For most people living through the latest pandemic, the urgent questions are often “when questions.” When indoor establishments should lift capacity limits. When mask requirements should be dropped. When family, friends, and strangers should reconnect across household lines. When.
For millions of other people, the question is more like whether. Whether there ever will be an opening. Whether they will be welcome participants. Whether the reengineered social relationships for post-pandemic life will include them. Because when the physical world is utterly open, the social world can be closed to these people. People like me.
Long before the pandemic, my disability became visible and, as it did, the social world became more closed. Although my life remained vibrant, no achievement in work or family could eliminate the social barriers associated with being tagged strange. For us, parts of reopening will not be very different from lockdown—in fact, parts of social life will be worse in the open. Unless something else changes.
When the first symptom surfaced, I was 8 and ungrateful. During a family trip to the U.K., I received the gloom-inducing diktat to write thank-you notes for presents. I had absolutely no interest in that. Presents, fine. Thank-you notes, not fine. Are these supposed to be gifts or homework assignments? I barely did actual homework.
Well, this time I was incapable of writing the notes. Having sensed no real limits on life until that moment, I found myself suddenly unable to move my right hand in the familiar ways necessary to transfer thoughts from mind to pen and page. I couldn’t sustain the necessary postures and angles to handwrite legibly. Everything else seemed normal. Only the handwriting was gone.
But there was more to this localized expression of physical limitation—much more in terms of what was happening within my brain, what would happen to other parts of me, and, maybe most important, how I would deal with and be dealt with by the social world.
Ultimately the neurologists back home diagnosed me with dystonia, which is a cluster of neuromuscular conditions that affect movement. Parkinson’s disease sometimes includes one form of dystonia, “the yips” among athletes is another, musician’s dystonia yet another. My movement looks something like those, including involuntary lurches, tremors, and twists that impede walking as well as fine motor skills. But my brand is distinctive. I have DYT-1 dystonia, which refers to the deletion of just a few nucleotide base pairs out of billions in the human genome.
The mutation was first identified in the 1990s, and several treatments emerged before and after—pills, injections, brain implants. But there is no “cure.” Perhaps fewer than 100,000 people are DYT-1-positive in the U.S., and fewer than 50 percent of us are symptomatic. Those gaps between genes, symptoms, and cures should be revealing: Targeting human genes is not the same as solving human problems.
Yet from one angle the problem is “all in my head.” Functionally speaking, my brain sends too many messages to the rest of my body—with neurons firing repeatedly for no good reason, as if I were in a perpetually imagined combat zone. Indeed my body is in a low-grade war with itself, in that the muscles within my control strive to stabilize those that aren’t, just to perform simple manual tasks. I typed this sentence, for example, by using my right hand to grip and guide my left hand around the keyboard.
Counterintuitively, the movements by themselves do not hurt, and often I am at peace in every meaningful way. When I sleep, the movement vanishes. And although I must adapt when the patterns of involuntary movement change periodically, the physical challenges don’t invariably increase. Pain is a familiar companion just because I work my body relentlessly without trying, exerting about a soccer game’s worth of energy at a desk job. But I’m not shut-in. I still take short bike rides, for instance, and wander along riverbanks with my son.
Equally important, my work as a professor and lawyer revolves around ideas and communication, the technologies for which have never been more equalizing for those with access. These days I issue verbal orders to my devices nearly as frequently as I punch keys, and movement doesn’t interfere with pondering. The upshot is that I think about dystonia much less than most people expect. Most of the time I’m thinking about Supreme Court cases, or data collection, or whether I’ll ever get to a Joan Jett concert. Or whatever.
Surprising, too, is that my situation makes stay-at-home orders tolerable, maybe even a relief. Compliance with those rules reduced both mobility and visibility. So in my line of work, lockdown meant researching, writing, and teaching from home without subway commutes.
Videoconferencing offered me more power over the physical environment and visual frame for social interaction. That helped me direct audiences toward what I intended to communicate, rather than the movements and postures that often distract them. Our son was trying to learn online from home, which was complicated, but there are worse outcomes than attending a virtual faculty meeting with the ambient guitar sounds of an 11-year-old practicing “Smells Like Teen Spirit.”
