by selective abortion, Iceland has virtually eliminated Down syndrome.  

The CRISPR story shows that we are on the cusp of an enormous leap of capability when it comes to shaping the genetic potential of our offspring. Meanwhile, I’ve contended that the past decades of testing, genetic consultation, and decision-making about abortion related to prenatal diagnoses of Down syndrome have served as a kind of test run for the future of human procreation. Can we make informed choices? Can we understand that probability doesn’t equate to outcome when we’re talking genetic makeup? Can we use science to build a more just, happier humanity?

If what’s happening in Iceland is, indeed, a test run, it’s a test we’re failing. Prospective parents are making decisions based on fear and stigma, helped along by the medical profession. As our tools to make such decisions get even more powerful, we have to shift how we talk about genetic diversity.

Cards on the table: I’m the father of a boy with Down syndrome. I am pro-choice, anti-eugenics, and pro-information. In preparation for the age of CRISPR, we’ll need to develop new ways to talk about what’s normal and what’s good, because we face decisions that are nearly unprecedented in human history. I say nearly, because with Down syndrome prenatal testing, we have a body of evidence for what happens when we expand our power to determine who gets born without building systems to ensure that we make informed decisions.

CRISPR (short for Clustered Regularly Interspaced Short Palindromic Repeats) is wickedly powerful. It makes reasonably precise changes to a targeted cell’s DNA by means of a technique adapted from naturally occurring DNA-editing defense mechanisms in bacteria. Chinese scientists first modified human embryos two years ago. The researchers in Oregon used it to change the DNA of a large number of one-celled embryos with the goal of demonstrating both that the technique could be used at scale and that the genes causing disease could be effectively identified and eliminated.

Each new development, as previously covered in The Nation, sparks rounds of debates between those optimistic about fighting diseases and those concerned about implications. For example, sickle-cell patients hope for a cure, while the intelligence community worries that terror groups could weaponize CRISPR. Earlier this year, the National Academy of Sciences, Engineering, and Medicine agreed that genome editing could be used to modify embryos, but “should be allowed only for treating or preventing diseases or disabilities at this time.” Ethicists demand more robust engagement of the questions we are about to face, as techniques move from the research to the practical stage. Still, most of the debates remain locked in abstract thought experiments.

Prenatal testing followed by selective abortion is not genetic engineering. It is, however, a space in which we have real-world data about how people make choices about procreation when granted additional information about the genetic makeup of their potential offspring. It turns out, perhaps unsurprisingly, that fear, misinformation, and bias shape our decision-making.

Take Iceland. In the small island country, all pregnant women are informed of the availability of genetic screening. Between 80 and 85 percent take the test, and nearly 100 percent of all positive tests for Down syndrome result in termination. What are we to make of such an outcome? Each person hearing the words “Down syndrome” applied to their fetus does so as a consumer of a culture that, broadly speaking, denigrates life with developmental disabilities. Geneticist Kari Stefansson characterized the counseling as “heavy-handed” in favor of termination, and so that’s where the momentum is. If Icelandic doctors, nurses, and genetic counselors don’t find ways to mitigate that, the disability largely disappears.

This is typically the moment in essays about prenatal testing in which I assure you that my son is happy. He is. He’s 10. He likes Hamilton and Harry Potter, and is a wonderfully inventive communicator. We are privileged to live in a good community with good schools, and when we encountered obstacles to his long-term supports in one state, we could move. We’ve never denied that there are challenges, but the greatest ones are constructed by an ableist society, not inherent to his disability. Society can be changed. His genes don’t need to be.

But the decision whether or not to terminate is not about my son’s outcomes, but accepting two general principles. First, with good social supports, there’s no reason that people with Down syndrome can’t lead good lives included within communities. For a doctor to assert the probability that Down syndrome leads to despair is simply not true. Second, in general, probabilities never guarantee outcomes. Our genes encode an array of probabilities into our bodies.

