The author, a life member of the American Association on Mental Retardation, has reflected on over 30 years of primary engagement in mental retardation and inventoried what he believes are certain changes for the better and for the worse that have occurred since the 1950s as well as certain things that have not changed. Some action implications were sketched.
The Context and Nature of These Reflections
After 15 years of existence, the (Canadian) National Institute on Mental Retardation in Toronto was rededicated on June 13, 1986, as the G. Allan Roeher Institute. Those assembled for the occasion had reason to both celebrate and mourn, especially the tragic and premature death on June 2, 1983, of Roeher, who had been the Institute's first director.
A number of speeches were given, including those by Rosemary and Gunnar Dybwad and myself. The three of us had been designated the first fellows of the Institute. What follows is an edited version of my presentation. This presentation is most certainly not meant to be a history of the field of mental retardation during my lifetime, but an extremely selective presentation of events as I experienced them and my interpretations thereof. Not only do many significant events and persons go unmentioned in this brief account, but so do even some of my own more noteworthy experiences. Thus, the limitations imposed upon these reflections by their original context, and by the brevity of an article format, need to be considered.
A personal perspective on historical events often brings an immediacy and interpretive element that is typically absent from the abstract recitation of history by its later writers/interpreters. At the same time, history seen through the eyes of one person will probably never be the same as the history that finds its way into the texts of posterity. For this, there are numerous reasons, among which are the following. (a) A single individual experiences only a tiny slice of the totality of historical realities, and, thus, it would be absurd to expect too much from a personal history. But again, on the other hand, the totality of history consists of the interpreted summation of personal experiences. (b) A personal history has the potential disadvantage of suffering from distortions and/or, if written retrospectively, of selective or faulty memory. (c) However, history as experienced by one of its participants often also contains facts that may be filtered out of “official” histories, which commonly serve hidden purposes. For instance, it has often been said that history gets written by either the winners or survivors; and, at any rate, it almost always gets written “from the top down” instead of “the bottom up.” In our own field, this is exemplified by the fact that it is not retarded people who have written their own history and that much of that history has been written by those who were among their oppressors.
Selected Memories of My Career
“May you live in interesting times” is a curse variously said to be Jewish or Chinese. Because both my times and my life were very interesting, I began writing on my autobiography in 1984. Particularly in earlier years, I kept extensive diary notes of conferences, meetings, and visits. I found them to be very helpful in preparing these remarks.
In my childhood, I had had many encounters with handicapped persons, including some retarded ones, but these had not been well interpreted to me and mostly stood out as memorable mysteries. It was in fall of 1955 that I entered upon human service when I became a graduate student in clinical psychology and education at St. Louis University. I soon began to have professional contact with handicapped and retarded people in my various traineeships and practicum experiences, but it was in fall of 1957 that I entered the study of mental retardation specifically, as only the 15th student to be enrolled anywhere in the world in a program (at George Peabody College, which has since become part of Vanderbilt University) designed to groom psychologists for doctoral degrees with mental retardation as the major focus and a career orientation to research in that area. At that time, the English language research literature on the learning of retarded people consisted of roughly 20 publications, and anybody who knew those was a world expert on the topic. Today, I would estimate that this many studies on that topic come out roughly every 2 weeks.
People who have come into the mental retardation scene in recent years simply cannot begin to imagine the conditions that prevailed in mental retardation not only during the 1950s, but even through the 1960s or even later. For many decades, people in much of society, and perhaps even more so in human services, despised the retarded and wanted to have absolutely nothing to do with them. It was taught that mental retardation was hopeless and that the best thing was for retarded persons to be institutionalized as soon as possible. Psychological test reports (even for mildly retarded persons) commonly contained phrases to the effect that “This person is mentally defective and therefore should be institutionalized.”
In this kind of milieu, services for handicapped people were either nonexistent, or pretty poor. For instance, most physicians were not very helpful, and many gave parents invalid information and bad advice. Often, parents were treated as mental cases, on the assumption that either it was people who “were mental” who had handicapped children or that if one had a handicapped child, that would make one “mental.”
Families were deeply ashamed of having retarded children and often kept it a secret. Parents of that era had to cope not only with whatever challenges a handicapped child would present under the best of circumstances, and not only with the then prevailing lack of services, and not only with societal rejection of themselves and their handicapped child; they were also faced, in the vast majority of instances, with their own negative attitudes, which quite understandably were those of their larger society. Those experiences left few parents of that era without major mental “mix-ups.” Even among the leaders in the parent movement, very few seemed to be able to eventually struggle free from their inner conflicts, in contrast to the more matter-of-fact stance of many parents today. Even the early books written by parents of retarded persons that made a positive contribution were marked by the conflicted attitudes of the writers. (I have reviewed the problematic nature of most of these pioneer books in Wolfensberger, 1967. It is interesting that the earliest books by siblings of retarded persons displayed very little of such conflicts.)
In order to understand the overwhelmingly negative attitudes of even the leaders in the field of mental retardation toward retarded people prior to around 1960 or even 1970, we have to understand one fact: Several generations of such leaders had not seen retarded people in any positive contexts. Most commonly, they had seen them in miserable institutional settings. Occasionally, they saw them in wretched community contexts, such as in the homes of the multigenerationally poor. Chances are that none of these leaders had seen retarded persons who had received the benefits of intensive positive expectations in both a favorable home environment and in a developmental program, and who had been surrounded by people who held positive attitudes toward them and extended to them opportunities for positive participation. Not surprisingly, leaders (and others too) in the field thus saw retarded people pretty much at their worst, and this profoundly shaped their entire perceptions and attitudes so that it became literally inconceivable for them to imagine alternatives.