Life in public isn’t like that. Whatever my own priorities or advantages, many street-level onlookers see nothing but disability. Lockdown meant avoiding the stares, giggles, and unsettled sidelong glances of strangers who get hooked on unfamiliar movement. Shelter-in-place doesn’t look as bad when the alternative includes an unsolicited amateur videographer narrating your mobility impairment while you walk down West 4th Street. That kind of exposure disappears when life moves online. In the past year, I taught 100 students online who never saw me walk.
Societally we should hardly prefer lockdowns, which slammed most families economically while instigating a widespread “social recession.” Nor can my experiences speak to the tremendous range of affected populations. For one thing, online life isn’t accessible to everyone, just as a technical matter. Even if the number of digital affinity groups is unlimited in theory, the rigid interfaces built into many apps will shut out people with nonstandard sensory, motor, and cognitive traits. Automated screen readers can’t function if websites don’t include readable content.
At minimum we should know that reopening will have unequal effects across populations, if reopening means returning to pre-pandemic normal. Lockdown life is partly open and normal life is partly closed, depending on who you are. Bringing back normal will bring back all the burdens of exposure. Indeed every unwanted gaze in pre-pandemic life was a sign of larger social challenges—challenges that easily can outlive contagion.
As to those social challenges, self-help is likely to become increasingly futile for people with disabilities. Think about adaptation and concealment, which were my leading strategies during childhood. I reshaped my behavior against felt constraints, both to handle physical impediments and to escape detection by peers. Exposure, I suspected, would cause my social circles to stop growing. Or contract. I wasn’t chasing popularity, really; when I was a kid, I thought horror-film zombies represented mainstream culture. But I was skittishly anticipating other people’s “atavistic response to any aberrant motion,” as Michael J. Fox describes it.
When it became difficult to write and throw with my right hand, I retrained myself to be left-handed. Later I had to switch back. My walk was impaired from about age 12 and yet, weirdly and for several years, I had no trouble running, walking slowly, or walking backward. So I did more of those things, not only as a tennis player and cross-country runner but in public school hallways. That was noticeable, and suburban tweens are not known for tolerance, but often I could sell it as comedic or eccentric.
Determined to pass for normal, I became obsessed with sightlines. Constantly I scanned the environment, scoping out who could see where, then adjusted my position accordingly. I’d stop occasionally, lag behind slightly, or veer momentarily, then sidestep back to maintain visual obstructions between my group and my stray movements. Travel from one classroom to another was a cognitively taxing, emotionally charged obstacle course, with no chance of success beyond partial obscurity.
Hiding was a strategy with no future. The surrounding world is too observant and my movements would become too prominent to conceal. With nothing like today’s surveillance technologies, the unorthodox parts of me were pulled into the open. That experience is becoming ever more typical, lockdown or not. Unchosen exposure of atypical traits will only increase as our digital dossiers expand. With onlookers engaged, sometimes acting on hapless mixtures of caring and carelessness, the challenges of the social world will tend to drift further beyond the control of any one of us.
After grade school teachers discovered that I was having difficulty writing, they sent me to a special education classroom for remedial reading. A couple of years later, I received special ed instruction in a coat closet. I realize now that I’m supposed to be insulted by that, and maybe I am, but the situation was not as bad as it looked. First of all, it was a very large closet. And this time the training was useful: typing class with a 1:1 student-teacher ratio, led by a humane, attentive, and determined instructor. Nearly ideal.
After miscategorization and separation, the school tried klieg-light level publicity. I was asked to hold a forum on my neurological condition in my sixth grade classroom, complete with a Q&A session that covered treatment options. Our teacher was well-meaning, plus it was the 1980s and the school lacked a template for this, let alone an integrated curriculum on diversity and inclusion. But abrupt, staged conversations about disability tend to backfire. Personally, I tried to get back undercover. When we started middle school that autumn, a kind classmate asked me an innocent follow-up question about drug treatments. I laughed off her question in front of our friends, as if I didn’t know what she was talking about. She was stunned.
