1 Entitlement and Advantage
Now you want me to tell you my opinion on autism…? A fraud, a racket. For a long while we were hearing that every minority child had asthma … Why was there an asthma epidemic amongst minority children? Because I’ll tell you why: the children got extra welfare if they were disabled, and they got extra help in school. It was a money racket … Now the illness du jour is autism. You know what autism is? I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is … Everybody has an illness … Stop with the sensitivity training. You’re turning your son into a girl and you’re turning your nation into a nation of losers.
On July 16, 2008, the radio talk show host Michael Savage managed to offend parents of disabled children, racial minorities, and women in less than a minute and a half—an accomplishment that his rivals Rush Limbaugh and Glenn Beck can only aspire to. The group Autism United demonstrated in front of the New York radio station that carries Savage’s program. One of his sponsors, the insurance company Aflac, promptly gave Savage some unwelcome sensitivity training: it pulled its advertising from his program, explaining that the company found “his recent comments about autistic children to be both inappropriate and insensitive.” Criticism was almost unanimous among doctors, child psychologists, disability rights advocates, parents, and pundits alike. Several local stations dropped Savage’s program in response to public outrage.
Savage is a provocateur—deliberately insulting and extreme, with a loose regard for factual accuracy. According to the clinical psychologist Catherine Lord, autism is “just like epilepsy or … diabetes or a heart condition. [Savage’s comments are] like blaming the child with a heart condition for not being able to exercise.”1 Savage eventually backpedaled, saying his remarks were “hyperbole,” designed to draw attention to the problem of fraudulent diagnosis. He agreed to devote another show to the subject so that parents of autistic children and others could air dissenting views.
Savage, like Limbaugh and Beck, is conservative and contentious, but he is also idiosyncratic—often unexpectedly thoughtful, even cerebral. While Limbaugh and Beck are activists for conservative politicians and causes, Savage is distinguished by a kind of crotchety ennui. As contemptuous of other conservatives as he is of liberals (he called Glenn Beck a “hemorrhoid with eyes”), he treats partisan politics with an aloof disdain: “You’ll have to go to one of the other talk-show hosts to get ‘Obama’s a Ma-a-arxist’ and ‘McCain is a wa-a-ar hero.’”2 As a result, where other conservative talk show hosts are annoyingly predictable, Savage’s off-the-cuff ramblings and intemperate tirades are often surprising and intriguing, and they often contain at least a grain of truth. For instance, Dr. Lord admitted that mild autism is vaguely defined and can be a catchall diagnosis for children with behavioral problems who fit no other category. A year and a half after Savage’s remarks, the psychiatrists in charge of writing the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders
announced that they were considering folding several types of mild autism—such as Asperger’s syndrome and pervasive developmental disorder—into a single broad category—autism spectrum disorder—reflecting a new understanding that autism is not a single disorder but rather a range of conditions, from severe mental disabilities to mild emotional abnormalities that can come with extraordinary mental gifts.
There’s a professional consensus that severe autism is a discrete neurobiological condition, but mild cases can be hard to distinguish from less well-defined conditions, such as attention deficit hyperactivity disorder (ADHD) and other vaguely defined “learning disabilities.” Here, diagnosis is difficult and contestable, and expert opinions differ. “We’re fairly good about making the diagnosis of kids who are classically autistic, but as you move away from that specific disorder, it gets harder … [F]or kids who are of average, close to average or above average intelligence, it is difficult to sort out what is eccentricity versus what is a real social deficit,” said Dr. Lord.3
Federal law doesn’t reflect a continuum that includes mild autism and learning disabilities along with eccentricity and poor concentration. For legal purposes, a disability is a discrete condition: either you have it, and therefore have a right to an array of special concessions and extra help, or you don’t. The law doesn’t define learning disabilities with precision, but it does provide a partial definition: “a severe discrepancy between achievement and intellectual ability.”4 In practice, this means that learning disabilities are diagnosed, in large part, by identifying a gap between a child’s performance in academic settings and the performance one would expect of a child of his or her age and IQ.
Civil rights laws entitle all
disabled people to special accommodations and services: a blind person might require an exam to be administered orally or written in Braille; a paraplegic might require voice-recognition software or transcription. These accommodations let the disabled reach their potential. Children with learning disabilities are also legally entitled to accommodations and services that other children are not, such as special tutoring and extra time on exams. In theory, just as a blind person needs Braille, a Seeing Eye dog, or a cane to overcome his blindness, a person with ADHD may need extra time to get organized and overcome his inability to concentrate.
But there are some important differences between severe disabilities like blindness and milder learning and behavioral disabilities. First, conspicuous disabilities often trigger reflexive animus or prejudice. Many employers wrongly assume disabled people can’t work, and businesses discriminate against them because of squeamishness and irrational aversion. A business that refuses to accommodate a disabled person might secretly wish to exclude him. Milder disabilities don’t trigger such reflexive prejudice because, for the most part, they are not conspicuous: typically an employer learns of a learning or an emotional disability only when an employee seeks an accommodation for it. Second, most of the accommodations that people with severe disabilities need wouldn’t help a nondisabled person at all. A sighted person wouldn’t benefit from having an exam written in Braille; an able-bodied person wouldn’t get much of an edge from using voice-recognition software or a professional transcriber. By contrast, people with learning and emotional disabilities often enjoy extra time on competitive exams, costly one-on-one tutoring, and exemptions from discipline for disruptive behavior—things that would benefit anyone. Finally, unlike blindness or a physical disability, many learning disabilities are hard to define objectively; as Dr. Lord admits, they are on a continuum with ordinary “eccentricity.” Put these together and you have a recipe for gaming the system: no one would suggest that an eccentric person with a wandering mind has a right to extra time on a timed exam, but someone with ADHD does—and the two can be hard to distinguish. This doesn’t suggest that civil rights for people with mild cognitive disabilities are a “racket,” but it does suggest that they have the potential to encourage opportunism and can lead to unwarranted advantages.