All this was still the case with almost all leaders when I came into the field. Hardly any had seen any of the positive things that I just mentioned, and of those who had not, hardly any could even conceive of them. Their thinking could soar no further than to imagine picayune improvements in institutional settings. They were even incapable, or scarcely capable, of imagining small institutions, and the conceptualization of group homes was entirely beyond them. The latter probably also explains why the small urban community colonies (in contrast to isolated and sometimes large “farm colonies”) that had existed for several decades since the early 1900s in states such as New York were hardly acknowledged in the literature of the 1950s and 1960s, or held up as models, though they could actually have served as conceptual pointers and partial models of the group homes that started developing in the late 1960s. Instead, these “colonies” were systematically abolished.
Most institutions then were large, crowded, and just plain horrible. One was confronted by large buildings that were stuffed full of truly pitiful human beings in a state of abandonment, desolation, and largely gross nonsocialization. In the large dormitories, one could behold a sea of beds, one next to the other, with virtually no space in between and scarcely any other furniture. The buildings—even for infants and young children—were almost without exception bare of all adornments and monotonous in color. During the day, most of the residents were usually herded together in one space, such as the dayroom, many of them sitting on wooden benches, or laying on the floor, or moving about aimlessly.
A terrible cacophony of noises prevailed in many units of most institutions, and the stench in most buildings was absolutely overwhelming. In institution after institution, one of the most unforgettable phenomena—a virtual universal—was a characteristic stench produced by a mixture of stale feces, decayed urine, bodies that had not been washed for long periods of time, and perspiration. The odor had eaten into the very walls of these buildings so that even in areas where no residents were present, the stench was often intolerable. Merely from breathing the prevailing odor, one became malodorous oneself, with the stench coming out of one's nostrils and pores and permeating one's clothing. Thus, one began to equate retarded people with that particular stench—and that was the image held by so many people of what mental retardation and retarded people were like. The occasional living units of relatively mildly retarded adults who carried out institutional work tasks on a routine basis were considered a major accomplishment.
The children's living units were perhaps the most heartbreaking. Almost everywhere the children would pounce upon any visitor who entered and cling to him or her in their famine for affection. A visitor would be like a queen bee, with little bees climbing all over him or her. Upon leaving the unit, it was a major chore to pry little hands, arms, and sometimes legs off one's body and clothes so that one could depart. It was common for visitors to whom this was a new experience to depart such units in tears, or close to it.
Many large institutions had zero, or only one, perhaps two, or rarely even three registered nurses on staff. An institution for 2,000 people might have a single psychologist, and he or she may have had no more than a master's degree. Attendants were often drawn from near the bottom stratum of society—people desperate for a job who often would not be able to get another one; and in some institutions, they had to work 60 or more hours a week at minimum or even subminimum wage. Many of them lacked basic literacy. Even during the late 1960s, I visited one building in Nebraska's old state institution that had almost 300 severely retarded ambulatory adults on three floors, with only four attendants on duty for the whole building. The cleansing of residents often resembled the procedures used to clean cattle. Being placed in an impossible situation, many attendants became utterly indifferent at best and brutal at worst and let out their frustration on the hapless residents, often even recruiting less severely impaired resident helpers to terrorize, and beat up, the more severely impaired ones.
Half Moon Haven is a book that may be unique in depicting the life of institutions and their attendants (some vagabonding from one institution to another) during the 1950s, and perhaps a bit earlier. It was written by Russ (1959) as if it were fiction—probably in order to avoid legal complications—but I was told (and believe) that it was based on real life. I was also told, though I do not remember by whom, that it was based at least in part on the Letchworth Village institution in New York State.
The institutional conditions aroused compassion in visitors, but at the same time also gave them the impression that retarded people were naturally the way they were seen in these institutions and, therefore, largely belonged there. Also, many people in human services had their major exposure to the retarded by either visiting, or working in, institutions, and what they saw there shaped their minds. Today, it is a bit difficult to appreciate that institution tours were one of the major out-of-classroom training devices for people in many human service professions. And, furthermore, these tours were not meant to teach how bad institutions were or could be but were meant to serve as valid and worthwhile technical instruction.
The impact of such tours was exemplified by one tour I conducted at the Plymouth State Home and Training School in Michigan in 1964 for a relatively enlightened group of University of Michigan graduate students in psychology. Although this institution was at that time one of the newest and probably the best-funded and best-staffed institution in the United States, one of the students fainted and slowly crumpled along a wall to the floor. Another hurried to the closest drinking fountain and vomited into it. What attitude improvements was one to expect for most people if their response was one of nausea and the urge to flee? And what false doctrine we had been taught, namely, that exposure to retarded people via institutional tours would change people's attitudes for the better!
Even though all but a few public institutions of those days were snake pits at best and hell holes at worst, it was almost impossible to find any professional forum in the field for any critique of these institutions, their assumptions, programs, or functionaries. One can identify at least five reasons for this.
For a long time, the majority of workers in the field, and virtually all the leaders, worked in and for institutions, and saw criticism of institutions as a critique of themselves. It helps here to recall that at their peak in the early 1970s, the so-called state schools held about 200,000 residents, not to mention those in other private and public institutions.
The vast majority of workers also held very negative attitudes toward retarded people, usually influenced by the worst elements of the eugenic alarm era. For instance, consider that the first book on mental retardation I ever read (as an undergraduate, around 1953), was Cyril Burt's The Subnormal Mind (1935), and Burt was an elitist who referred to retarded children as monkeys and chimpanzees and who later was also unmasked as a fraud. (The exposé that occurred after Burt's death, and the damage it did, became one of the causes célèbres of scholarship. See Anonymous, 1986, for a brief sketch.) Thus, attitudes that were merely infantilizing and condescending, viewing the retarded person as an eternal child or holy innocent, were pretty much among the more benign ones around.
Both of these points implied that most people really went along with the prevailing patterns that translated negative attitudes into negative life experiences for retarded persons, and some of the key decision-makers were, in fact, among the worst dehumanizers in the field.
Institution personnel had a strangle-hold on the American Association on Mental Deficiency (as it was then called, referred to as AAMD hereafter), and dominated its offices and convention programs. This remained true even in the approximately 2 decades during which other personnel (especially in special education) had begun to outnumber institution workers.