However unsuccessful the attempt at normalization, my school was wiser than I knew. Those teachers were absolutely right about which problems to target, because the enduring challenges, for me and for many others, are social as much as physical.
The way people respond to what they view as disability can be hermetically isolating. By definition, loneliness cannot be overcome on your own. It is true that lockdowns have extremely negative consequences when officials ignore people who move or think in nonstandard ways. Consider the impact of school closures on the 7 million students who have special education plans. For many of them, formal education simply stopped. But also true is that the world can be thrown open physically without being accessible socially. That type of closure piles on top of any other disadvantage.
Maybe the experience is now familiar to ordinary people who locked down to reduce viral spread. Often the physical distance was accompanied by feelings of isolation and stress or stagnation, despite all of our devices and “social” media. The interpersonal distances were grinding, and deepened by the doomscrolling. The thousandth Zoom meeting could not bridge the gap. Life was cut in half.
Now imagine that experience lasting a lifetime. You would adapt, almost surely if only partly, without avoiding real loss.
Undoubtedly, many dimensions of life can go well despite physical limits. Fortune gifted me adequate skill, technology, and other resources to pursue education and employment. My unearned luck grew further when speech-recognition software improved by the 2000s, following advances in machine learning. I went on to join a presidential campaign; Harvard Law School, where I learned from Laurence Tribe and graduated at the top of my class; a lawsuit against the tobacco industry; the chambers of John Paul Stevens when the notion of a disabled Supreme Court law clerk was nearly unheard of; and professorships at the University of Chicago and NYU Law.
On one theory, I am not “disabled” in any of those respects. Perhaps in no important respect. If we understand disability as a kind of disadvantage, rather than arbitrarily spotlighted personal traits, where is it?
If it’s there, it’s relational. There is a ceiling on how hospitable existing systems will be to those coded strange. To this day I face people who think it best to ridicule, pity, save, fix, grab, minimize, or ignore me. Occasionally a server asks my spouse, “What would he like to order?” Occasionally a doctor thinks my only medical needs involve dystonia. Sometimes a professor assumes I’m a student. Sometimes a student decides I’m pretentious rather than professorial. (That one might be true.)
Treatment like that is bearable when you have other advantages. Many people don’t. And the advantages themselves are diminished if everyday social static produces isolation. My own professional efforts would not have mattered much had I remained unwilling to interact with others on open terms despite the risks and, crucially, had others been unwilling to interact with me as an equal. Comprehensive well-being extends beyond health care, economic security, and physical safety. It has to. And the extended foundations are interactive.
As disability theorist Adrienne Asch understood, progress for people with disabilities requires initiatives that complement traditional anti-discrimination laws. Those laws typically emphasize commercial transactions and basic access rights, which are necessary. But neither assures humane relationships. We could eliminate entirely the (shockingly large) employment disparities left untouched by the Americans With Disabilities Act, yet still fail to generate the social structures that enable vital human interaction. And whatever the legal and policy details, we should know already what progress involves.
First, early relationships often have outsize effects. In addition to a social worker mother, a nonconformist professor father, and a tech-savvy brother, I had a base of loyal friends by my teens. Those relationships were grounded in life beyond disability, and I got my first post-college job when a friend was hired first and he left the impression that we were a package deal. Then there is my son, who grew up with my movements as a background fact. Nobody on the planet is more comfortable around me, probably including me. Tight relationships can be easier to form before mainstream categorizations of “disabled” take hold.
Second, and especially for those without early advantages, people need open channels for making new contacts. That can mean support for communities of similarities; consider the lasting strength of Deaf culture, which centers on a visual language and not a sense of disability. It also can mean encounters with others who have exceptional capacities for respect and love. I struggled to add friendships in adulthood and yet, without a plan or concealment, I met the compassionate person I married. A visual artist who was pausing in the Midwest between Mexico and New York, her aesthetic sensibility made room for the offbeat. Some people aren’t overly concerned that atypical partners will be fragile, dependent, or humorless. We might or might not be any of those.
