Life With Mark
Back in the summer of 1980 my wife, Margaret, our then-eighteen-month-old son, Nicholas, and I spent several weeks in a dreary resort in the lower Catskills. It was there that we met the Ducks.
The Ducks were a group of mildly retarded young adults who were enjoying a holiday at the same hotel. I believe it was Margaret who bestowed the designation on them, because of the fierce attachment one of their number seemed to have developed for a Donald Duck flotation device kept in the swimming pool for the use of children. His name was Herb, and in contrast to the other Ducks, who were friendly and outgoing, Herb was withdrawn and more than a little strange. He would spend hours stroking the resort owner’s cat, and once planted himself in the middle of a busy intersection in a nearby village where he proceeded to direct traffic until the local police intervened. Herb’s favorite occupation, however, was paddling up and down the pool supported by the duck float, which he regarded with the same kind of nervous jealousy a young child reserves for a treasured toy. Losing possession of the float would send him into a state of visible agitation, and while he never contested any child for the object, the act of restraining himself took all the limited patience he could summon. Calm returned only when the precious thing was restored.
The Ducks were topic number one among the guests and—especially—the staff, who regaled us with stories of their various adventures. There were many such tales, for the Ducks, despite their condition, went everywhere, took part in every activity, and appeared blessedly unaware of what the world thought of their presence. In the condescending gossip and quiet mockery, Margaret and I took part without a second thought.
We have had many opportunities to reflect on our encounter with the Ducks in subsequent years. Margaret was seven-months pregnant during our stay in the Catskills, and we soon learned that the child she was carrying was to be far more handicapped than the marginally retarded group who had provided us with so much diversion.
We worried about Mark almost from the beginning. He slept constantly, cried and fretted much less than would be expected of a normal child, and failed to sit upright or crawl at the appropriate months. At about one year, Mark suffered a major seizure, and was then diagnosed as both mentally retarded and physically handicapped. Eventually, doctors were able to conclude that Mark was afflicted with a relatively rare condition called Cornelia de Lange syndrome.
Mark shares many of the physical characteristics of de Lange children: a roundish, somewhat oversized head, thick eyebrows, unusually small hands and feet. He has also, quite unfortunately, been cursed with some of the bodily complaints common to the condition. His balance is precarious; he cannot run or jump; and he walks with a lurching, wobbly gait. At fifteen, he is physically unable to pronounce more than a handful of intelligible syllables (though his hearing is normal). Since he cannot chew properly, we must remain vigilant lest he ingest any food that might cause him to choke. Mark has had orthopedic surgery on both feet, and has an arthritic hip which could be the source of serious trouble down the road.
As is the case with many multiply handicapped children, Mark’s intelligence is not easy to pinpoint. His IQ was once evaluated at 36, one point above the upper limit for the most severely retarded category. Later, however, we were startled to discover him capable of expressing his needs, his feelings, and even complex thoughts through sign language, or by spelling out sentences on a letter board, with Margaret’s assistance. This process is known as facilitated communication, a technique in which those with little or no speech are physically supported while they spell out their thoughts by pointing to letters of the alphabet on a message board, or by typing on computers.
Facilitated communication has generated more than its share of controversy, largely because evidence gathered by this method from autistic children has figured in several widely publicized cases of apparently bogus charges of sexual abuse. Mark himself has revealed his inventiveness by concocting stories about imaginary school friends or class outings which never took place. But facilitated communication has also enabled him to let us know that he is aware he is different and is sad that he cannot play or have friends like normal children. Once, in a store with Margaret, Mark, apparently assuming he was the intended object, became upset at someone’s passing remark about a retarded child. Demanding the letter board, he angrily spelled out, “I am not retarded. Not!” On another occasion, after I had exhibited impatience over the tediousness of his routine, he told Margaret: “I would like to be normal, but I am not.” (My punctuation in both cases.)
Still, while Mark can—incredibly—spell out in English letters the first few sentences of the Hebrew blessings over Sabbath dinner, he appears unable to follow the plot of a television cartoon or a Sesame Street skit. He also refuses to play by himself, and is satisfied only when someone—usually Margaret or I—participates in one of his infantile games, answers his incessant questions (usually posed through gestures and usually having to do with promised adventures), leads him on a tour of the local shops, or otherwise pays exclusive attention to him.
In his two-volume study, A History of Mental Retardation, R.C. Scheerenberger places the origins of Cornelia de Lange syndrome under the classification “Unknown Prenatal Influence.” We will probably never know why Mark was born with his many, many problems, and in fact we decided early on that it was pointless to agonize over this question. In any event, once confronted with the formidable responsibilities of his care, we had little time to speculate whether the few glasses of wine Margaret drank during pregnancy or the incompetence of a thoroughly unpleasant delivery nurse might have contributed to Mark’s condition. Soon enough, life came to revolve around him and his requirements: his schooling, his therapies, his communication, his medical difficulties.