As mentioned previously, the workers in the field could not really imagine much of an alternative to what they experienced, and because criticism implied that there might be a significantly different way, the critique had to be declared to be invalid and, thus, hardly worthy of a forum, and critics were systematically discredited.
Those who had some discretion to grant critics admission to professional (and sometimes other public) forums were, in my opinion, beset by fear of incurring censure from their peers. This appears to have been the case with some of the journal editors of those days. I remember the endless difficulties I had having some of my early manuscripts accepted if they contained anything critical of institutions or the status quo in general, how the referees commented negatively either on those elements or on the entire manuscript, and what virulent attacks I was subjected to when I wrote or spoke truthfully about the institutional scene. At one convention in the very early 1970s of what was then the National Association for Retarded Children—(NARC) (where there was much more enlightenment than in the AAMD), one state ARC executive even shook his fist at me when I came into a plenary session, though I merely came as a member rather than to speak. But I must admit that despite all this, there were several editors who evidenced courage, and after repeated resubmissions (and usually a “down-editing”) of those of my works that contained explicit or implicit critiques, most eventually did get published—often contrary to the predominant advice of the referees—though of course much delayed by these obstacles. Although the forums of our field have opened up considerably, fear of peer censure still plays a prominent role.
As to schooling of retarded children, three patterns defined most of it. (a) Many were simply excluded, and got little or no schooling. (b) Others were carried in the regular grades, but as rejected isolates, often in the back row, commonly slipping progressively behind in grade level until they dropped out. (c) Finally, one major educational strategy consisted of segregated education, in part in entirely separate schools (sometimes also separate buildings on the grounds of regular schools), and only gradually in separate classes sprinkled among regular ones, though even then such classes were usually in less valued or more distancing locations, as in the basement next to the boiler room, at the end of a hall, etc. A general rule of thumb was that the more handicapped a child was, the more likely the child was to be segregated or excluded.
However, until the 1950s, it was also very likely that a handicapped child would die early. Children who today have an excellent chance of growing into maturity and old age often did not survive childhood in the “bad old days.” Prime examples were children with Down syndrome or hydrocephaly. This also helps explain why prior to the 1950s, it was very unusual for institutions for the mentally retarded to admit children below school age.
When handicapped children were excluded from education, two major rationales were commonly advanced. In the case of more severely impaired children, it was said that they would not benefit much from schooling anyway. In the case of less severely impaired children, it was said that there was no money for their education. Strangely enough, in this latter case, I never heard it explained why a school system would not at least spend the same per diem amount of money on the education of a handicapped child as on the education of nonhandicapped ones. After all, this would have enabled the schools to at least provide a shorter school day or shorter school year rather than none at all. Thus, the no-money argument was really a front for a desire to exclude such children; and, in turn, this desire must almost certainly have been based on a dislike for retarded people.
Community educational day programs for retarded children had, of course, existed in the United States for some time. The first public school class for retarded students reportedly started in 1896. But as late as 1936, there were only 100,000 pupils in public school special education programs of all types, with retarded children thus being only a fraction thereof (President's Committee on Mental Retardation, 1977). The upswing in schooling for the retarded accelerated in the 1950s as parent organizations got started. Opposed by the schools, they in most cases started their own school programs, mostly for the more severely retarded. But for some time yet, many locales had no developmental/educational provisions for the more severely retarded, or far too few to meet the need, even as classes for the mildly retarded started to be fairly common by the late 1950s.
Regardless of whether education was provided by parent associations or by the schools and regardless of whether it was for the less impaired or the more impaired, expectations for achievement were very low indeed. Though this was commonly denied, programs for mildly retarded students consisted primarily of what was called the “watered-down curriculum,” that is, an unimaginative, thinner, slower, and simpler version of a curriculum for ordinary children of a younger age. In programs for the more severely retarded pupils, the same subject matter was usually taught year after year to the same people, without really much progress made. Most of these latter programs operated for a very short school year and only for a few hours a week. A common pattern was 2 or 3 sessions a week of 2 to 3 hours each. Even as late as the 1970s—and later—one might walk into a building where basic things such as colors were being taught to children of preschool age, school-aged children, young adults, and middle-aged adults, all because it had never been taught right in the first place. A 1988 Brookes Publishing Company flyer for a 1987 book by Wilcox and Bellamy implies that one can still encounter the same situation even today. The flyer asks, “Tired of seeing adolescents and young adults with severe disabilities learning ‘readiness skills’ but never making it into the community to perform them in real activities?”
What characterized the education of retarded children for a long time were relatively kindly but incompetent and ill-prepared female (almost exclusively) teachers in mid- or late life. If they had any education background at all, they had often “flunked out” as teachers in the regular stream of education, often because of “nervous conditions.” But one impressively positive thing about virtually all educational programs was that they stood in profound contrast to the institutional situation in (a) their kindness and (b) in the fact that they usually took place in something that would be recognized by most people as a normative educational context, whereas institutional settings in the 1950s and 1960s were almost totally bereft of positive normative and cultural elements. In such settings, neither sleeping spaces, living spaces, eating spaces, toileting and bathing spaces, or passage spaces looked anything like the bedrooms, living rooms, dining rooms/kitchens, bathrooms, and hallways that most citizens would encounter in most of their lives. There was only one place in most institutions that was what I call “positively encultured,” and that would have been recognized as “what I had”: the classrooms, or perhaps the entire school if there was one.