Suppose two children achieve low scores on a competitive timed exam: one has a diagnosed learning disability, and the other doesn’t. Suppose both of the children’s scores would improve dramatically if they had extra time to complete the exam. Is it fair to give one student extra time and not the other? Maybe. In theory, the extra time isn’t an advantage for the person with a learning disability; it’s just the way he copes with his disability. But if the disability is on a continuum with garden-variety poor concentration, then in fairness anyone
with poor concentration should be entitled to extra time in proportion to the severity of his concentration deficit. This would, of course, defeat the purpose of a timed exam, which is to test not only skills and knowledge but also the ability to perform quickly.
* * *
The Harvard medical student Sophie Currier became a heroine to advocates of breast-feeding in 2007 when she demanded and eventually won the right to a breast-pumping break during a medical licensing exam. No hothouse flower, Currier first took the exam—widely considered to be one of the most challenging of all professional qualification exams—when eight months pregnant and came just short of a passing score. Currier chose to nurse her newborn baby as most experts in the medical profession she was poised to join recommend. But she still needed to pass the exam in order to start her residency at Massachusetts General in the fall. So she asked the National Board of Medical Examiners to give her a break—specifically, an extra hour each day to express and store her breast milk. The board refused, informing Currier that it would accommodate only disabilities as defined by the Americans with Disabilities Act.
Currier wasn’t the first woman to get a less-than-nurturing reaction to her nursing. Until recently, nursing an infant in public was considered indecent exposure and could result in citation or even arrest. Businesses and employers not only refused to accommodate nursing mothers but often deliberately embarrassed them or asked them to leave. The problem isn’t a relic of the era of three-martini lunches and cars with tail fins either. In October 2006, Emily Gillette was flying with her husband and twenty-two-month-old daughter on a Freedom Airlines flight from Burlington, Vermont. Freedom Airlines didn’t give Gillette the freedom to feed her baby; instead, a flight attendant barked, “You need to cover up. You are offending me,” and thrust a blanket into Gillette’s hand. Gillette balked: “No thank you. I will not put a blanket on top of my child’s head.” The flight attendant kicked her off the flight. In response Gillette filed a complaint against the airline with the Vermont Human Rights Commission. Her story inspired over eight hundred women to stage a “nurse-in” at thirty-nine airline ticket counters nationwide.5 This wasn’t the first time lactation took on the character of social protest: a year earlier women staged a “nurse-in” in front of ABC studios after Barbara Walters spoke unapprovingly about a woman nursing her baby on a flight.
A growing number of women have decided that Mother Nature is a more wholesome provider than Gerber or Nestlé and nurse their newborns for a year or longer. In reaction to social squeamishness about breast-feeding and widespread ignorance of its many virtues, some have become “lactivists,” proselytizing to pregnant women and young mothers about the benefits of the breast, lobbying for policy changes to accommodate nursing mothers, and agitating against inhospitable businesses and employers. Their goal is to reverse the decades-long trend toward bottle-feeding, which they see as the result of a conspiracy among hubristic scientists, perverse moralists who eroticize the female breast, and callous industrialists anxious to get new mothers back on assembly lines and behind desks. While breast-feeding was, for obvious reasons, almost universal before the Industrial Revolution, it declined throughout the twentieth century: by 1972 only 22 percent of American mothers nursed their infants.6 Lactivists reject the notion of better living through technology and cite mounting evidence that breast-fed children are less susceptible to illness and emotionally healthier than those who receive only manufactured formula. Scandals involving contaminated baby formula and conspiracies to foist costly baby formula on an impoverished third world have only strengthened their resolve and increased their numbers.
Medical opinion has shifted decisively in favor of nursing: the American Academy of Pediatrics decided in 1997 to recommend that mothers breast-feed their infants for six months. The U.S. Department of Health and Human Services started a campaign to encourage breast-feeding. Public opinion followed quickly, and today bottle-feeding is tantamount to child abuse among the Bugaboo stroller set. As mothers found themselves caught between the old-school squeamishness of blanket-wielding prudes and a trendy new obligation to breast-feed, some feminists began to wonder whether the new ethos was a totem for women’s liberation or a Trojan horse. Hanna Rosin complained in The Atlantic
: “In Betty Friedan’s day, feminists felt shackled to domesticity by the unreasonably high bar for housework, the endless dusting and shopping and pushing the Hoover around … When I looked at the picture on the cover of [Dr.] Sears’s Breastfeeding Book
—a lady lying down, gently smiling at her baby and still in her robe
, although the sun is well up—the scales fell from my eyes: it was not the vacuum that was keeping me and my twenty-first-century sisters down, but another sucking sound.”7
Nursing requires a significant commitment. Nursing mothers must either feed their children directly or express the milk every several hours; failure to do either can lead to painful engorgement, infections, and a reduction in the milk supply. The National Women’s Health Information Center helpfully suggests to working mothers of newborns: “Let your employer know that you are breastfeeding and explain that, when you’re away from your baby, you will need to take breaks throughout the day to pump … Ask where you can pump at work, and make sure it is a private, clean, quiet area … If your direct supervisor cannot help you with your needs … go to your Human Resources department to make sure you are accommodated.”8
Or, failing that, go to court. Sophie Currier v. National Board of Medical Examiners
wasn’t even a close contest in the end. The National Board of Medical Examiners, with their creaky old rules and their hand-wringing about the integrity of their precious exam, didn’t have a chance against the sisterhood of virtuous lactation—a powerful fusion of modern feminism and the Victorian cult of pure womanhood, backed by the American Academy of Pediatrics, with Angelina Jolie as glamorous spokesmodel. Currier lost her sex discrimination lawsuit at the trial court but won handily on appeal: Judge Gary Katzmann held that “in order to put the petitioner on equal footing as the male and non-lactating female examinees, she must be provided with sufficient time to pump breast milk.”9
Pumping breast milk is time-consuming and uncomfortable: a machine must be assembled, the milk must be pumped, the machine must be cleaned so it’s ready for next time (which will be roughly four hours later) and disassembled for storage, and the milk must be stored on ice so that it is still fit for the baby to drink later. This could easily consume the entire forty-five-minute standard break for the medical licensing exam, leaving Currier no time to eat or use the restroom. Pumping might not take the entire hour that Currier asked for, but any extra time wouldn’t really give her an edge. She couldn’t use it to think through or reconsider her answers, because the exam was administered in discrete blocks, and once a block was finished, the examinee could not return to it. The board’s concern that the accommodation would compromise the exam seemed unwarranted: after all, Currier wasn’t asking for extra time to take the exam itself.