This is how it is for all parents of severely handicapped children. Margaret and I count ourselves fortunate that Mark at least does not suffer from a condition, like autism, which triggers exotic behaviors and an inability to relate to other people, or even to acknowledge the affection of family members. On the contrary, he is gregarious and likable, a much beloved figure in our Manhattan neighborhood—the mayor of the Upper West Side, he has been called.
When Mark was younger, and his abnormalities less physically obvious, little children often responded to him with benign curiosity, treating him as a mute but friendly giant. Now, however, as a teenager, he often draws a different reaction on our trips to the local playground. Young children eye him with wariness and fear; one little girl, after Mark had plaintively invited her to join him in a game of catch, kept repeating, “Scary boy, scary boy.” Her mother was embarrassed—ours is a very liberal neighborhood—but who could blame the child?
Increasingly, therefore, Mark’s social life takes place in the world of adults, where, thankfully, he seldom meets rejection, and where the family routine is centered on his enjoyment. Our most deeply troubling thoughts stem from the knowledge that, for Mark, the golden years are right now, when he can count on us to make life interesting and fun. It is said that a serious problem for many retarded adults is a depression spawned of isolation; and indeed Mark, who has grown dependent on the active engagement of adults, tends to lapse into a passive funk when ignored. The one thing we cannot do for him is guarantee his future after he leaves the protection of his family; what lies ahead is something we find too painful to dwell on.
There is some consolation to be had in America’s impressive record of care for the retarded, and for the handicapped generally. We tend to forget that other societies do not necessarily share our sense of obligation and humanity toward those who lead a life, in the words of two pre-Nazi German advocates of euthanasia, “without value for itself or society.”
The retarded have met especially cruel fates under totalitarian rule. Hitler is said to have murdered 100,000 handicapped Germans as part of a campaign to rid the country of the genetically impure, a project coordinated by an organization euphemistically named the Committee on Research on Hereditary and Constitutional Severe Diseases. In recent years, China has made the retarded the target of a program in some respects more insidious than the Nazi policy of “mercy killing.” According to a Human Rights Watch report, the Chinese government has introduced a series of measures designed, in the regime’s detoxifying phrase, “to raise the quality of the population.” Basically, these measures amount to state coercion based on the principles of “superior births science,” the Chinese name for eugenics.
China has been testing out its new policies at the provincial level as a prelude to the adoption of a national program. Thus the Gansu province implemented a law entitled “Regulations Prohibiting Idiots, Imbeciles, and Morons from Having Children.” Under this law, retarded couples who plan to marry must be sterilized, and retarded women who become pregnant must undergo abortion. A more draconian law adopted by the Liaoning province applies restrictions to a much wider group, including the mentally ill and those with epilepsy and hemophilia. In addition, women who have already given birth to a “severely defective child,” or have “too much or too little amniotic fluid,” can be forced to have an abortion at the discretion of a doctor. The law also establishes a bureaucracy, comprised of “eugenics health-care supervisors,” who are responsible for “supervising and inspecting the work of preventing inferior births.”
American achievements are worthy of praise not simply when measured against such extreme antihuman policies as these, but by any reasonable historical standard. Those who castigate America as the epitome of an obsessively acquisitive, winner-take-all society have obviously not bothered to examine the extraordinary—and costly—measures we have adopted over the last half-century for the protection, education, and medical care of our most vulnerable citizens. Perhaps surprisingly, the most unambiguous success story has to do with the institutionalization and then the deinstitutionalization of the mentally retarded.
Prior to the development of institutionalization, those suffering from retardation, epilepsy, or associated conditions were, if not kept at home with their families, then shut away in almshouses or left to roam the streets. Against that background, the push to create residential centers for the retarded, typically in remote rural settings, was seen, rightly, as a progressive step. Instead of facing a life of probable neglect, the retarded would be cared for, fed, given medical attention, and, where feasible, educated and trained for work. At the same time, society would be protected against what were widely thought to be the innate inclinations of the retarded toward criminality and/or sexual promiscuity. Thus, in addition to its educational and humanitarian functions, the institution was meant to segregate a community of potential robbers, rapists, and prostitutes.
