10.11/The Interior Life/The Private Life

The Six-Inch Curb: Disability and Accessibility, 1989–2001

The Law and the Curb

On July 26, 1990, President George H. W. Bush had signed that statute, the Americans with Disabilities Act, on the South Lawn of the White House, extending to disabled Americans the enforceable protections earlier civil rights statutes had extended along other lines.¹ In New York City that same year, of the subway system’s 469 stations, fewer than a tenth had a ramp or an elevator of any kind.² The reporters who covered the President’s signature that week filed their stories after taking an elevator to a newsroom on an upper floor, or a cab to the ceremony’s coverage meeting, or a car service home; the six-inch concrete curb the new law addressed at every uncut corner in the city was not an obstacle any of them had needed to solve to do the job.

What the law changed on the ground, in the two years between the signing and the first enforcement deadline, was less the curb itself than who could be held to account for leaving it in place. Title I’s employment provisions bound employers of twenty-five or more workers starting July 26, 1992, and employers of fifteen or more from 1994. Title III bound every “place of public accommodation” — restaurants, theaters, retail stores, doctors’ offices — to remove barriers wherever doing so was readily achievable, and to build new construction accessible from the ground up. Title II bound state and local governments, the transit authority among them, to a stricter “program access” standard. None of the three titles required a curb cut or a station elevator to appear by a fixed date; each required a plan, a good-faith showing, and a court that could be asked to judge whether the showing was good enough. The six-inch curb was, after 1990, illegal to leave in place and entirely legal to leave unrepaired for years at a time. The Equal Employment Opportunity Commission opened its doors to Title I complaints on the same July 1992 date the provision took effect, and its own published guidance held from the start that HIV infection, symptomatic or not, counted among the conditions the statute covered — a position the courts left formally unsettled for the next six years.

The Armature Before the Act

New York City did not arrive at 1990 with nothing. Section 504 of the Rehabilitation Act of 1973 had barred disability discrimination by any recipient of federal money, though its regulations sat unsigned for four years until HEW Secretary Joseph Califano, under pressure from a wave of sit-ins in which the city’s own Disabled In Action played a central part, signed them on April 28, 1977.³ The city had created a Mayor’s Office for the Handicapped by executive order in 1973, and the Willowbrook Consent Decree, signed in 1975, had forced the closing of the Staten Island institution whose conditions had become a national scandal — the last residents left the site in 1987. Most concretely for the built environment, New York City Local Law 58 of 1987 had already begun rewriting the Building Code to require accessible routes, ramps, and adaptable units in new construction — a city-level requirement that predated the federal statute by three years.⁴

The subway was the era’s most visible failure of this earlier armature, and the ADA inherited rather than solved it. A 1984 settlement with the Eastern Paralyzed Veterans Association, reached under Governor Mario Cuomo, had committed the Transit Authority to make 54 “key stations” accessible and to fit two-thirds of the bus fleet with wheelchair lifts; by 1991 only ten of the 54 stations had elevators, though the bus program had gone further, and disabled ridership on buses climbed from roughly 11,000 trips in 1986 to about 120,000 in 1991.⁵ Mayor Edward Koch had told the Times in 1984 that spending “millions for elevators to satisfy a principle of station accessibility for the handicapped,” while providing riders no faster or more reliable service, was “very poor public policy,” and had pressed paratransit as the cheaper answer instead of the retrofit.⁶ The ADA folded the same 54 stations into a federally mandated key-station plan, filed with the Federal Transit Administration in 1992, with full compliance pushed decades into the future and an exemption written in for “historic” rapid-transit systems that a system built at the turn of the twentieth century could invoke almost everywhere. By 2000, somewhere between thirty and forty of the city’s stations met the federal standard, concentrated in the newer outer-borough lines and in a handful of high-traffic Midtown hubs; elevators, where they existed, broke down often enough that “elevator not functioning” accounted for roughly seven in ten of the system’s accessibility complaints.

The loophole was written into the statute’s own language rather than into anyone’s neglect. A station’s obligation to add an elevator was triggered only by “substantial rehabilitation” of the station itself, so a line that deferred any large-scale rebuilding deferred full accessibility along with it; a station such as Middletown Road in the Bronx stayed outside the retrofit obligation for as long as no larger renovation forced the question.⁶ The Transit Authority created an ADA Compliance Coordination Committee in June 1992 to track the agency’s own progress against the key-station plan, an internal accounting exercise that produced reports on a schedule no rider could plan a commute around.

