THE HISTORY OF THE RELATIONSHIP BETWEEN THE CONCEPT AND TREATMENT OF PEOPLE WITH DOWN'S SYNDROME IN BRITAIN AND AMERICA FROM 1866 TO 1967. BY Lilian Serife ZihniB.Sc. P.G.C.E. FOR THE DEGREE OF DOCTOR OF PHILOSOPHY IN THE HISTORY OF MEDICINE UNIVERSITY COLLEGE LONDON 1 Abstract This thesis fills a gap in the history of mental handicap by focusing on a specific mentally handicapping condition, Down's syndrome, in Britain and America. This approach has facilitated an examination of how various scientific and social developments have actually affected a particular group of people with handicaps. The first chapter considers certain historiographical problems this research has raised. The second analyses the question of why Down's syndrome, which has certain easily identifiable characteristics associated with it, was not recognised as a distinct condition until 1866 in Britain. Subsequent chapters focus on the concept and treatment of Down's syndrome by the main nineteenth and twentieth century authorities on the disorder. The third chapter concentrates on John Langdon Down's treatment of 'Mongolian idiots' at the Royal Earlswood Asylum. The fourth chapter examines Sir Arthur Mitchell's study of 'Kalmuc idiots' in private care. The fifth considers how Down's and Mitchell's theories were developed by later investigators, with particular reference to George Shuttleworth's work. Archive materials from the Royal Albert, Royal Earlswood and Royal Scottish National Institutions are used. The sixth focuses on the late nineteenth century American concept and treatment of people with Down's syndrome through an analysis of the work of Albert Wilmarth. The seventh discusses a germinal/syphilitic theory of the condition by a British physician, George Sutherland, and traces its treatment consequences in both Britain and America. The eighth examines Francis Crookshank's concept and the hormonal therapy people with Down's syndrome consequently received. The ninth on Lionel Penrose's investigations, incorporates new material from the Penrose file at University College. The tenth describes the relationship between the development of Adrien Bleyer's concept and the question of raised parental age. The problems of screening and automatic abortion (1967) are finally discussed. 2 CONTENTS List of tables and figures 4 Acknowledgments 5 1. Introduction. 6 2. The Identification of the Syndrome. 20 3. Down's Redeemable Degenerates at Earlswood. 72 4. A Place for the Kalmuc in Society. 110 5. Maintaining the Stereotypes. 141 6. The Repressed at Elwyn. 165 7. Sutherland's Syphilis Hypothesis. 211 8. Man or Monkey: Crookshank's Immoral Ideas. 251 9. Penrose's Statistics and Sterilisation. 276 10. Adrien Bleyer's Premature Discovery. 312 Conclusion 377 Bibliography. 384 3 List of Tables and Figures Tables 1. The Growth of Earlswood Asylum. 36 2. Data from the Royal Albert on the Mortality of People with Down's Syndrome. 156 3. Number of Deaths after Dr. Ireland left Larbert. 158 4. Different Models of the Occurrence of the Feeble-minded • 300 5. The Role of Raised Maternal Age in the Theories of Armstrong and Penrose. 314 6. The Role of Raised Maternal Age in the Theories of Jenkins, Rosanoff and Handy. 315 7. The Role of Raised Maternal Age in Adrien Bleyer's Theory. 316 8. Early Theorists who Incorporated Raised Maternal Age in their theories. 319 Figures 1. A Comparison of Clark's and Keith's reasoning. 290 2. Number of Chromosomes in Haploid Daughter Cells from a Person with Down's syndrome Following the Reduction Division. 347 4 Acknowledgments I should first like to express my special thanks to my supervisor, Dr. William Bynum, who has directed this research. His apposite comments on my weekly research reports, and his critical reading of the chapters in this thesis have been of invaluable help. I very much appreciate all the advice he has given me. I am grateful to the librarians at the Welicome Institute who have always been very helpful, and particular thanks to Judith Barker and Elizabeth Doctor for their friendly assistance. I also appreciate the kindness of Joyce Lentz, the librarian at the Elwyn Staff Library in America, who so promptly sent me all the material which I had asked for from the Elwyn Archives. I thank, too, the staff of the Lancashire and Surrey Record Offices and the Medical Record Officers of the Royal Scottish National Hospital. The London Borough of Brent has generously paid my tuition fees to University College and I am very pleased to acknowledge their support. 5 CHAPTER ONE INTRODUCT ION This thesis traces the changes in the concept and treatment of people with Down's syndrome in Britain and America from 1866 to 1967. 