In recent years, rather than focusing on the abortion itself (or decision to carry to term), North American activists in Down-syndrome advocacy communities have tried to look at the communication in the period between the positive test and the decision about whether or not to terminate. The goal is to provide materials to better inform the tens of thousands of doctors, nurses, and counselors who encounter women in the context of prenatal testing. These efforts have coalesced around the nonpartisan rubric: pro-information.

I e-mailed Stephanie Meredith, Lettercase program director at the University of Kentucky’s Human Development Institute, where she has helped develop resources for distribution to people who talk to women about prenatal testing. She told me that “many genetic counselors and obstetricians offer compassionate, sensitive, and balanced support following prenatal testing,” but “some clinicians may provide insufficient, outdated, or unintentionally biased counseling.” Outcomes for people with Down syndrome and related conditions have changed remarkably over the past 50 years. But too many people involved in prenatal care lack up-to-date information, and there’s no easy way for institutes like Meredith’s to reach every clinician in the country. Meanwhile, companies selling prenatal tests want to increase their market share. Meredith said that clinicians “are constantly inundated by marketing from testing labs with very little educational support regarding the conditions included in the test.”

I’ve spent years talking to parents who received prenatal tests (we did not). Some were told flatly untrue statements about Down syndrome, breaking up marriages and leaving families overwhelmed by stress. In fact, there’s evidence that families like mine divorce at lower rates than other families. Others were presented with outdated statistics about early death as a likely outcome. It’s not (although the premature death rates of African Americans with the condition remain far too high). It’s true that people with Down syndrome once tended to die young and learn little, but that’s a fact linked to the era of mass institutionalization. Inclusion has radically changed the probabilities. My son has as good a chance to live as long, happy, productive life as anyone of our socioeconomic status. But expectant parents hearing the words “Down syndrome” for the first time will only know this if they’re told.

Unfortunately, politics is making it hard to hold the pro-information coalition together, thanks to American anti-choice efforts. Around the country, the GOP is proposing and passing laws banning abortion if a woman tells her doctor she’s doing it because of a prenatal diagnosis. We can’t be pro-information if we criminalize such conversations. Such a bill is pending right now in Ohio. 

What does all this have to do with CRISPR? Right now, we’re still in a liminal state when it comes to predicting genetic outcomes for fetuses. Our tools, from amniocentesis (developed in the 1950s and ’60s) to contemporary screenings that locate fetal blood cells in the mother’s bloodstream, are reactive and postconception. Soon, they’ll shift to preconception and proactive. What will the tens of thousands of clinicians tell would-be parents as they get flooded with messaging from companies eager to sell their high-tech CRISPR product lines?

Preventing this potentially dystopian future where altered genes separates the haves from the have-nots starts by shifting discourse. A pro-information approach demands that everyone involved in genetic counseling have access to the best data and presents it in a value-neutral way. We must build systems now that grow as our tools evolve. If we do not, genetic diversity will gradually become code for poverty, and new stigmas will run all the way to the DNA.

Robert Ethan Saylor. (Courtesy of TheAlexJonesChannel)

This past January, in Frederick, Maryland, a local man named Robert Ethan Saylor went to see Zero Dark Thirty. Ethan, who had Down Syndrome, went with his aide; when the movie ended, he decided he wanted to see the movie again and stayed in the theater. The theater manager demanded that he pay, then called security when he would not. Three local sheriff’s deputies, off duty and moonlighting as mall security, tried to forcibly remove him. They handcuffed him and threw him to the ground.

What happened next is a little unclear. Did they knee him in the back? Did they put pressure on his throat? They definitely held him down. A witness heard him cry out, “It hurt. Call my mom.” Indeed, his mom was on the way to try to defuse the situation. But a few minutes later, Ethan was dead. A medical examiner determined that he died of asphyxiation and identified bruises and abrasions on his body and a fracture in the cartilage of his throat. The death was ruled a homicide.

The local sheriff took charge of investigating, but filed no charges. Now a federal investigation is underway, which the sheriff is confident will clear his officers. “This is simply an unfortunate situation where this man had a medical emergency while being escorted out of the theater,” he told The Washington Post in July. The deputies have since returned to work.