The Rolling Quads and the Six-Inch Drop

The curb cut’s political genealogy ran through Berkeley, California, and through a New York organization founded the same year the movement’s national profile began to rise. Ed Roberts, who had contracted polio at fourteen and used a respirator, enrolled at the University of California, Berkeley, in 1962 — housed at first in a wing of Cowell Hospital because no dormitory could accommodate his iron lung — and by 1967 he and a small cohort of fellow quadriplegic students, calling themselves the Rolling Quads, had built a campus community that pressed the city council for physical change. In 1971 and 1972 the first curb cuts in the United States were poured at the corner of Bancroft Way and Telegraph Avenue; Roberts and his allies went on to found the Center for Independent Living in 1972, the first organization of its kind in the country, with Roberts as its executive director from 1974.⁷

New York’s counterpart was Disabled In Action, founded in 1970 at Long Island University in Brooklyn by Judith Heumann and a small group of fellow activists who had met at Camp Jened in the Catskills, after Heumann sued the city Board of Education over its refusal to license her to teach from a wheelchair. DIA’s first major demonstration, a 1972 sit-in on Madison Avenue protesting President Nixon’s veto of the Rehabilitation Act, stopped East Side traffic for the length of the afternoon.⁸ Through the 1970s and 1980s the organization picketed the telethons, sat in at Transit Authority headquarters, and pressed the city, alongside other disability organizations, toward the curb-ramp requirements Local Law 58 eventually wrote into the Building Code; when the Department of Transportation’s installation program still lagged years later, DIA staged a demonstration in 1992 aimed specifically at the slow pace of ramp construction, and pressed access claims against prominent public accommodations, the Empire State Building’s observation deck among them.

The pace and the geography of the ramps that followed were uneven across the five boroughs for the length of the period. Midtown south of 59th Street and the rebuilt blocks of the Financial District, remade in the 1980s real-estate boom, were largely cut at every corner by 1989; the Upper East Side, with its older limestone curbs, was cut at its institutional blocks — hospitals, museums — and patchy at its residential ones; the Upper West Side lagged further, its brownstone blocks often uncut until well past the middle of the 1990s; and East Harlem, the South Bronx, central Brooklyn, and most of Queens waited for systematic installation into the final years of the decade and beyond.⁹ For the person navigating a wheelchair through any of it, the corner without a cut was not an inconvenience measured in seconds. A route from a Hell’s Kitchen apartment to a Murray Hill office that took an able-bodied colleague twenty-five minutes could run past an hour for a wheelchair user rolling parallel to the direct path in search of a driveway apron or a construction ramp that would take the chair’s weight.

A cut corner did not always guarantee safe passage either. An early or poorly graded ramp could empty a chair into the middle of the intersection instead of the crosswalk, or supply no matching cut on the receiving curb, stranding a rider mid-street until a driver stopped or another pedestrian noticed. Access advocates cataloged these placement failures corner by corner through the 1990s, and the catalog became the evidentiary basis for further suits against the city in blocks where Local Law 58’s requirement had, on paper, already been satisfied.

Deaf, Not Disabled

On March 6, 1988, the Board of Trustees of Gallaudet University, the country’s university for deaf students, announced its choice of Elisabeth Zinser — the only hearing candidate among three finalists — as its seventh president, passing over the deaf candidates I. King Jordan and Harvey Corson. Students led by Greg Hlibok, Jerry Covell, Tim Rarus, and Brigetta Bourne-Firl shut the Washington campus for a week; by March 13 the board had reversed itself, Zinser and board chair Jane Spilman had resigned, Phil Bravin had become the board’s first deaf chair, and Jordan — deafened at twenty-one in a motorcycle accident — had been named the university’s first deaf president.¹⁰ Jordan’s line at his first press conference, “Deaf people can do anything except hear,” traveled well beyond Washington. Six years later the same politics reached a New York institution directly: in 1994, alumni and parents of the Lexington School for the Deaf, the oralist institution that had occupied a Jackson Heights, Queens, campus since 1968, forced its board to replace a newly appointed hearing chair with Bravin, by then the first deaf person to hold the Gallaudet chairmanship as well.¹¹