In 1962–1963, I was fortunate enough to be able to spend a year of postdoctoral study as a U.S. National Institute of Health scholar in England, under the tutelage of Jack Tizard and Neil O'Connor at the Maudsley (mental) Hospital in London, and in this connection I took the opportunity to tour services across England, Scotland, Northern Ireland, Eire, Belgium, Germany, and Switzerland. I took a large number of slides of the meritorious practices that I encountered. England in particular was then at the leading edge in services to retarded people, and some of my pictures captured spectacular achievements (for those days) in community services, “hostels,” sheltered and industrial work, and even institutions. When I came back to the United States, I began to give presentations based on these pictures on “what could be done.” Being then still a bit naive, I was both consternated, confused, and angry at the mostly negative response all this received. One of the most honored members of the AAMD (in my biography, I may use real names!) who attended one of these presentations got up and said, “This was tried in the U.S. thirty years ago, it didn't work then, and it's not going to work now.” Also, at one such presentation after another, I was criticized for using “foreign” slides.
Stung to the quick, I began at great pains to collect slides of some promising developments in the United States, and in 1965, I was finally ready to give my first all-U.S. slide-based presentation—but there was one problem I had failed to anticipate: my presentation was to take place in Canada.
Like many Americans, I used to have only the vaguest awareness of Canada. Perhaps my earliest consciousness of Canada had to do with the fact that one of my most important professors during my doctoral studies at George Peabody College in Nashville was Lloyd Dunn, and we all knew that he hailed from a Canadian place with the unlikely name of Saskatoon (we drew out the -oon sound to make it even more so), Saskatchewan, which we students thought was absolutely hilarious. The conference I alluded to was the Region 8 (North Central) conference of the AAMD to be held in Winnipeg that year. One of the persons who had become one of the most influential people in mental retardation in Manitoba, and was to remain so for almost 20 years, jumped up and shouted that because the slides were from the United States, the lessons did not apply to Manitoba. A fair amount of applause and “hear, hear” issued from the audience. This taught me to anticipate arguments such as, “Merely because it is working in the Bronx does not mean that it can ever work in Manhattan.”
A few years later, in October 1969, I gave an address at the NARC conference in Miami, and at the end of my presentation, two women came up who identified themselves as in charge of the program committee of the Canadian Association for the Mentally Retarded (CAMR) for the next (1970) annual convention in Vancouver, and asked whether I would consider giving some version of this presentation there as a keynote address. This was one of the things that launched me into major contact with the Canadian scene. (The Vancouver address was published [Wolfensberger, 1973a].) My diary mentioned the people I met at Vancouver, and my impressions of them. The list reads like a “Who's Who” of the Canadian leadership of that time.
At that conference, I met privately with G. Allan Roeher, executive director of the professional–technical arm of CAMR, the National Institute on Mental Retardation (NIMR), and several of the senior CAMR officers who were very much concerned with a major new focused program thrust for the association, which later turned out to be ComServ (i.e., a scheme to introduce the concept of unitary comprehensive regional service systems into Canada and to establish several prototypes thereof as models to other localities).
There were several impressions I gained of the Canadian scene from my early contact with it.
My Vancouver diary notes said that the conference and its leaders lagged about 5 to 10 years behind the United States scene, that many people were at the stage of “isn't it wonderful that the retarded can do anything!” and that many people were using the right words but had retarded concepts of implementation. In fact, for several years thereafter, I had to contend with Canadians boasting that they had “integrated” schools, by which they meant segregated classes in regular schools, which had been a common pattern of special education in many parts of the United States for decades.
Although there seemed to be a lag, there also seemed to be greater openness to new ideas and a readiness to respond to enlightened leadership.
Canada had then, and still has, what one might call “overseeability,” that is, knowledgeable people could know pretty much what was going on in each of the provinces and who the key actors were. In the United States, this had long been virtually impossible.
There was still a bit of an old-world atmosphere and quaintness, evidenced by things such as the unfailing toast to the Queen—even if only with water—at any kind of formal occasion. Relatedly, much more courtesy was extended to me than in the United States, despite my then “way-out” ideas and proposals.
My next major encounter with Allan Roeher occurred in Kansas City in January 1971 when he came to one of the very first Citizen Advocacy workshops that I started giving. On the way back, Roeher and I attended a major presentation on normalization by Bengt Nirje in Lincoln, Nebraska. Then Robert Perske (who lived in Topeka, Kansas, at that time) joined us, and all four of us came to Omaha (where I lived) where I guided them on a multi-day tour of the new ENCOR service system in the Greater Omaha area, of which I had been one of the major architects, that was apparently the first service scheme in the world that was truly systemic, community-based, normalization-ideologized, and tending toward comprehensiveness. They were much impressed.
By the way, leaders could learn much from the following strategy of Roeher. He did a lot of traveling with an open mind in order to acquaint himself with what was going on in the frontiers of the field, what might define positive future trends, and what should be promoted in Canada. This was one of the reasons why he had come to the Citizen Advocacy conference and why he took the trouble to also come to Lincoln to hear Nirje and to Omaha to take a look at the ENCOR system.
It was on this Omaha visit that Roeher initiated efforts to get me to come to Canada. At first, I had not taken this too seriously, but because at about that time, the psychiatric old guard at the Nebraska Psychiatric Institute where I worked began to hassle me grievously, I eventually changed my mind and worked out an arrangement with him whereby I would join NIMR in Toronto—according to my own stipulation, for no more than 2 years—in order to promote the concept of comprehensive normalization-based community service systems. Accordingly, I went to NIMR from 1971 to 1973 under the splendidly ambiguous cover of a “visiting scholar.”
Roeher afforded me increasing scope in developing and promoting the ComServ idea. One of my highest priorities for doing this was by means of building up relatively ideologized and skilled leadership, which was in extremely short supply at that time. To this end, I leaned heavily on strategies of staff recruitment and short workshops. Because my stay would be short, I decided to adopt a principle well-known in organizational dynamics but not outside of it, namely, that decisions dealing with personnel retention were of much more decisive impact than those of initial selection. In other words, if one made a recruiting error, one needed to undo it as soon as possible by discontinuing the person's tenure in that particular position and recruiting someone else. Thus, even if one made a series of errors, one still had a good likelihood of recruiting a suitable person in relatively short order. Hardly anybody at NIMR or in its affiliated circles understood this. What they saw was an awful lot of fur flying and people coming and going at a dizzying speed; and a lot of people thought that this was pretty bad. However, by the time I left 2 years later, I had in fact been successful in building up a very badly needed cadre of committed persons able to function fairly competently on various levels of leadership.