It was, indeed, precisely because the retarded were looked on as major contributors to the breakdown of moral and social order that they became the targets of America’s own eugenics movement. During the 20′s and 30′s, the “science” of eugenics had attained a measure of prominence in this country, and the roster of its advocates included many respected social reformers. Eugenics theory identified a correlation between high rates of immigration and what was seen as an upsurge of defective births, and it is likely that alarm over these “findings” played a role in the severe restrictions placed on immigration during the 1920′s. Another pillar of the eugenics program, forced sterilization of the retarded and certain groups of physically handicapped adults, also made its mark on American social policy in that period. Eventually, both popular and expert opinion turned against sterilization, and in the wake of World War II and the Holocaust, eugenically based theories died out almost completely.
Until the 1960′s, the institution system served as America’s answer to the challenge of the mentally retarded. While the quality of care varied considerably from one facility to another, the system as a whole marked a vast improvement over previous practice.
During the 60′s, however, experts began to question both the efficiency and the humanity of shutting the retarded away for what often amounted to their entire lives. Adding to the alarm was the exposure of indecent conditions at various state-run facilities, the most notorious case in New York being the Willowbrook State School in Staten Island. Soon, tentative questions burgeoned into a politicized movement, one which demanded that residents of large institutions be transferred to small-scale residential settings in local communities and that, where feasible, large institutions be closed.
Critical to the success of this initiative was the political environment of the period. The aftermath of the civil-rights movement saw an explosion of particularist agendas and of demands for group rights and protections. At the same time, social scientists were developing theories which equated large institutions with penitentiaries. The courts played an important role in the process, mandating costly corrections in state institutions of all kinds, and forbidding placements in facilities where conditions were judged to be substandard.
We have now had over a quarter-century to assess the results of deinstitutionalization. In the case of the mentally ill, it has brought us the permanent army of the homeless deranged who haunt America’s urban landscape. But in the case of the retarded, the experiment would seem to have been a notable success—indeed, a major achievement of liberal reform.
I strongly suspect that the smooth transition to deinstitutionalization of the retarded is due mainly to their manifest harmlessness—and also to their manifest vulnerability. Where the mentally ill have often been set adrift without a guarantee of a residence or social services, the retarded are never returned to a local community without a place to live—often near the homes of parents or other relatives—and the necessary adult supervision. It has also proved easier to persuade communities to accept group homes for the retarded than similar facilities for the mentally ill. To be sure, when done properly, deinstitutionalization can be expensive; the early promises of millions in savings—which made the move appealing to elected officials—have rarely materialized. But on the whole, deinstitutionalization has evolved from a risky experiment into an accepted and noncontroversial policy which enjoys wide support from politicians, families of the retarded, and professionals in the field.
In contrast to the success of deinstitutionalization, another major government initiative for the retarded—“special education”—has become a source of controversy and criticism. Until the mid-70′s, the education of retarded and other handicapped children was left to the discretion of the states, where it varied substantially in quantity and quality. But in 1975 Congress passed legislation mandating that the public schools provide a suitable education for all children, no matter how severe their handir cap, or else pay for the child’s education in a private school.
Although the purpose was to see to the needs of a core group—the mentally retarded plus children with real physical disabilities or emotional troubles—the ensuing years have witnessed a huge increase in students diagnosed as “learning disabled” and referred to special-education programs. Under any circumstances, special education is an expensive proposition—class sizes are small and students have access to a variety of therapists, aides, and counselors—and the program has come to consume a constantly increasing percentage of the public-school budget. Thanks to the ever-expanding definition of “learning disabled” (fully 17 percent of students in Massachusetts have been so diagnosed) and the well-established practice of assigning “problem” students to special-education classes, enrollment shows no sign of stabilizing, much less declining.
In the meantime, another and potentially more serious threat has materialized from the opposite direction, in the form of what is known as the inclusion doctrine. According to this doctrine, children are poorly served by separate classes. Supporters of inclusion are pressing for changes which would ultimately lead to the replacement of special education by a system in which the handicapped would be integrated into normal school settings.
The idea of inclusion is not without merit. Some children may indeed be able to participate in the competitive environment of a normal classroom; this is particularly the case with children who suffer from certain physical disabilities, and young children who are only mildly retarded. But for those who advocate “full inclusion,” such commonsense measures are not enough. For them, the very concept of retardation is “socially constructed”: any perceived differences between those whom society designates retarded and those whom it designates normal are just that—matters of perception. On the basis of such reasoning, some theorists of inclusion characterize special education as the moral equivalent of apartheid, or have even likened it to slavery. It follows that the remedy is to include the handicapped in the entire range of school activities.
If there is one thing we have learned over the past quarter-century, it is that no idea which travels under the banner of the rights and dignity of the individual, especially the individual who carries the victim label, is too radical, unworkable, or unwise to be given respectful consideration by people who should know better. Thus it is with inclusion. Just as multiculturalism insinuated itself into the policy of elite universities with hardly a murmur of public discussion, inclusion is spreading from one school system to the next, pushed along by a small but vocal group of parent advocates, a few social scientists, a scattering of court decisions, school officials eager to adopt it as an instrument for budget control, and, finally, the Clinton administration’s Department of Education.