But actually, she was. Currier had been diagnosed with ADHD and dyslexia; as an accommodation, she had demanded and received a full eight hours
of additional exam time—double the normal limit. The board granted this request because ADHD and dyslexia are recognized disabilities within the definition of the Americans with Disabilities Act. Having failed the exam once even with the extra time, Currier had come back to the board with another demand for an additional accommodation.
It was starting to look as if Currier wanted to keep changing the rules until she passed. This may explain why relatively few feminists or lactivists took up her cause. Pondering the lack of support for Currier, Slate
’s legal analyst Dahlia Lithwick complained that “if we can’t stand up for a woman with a brilliant career who is fighting to care for her babies as she chooses … you really have to wonder if we can stand up for anyone at all,” but worried that “it’s harder to sympathize … when we learn that she is already getting a whole extra day to take the test because she has ADHD and dyslexia, or that she received extra accommodation in her schooling as well … Suddenly … she isn’t a pioneer for the rights of working moms. She’s a crybaby and an opportunist.”10 This lack of sympathy was widely expressed on blogs and websites devoted to working mothers and lactation rights. “This woman is a disgrace,” groused an anonymous commenter on a motherhood blog. “Not only has she failed the exam, she is expecting everyone else to fix her problems for her … I am a physician, a working, nursing mom, who passed her general and subspecialty boards (written and oral) while nursing without difficulty.” On another site a nursing mother complained, “As a nursing mother who has managed to get through a LOT of daylong exams without whining … I can only say there is a limit to special entitlements … Ms. Currie [sic
] is simply an example of entitlement gone too far.” Another woman wrote, “While I sympathize with her for nursing … keep in mind that she did get lots of extra help [and didn’t pass the first time] … Is there any chance of passing the 2nd time? Maybe, with the extra 2 days she has been given for a one day test, plus the extra time given for her to lactate … In a way, I am glad [she won] … now other people will get an awareness and learn how to get … perks … when going through the educational system.”11
Doctors, on the whole, were even less sympathetic. One insisted: “The USMLE is a STANDARDIZED test to assess a minimum competency … If you don’t pass, then the exam is doing what it was intended to do: preventing somebody without a core knowledge of medicine [from] practicing … When the patient dies on the table [because the doctor is too slow] who is going to be supporting her when her excuse is ‘I needed to breast feed at that moment.’” Another echoed this macabre theme: “When your Father has a heart attack, do you want [someone who] is … practicing only because he/she was granted 3 months of time to pass his licensing exam while every other MD passed it in 8 hours?”12
Few observers bothered to distinguish between the accommodations Currier received for her disabilities and those she received to pump. Currier’s supporters typically treated the extra eight hours she received due to her dyslexia and ADHD as irrelevant: “If a man were to have ADHD and dyslexia … [and] were to also have cancer … he’d be given accommodations for his ADHD and dyslexia, and
I would think that additional accommodations would be made for his cancer … as well.” Her critics thought that each accommodation—regardless of the justification—compromised the integrity of the exam and gave Currier an unfair advantage: “Allowing some students to have a time advantage, no matter the reason, destroys the integrity of the exam.”13
But there’s a big difference between Currier’s modest request for an extra break to pump and the extra eight hours of exam time she enjoyed as an accommodation of her disabilities. Perversely, federal civil rights law gave Currier an entitlement to the more extreme accommodation while leaving the modest request open to debate (Currier eventually got her pumping break under Massachusetts state law). Contrary to the complaints of her critics, letting Currier take an extra hour to pump doesn’t compromise the exam much, if at all. The extra break is pretty close to the amount of time Currier would actually need to pump and store her milk—leaving her no better off than a non-lactating examinee. You might think that the extra time away from the test would give Currier a recuperation advantage, but any woman who has used a breast pump will tell you that it’s not exactly relaxing or rejuvenating. Currier’s critics often remarked that she won’t be able to ask for extra time in the operating room, but unless she’s lactating again when she needs to perform an eight-hour surgical procedure, she won’t need to. The break simply compensates for the effects of a temporary condition that would otherwise depress Currier’s test results and make the exam an inaccurate measure of her true abilities.
We can’t say the same of the legally mandated accommodation for Currier’s disabilities. ADHD and dyslexia are not temporary conditions. If they affect Currier’s ability to take the exam, they will affect her ability to perform any similar task under time pressure. Of course, an exam isn’t a perfect measure of real-life job skills: plenty of people who do poorly on exams excel in real-life situations, and just as many do well on exams and poorly on the job. But when used to test for minimum competence, the exams serve an important function: they are a cheap and efficient way to screen out the ill prepared and the incompetent. You’d be a fool to entrust your health to a doctor just because she had a high score on her medical boards, but you’d be a bigger fool to entrust it to someone who couldn’t pass them. Here the morbid fantasies of Currier’s critics are relevant: if Currier couldn’t focus on a make-or-break professional exam because of her ADHD, will she be able to focus on a life-or-death time-sensitive medical procedure or complete a complex diagnosis? Perhaps Currier will choose a medical specialty where speed and concentration are never required. But if that’s the reason to give her extra time, shouldn’t anyone willing to limit himself to time-insensitive specialties get extra exam time?