I also decided that I would do everything I could to bridge some of the gaps, and heal some of the alienation, between the French-Canadian constituency of the association and the Anglo one. This is why I decided that I would not even consider someone for the first position I filled who did not have at least a workable command of French. The people I recruited, helped recruit, or at least helped train in my 2 years in Canada became a cadre of very influential leadership, and many of them have filled key positions ever since.
An Inventory of What Has Changed, What Has Not, and What Is Good or Bad
I could recount many other events of interest, and am doing so in my autobiography (which may, however, never be published), but because this context demands brevity, I will devote the remaining space to an inventorization of a number of developments in mental retardation since the mid-1950s that I consider to have been major. The three lists to follow will, of course, differ in some major points from those that others would compile.
During my career, I certainly witnessed enormous developments in biomedical knowledge about mental retardation and in prevention and treatment. I saw the virtual disappearance of mental impairment due to congenital syphilis, hypothyroidism (cretinism), phenylketonuria, and uncontrolled hydrocephaly. Also, a large number of clinical syndromes associated with mental impairment have been either identified or clarified, and other medical developments have enabled treatments and life extensions, one spectacular instance being in Down's syndrome.
The amount of money spent on mental retardation has skyrocketed. For instance, when I visited Mississippi's only state institution for the retarded in 1966, the per diem expenditure was $2.30, and only 6 states spent more than $10. But already around 1980, there were some institutions that spent more than $100 per day; and by 1989, the average cost per resident in the mental retardation institutions of the state of New York was $154,000.
With the dramatic increase in funding came an equally dramatic increase in the sheer amount and variety of services. Also, more types of services are available now to support families with handicapped children, such as respite services, specialized child-sitting, and other inhome supports, though these are still fewer than are needed.
Universal education has, for all practical purposes, been attained, not only for mildly retarded youths but for severely retarded ones as well, though we still occasionally hear of efforts to exclude some child with multiple complications from the schools or from some educational provision to which the child is entitled.
Today, not only a few visionaries, but most people in the field, as well as the general public, are aware that retarded people have much greater performance capacity than had been ascribed to them. Almost everybody believes today that at least a significant proportion of retarded persons can live in culturally normative ways in culturally normative contexts in the community.
Not only are people aware that retarded people can live in the community, but retarded people who formerly would have been institutionalized are actually living in the community, both in supervised group residences and apartments, and on their own. Few people today, and especially few younger people, remember that with the exception of a few urban “colonies,” community residences for the retarded are essentially a development of the late 1960s, and, in most states, of the 1970s.
Most people recognize that a range of service accommodations is needed to meet the continuum of needs, though the full continuum needed is still not widely appreciated.
There has been a much-heightened consciousness on the part of a good proportion of service workers and families about the issue of social imagery, especially in the area of language usage, although much still remains to be done in the image area. How novel this is is underlined by the fact that until the terms image juxtaposition, and deviancy image juxtaposition were coined in 1975 (Wolfensberger & Glenn, 1975), no universally applicable language existed for dealing with this phenomenon; and the reality of image transfer was one of the most vehemently denied corollaries of the normalization principle. (In the earlier edition, Wolfensberger and Glenn, 1973, had used less universal, and less explicated, terms, such as image projection and social interpretation.) This is all the more amazing (and revealing) when one considers that the attachment of negative imagery is one of the surest and most universal signs of social devaluation and takes place even when the devaluing persons are unaware of their devaluation, and deny it vigorously.
Also along the lines of image, both services and families have made dramatic improvements in fostering the positive personal appearance of retarded people, though much still remains to be done in this domain as well.
Mentally retarded persons are positively active and visible in society.
Unlike prior to around 1960–1965, retarded persons have many active advocates on their behalf, including many committed service workers and independent voluntary advocates, such as citizen advocates. Although they are still relatively few, and small, there are now Citizen Advocacy offices scattered through almost all provinces and most states in North America and several other countries.
In the 1950s, mental retardation was a pariah field; since then, it has risen many notches and even overtaken mental health, the area that was so glamorous in the 1950s. In fact, the public now seems to view the mental health domain as only a notch above the street and prison scene.
One of the most heartwarming developments has been the large number of people in all strata of society who have extended a welcoming hand to retarded persons and who have even entered into some form of what around 1972 I began to call “life-sharing” with them. At one time, the idea of handicapped and nonhandicapped individuals residing together in a communal, rather than a we–staff/they–clients, atmosphere would have struck many people as unreal, utopian, or at least rare, if not outright undesirable. Today, such settings are relatively common, especially in community residences with retarded people, though public regulations have begun to work heavily against it. It is also no longer very difficult to find an adoptive home for retarded children, and a gratifying proportion of human service workers in mental retardation are engaging in some form of life-sharing outside their jobs. In fact, relatively many have themselves adopted retarded children; I have personally encountered hundreds of them. There are active life-sharing movements (l'Arche and Faith and Light are examples); some of these have been very visible and have inspired other people to undertake life-sharing themselves with retarded persons.
One important thing that we should note about the positive changes is that a remarkably small proportion were the result of significant research, scientific or technological developments. The overwhelming bulk of the improvements all derived from two states of mind that are available anytime anywhere to anybody: imagination and a humane attitude. Some of the measures derived from these states of mind cost a lot of money, but they did not require new scientific discoveries.
Some Old Problems That Are Still With Us
At the same time, a number of old problems (other than some already mentioned) remain. Among these are the following.
We still have a great many institutions—in fact, more than before; the fact that they are smaller could be viewed as positive, but, nevertheless, a large number of retarded people still live in institutions. However, the situation is deceptive because the institutions are not necessarily mental retardation ones. In the United States, there were over 100,000 retarded people during the late 1980s who lived in residences funded under nursing home categories, about half of those in “generic” nursing homes.
