Issue at Point: The Dark Side of the Mirror.

03Original abstract

In 1949 I started a teaching career and serious study with the mentally retarded. In the subsequent years, I learned some valuable lessons concerning this human condition. Notably from the inspiration and clinical acumen of three great teachers and one institutional administrator, I began to understand and appreciate several major concepts concerning behavior—concepts that have been verified repeatedly during interactions with those generous children and families who welcomed my intrusions into their lives. I learned, or do not disbelieve, that:But there is a dark side of every mirror, a side beyond inspection because it is without thought. And while the optimism and pride—the light—of our lives is for the gains made in civil rights, for our achievements in mental health, for the concepts of the Declaration of Independence and the Constitution, surely a dark side in the evolution of our civilization in this mid-20th Century must be reserved for the deep unremitting, unrewarding lives of drudgery and pain we inflict upon our institutionalized brothers who are called severely mentally retarded.As some of you may know, I have recently completed a study of children and adults in state institutions for the mentally retarded (Christmas in Purgatory: A Photographic Essay on Mental Retardation. Boston: Allyn and Bacon, 1966). It was my purpose to describe in words and pictures the treatment of the retarded in these institutions, point out some of the more serious imperfections of their programs, and suggest ways to prevent or ameliorate problems. I expected that men of good will from all walks of life and all professions would then sit down at the planning table and seek viable solutions to the issues uncovered. It is not necessary here to discuss my findings, my recommendations, or the flood of extraordinarily encouraging mail and calls I received in response to this study. However, it may be instructive to mention that some of the reactions to the project were negative. I was subjected to mild direct hectoring and a good deal of indirect and second hand pejorative assaults. I had undertaken the study of institutions, and I had written the truth as plainly and as simply as I saw it. As some of you may know, there is little reward in exposing the ugliness (or beauty) of certain truths. It can be a dangerous business.For example, since the publication of our book I have been asked, rather hostily at times, how much money we would be receiving from royalties earned from the book and an article we had written for a national magazine. Because I feel this is not a question germane to the issues presented in our study, I have refrained from responding to this type of unwarranted question. Although I have not altered my feeling concerning this matter, several of my colleagues have prevailed upon me to discuss publicly this private issue. At the present time, we are obligated to repay $2,000 to an association for retarded children who provided us the money so that we might publish the first edition and distribute it, without any charge, throughout the country. Whatever royalties are received from the sale of the second edition will, hopefully, eventually repay most of this loan. The very modest fee for the Look article will reimburse us for some of the expenses incurred during this completely unsponsored study, but is not sufficient to reimburse the parent association. Insofar as our eventual decision was to agree to commercial publication of the second edition of this book, the fact is that it was first offered to one state parent association, then to the non-profit Special Child Publications, and finally to the Kennedy Foundation. It was offered without any royalties awarded for us in order to permit its publication without profit and without any cost to the reader. Unfortunately, it wasn't possible for any of these organizations to sponsor the publication and, reluctantly, we had either to seek assistance from a commercial publisher or give up our desire to bring this book out on a deservedly wider scale than heretofore. As of this date, we are in debt as a result of this project. My personal hope is that at its conclusion we will have repaid that debt. Our intent has never been to profit financially from this experience, and it is inconceivable that anyone could believe otherwise.On May 2, 1967, the Massachusetts Legislature adjourned its formal deliberations at noon and reconvened at one of our four State Schools for the mentally retarded in order to pursue a thorough discussion and on-scene observation of the more serious problems confronting these settings. It was their purpose to achieve a deliberate focus on our state institutions in the hope that we might find the resources and talent to solve or ameliorate current problems and also prevent these from occurring in the future. The writer was invited to deliver the keynote address to this legislature, as well as to the professional administrative staffs of the institution and the State Department of Mental Health, and to the officers of the parent association identified with that institution. This entire project received the full endorsement and participation of all of the aforementioned groups. In light of the writer's belief that the conditions and issues he is concerned with here have national rather than local relevance and have general rather than specific interest, he edited his paper of that occasion for presentation to the membership of the American Association on Mental Deficiency at its annual meeting at Denver, Colorado, on May 20, 1967.The view I am about to share with you today is no less real to me than our photographic essay—in spite of its impressionism, its vagueness, its distorted textures and freely associated construction. This is the stuff from which nightmares are made, and if you will permit me I will share mine with you. I have been to many state institutions for the mentally retarded, before and subsequent to the just-mentioned study. It is fitting that we concern ourselves today with one local state school. I accede to this reasonable decision. On the other hand, my remarks have a much more general applicability.I have been to the depths, believing all the time that I would awaken, as I always had before, from this most terrifying of all nightmares. And, as I always had before, I did awaken—to the mawkish horror and degradation of N. and W. Buildings. I have walked beside their soiled waters, where floating gently by their dayroom shores were the human flotsam and jetsam, the wasted and unfulfilled programs, hopes, and plans of countless generations of discouraged failures who were once known in these buildings as patients, attendants, and professional staff. I have filled my nostrils and inflated my lungs in N. Building until every pore of my body felt the nauseating zing of 70 years of cankered rot that will continue to generate ad infinitum until the seams of N.'s construction burst at the top and at the bottom and at its sides, until its cup of human refuse and despair runs over and drowns us all or causes us to realize, in time, what grief we perpetrate there. I have sat in its dayroom, surrounded by desperately lonely patients