* * *
Several federal laws prohibit discrimination against people with disabilities. The most important are the Rehabilitation Act, the Americans with Disabilities Act, the Fair Housing Act, and the Individuals with Disabilities Education Act (IDEA). Together these laws cover employers, landlords, proprietors of public facilities, public schools, and any other organization that receives federal funding. The Rehabilitation Act and the Americans with Disabilities Act define a disability as a physical or mental impairment that substantially limits a major life activity. The IDEA adopts a similar definition but also specifically defines as learning disabled any child who fails to “achieve commensurate with his or her age and ability levels … [and] has a severe discrepancy between achievement and intellectual ability.”14
The idea behind these laws is that the failure to accommodate a disability is a kind of discrimination. Before the 1970s most disabled people were excluded from meaningful social interaction and gainful employment. Blatant discrimination was the norm, and few institutions made any effort to be accessible to disabled people. The all-too-common view was that if someone was unable to attend school, enter public buildings, or hold jobs because of his handicap, it was a tragic fact of life about which nothing could be done.
Advocates for the disabled, inspired by the civil rights movement, began to challenge this widespread idea in the 1970s. They insisted that disabled people could lead productive lives without science-fiction technological cures if society made an effort to accommodate them. In fact, they argued, many disabled people suffered less from the natural consequences of their physical condition than from discriminatory practices and insensitive policies established in disregard of their needs. Many people were openly contemptuous of the disabled, insulted their dignity with condescension and pity, or avoided them out of an irrational squeamishness. And how different were the myriad subtler decisions made in callous ignorance of disabled people and their needs? A wheelchair-bound architect would never design a building with stairs as the only means of ingress and access to upper floors. A deaf school administrator would make sure teachers provided written as well as oral instruction. Just as discriminatory laws once excluded blacks, discriminatory employment standards, educational policies, and architectural design excluded the disabled.
Congress passed the first major law prohibiting discrimination against the disabled—the Rehabilitation Act—in 1973, prohibiting recipients of federal funding from discriminating. It passed the Education for All Handicapped Children Act banning discrimination in public education two years later. But these laws were too mild and too limited: the disabled remained locked out of the mainstream of the job market and public life. When Congress passed the Americans with Disabilities Act (ADA) in 1990, banning discrimination in employment and businesses open to the public, it found rampant discrimination against the disabled that had resulted in widespread unemployment and poverty in their ranks: “Two-thirds of all disabled Americans between the age of 16 and 64 are not working at all … Fifty percent of all adults with disabilities have household incomes of $15,000 or less. Among non-disabled persons [the figure is] only twenty-five percent.”15 The ADA forbids discrimination against people with disabilities and defines “discrimination” to include a failure to make “reasonable accommodations” of their disabilities. The simple nondiscrimination provisions require employers, landlords, and proprietors to treat disabled people as well as they treat people without disabilities. The accommodation provisions require employers, landlords, and proprietors to make special exceptions and take affirmative steps to help the disabled succeed.
The idea that disabled people were limited by laws, policies, and design rather than by their physical handicaps inspired a cumbersome but instructive nominal innovation: the disabled became “differently abled.” For instance, the idea that blind people developed their other four senses to an almost superhuman degree was sufficiently mainstream by 1967 to serve as the premise of the Hollywood film Wait Until Dark
. Audrey Hepburn played a blind woman who is terrorized by criminals looking for smuggled drugs. In the climactic sequence, her character fends off a knife-wielding man by plunging her apartment into darkness, giving her the advantage over her sighted assailant. In the same year the television police drama Ironside
featured Raymond Burr as the retired detective Robert Ironside, who had been paralyzed by a sniper’s bullet. Aided by a modified police van designed to accommodate his wheelchair, Ironside remained an ace sleuth, using his years of experience and intelligence to solve crimes his able-bodied colleagues couldn’t crack. Under the right conditions, a handicap could be a strength.
Social movements for the disabled followed the lead of Black Power and turned what had been a cause for stigma into a source of power. And just as black pride matured into multiculturalism, with its vague but consistent implication that any social practice that was sufficiently widespread among a racial group was a part of that group’s unique and precious “culture,” some disability rights groups came to see their conditions and unique methods of coping as parts of a distinctive and precious culture as well. For instance, activists for the hearing impaired argued for the existence of a “deaf culture” grounded in sign language.16 Some in the deaf culture movement rejected lip-reading as a demeaning form of assimilation. Some went as far as to reject hearing aids and other medical devices designed to restore lost hearing as an insult to deaf culture: these interventions implied that deafness is a defect to be fixed rather than a condition that gives rise to an equally valid and valuable alternative mode of interaction with the world.
Disability rights laws were inspired by the long-overdue recognition that disabled people could make valuable contributions if given the chance. But the laws could also give effect to a much more questionable claim: that disabilities are not in fact disabling, but simply define different, equally effective modes of perception and interaction. It follows from the stronger claim that any practical impediment to the full and equal interaction of disabled people is the result of some form of invidious discrimination: the wrongful hegemony of bipedal over alternative modes of locomotion prevents a wheelchair-bound paraplegic from easily entering a nineteenth-century building built with grand staircases; the unjust emphasis on concentration and speed keeps a person with ADHD from passing the medical licensing exam.
It can be hard to tell the difference between the natural limitations of a disability and limitations that are imposed or magnified by bigotry, callous indifference, and careless oversight. Until recently, most people assumed that the disabled were simply incapable of making valuable contributions to society, so very few things were designed to accommodate them. Often, minor changes could have accommodated disabled people at relatively little cost. Doors can be widened slightly to accommodate wheelchairs, written materials made available to the deaf to supplement an oral presentation, oral descriptions used to aid the blind. And these changes may inadvertently improve things for a much larger group of people: ramps designed to accommodate wheelchairs also help people with wheeled carts, baby strollers, and wheeled luggage; written supplements to an oral presentation benefit the large number of people who find spoken lectures hard to follow and remember. Rights for the disabled have improved public life dramatically by punishing irrational prejudice and encouraging everyone to rethink habitual practices.