Lexington’s oralist tradition — speech and lip-reading over sign — sat against a second New York institution built on the opposite premise. The New York School for the Deaf, universally called Fanwood after its former Washington Heights location, had adopted Total Communication in 1977 and remained through the 1990s the city’s manualist counterweight, drawing families for whom American Sign Language, not spoken English, defined a deaf child’s education.¹² Leah Hager Cohen’s 1994 Train Go Sorry: Inside a Deaf World, set at Lexington, where her father served as superintendent, documented the school navigating between what she called “hearing chauvinists” pressing for medical intervention and “deaf militants” who read that intervention as cultural erasure.¹³

The medical intervention in question was the cochlear implant, approved by the Food and Drug Administration for adults in 1984 and, around 1990, extended to children as young as two. The device threaded an electrode array into the cochlea and gave many profoundly deaf children some functional hearing; the objection from Deaf-cultural advocates was that deafness was not a deficit to correct but the foundation of a linguistic community, and that implanting children born overwhelmingly to hearing parents risked dismantling that community within a generation — a position some advocates called, starkly, “cultural genocide,” and that the National Association of the Deaf codified in a 1991 statement opposing pediatric implantation.¹⁴ The distinction underneath the whole debate was the one the community itself insisted on: capital-D Deaf as a linguistic and cultural identity, chosen and defended, against lowercase-d deaf as a medical description of hearing loss to be treated. New York’s Deaf community pursued the ADA’s interpreter mandates and its closed-captioning requirements gladly through the decade, while continuing, often pointedly, to resist the word the statute used to secure them.

The tools of Deaf social life shifted under the same pressure that reshaped its politics. Federal law had already required TTY access at government agencies before the ADA extended interpreter and relay obligations more broadly, and through the decade the TTY gave way first to pagers and then to electronic mail, letting Deaf New Yorkers reach one another directly rather than through a hearing intermediary — a change that thinned, without ending, the evenings once spent together in a rented room above a bar or a church basement. Greg Hlibok, one of the Gallaudet students who had led the 1988 shutdown, told an audience in 1994 that the moment had made it, in his own estimate, the best time within memory to be Deaf.

The Interactive Process

The Rehabilitation Act had already established, through School Board of Nassau County v. Arline in 1987 and a Department of Justice reinterpretation the following year, that even asymptomatic HIV infection could qualify as a disability under federal law; the ADA’s Title I extended that protection to private employment when it took effect in 1992.¹⁵ The mechanism it created was called, in the statute’s own vocabulary, the interactive process: an employee requested an accommodation without any obligation to name a diagnosis, only to describe a limitation; an employer could ask for medical documentation of that limitation, kept in a file separate from the personnel record; and the employer then owed a reasonable accommodation up to the point of “undue hardship,” a threshold a major employer rarely reached over a request for flexible scheduling, rest breaks, or leave. An HIV-positive editor at a New York magazine in the early 1990s could ask for time to keep a medical appointment, or simply for latitude around “a chronic condition,” and receive it without the word HIV ever appearing on a form.

The open legal question through the middle of the decade was whether a person who looked, by every outward measure, entirely well could be said to be “substantially limited” at all. The case that settled it arose on September 16, 1994, when Sidney Abbott, an HIV-positive patient, disclosed her status on a dental registration form in Bangor, Maine, and was told by her dentist, Randon Bragdon, that he would treat her cavity only in a hospital, at her own expense. Abbott sued under Title III; the case reached the Supreme Court, and in June 1998 the Court held, in an opinion by Justice Anthony Kennedy over a dissent from Chief Justice Rehnquist and Justices Scalia and Thomas, that asymptomatic HIV was a disability under the ADA because it substantially limited the major life activity of reproduction.¹⁶ The ruling arrived two years after the antiretroviral combinations that reshaped the epidemic’s course, the “Lazarus effect” reported out of the Vancouver AIDS conference in the summer of 1996, had already begun turning a terminal illness into a chronic one for the people who could reach the new drugs in time. What Bragdon settled for the office was narrower and more durable than the epidemic’s own turn: an employee did not have to look sick, or be dying, to be covered.

Group life insurance complicated the picture in ways the ADA did not reach. Most large employers’ policies, governed by federal pension law and issued without individual underwriting, paid an AIDS death the same as any other; the exposure sat instead in supplemental “buy-up” coverage, which sometimes required evidence of insurability and which an insurer could contest, within a two-year window, if an earlier application had misstated a condition. A family filing a claim on a standard group policy in the mid-1990s generally collected in full; a family filing on a rider bought before a diagnosis sometimes did not, without a lawyer.