huddled together in their nakedness of body and spirit, defenseless against the elements, defenseless against assaults to their persons, to their souls, and to their consciousness. I have seen a hand reach out for human contact—if not for enobling friendship—only to see it struck down by the fear and confusion of its intended recipient, as he was struck down by the fear and confusion of another recipient, as he was struck down, as he was struck down—ad nauseum.If these remarks this day communicate any of my deepest thoughts and hopes, it should become very clear that I do not believe we can correct the blight of an N. Building and the plight of its residents with a new set of curtains, or a new paint job, or modern plumbing, or increased attendant staff there, or new words and slogans. In the past, to one degree or another, all of these shibboleths and gestures were implemented and found wanting. All were enveloped by the mire of that totally oppressive environment. We do not suffer so much the lack of structural architects and interior designers as we do the absence of ideational architects and moral interventionists.It is not that the amenities and courtesies are not appreciated. They are, for they demonstrate that essentially the conditions at N. Building are not due to evil people. They are not due to more incompetent or mendacious people than one finds in any large socio-political organization, such as is found in your legislature and in my university. Nor are these conditions due only to insufficient capital budgets and ludicrous per capita operating costs. Obviously, a more appropriate financial structure, a more tangible and pervasive method to encourage the considerable number of dedicated enlightened individuals who are employed at the school, and better ways to cashier those who are incompetent, will reduce many of the problems you observe here and will make life habitable for those whose lives are now intolerable.However, significant change, meaningful change, change all of us can be truly proud of, change that will result in objectively superior residential treatment—not subjectively relative improvement—will not obtain until we alter our conceptions of human potential and our methodologies implementing those conceptions. In addition to a far greater share of the public treasure; in addition to more competent, more numerous, and more available staff; in addition to much smaller living and training units, we must develop more optimistic convictions concerning the abilities and potentials of those we call mentally retarded, however severe that retardation may be. The prophecy of incompetency and vegetation associated with the mentally retarded is self-fulfilling. Equally self-fulfilling can be the prophecy of competency and achievement.I have irrefutable evidence from 18 years of clinical experience in the field of mental retardation that no resident needs to live in a denuded state, needs to be a head banger, or needs to be locked in solitary confinement. I have irrefutable evidence that practically every resident can be taught to eat meals independently, can be taught to live among his fellows without being dangerous to himself or others and without the use of physical restraints. I have irrefutable evidence that all building odors can be eliminated without the need for even more powerfully repugnant chemical treatments or electronic gadgetry that masks the sources of these odors but does not eliminate the causes: filth and neglect. I have very substantive evidence that intelligence is educable; that is, people can change—learn—and that this concept applies both to the retarded and those who minister to their needs. It applies to us, too. We can change in our conception of human potential; and thus, we can promote change in others. The lives of Anne Sullivan and Helen Keller speak volumes about this concept, as do the lives of Jean Itard and Victor, the Wild Boy of Aveyron.It is my hope that our governor, our legislature, and commissioners who have faith in these immodest claims will encourage us to develop a network of small community centered residential facilities, interrelated with a total community program of pre-service and in-service training and research, collaborating with our best universities where students in medicine, nursing, social work, education, and psychology may be employed during the course of their training and may devote to our common need and common good their idealism, service, and professional skills. From such endeavors we will develop new pathways and new models and new and vigorous ideas and ideals to better comprehend and confront that complex devastation, mental retardation. Without such approaches we will continue to fund new curtains and paint jobs and, once or twice in a century, we will demolish old buildings. Without such approaches we will continue to divert overwhelming problems with flimsy, thoughtless plans; we will continue to irrigate huge deserts with watering cans. Without such approaches, for every N. Building we demolish we will participate in the procreation of a new—equally large—residency which will be little more than the portrait of N. Building as a child.This address need not be necessary to convince you of the imperative need to at least destroy forever the physical structures and the symbolic disease represented by N. and W. Buildings at our state school. Some men dedicate their lives to build edifices. Before we can build, we must first dedicate ourselves to systematic annihilation. That these buildings continue to exist is either a massive indictment of our collective intelligence and relatedness or a colossal testament to human inertia or our incompetence. All that would be necessary to convince you that the danger point was reached many generations ago, that the point of no return—the time for physical and conceptual demolition—was passed before the oldest in this assembly was born . . . all that would be necessary would be to lead you now to these buildings.“The triumph of evil requires only that good men do nothing.” Good men, do something; do not turn away from these blights we call N. and W.! Do not rest until you can guarantee to all of our citizens that these buildings, wherever they exist in our commonwealth, no longer serve the gods of pain, sorrow, and chronic hopelessness. And do not rest until, across the land, the hundreds of these buildings—and the philosophies they breed—are laid to their eternal damnation.A little child we knew and loved was buried a few days ago, and my wife and I, in shocked awe, pondered the senselessness of a life taken almost before it was lived. However, Michael did live, and as all of us must, he died. Although his life was too brief, Michael lived a good life. We rejoiced his life and now mourn his death. But the funerals for those in N. and W. Buildings come not with death but in life. For them it is life that is the terrible avenger; it is life that we mourn. And as we are part of this grand design, we mourn for ourselves and for our helplessness.Believe that you are more than your brother's keeper. Believe that while on this earth you are his savior and he is yours.

Intellectual and developmental disabilities, 2015 · doi:10.1352/1934-9556-53.6.426