Third and more controversially, some inward-looking work for persons with disabilities might be worthwhile. This might seem like an unfair request to a disadvantaged population. Burdensome self-reexamination to improve sociality certainly isn’t what’s meant by the disability rights message, “nothing about us without us,” and sacrifices of identity should not be the price of acceptance from nondisabled people. Even so, relationships are two-sided. It took introspection for me to be at peace with my limits, to understand that I don’t need to get “fixed” physically to help others professionally. It’s true that I don’t often introduce the topic of dystonia, on the off chance that my disability isn’t the most interesting thing about me, to borrow the phrase. And I don’t think it’s my job to make other people feel comfortable with me. I’m busy.
But I have learned that opening remarks about disability from me can facilitate working relationships. When I started to explain dystonia to one colleague, within a minute she told me that she could “feel the tension leaving [her] body.” Fielding questions is even easier. I am comfortable, and hopefully comforting, when people ask about disability. Not everyone responds to questions this way, and in my 20s sometimes I reacted with a here-we-go-again attitude. For many years, however, I’ve appreciated the opportunity to explain, realizing that a few words can have large calming effects. Productive conversations about disability are too often inhibited by anxiety and outdated conventions about asking and telling—a problem that Lior Strahilevitz and I have explored. Curiosity isn’t discrimination, and people shouldn’t be obsessed with litigation risks whenever someone has a genuine question. “May ask, will tell” can be the best policy.
Finally, each of us might find relief in honest, random, fleeting interchanges that convey care and respect. Valuing these interactions highly is, I confess, an adaptation to a defective status quo. We are entitled to those experiences. But self-respect is compatible with thankfulness. And I am thankful. To the judge who said of my movement, “You don’t really notice it after a while.” To the co-clerk who figured out how to carry my tray without damaging my pride. To the café server who treated me like any other loitering regular. To the airport worker who, after my shot at the garbage can from 6 feet rimmed out, told me wryly, “You’re never going to make it in the NBA.” To the subway traveler who declared that my movements were graceful and inspiring. (She was high.)
These people elevated my life at unexpected moments—sometimes by considering more than what makes me strange, sometimes by targeting that part of me. To me they were gifts. And perhaps this writing can count as one note of thanks, long overdue, to all of them.
Out of necessity more than bravery, I became more open. I didn’t choose exposure initially, and I’m not sure how much to regret my childhood evasions. Hiding from exclusion can be ethically complex, and the lockdown experience of control over online frames has its attractions. But tinkering with the “optics” of disability is a surface-level adaptation. Instead greater openness about disability seems like the right way, maybe the only way, to live well in a body and a world that is not fully within my control. After all, I can’t really stop others from coding people like me as disabled first, everything else second, at least to start. And although it might not be my responsibility to comfort others, often a modest effort at outreach on my part smooths the social situation for others.
That last observation runs both ways, though. People with disabilities constantly adapt to surrounding environments, physical and social, during and in between pandemics; maybe everyone else who constructed those environments should take a turn at opening channels of interaction. A modest effort at fleeting shows of respect, if not more lasting interchanges, is a fair ask given the fluidity of our circumstances. Because for the most able among us—perhaps for you—the world is reopening, reconnecting, and maybe reformatting. It’s overdue and it’s glorious, “like a flower blooming in time-lapse photography,” as Adam Gopnik writes. Most people might now “return to normal life before the pandemic,” in the comforting words of the CDC director.
Yet pre-pandemic life was too closed for some. For some, there is no glorious normal life to want back, not exactly. Opening, not reopening, is the aspiration. And so an urgent question should be how many people will be left out of renewed social circles—as millions were, for countless years, before anyone ever heard of COVID-19. That might raise questions for you, then. Questions like whether you will let outsiders in, if they want in. Whether you will find value in the extraordinary and the strange as you rebuild normal life. Whether you will remember how isolating life in lockdown could be for anyone. Whether you will be open. Whether you can be.
Whether you are able.
Future Tense is a partnership of Slate, New America, and Arizona State University that examines emerging technologies, public policy, and society.