There still are an awful lot of people who believe that we will always need institutions for a certain proportion of retarded persons, and some people think that this proportion is relatively large.
There are still negative public attitudes and old stereotypes about, and these account for a proportion of the common neighborhood opposition to community residences.
Although in the community, there is greater physical presence and physical integration of retarded people, there is still very little true personal social integration and valued social participation. Even people in small and culturally normative community residences often lead very segregated lives (e.g., Kregel, Wehman, Seyfarth, & Marshall, 1986). Also a large proportion of adults with developmental handicaps have few or no friends, if one rules out other handicapped people, relatives, and paid service workers (e.g., Rosen & Burchard, 1990).
Despite an increase in consciousness about the issue, there is still widespread negative imaging of retarded people by society as a whole and by services to them, and a continuing contesting of the issue, especially in domains of imagery other than language.
There is still relatively little early education for handicapped youngsters, despite all of the P.L. 94–142 excitement.
Despite a great deal of integration in education via a wide range of arrangements, educational integration is nowhere near what we are often led to believe. For instance, congressional hearings in 1989 disclosed that many states still have entirely separate schools for retarded pupils, and many have large percentages of their retarded and other handicapped pupils in segregated classes.
Expectancies in many educational programs are still very low.
A very mixed bag is the vocational sector. Until recently (around 1985), it had been one of the least competent human service sectors in mental retardation. No matter how much was known or demonstrated, the vocational sector was like cold molasses, and it had been almost impossible to move the senior people of vocational programs toward more competent programming. Only since the advent of the so-called “supported employment” movement has there been dynamism in this sector, but how much will be accomplished by this thrust remains to be seen.
According to some estimates, between 74% and 86% of adults with“developmental disabilities” are unemployed (e.g., Kiernan & Bruininks, 1986).
The average service program of any type is mediocre. There are very few islands of service excellence, and such excellence tends to be short-lived. (More on this later.)
Despite the many improvements that have taken place, many new parents of handicapped children still experience problems very similar to those that were experienced by parents decades earlier. Many are still isolated. Many still get professional advice that is either technically invalid and/or is motivated by negative attitudes. Some parents continue to be hassled endlessly by school systems. Many parents also find that their son or daughter is now enmeshed in a human service culture where nothing ever seems to get done right, or at least not without endless efforts by competent allies of the impaired person. As one parent of an 18-year-old youth recently said, “the bad old days are yet in my future.”
New Problems That Have Arisen
In addition to these continuing problems, several relatively new ones have arisen, and these are intimately reflective of three megatrends.
A very big thing that is going wrong is that there has been an enormous value shift in our society, yet its nature, destructive impact, and future implications have still not become apparent to the vast majority of persons. In essence, our society has made up its collective mind to abandon its Judeo-Christian value underpinnings and to instead embrace a peculiar value system that, regardless of what it is called (I call it “modernism”), and how it is interpreted, is the following: de facto materialistic; individualistic in the self-centered and selfish sense; bent on maximum self-satisfaction of a heavily sensual nature that rejects all external moral authority as having any intrinsic legitimacy, which therefore embraces a value relativism, and ends up in an ethic of utilitarianism. It is this new “religion” of modernism that has given rise to a large scale of what I call “deathmaking”; more specifically, it has resulted in a commitment to Death on the very deepest level of what might be called the soul of our society. Everywhere we look, our world is rushing towards death and is doing so with great eagerness and as quickly as possible. Part of this death lust involves the destruction of all sorts of societally devalued people, but, of course, with all kinds of legitimizations, justifications, concealments, and detoxifications. As I have proclaimed for years, largely in vain: in the United States, the lives of at least 200,000 handicapped and/or devalued people are being significantly abbreviated every year, and the number might even be triple that if one includes the poor. In Canada, the respective proportion is probably a little lower, but not by much, and this is not exactly good news. (See my 1987 monograph-length elaboration of this genocidal development.)
A second overarching development has had a most peculiar result, namely, the total proportion of dependent, competency impaired, or societally devalued persons has not declined, despite the proliferation of services and service monies, and quite likely has actually significantly increased. In this context, I can only hint at why this is so; it has something to do with the fact that our society, within my own (exciting) lifetime, has turned from one in which the majority of labor was concerned with primary production (e.g., agriculture, mining, husbandry, fishing, construction, manufacture) to one in which such primary production occupies less than 20% of the labor force and is predicted to occupy as little as 10% by the year 2000. This kind of society unfortunately needs unproductive types of employment in order to circulate the wealth, and one of these types of employment happens to be human service—which can only play its new function and mission if it can focus on a large pool of people perceived and defined, as “needing” human services. Thus, the very service system that is supposed to be curative, therapeutic, and habilitational actually serves the concealed unconscious societal function of increasing, or at least maintaining, a certain needed—and in our case large—percentage of the population in a state of dependency. In fact, one reason our society can afford to make dead so many devalued people is that it manufactures new ones faster than it manages to kill them.
Very few people in society or human services understand this phenomenon, and whenever and wherever I try to explain it, even at great length, people concerned with human services simply cannot cope with the enormity and hiddenness of the reality—and of course, their own role in it. This includes almost the totality of our association membership. Yet reality it is, and it has the profoundest implications to human services. If we do not understand this phenomenon, then we will have absolutely no understanding of any number of major contemporary and future phenomena in human services and human dependency, and what is needed, and what will or will not work.
The same increase in technologization that has spawned a postprimary production society is resulting in an increase in the complexity of almost everything. In turn, this complexity creates unmanageabilities and, hence, massive failures that, in turn, almost always evoke the wrong types of responses, namely, yet more of what does not work, especially more technology, and ever more formalization, objectification, bureaucratization, with yet more failure at the next turn of trying to solve the problems.