The disclosure calculus in the office ran ahead of any remedy the statute supplied. AIDS-related wasting syndrome — the visible loss of muscle mass, the sharpened line of a cheekbone — and the purplish plaques of Kaposi’s sarcoma were, by the early 1990s, legible enough that colleagues frequently recognized the illness before any diagnosis was named aloud. An editor who disclosed gained standing to request a formal accommodation; an editor who did not retained privacy at the cost of folding every absence into ordinary sick leave or a vaguely described chronic condition. Editors who had already watched contributors and colleagues die learned to make the accommodation without the word: a lighter beat, a morning meeting in place of a late one, more time on a deadline granted before it was asked for.

The Name for the Slip

The American Psychiatric Association published the fourth edition of its Diagnostic and Statistical Manual of Mental Disorders in May 1994, operationalizing categories that had been incubating since 1980 into observable, criteria-based diagnoses rather than causal theories. Among the categories DSM-IV refined was Attention-Deficit/Hyperactivity Disorder, and the book that carried the diagnosis to a general readership was Edward Hallowell and John Ratey’s Driven to Distraction, published by Pantheon the same year, which presented adult case histories of the chronically distracted and organizationally chaotic and sold past two million copies across its editions.¹⁷ The drug that followed reached the market in 1996: Adderall, a reformulation of an older amphetamine-salts compound, took a brand name that contracted “A.D.D. for All,” and became within a few years the dominant medication prescribed to adults newly carrying the diagnosis.¹⁸ A senior editor who had spent fifteen years running three assignments at once, missing his own deadlines while meeting everyone else’s, found on the medication that the pieces came in on time — and, as often as not, told a colleague privately that he missed the edge that had made the work distinctive before the pill arrived. Diagnosis itself rarely arrived quickly or cheaply: a psychiatrist evaluating an adult for the disorder typically combined a clinical interview with the Conners or Wender Utah rating scales completed at home and a battery of neuropsychological testing, and insurance in the period commonly treated the whole evaluation as an out-of-network expense the patient covered himself.

The DSM’s diagnostic reach thinned by the end of the decade, when the symptom in question was not distraction but forgetting. The normal-aging failure was well documented and well understood: the tip-of-the-tongue lapse, the certainty of knowing a name that would not surface, concentrated in proper nouns and resolving on its own within minutes or hours, more frequent with age but unconnected to any broader memory loss. Early dementia’s pattern was different in kind rather than degree — episodic memory failures that grew rather than fluctuated, judgment and planning that slipped, a person who mismatched a manuscript’s draft to its writer or scheduled two meetings for the same hour without registering the conflict. The formal category for the space between the two — mild cognitive impairment, measurable memory loss without dementia’s fuller collapse of daily function — was defined only at the decade’s close, in a 1999 paper whose criteria became the field’s standard reference.¹⁹ The diagnostic tool available to a primary-care physician in 1999 was the Mini-Mental State Examination, in clinical use since 1975, a thirty-question screen for orientation, memory, and language that a highly educated patient could pass with a score in the high twenties while plainly declining in the work she had done for decades. A fuller workup, referred to a neurologist, added the Boston Naming Test, the Wechsler Memory Scale, and a structural MRI to rule out other causes; the only drug approved for the resulting diagnosis, donepezil, cleared the FDA in November 1996 and produced modest gains — a point or two on the same cognitive scales — without slowing the underlying course.²⁰

The pattern was recognizable enough within New York’s editorial circles that colleagues often acted on it before naming it. A senior editor whose name had sat on a masthead for two decades might begin forgetting a familiar contributor’s name in a story conference — the room supplying it, the meeting moving on, the first few lapses read as ordinary. The lapses then widened to include names the room knew he knew; a manuscript came back marked with comments referring to an earlier draft, or to a different piece altogether; a lunch date, once reliable to the week, went missed, or doubled.

For a senior editor whose job was judgment rather than any task a checklist could stand in for, the ADA’s promise of reasonable accommodation met a position with no vacant equivalent to reassign it to. What filled the gap instead, in newsrooms and magazine floors across the city in the last years of the decade, was an unspoken choreography rather than a legal process: an assistant who began circulating meeting notes within the hour, a deputy who started sitting in on conversations the boss had always handled alone, decisions quietly rerouted around the person who could no longer be trusted with them, a morning calendar arranged to put the hardest conversation into the best part of the day. No one filed a complaint, because no one, on either side of the desk, wanted the diagnosis named.