But disabilities are disabling. No amount of design accommodation will allow a blind person to pilot an aircraft safely or help a person with Parkinson’s disease to practice delicate surgery. And even when accommodation is possible, disability rights present difficult trade-offs: How much can we afford to change norms, rules, and physical infrastructure to help people with disabilities? Ramps and elevators to accommodate wheelchairs are expensive; remodeling older buildings can destroy their architectural character; Braille translations are costly and hard to acquire; closed-captioning isn’t free. We’ve correctly decided to make the changes in many cases—but not all. The law requires that employers, landlords, and proprietors make “reasonable” accommodations, inviting a cost-benefit analysis. Courts often find that a disabled person is entitled to some accommodation, but not everything that he or she might want. To accommodate a wheelchair, an employer may have to remodel a bathroom but not a staff kitchen. New construction must be designed to accommodate the disabled, but older buildings can remain inaccessible until they are substantially remodeled. Employees must be able to perform the “essential functions of the job” in order to qualify for mandatory accommodations: that rules out the blind pilot and the surgeon with the shakes.
Unfortunately, thinking of these conflicts in terms of civil rights encourages claimants to ignore the necessity of tough decisions and trade-offs. Sophie Currier and her supporters consistently argued that her demands for accommodation were questions of simple fairness, as if there were no downside to changing the rules just for her. Judge Katzmann, for example, insisted that Currier’s accommodations just put her “on an equal footing” with other examinees, and another Currier supporter was confident that the accumulation of special breaks didn’t matter: someone with ADHD, dyslexia, and cancer should get extra time for all three conditions, she insisted.
There’s a reasonable argument that fairness required giving Currier extra break
time to pump. But there’s also a strong argument that giving her two days to complete a time-sensitive exam doesn’t put her on an “equal footing” with the examinees who had only eight hours; it gives her an advantage. The argument for this accommodation was that the exam was biased against Currier and the extra time only corrected the bias. But the exam was “biased” only if speedy performance is irrelevant. And in that case the exam is biased against all examinees
who would have passed if they had had more time. If the speed limitation is arbitrary and misguided, the National Board of Medical Examiners should drop it entirely rather than make case-by-case exceptions.
There’s a sound civil rights precedent for such an approach: Title VII of the Civil Rights Act requires an employer to abandon an employment practice that disproportionately screens out members of a minority group and isn’t job related
. But the employer has to drop the practice entirely—not suspend it or change it just for members of the minority group. On the other hand, if the practice is
job related, the employer can use it regardless of its effect on minority groups.
It’s a conceptual sleight of hand to define one person’s inability to answer questions quickly and accurately as a disability that society must accommodate in order to reach the merits, when the same inability is considered a lack of merit for other people. This is especially true of a disability like ADHD, which many experts believe differs only in degree from what we might simply call a high-strung or absentminded personality trait. It makes little more sense to insist that exceptions to the normal rules simply “make up” for ADHD than it would to insist that an exam that favors smart people “discriminates” against the less intelligent. We all have unique natural strengths and weaknesses that make us better suited to some jobs than to others. Short people are at a disadvantage in basketball tryouts; socially awkward people typically don’t succeed in politics; clumsy people make bad jugglers. Isn’t it possible that people who have a hard time concentrating usually don’t make the best doctors?
* * *
Tom Freston may be best known as the man who discovered music videos. He got involved in cable television in 1979, when it still seemed doubtful that people would pay for television when they could get Big Three network programming for free. Along with the legendary adman George Lois, who designed Esquire
magazine’s avant-garde covers during its golden age in the 1960s, Freston created the now iconic “I Want My MTV” ad campaign that defined shopping-mall chic during the early 1980s. He went on to turn MTV from a cultural phenomenon into a global media empire, launching VH1, Nickelodeon, Comedy Central, and many other cable channels and creating independent programming to edify the masses, including SpongeBob SquarePants
, South Park
, and Beavis and Butt-head
. Freston’s MTV Networks invented reality television with The Real World
, the first television show to place several strangers in a house together and tape their every move. An arrangement that would have been an unambiguous violation of professional ethics if done in the name of science was an unqualified success as entertainment. He became president of Viacom—MTV’s parent company—in 2004, where he remained until 2006. He left with a $60 million severance package.
In 1995, after his son Gilbert was diagnosed with ADHD, Freston enrolled him in the Stephen Gaynor School, a private school specializing in learning disabilities. The Gaynor school isn’t cheap: one year there cost $21,819 in 1999. Still, that wasn’t much more than what a typical New York City private school would cost, and few people with Freston’s wealth send their kids to public schools in New York: private school tuition is simply one of the many extraordinary expenses that wealthy urbanites consider a necessity.
The Individuals with Disabilities Education Act requires all states that receive any federal funding for special education to provide all children with disabilities a free and appropriate public education. The law requires that public schools develop “specially designed instruction, at no cost to parents, to meet the unique needs of a child with a disability.” If the school district fails to provide a child with an “appropriate” education, the parents are legally entitled to tuition reimbursement for private schools. Public schools are often unable to accommodate a child with a rare and severe disability at a reasonable cost: private placement may be better for the child and cheaper for the district. And if a district simply fails to offer an appropriate education due to incompetence or neglect, parents should be able to take matters into their own hands and make sure their child gets the education he or she needs. The law makes sure that disabled children have the same access to a free public education as any other child: the school district must either provide an education that meets their needs or outsource the job to someone who can.