These three megatrends are themselves both contributors and manifestations of a yet bigger reality that helps make these times so interesting. Namely, we are standing on the edge of a historical era of cataclysmic world events that will dwarf the horrors of even the last world war. The world and internal order, such as they were, are coming to an end. Our civilization is collapsing, and chaos is drawing near.
One manifestation of this is the declining capacity of most formal structures—and certainly so of formal human service organizations and structures—to function consciously, coherently, and adaptively. The failures of the human service structures can be recognized as particularly spectacular if one considers the amount of effort that goes into them. This is exemplified by a 30-year-old blind woman I knew who had had 300 human service workers in her life, only a few of whom actually did her any good, and whose life was still beset by all sorts of problems—many of which were the result of earlier human service interventions.
We need to be very clear that this means that less and less reliance can be placed on formal societal structures, including government, which many people treat as if it were God. For instance, government is ever less able to deliver on what it promises, and I suspect that for this reason, honesty in government and among political leaders has been declining sharply.
One type of formal structure that is doing extremely poorly is the movement founded by parents of retarded persons since roughly 1950. In fact, it displays signs of being critically ill. The associations—at least by and large—simply cannot or will not read the signs of our times, and so they flail about incoherently. Most of them will survive as pro forma organizations, that is, the shell will often survive, but not the soul, so to speak. In this regard, many of the things of which I warned as early as 1972 in Montreal in my keynote address at the conference of the International League of Societies for the Mentally Handicapped have come true. (This was published [Wolfensberger, 1973b] and more recently [Wolfensberger, 1984] updated.) Further, many of what we might call the newer “counter-association associations” and groups that have sprung up from disenchantment with the older national associations (in mental retardation, mental disorder, physical impairment, etc.) are also off-target, though usually not so far off as the associations that disappointed them.
All these things taken together could help one to understand the following other contemporary service-related phenomena.
Service abuse, once largely confined to mental retardation institutions, is sharply on the rise everywhere.
Many of the people who formerly lived in institutions, or would have lived in institutions, have been placed into another kind of institution, namely, nursing homes, as already mentioned. There, they are at least policy-wise less visible than they were in mental retardation institutions; in fact, it is very difficult to identify where retarded people are and what is happening to them. Often, their situation is not a good one, and, ironically, it is often inferior to what it would be even in the state mental retardation institutions of today.
The same kinds of people who formerly did bad things to retarded persons in institutions have simply turned around and thrust retarded adults out of programs and onto the streets. As might be expected, a certain proportion of such adults manage to cope with life, many just barely, many only for some years, fewer with remarkable success. However, another very large proportion do not cope at all, and many bad things happen to them. These include the following.
They are induced into the alcohol, drug, or violent street culture and often end up being violated or committing violence or other offenses themselves.
They end up in jails and prisons—perhaps even more so than formerly. In one of the most infamous maximum security prisons in New York State (Attica), there reportedly (Newsweek, September 7, 1981) have been as many as 200 disturbed or retarded prisoners at a time who had been dumped from institutions, some so handicapped that they could not eat independently. Judges have been throwing up their hands because it is often the human service system itself that brings charges against its own retarded clients. Often, this is done in the name of normalization! Wolfensberger for sure, and Nirje probably too, would turn in their graves if they were not still alive.
They are penurious, and end up homeless and hungry.
If they do have shelter, it is often of abysmally poor quality, such as in single-room boarding occupancy hotels, or in proprietary boarding homes, or in run-down rat- and roach-infested tenements.
They are idle, which often gets them into all sorts of other trouble.
They usually are very lonely.
A large proportion end up on psychoactive prescription drugs that destroy body and mind.
They often die as the result of all sorts of bad things, including the ones I have just mentioned, as well as because of poor hygiene, poor diet, poor health care, or freezing in the winter on the streets or even in their own places of residence.
The public has seen such a rise in incompetent people on the streets that a backlash has begun to set in, and there has even arisen a demand that some kinds of asylums be brought back. The deinstitutionalization era may be drawing to a close.
Thus, the kind of habilitation and program-supported community living that some of us had envisioned in the early days of the reform movement has been grossly perverted and sabotaged. Yet perversities of all sorts are widely being interpreted as glorious achievements, and as good for handicapped people. This includes certain perversities associated with the “rights” movement, the perversities of deathmaking, and certain perversities of language abuse. (The very grammatical rules that have apparently been practically forced upon the two journals of the American Association on Mental Retardation constitute a blatant form of lysenkoism, though this is by far among the milder manifestations of contemporary language degradation.)
One of the signs of our times and its collapsing social order is that insanity has quite literally become the norm. This insanity manifests itself in both “clinical” and “normative” ways. Aside from people's failure to recognize even the most obvious evidence of impending catastrophe, one normative manifestation is time illiteracy (i.e., a peculiar detachment from both the past and the future and an inability to read even the most blatant signs of one's time). One of its corollaries is loss of memory, which in turn takes several forms. (a) People are losing their recollection of the events of their own earlier lives. (b) People are losing their cultural memories. (c) Organizations are losing their organizational memories. In our own work, all this manifests itself in a remarkable incapacity of people and organizations to recall the past. In fact, I have concluded that what one might call the “memory horizon” of human services has shrunk to approximately 2 years. Few people in human services seem to be able to recall (at least correctly so) what happened before then, or to place it in any kind of meaningful perspective to the present or the future. Particularly in the domain of human service agencies, one of the contributors to this amnesia is staff turnover. Annual rates of 70% are common in entire systems, specific service settings may experience 400% turnover in a year, and, in recent years, the average tenure of state directors in charge of mental retardation programs is said to have been 22 months (Deputy Secretary Howse, 1986). Naturally, this makes for poor transmission of ideology, rationales, recounting of events, knowledge of clients, commitment to them, etc. This turnover is itself both a contributor to, and symptom of, “normative insanity” and human service structural collapse.