1866 is a very convenient starting date; it was in this year that John Langdon Down classified people with'i Down's syndrome as Mongols, and in so doing formulated a concept of the syndrome which was to exert an enormous influence on the way in which it was perceived over many decades to come. 1967 was the year when an Act of Parliament first permitted the abortion of a foetus with an extra chromosome. The destruction of these foetuses was undoubtedly the major consequence of the determination in 1959 that Down's syndrome occurred as a result of non-disjunction. While texts exist which examine the historical treatment of insanity in these two countries, there is no comparable work on mental handicap. A British / American comparison is actually particularly appropriate for an examination of the history of this subject: a common origin of the study and treatment of 'idiots' in the middle of the nineteenth century can be traced and it is then possible to attempt to identify those factors which have led to the development of 6 particular features in the two societies. It is believed that this thesis also differs from other histories of mental handicap, which have generally centred on institutional and legal landmarks or 1 educational reforms, in that it attempts to explain developments in the treatment of a particular group of people with handicaps in terms of the contemporary scientific theories of abnormality. This has been considered to be a valid approach because historically it was the physician's medical/aetiological beliefs which largely determined the intellectual, social, physical/medical and moral treatment which the different 'types' of people he treated, received. It is also therefore hoped that an accurate representation of the history of Down's syndrome has been achieved by making the focus of each chapter a particular doctor(s) and his(their) patients with Down's syndrome. The important fact that all the physicians who played key roles in shaping the understanding of the condition were Anglo- Saxon/Aryan, middle-class men has been highlighted by this method. People with Down's syndrome were frequently to be found in institutions which had been established for the education / training of 'idiots', and I have therefore considered the important questions of how the occurrence of abnormal physical and mental characteristics were interpreted in these asylums and to what extent the contemporary explanatory frameworks 7 shaped the institutional training/educational methods which were considered appropriate. Archive sources from the Royal Earlswood Hospital, Royal Albert and Royal Scottish National Hospital have greatly aided the consideration of these questions by providing the answers to certain specific problems: the number and type of patients admitted; the reasons for the diversity or homogeneity of the asylum population; the features of the asylum which could have determined/influenced classification methods; the means by which an 'order' of mental condition was determined; the relationship between the aetiological data collected and the treatments considered appropriate for the patients; the relationship between the admission systems, the regimes and the annual mortality of the patients; and the similarities and differences between the conceptualisations of Down's syndrome and the asylum regimes. Contemporary historians of special education, for 2 example Michael Barrett, justify their ommission of the medical conceptualisations of mental handicap by the adoption of a sociological model of knowledge, which contains the assumption that all terminology and classification systems are socially-created; the concept of Down's syndrome and that of retardation are, therefore, seen as of little value outside the confines of a particular clinical setting, and, in addition to 8 this the specific experiences of people with Down's syndrome are not considered because of the possibility that terminological homology through time cannot be presumed. This way of perceiving those with handicaps has grown out of the antipsychiatric movement which has recently been discussed by Bynum et al. in their 3 "Introduction" to The Anatomy of Madness. They describe how certain protagonists of this movement, like Thomas Szasz, have argued that psychiatric diagnoses should not 4 be used to explain the behaviour of deviants. However, Szasz's arguments are not readily applicable to those with mental handicaps, for while altruistic or criminal behaviour may be deemed to be at least partially independent of the physical state of the human brain, intelligence and the capacity to speak etc. cannot be viewed in a similar way. A denial of the existence of the problems associated with brain damage/abnormality probably does not help the handicapped, and definitely places a very heavy burden on them, as well as their 5 parents and their teachers. Although it has been fully appreciated that people with Down's syndrome are first and foremost individuals who differ in an infinite number of ways from one another, it is a fact, too, that the presence of an extra chromosome also results in the occurrence of a syndrome with certain clearly identifiable characteristics associated with it: speech problems in 9 the affected person; symptoms of cardiac abnormalities etc.