The administration has, in fact, elevated inclusion to something of a moral crusade. Tom Hehir, director of special education for the Department of Education, views disabled people, including the retarded, as a “distinct minority who have been historically subject to discrimination and have now gained full civil rights.” The controversy over inclusion, Hehir adds, “is about the idea of it, not the practice of it. Where inclusion has been done well, you don’t find teachers or parents adamantly against it.”
I find these words chilling. How often have we heard that some policy has failed, or some program has fallen short, only because funding is insufficient, or implementation has been poor, or administrative procedures are flawed—in short, that everything is to blame but the concept itself? “We don’t debate rights in this country,” says Hehir. Unfortunately, in this he is correct. Once a social program has been defined as a right, it is extremely difficult to conduct a rational discussion on its merits, particularly when its beneficiaries constitute a class of victims.
And yet bad policies, perpetuated because presumed rights are involved, have over and over again done serious damage to the very institutions that are crucial to the welfare of the group supposedly being benefited. Next to the family, probably no institution has suffered more in this respect than the public schools, and there is every reason to expect that full inclusion of students with significant disabilities will inflict still further harm. Our schools are already charged with promoting racial understanding, combating sexual harassment, educating students about AIDS, discouraging drug and alcohol use, and enhancing self-esteem (in addition to preventing simple violence). These days they are also, properly, facing growing demands to toughen standards, abolish “social” promotions, institute compulsory study of laboratory science and foreign languages, and train students for the global high-technology economy of the future.
With pressures like these, one might expect school boards and administrators to rank among the most vocal critics of radical inclusion formulas. In fact, however, they have been surprisingly supportive of the idea. Some school boards have capitulated to demands for inclusion out of nervousness over threatened litigation. Others have cynically embraced the idea as a cost-saving mechanism (it would do away with separate classes for the disabled). Still others are held in thrall by ideology. A report by the National Association of State Boards of Education endorses inclusion on the sweeping grounds of educational reform, civil rights, and equity. Amazingly, the report ignores the critical question of how the fully inclusive school is to cope with autistic children, or children who exhibit strange and inappropriate behavior, who become violent when frustrated, who are chronically disruptive, or who require exceptional medical attention. No wonder middle-class parents are beginning to cite the ever growing emphasis on “special needs” as among the reasons for transferring their own children from public to private schools.
For us, as Mark’s parents, inclusion involves much more than an abstract argument over educational policy. Were New York to take this path, Mark would, according to the logic of inclusion, be transferred from his present school, which is devoted solely to special-education classes, and placed in a regular classroom in our neighborhood high school, a forbidding building with a rough and intimidating student body. Because of his precarious sense of balance and lack of coordination, Mark is physically quite fearful; he goes into a panic if accosted by overly playful small dogs. For him, inclusion in a big-city high school would be an exercise in terror.
Mark would also present his new teachers and classmates with a set of unique problems. He demands constant supervision; he is easily distracted, and requires quite a bit of prodding, vocal encouragement, and physical assistance. Much of his education consists of lessons in “life skills,” including dressing and even using the toilet. Although never violent or aggressively recalcitrant, he does have his own special strategies of resistance. Persuading him to do such elementary tasks as cleaning a table or loading a washing machine takes immense patience and a willingness to repeat the activity, again and again and again, until he finally accepts the routine.
The advocates of full inclusion speak glibly of giving teachers the training necessary to cope with the immense variety of challenges which handicapped children bring to the classroom. Yetno amount of training could prepare a regular teacher for Mark. In our experience, the requisite expertise and commitment are found only among teachers who have chosen to specialize in the handicapped.
Through Mark, our family has experienced, up close and personal, the vagaries of American social policy during a period of bitter division over practically every question of domestic life. Can we say, on the basis of our experience, that these social policies work? Yes and no. Deinstitutionalization of the retarded—again, not of the mentally ill—ranks as one of the more impressive examples of social reform. Special education, although subject to very serious abuse and overdue for reform, is by no means the unmitigated disaster its critics charge. But the drive to ditch this flawed program in favor of a radical alternative will almost certainly result in just such a disaster.
All in all, America’s treatment of the retarded in recent decades offers an object lesson in the promotion of that much-sought-after social good, family values. One can only hope that, in this instance at least, we will not repeat the pattern—so glaringly obvious in the welfare mess and elsewhere—of sabotaging our genuine achievements in the pursuit of worthy-sounding but deeply wrongheaded ideas.