But what about parents who would never consider public school for a nondisabled child? Freston asked the New York City Board of Education to evaluate Gilbert and recommend an educational program suited to his special needs, but nothing the school district had to offer could match the pricey private school Gilbert was already attending. Freston sued the school district for his son’s private school tuition in 1997 and 1998, and the district agreed to compensate him. He later argued that this was a tacit acknowledgment that the district had not offered Gilbert an appropriate education; the district insisted that it paid up only in order to avoid litigation. In 1999 the district offered Gilbert a coveted placement in the city’s Lower Lab School for Gifted Education with a student-faculty ratio of fifteen to one along with additional tutoring and counseling. But Freston never visited the school or met with any of its staff, and later testified that “it was sort of a moot point … I spent the summer in California … The down payment [for private school] had been made.”17
School administrators from coast to coast worried that wealthy parents would game the system to get school districts to pay for private schools—and more. The San Francisco Chronicle
described the parents of a student with learning disabilities and anxiety disorder who enrolled in a “$30,000-a-year prep school in Maine—then sent the bill to their local public school district.” According to the Chronicle
, “Parents of special education students seek extra-special education at public expense: private day schools, boarding schools, summer camps, aqua therapy, horseback therapy … Special education is a growing portion of budgets in many districts, squeezing out services for other pupils.” Similarly, Time
magazine reported that an autistic child’s parents “informed Colorado’s Thompson school district it had to pick up the bill for Boston Higashi’s $135,000 annual tuition.” The New York Times
quoted a Westport, Connecticut, school superintendent who faced special education reimbursement requests for horseback riding and personal trainers.18 These reports suggested that a law designed to help the disabled and needy had become a giveaway for the rich and greedy. Mainstream media coverage of “extra-special education” echoed the radio talk show host Michael Savage’s claim that learning disabilities had become a “money racket.”
New York fought Freston’s claim for private school tuition. Joined by a coalition of other large urban school districts, the city argued that “many parents ask public school districts to develop an [educational plan] for their child despite intending from the outset to reject whatever … is developed and then claim that the district is unable to provide [an appropriate education] … These parents, who never intended to use the public schools, unilaterally place their child in the private school in which they planned to enroll their child all along, and then request reimbursement, hoping for a windfall.”19 The cities pointed out that private schools for the disabled often encourage parents to sue local school districts for tuition reimbursement; some even gave parents a list of “contact information for … lawyers and … instructions on how to sue the city.” The cities insisted that in order to “prevent abuse by parents who never intended to use the public schools,” the IDEA allowed parents to seek tuition reimbursement only after their children had tried public schools and they had proven inadequate.
Advocates for the disabled countered that most disabled children do not come from wealthy families; to the contrary, “30 percent of children with disabilities live in foster care … Almost 25 percent … are living in poverty.”20 The advocacy group Autism Speaks warned that disabled children who are forced to “try out” inappropriate public school placements before moving to an effective private school may miss a critical window of opportunity for development: “The effectiveness of intervention depends on early application … When the opportunity presented during this window passes, the squandered potential cannot be regained later.”21 As for the threat of escalating expenses, advocates for the disabled pointed out that private placements accounted for only a tiny fraction of the costs of special education and most private placements involved severely disabled children, whom school districts admitted they couldn’t serve. The cases where parents unilaterally put their children in private school and sued the district for reimbursement were trivial in number.
Moreover, the cost of private placement was typically not much more than an adequate public education: in fact, New York City’s public schools spent more on average for a disabled pupil attending public schools than Freston had requested in reimbursement.22 One of the briefs filed on behalf of the City of New York complained that “in one recent school year, public schools spent over 20% of their general operating budgets on special education students.”23 But, as a brief filed on behalf of Freston pointed out, most of that amount was spent on special education in public
schools—not on tuition reimbursement.24 Taken together, these arguments implied, perhaps unintentionally, that tuition reimbursement wasn’t a unique problem; it was just a dramatic example of the cost of special education generally.
Mark Kelman, my colleague at Stanford, and Gillian Lester, now a professor at UC Berkeley Law School, conducted an extensive study of learning disability claims in public schools. They visited a number of local school districts and talked to local school administrators, teachers, and parents to see how the disability rights laws worked in practice. They came away convinced that treating the education of learning disabled children as a civil rights issue benefited rich families at the expense of the poor and actually made it harder to educate most students—disabled and nondisabled alike.
For nondisabled children, the problem is obvious: the law requires school districts to spend more—often a lot more—on costly special services reserved exclusively for children diagnosed with learning disabilities. This might make sense if the districts were awash in money, or if the special services were uniquely helpful to the children with learning disabilities, the way, say, Braille texts are uniquely helpful to the blind. But in fact many of the special services the schools are required to provide for children with learning disabilities would benefit any
child: smaller classes with better student-teacher ratios, one-on-one tutoring, immunity from discipline for disruptive behavior, extra time on exams. One administrator Kelman and Lester interviewed worried that only
maybe half the people we label are “really” LD. The problem is that the truly LD kids are irremediable. The 25 percent who eventually show significant changes were probably misdiagnosed. In theory, the LD kids have alternative coping mechanisms, and the educator should try to help the kids tap into these alternatives, [but] slow learners [who aren’t diagnosed as learning disabled] may also have untapped abilities … The difference between the two is merely a matter of degree.
Good teaching, simply, is what makes it work … For the LD kids or for anyone else, good teaching is good teaching.25
Some administrators believe the law requires them to prevent services earmarked for a child with a learning disability from “leaking” over to other, presumably undeserving students who may simply be slow learners. For instance, if a student with a mild learning disability attends class with nondisabled students and receives one-on-one tutoring during the school day, can the tutor also help other kids who have questions about the day’s lesson? While some school officials think they must prevent the diversion of special education resources to nondisabled students, others welcome “leakage” as a way to compensate for the inevitably imprecise diagnosis of learning disabilities. “This way, the sharp categories formally exist, but all students who need assistance … get it,” said one California administrator.26
Special education services eat up a growing share of the public school budget in many districts. In 1979 there were 796,000 students diagnosed with learning disabilities; in 2003 there were 2,848,000, and the number continues to grow at a rapid pace. Perhaps too few students were diagnosed with learning disabilities in the 1970s, but as a larger and larger percentage of students are said to have a “disability” that keeps them from learning, one has to wonder whether the cause is truly neurobiological, or whether it’s political and social. Under the IDEA, schools that fail to effectively educate disabled children can be made to pay for private school tuition. But the public schools—especially those in large cities like New York—are failing to educate many of their students who aren’t disabled too. For instance, in 2006 over 3 percent of all
the students served by the Washington, D.C., school district were in private placements at a cost, according to The Washington Post
, of 15 percent of the district’s entire budget.27 But, as two special education experts acknowledged, “the D.C. schools struggle to provide an adequate education to any of their students. Disabled students are entitled … to demand an adequate education … The nondisabled students … lack the same mechanism for exiting failing schools.”28 Contrary to the civil rights theory underlying the IDEA, disabled students who don’t receive an adequate education aren’t necessarily being discriminated against; tragically, they’re often receiving the same-quality education as everyone else.