I, too, have a son with Down Syndrome. His name is Nico. He often ignores verbal directions, or shouts and resists guidance—but he’s only 6. He’s not supposed to listen to his parents or teachers all the time. He is a fun, energetic and interesting little boy, driven by curiosity and friendship, and growing increasingly confident in his ability to interact with the world. But it is not always clear to what extent he understands the situations in which he finds himself. When we want to communicate with him, we use spoken words, images, sign language, an iPad app, touch, gesture and, most of all, patience—the very quality most lacking in tense situations. I worry that someday a police officer might tell Nico to do something and that he might ignore it. I worry that the officer will reach for a Taser, or pepper spray or truncheon. I worry about Nico because I know there is a larger pattern of police violence against people with disabilities. In recent years, police have attacked dozens of people with disabilities, such as autism, schizophrenia and bipolar disorder. People with epilepsy are at severe risk of death when tased (in general, 541 people have been killed by Tasers in America since 2001). Deaf people have been tased for refusing to respond to verbal commands. In all cases, these disabled people ignored the commands of police and suffered for it. In each case, it’s likely that the victim of police violence did not fully comprehend the commands or the consequences of their actions.

Here are just two examples that illustrate the bigger problem. On the night of December 18 in San Diego, another man with Down Syndrome Antonio Martinez, was walking to work at his family’s bakery. It was a cold night, so he pulled on his hoodie. Two San Diego County Sheriff’s deputies were in the area looking for a domestic violence suspect and decided Martinez’s behavior was suspicious. They called to him to stop. He ignored them, so a deputy pepper-sprayed him, hit him with his baton, knocked him to the ground, handcuffed him and put him in the car. Sheriff’s spokesperson Jan Caldwell said, “It was a dark night. There was a non-compliant person that was hiding his face and hiding his hands. It’s clear in the light of day that this man had a disability, but the deputy at the time didn’t know that.”

In Canton, Georgia, in 2008, police got a report that D.J. Moran had drawn a knife in a bar. Multiple officers surrounded him and knocked him to the ground, then tased him. Moran has autism—his father claims the officers were aware of this—and is extremely sensitive to touch. Police officials released said Moran “failed to cooperate by struggling and resisting, after being instructed to place his hands behind his back.” Moran admitted to squirming, but explained. “I was terrified. I was terrified.”

Ethan Saylor’s death sparked outrage from disability advocates, many of whom have sponsored calls for additional investigations. But it should not be seen as an aberration, nor is it an issue that matters only to family members or loved ones of people with disabilities. Even if you don’t know anyone with a disability, the lessons here are grim. Police expect instant compliance to their commands. If they do not receive it, they resort to a physical confrontation—often with “non-lethal” weapons such as Tasers and pepper spray. Police brutality crosses the contested lines of race, class, and gender. We tend to read these police shootings or other incidents through our biases and let the facts confirm only what we want to find. But there is a certain kind of clarity when a deaf woman is tased for not responding to verbal commands or a man with Down Syndrome is killed for not getting out of a chair in a movie theater.

Look back at the Sherriff’s department statement on the Martinez incident. The spokesperson implied that if Martinez had not had Down Syndrome, the deputies would have been correct to assault him. And why not, since accountability for such actions is erratic, at best? As the Saylor’s death shows, even when someone dies, the police can escape without consequence.

So we can call for justice for Ethan Saylor, promote the online petitions and work with our local police departments to improve police training on disabilities. We must also push back more broadly against the casual use of force by police. We must be skeptical of police explanations and demand accountability in all cases. More generally, we must demand that police try to defuse tense situations without resorting to violence unless imminent danger looms.

Maybe training and better awareness of the complexities of interacting with people with disabilities will help. But in the meantime, all I can do is help my son learn this abhorrent truth: he lives in a society in which the police can inflict arbitrary violence on any “non-compliant” individual. I have to teach him to obey everything any police officer says, instantly, so that he isn’t pepper sprayed, beaten, tased or killed.

And then I just have to hope that he listens.