One of the symptoms of the profound dysfunctionality of the contemporary service structures is their abysmally low quality. This is exemplified by the following fact. Between Spring 1983 and June 1990, the Training Institute that I direct, or close associates of it, assessed the quality of 297 human services, of many kinds, in many fields, and across all of North America, as part of workshops training people in the use of the PASSING tool (Wolfensberger & Thomas, 1983). On a scale of minus 1,000 to plus 1,000 points, only 29 of these 297 services (or less than 10%) scored in the positive range, very few scored as high as + 100, and only one scored anywhere near the “expected” level of quality, which is + 695; the other top 28 were thus only in the “minimally acceptable” range. A minus score means that, in balance, a service does more harm than good, even if any good is indeed done. Of the 268 negative scores, 30 (or more than 10%) fell below 700 (i.e., below the negative mirror image of the highest scoring service). The bulk of the services assessed—164, or 55%—scored between −200 and −600. For the 115 community residences, the mean was −276; of 134 community day programs, the mean was −370.
Leaders at the Community Mental Handicap Education and Research Association in Britain, which also administers PASS (Wolfensberger & Glenn, 1975) and PASSING evaluations in large numbers, have reported similar results there, which reportedly will be published (Paul Williams, personal communications, 1987 through 1990).
Space here simply does not permit a systematic documentation of the normatively sorry state of service quality, but a sampling of such documentations can be obtained by inspecting the periodicals Augustus (previously Institutions etc., now defunct) and Training Institute Publication Series (TIPS, published by the institute I direct). Literally thousands of documentations are in my extensive archives.
Nor is that all. Because service structures are not only of abysmal quality but also insane, they do not even know what good service quality is—even if they see it. Agencies that score deep in the “atrocious” range of service quality, or even the “utterly atrocious” one, will loudly claim to be excellent. Indeed, people sometimes come from all over the world to learn from programs that score deep in the negative range, even as they were being trumpeted as national and international models. At the same time, services that have positive features sometimes surrender them voluntarily, either because they do not know that they have a good thing going or because they view an inferior substitute as superior.
What Will the Future Hold?
Thus, for the future, I see a very mixed picture that will deceive many. There will continue to be many positive elements, including even certain improvements, and these will blind a great many people to the larger dismal realities: continuance of many negative phenomena, some even getting worse, and new bad things developing. It will particularly blind many people to the overarching phenomena, most of which are very negative. We will continue to see retarded people participating in the life of community and society, but at the same time, we. are going to witness absolutely massive failures of both societal and human service structures as well as large-scale deathmaking of many retarded and other devalued people.
Implications to Action
This context can only deal summarily with action implications, which seem to fall into five related clusters.
Each of us needs to recognize what the societal megatrends really are and then formulate a conscious adaptive stance towards them.
We have realistic prospects for completing the feasible scope of integration of handicapped children into the educational process.
As for everything else, there will be some very hard times ahead where we will only be able to extract fractional and selective elements of the good life for many devalued people.
For instance, we need to vigorously oppose the deathmaking of devalued people that is reaching genocidal dimensions. We will be able to save many such people from the deathmakers, and we will lose many as well and ever more with every year.
We have to learn whom and what to put our trust in—and just as important—when and what not to. For instance, unless one abjures trust in government and agencies, one simply is not likely to direct sufficient determination to the creation of extra-structural personal commitments and relationships for impaired people that will be more and more needed. Because this call to greater recruitment of such commitments is so often misunderstood, I hasten to clarify that I do not equate it with greater reliance on nongovernmental agencies, or even a placement of hopes in formal voluntary associations such as the ARCs.
We need to make some adaptive decisions about the place of retarded people in our present type of economy that simply cannot and will not give paid work to a large proportion of handicapped people and that will have a very high rate of structural unemployment (i.e., unemployment that is built as an integral part into the very fiber of the economy). Few people know that official unemployment figures are misleading—almost fraudulently so (e.g., Briggs, 1987). In the United States, real unemployment has been around 10%, and the long-term trend is probably still going up. This is a problem that will beset many people other than retarded, or even handicapped, ones.
How one responds to each of these challenges will, in turn, have all sorts of other implications.
The fact that structures cannot be relied upon neither means that one should not confront them nor that one should not selectively use them. However, one should be clear as to which of the following four stances are called for. (a) Toward some structures, one should definitely take an explicit stand of contradiction and confrontation. (b) Others, one can simply ignore. (c) Yet others one uses selectively and with a clear vision as to what they are, what they can do, and what they cannot do. For instance, within the service empire, I prefer small residential settings to institutions, but at the same time, I am under no illusions as to the limitations of even this preferable alternative. (d) Some structures are worth struggling hard to protect as much and as long as possible or to advance into the identity of islands of excellence. But yet again, one should be under no illusions as to the longevity of such excellence in the contemporary context or even of one's successes in protecting the quality of structures that are not such islands but that still have some merit.
At any one time, only a miniscule proportion of the population has a clear vision of what the overarching and most significant realities of their own times are or what significant alternatives there could be. Much as the earlier leadership prior to the 1970s was caught up in a vicious circle of maladaptive socialization, so are the people, and many leaders, of our era. Because they live in a context of normative mass insanity, they cannot make any sense out of what is happening, and they become what I call “insanicerated” themselves, whereupon they contribute further to societal and human service insanity by acting incoherently and irrationally—yet it is those persons who do look globally at contemporary reality in its totality and interpret it truthfully who are dismissed as insane or irrelevant. (I constructed the term insanicerated from the Latin word, insanicere, which means something like “making unwell” or, if applied to the mind, “driving crazy.” Scholars of language know that without new terms, it is often not possible for people to perceive important realities or think afresh.)
Those persons who do grow into valid insights into the megatrends are often not the leaders.
Oniginally published in 1991: Mental Retardation, 29, 1–15.
Editor's Note. The author insists on the use of the terms retarded person and the mentally retarded, although the official language policy of Mental Retardation is such terminology as person with mental retardation. —L. R.