The civil rights approach to special education also disserved many disabled children—especially those from poor and minority families. Historically, special education has been split along the lines of family income and race. Culturally unsophisticated children—often poor blacks and Latinos and poor people who had moved from rural to urban areas—accounted for the lion’s share of children labeled “slow,” mentally retarded, emotionally disturbed, or culturally deprived. These students were typically either expelled from school or shunted off into dead-end special ed classes. The problem was so pervasive that civil rights activists in the 1950s and 1960s worried that special ed had become a cloak for racial discrimination and lobbied hard for provisions designed to ensure that minority students were not segregated from mainstream public education.29
Meanwhile, the category of “learning disability” emerged due to the efforts of wealthier, predominantly white families in the 1950s and 1960s who saw their underachieving children slip through the cracks of the educational system. Armed with psychological research that had identified discrete neurological causes (such as dyslexia) for certain cases of poor academic performance, they lobbied for a new category that would distinguish their children from the “mentally retarded” and from children who were simply lazy or slow—a recognition of a discrete condition that did not actually decrease intelligence, but only masked it. In studies of children with learning disabilities published in the 1960s and early 1970s, 98.5 percent were white and 69 percent were of middle-class or higher socioeconomic status.30
Today’s learning disability rights laws are a result of the efforts of these two groups: litigation to prevent the isolation and expulsion of retarded, emotionally disturbed, and hyperactive children eventually led to the Education for All Handicapped Children Act in 1975, now renamed the Individuals with Disabilities Education Act. Special education under the IDEA can range from reimbursement of expensive private school tuition to isolation in a dead-end class with “slow” children. Kelman and Lester worry that poor children typically receive very different treatment under the IDEA mandates than do the children of wealthy parents, who have the wherewithal to pressure school districts for better and more costly options: “The IDEA system … permit[s] relatively privileged white pupils to capture high-cost … in-class resources that others with similar educational deficits cannot obtain while, at the same time, allowing disproportionate numbers of African-American and poor pupils to be shunted into [dead-end special ed] classes.” There was even more reason to worry that the IDEA system benefited the rich at the expense of the poor in the case of demands for tuition reimbursement like Tom Freston’s because only wealthy parents could afford to send their child to an expensive private school and sue for reimbursement later. As the coalition of urban school districts warned in its amicus brief: “Every dollar spent on tuition reimbursement is a dollar that can no longer be spent to improve public special education programs … [This harms] students with the greatest need for public services, namely those whose families cannot afford to seek services outside the public school system.”31
Those families face deteriorating schools with large classes and dramatically reduced extracurricular activities. In New York City, kindergarten classes averaged 22 students in 2009, and elementary and middle school classes averaged 25.8 students.32 In California, budget cuts have made classes of over 30 students commonplace, and many students have to pay for extracurricular activities such as sports and music out of their own pocket—if they are offered at all.33 It’s easy for parents to argue that public school classes don’t offer an adequate education to their learning disabled children when they don’t offer an adequate education to anyone
. Given the state of many American public schools, who can blame parents for seeking private alternatives or trying to finagle extra resources for their children? And even the top public schools can’t compete with the best that money can buy. New York’s offer of a much-sought-after spot at the prestigious Lower Lab School for Gifted Education paled in comparison to the education Gilbert Freston was receiving at the private Gaynor school, where he enjoyed a four-to-one student-staff ratio: the head teacher at Gaynor suggested that the city’s proposed class size of fifteen “could be a bit overwhelming.”34
Freston insisted that he sued as a matter of principle: after taking his case all the way to the U.S. Supreme Court, he donated the tuition reimbursement that he was awarded to tutoring for public school children. But all things considered, Freston’s stance is somewhat perverse: What sound moral principle would force cash-strapped public schools to provide a gourmet education for some students while others must make do with a dog’s breakfast?
In 2009 students with learning disabilities accounted for almost half the entire population of disabled students receiving special services under the IDEA. It’s no accident that the explosion of learning disability diagnoses comes at the same time the public schools are increasingly troubled by overcrowding, spotty teaching quality, and violence. The strongest students manage to learn despite overcrowding and poor teaching, but weaker students don’t. So while all students suffer from overcrowding and indifferent teaching, poor performers—whether diagnosed with disabilities or not—suffer most. The parents of such students are right to insist that the schools are failing to help their children realize their potential, and failing them more dramatically
than they are failing students who learn easily and without much help. In that sense, poor schools are inherently discriminatory: they make any student who has difficulty learning—for whatever reason—worse off than students who learn easily. But of course in this sense any poorly provided public service “discriminates” against the people who need it most: badly run hospitals discriminate against the injured and the sick; incompetent police departments discriminate against people living in crime-ridden neighborhoods; inadequately maintained parks discriminate against people without backyards.
The solution is obvious: better public services for everyone. But the IDEA doesn’t make the public schools better; instead, it shifts resources to a small fraction of the larger group of people who need them most. This might make some sense if that small fraction were especially injured by inadequate education or if they would uniquely profit from the extra resources. But if, as many educators believe, these children need the same things that any other student needs—good teaching in small classes—then it’s wrong to treat their needs as inalienable civil rights when we treat the needs of other students as luxuries that nearly bankrupt districts can’t afford. At any rate, the IDEA doesn’t even try to find out whether children with learning disabilities get more out of extra resources than other children would. Instead, the law mandates that some children should have more than others whether or not they need it more or will benefit more from it. All in the name of equality.
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Dr. Paul Steinberg, a Washington, D.C., psychiatrist, argues that many students with what we call learning disabilities may in fact simply learn differently than other students and excel in different areas: for instance, “attention deficit disorder” may be a valuable asset in situations that demand spontaneity. “Essentially, ADHD is a problem dealing with the menial work of daily life, the tedium involved in many school situations and 9-to-5 jobs … [but] in many situations of hands-on activities or activities that reward spontaneity, ADHD is not a disorder.” But in today’s economy of technical and professional specialization, concentration is king, spontaneity is less valued, and impulsiveness can be ruinous: “What once conferred certain advantages in a hunter-gatherer era, in an agrarian age or even in an industrial age is now a potentially horrific character flaw.”35 Of course there have always been tasks that required concentration. But in past eras, a lot of things didn’t
require sustained concentration: people we now would diagnose with ADHD could be great hunters, gladiators, knights, traveling minstrels, or rich aristocrats who didn’t need to work. During the Industrial Revolution, at least until the era of Henry Ford and modern management science, factory managers expected that workers would daydream and lose focus on the job. By contrast, in the information economy it’s harder and harder to find a good job where focus and detail orientation are optional.
This suggests that ADHD—even if it is the result of a discrete neurological condition—isn’t really a disability in the way that blindness, paralysis, severe autism, or even dyslexia is. Steinberg suggests we abandon the idea that some people have an attention deficit and instead think of everyone else as blessed (or cursed) with “attention-surplus disorder.” He argues that “children … with attention disorder may need more hands-on learning. Some may perform more effectively using computers and games rather than books. Some may do better with fieldwork and wilderness programs.” Steinberg urges that we “change the contexts in schools to accommodate the needs of children who have [ADHD], not just support and accommodate the needs of children with attention-surplus disorder.” Changing the context doesn’t suggest case-by-case exceptions to a general rule: it suggests a new pedagogical approach. If some children learn better using computers and fieldwork, we should introduce these teaching methods, and there’s no reason to limit them to children with diagnosed learning disabilities. Making viable alternatives available to all children who would profit from them would make the accommodations more equitable, further the important goal of integrating disabled children into regular classes, and eliminate any stigma now attached to “special education.”
Of course that’s practical only if games, fieldwork, and wilderness programs prepare children for life in the modern economy as well as “tedious” conventional schoolwork. Unfortunately, such ideas are often more attractive as therapy than as pedagogy. Educators tried out similar new and untested pedagogical methods in the 1960s and 1970s: when I was in grade school, for several years we learned “new math” and were graded on the quality of our ideas, regardless of whether they were well composed using proper grammar and sentence structure. The idea behind these new pedagogical methods was much the same as Dr. Steinberg’s idea: different children have different learning styles, and many children aren’t engaged by conventional pedagogy. These experiments were often short-lived because the new methods didn’t teach children as effectively: in order to tackle advanced subjects such as trigonometry, calculus, and college-level composition, you needed to have mastered the “old” math, with its multiplication tables and long division, and the boring old rules of grammar, sentence structure, and vocabulary. Moreover, students needed the mental discipline that the old methods imposed: part of the point of rote memorization was to teach children to focus on a single task for long periods of time.
Dr. Steinberg points out that “each child and adult learns and performs better in certain contexts than others.” Of course, this is true whether the person in question is diagnosed with a learning disability or not. It’s best to encourage people to pursue interests and careers for which they are well suited. Let’s face it: in many jobs a wandering mind isn’t a superficial condition that somehow masks an employee’s good performance; it’s a flaw that makes for poor performance. This is true whether or not the cause is an immutable neurological condition, inadequate practice, or a simple lack of diligence. We should help people with short attention spans find jobs where sustained attention isn’t important, not artificially inflate their grades and test scores and kid ourselves that concentration and speedy performance isn’t important in jobs where it is.
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From the beginning, the precise rationale for disability rights has been unclear. Disability rights enjoyed widespread support among both liberals and conservatives, but for very different reasons. That has made it hard for courts to know how to interpret the law and easy for new claimants to press for expanded application and new entitlements. Liberals typically saw the extra resources and special exceptions for students with learning disabilities as civil rights that advance equality—part of a larger set of egalitarian social welfare policies designed to level hierarchies based on what philosophers might call “morally irrelevant” differences. But it’s unclear how far liberals will go in pursuit of this conceptual goal. Arguably all
differences in innate ability and intelligence are morally
irrelevant. But of course differences in ability—whether due to disabilities or not—are very relevant practically
. Disability accommodations have less to do with the mainstream civil rights goal of equal opportunity than with equality of result
—forbidding even-handed policies and practices that happen to disadvantage the disabled. Requiring employers, proprietors, landlords, and schools to ignore differences in ability and absorb the extra costs of compensating for such differences goes further than simply prohibiting irrational discrimination: it’s effectively a redistribution of wealth. In many cases, that redistribution makes sense; for instance, forcing building owners to pay for wheelchair ramps when they remodel or forcing employers to make allowances for blind or handicapped employees gives a long-neglected and disproportionately impoverished group of people a chance to lead fulfilling and constructive lives. But we should evaluate such accommodations as social welfare policies—not categorically accept them as inalienable civil rights.
Conservatives, by contrast, saw the disabled as among a small group of deserving unfortunates who suffer through no fault of their own—unlike the much larger group of losers who have their own shiftlessness and irresponsible behavior to blame for their misfortunes. Disability rights correct for variations in human ability caused by accidents and genetic randomness while leaving more patterned and predictable inherited inequalities firmly in place. Educational accommodations for students with le
Richard Thompson Ford is the George E. Osborne Professor of Law at Stanford Law School. He has published regularly on the topics of civil rights, constitutional law, race relations, and antidiscrimination law. He is a regular contributor to Slate and has written for The New York Times, The Washington Post, The Boston Globe, and the San Francisco Chronicle.