Down's Syndrome: The Biography (Biographies of Diseases)

254 Pages·2011·1.77 MB·English

by  David Wright

DOWNS
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DOWNS
The History of a Disability
R
David Wright
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3
Great Clarendon Street, Oxford ox2 6dp
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Acknowledgements
T
his book owes many debts, both academic and personal.
I would like to thank Helen and Bill Bynum who kindly
invited me to participate in the Oxford University Press’s
programme of books on the history of disease. Both Helen
and Bill were generous in their support and critical comment,
as were the referees who anonymously provided feedback on
the original proposal and the fi nal manuscript. Latha Menon,
Emma Marchant, and Phil Henderson at Oxford University
Press (UK) provided patient guidance on the structure of the
book, assisted with permissions for the images, and advised on
marketing. Andrea Perco-Hough was encouraging and enthu-
siastic in her administrative assistance in the Dean’s offi ce at
McMaster University. The staff at the Langdon Down Centre
Trust in Teddington, England, were welcoming during my
research visit, expeditiously granting permission to reprint key
images in this book. Paul Beverley and Noeline Bridge provided
effi cient and accurate proofreading and indexing respectively.
I am particularly indebted to several research assistants who
performed hard labor over the past two years. Nathan Flis, an
aspiring as well as inspiring young art historian was insightful
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acknowledgements
in his selection of images and counsel on the framing of the
book; Colleen Cordukes, currently training to be a doctor in
the Canadian medical system, was impeccably diligent as a
research assistant and invaluable in her already formidable
medical knowledge. Caitlin Dyer, Jackie Nobreperes, and Martin
Ciglenecki were fabulous undergraduate research assistants who
demonstrated close attention to detail and chased up innumer-
able references. Others helped counter my superfi cial knowl-
edge of the history of Down’s Syndrome outside the British and
Canadian worlds: Jeff Hayton provided research on disability
and sterilization in Modern Germany as well as fi lling in other
large gaps in my research; Devon Stillwell uncovered extremely
useful material on the professionalization of genetic testing in
the United States; John Armstrong contributed crucial supple-
mentary research on Australia and New Zealand; and Makoto
Ohtani translated supporting material from Japanese disabil-
ity history. Of course, no book is truly global in its coverage,
but my attempt to broaden out the geographical remit of this
book was assisted by these individuals and many old friends
and colleagues outside Canada, including, amongst others,
Cathy Coleborne, Akihito Suzuki, Junko Kitanaka, Elizabeth
Malcolm, and Jonathan Ablard.
My research leaned heavily on the few excellent works on
the histories of ‘mental retardation’, including those by Mark
Jackson, Mathew Thomson, Steve Noll, and Jim Trent. I am par-
ticularly grateful to Conor Ward, whose publications about the
life of John Langdon Down proved invaluable and whose fasci-
nating discussion of Down’s photography inspired me to play
upon the theme of framing mental disability in the Epilogue.
I was very fortunate, late in the completion of this manuscript,
to make contact with Clarke Fraser, Professor Emeritus of
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acknowledgements
Human Genetics, McGill University, whose personal insights
into Jérôme Lejeune’s public lecture at McGill University in 1958
alerted me to the recent controversy in the genetics community
over the ‘discovery’ of the trisomy 21.
I have been the grateful recipient of external funding through-
out my postgraduate studies and academic career. I would not
have survived in higher education were it not for the fi nan-
cial support of my parents, scholarships from Linacre College
(Oxford), the Overseas Research Scholarship program (UK), and
the Faculty of Modern History at the University of Oxford. Like
many historians of medicine who pursued advanced training in
the United Kingdom, I remain deeply indebted to the Wellcome
Trust, fi rst for a postdoctoral research fellowship at the University
of Oxford, and then for a multi-year Wellcome Award at the
University of Nottingham. Since my return to Canada in 1999,
I have held the Hannah Chair in the History of Medicine at
McMaster University, a position that was endowed by Associated
Medical Services Inc., Toronto (formerly the Hannah Institute
for the History of Medicine) and supported since by McMaster
University. Internal funding through McMaster’s Arts Research
Board, contributions by the Offi ce of the Provost, as well as
external grant funding from the Social Sciences and Humanities
Research Council of Canada and the Canadian Institutes for
Health Research has meant that I have never been in want of
research support. I do not for a moment take lightly the collec-
tive consideration and generosity of these granting agencies,
some of which are endowed charitable trusts and others which
are funded by the taxpayers of Canada. Finally, on a more physio-
logical basis, I would like to acknowledge the friendly staff and
energizing lattes of My Dog Joe’s cafe in Westdale, Hamilton,
Canada, where most of this book was written.
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acknowledgements
The wonderful images included in this book have multiple
provenances. The photographs of the Langdon Down family,
and the Simian Crease (drawn by Reginald Langdon Down),
are all reproduced by permission of the Langdon Down Centre
Trust and the Down’s Syndrome Association (UK), Teddington,
England. The Wild Boy of Averyon and the Karyotype of the tri-
somy 21 are reproduced by permission of the Wellcome Trust,
London, England. William Harvey’s petition is reproduced
by permission of the Public Record Offi ce, Kew, England. The
beautiful photograph of the Japanese dancer is reproduced by
permission of Professor Eiichi Momotani, on behalf of Down
Syndrome International ( Japan). The arresting poster of the
Canadian Association for Mental Hygiene is reproduced by per-
mission of John Court on behalf of the Archives of the Centre
for Addiction and Mental Health, Toronto, Canada. Permission
to reprint the chart of Maternal Age and Mongolism, as well as
the image of the ‘Mongol Boys’ in an American institution, orig-
inally published in Kate Brousseau’s 1928 book Mongolism, was
granted by Lippincott, Williams & Wilkins. Part of Chapter 2
draws on a chapter in my previous monograph on the Earlswood
Asylum that concentrates on the tenure of Dr John Langdon
Down. I am grateful to Oxford University Press for permission
to include revised parts of a chapter of that book.
My interest in the history of Down’s Syndrome, not unlike that
of many people attracted to the history of disability, emerged
from familial experience. My sister, Susie—the next in a sibline
of fi ve—was born with a trisomy 21. Perhaps only those who
have had a Down’s Syndrome son or daughter, or brother and
sister, can fully appreciate the mix of profound feelings of pride
and sadness, of joy and regret, that punctuate family life with a
family member born with this chromosomal disorder. Only in
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acknowledgements
adulthood does one have the distance and maturity to refl ect
upon a family history that was, in many respects, far from ordi-
nary, or on the role that mothers and fathers had as accidental
advocates of disabled children, challenging pre-existing barri-
ers of discrimination that yielded only slowly and over time to
respect and integration. So this book, for me, was not a solitary
or abstract intellectual exercise, but rather a satisfying opportu-
nity to engage in a convergence of academic interest and famil-
ial self-refl ection. It is also, indirectly, a testament of respect
and tribute to the love and tolerance of my parents. I am deeply
grateful to have had the opportunity to pursue this intellectual
and personal journey, and to Susan for agreeing to include parts
of her life story in the prologue. This book is dedicated to her.
To my own family—my wife Mona, and children Naomi,
Nilesh (Neil), and Gopika—I marvel in the joys and challenges
that inform the narrative arc of our lives together. If there are
any remaining errors in this book, it is probably due to utter
sleep deprivation. I told the children that they had to stay in
their beds until 7 o’clock in the morning, but they never listened
to me.
D. W.
Hamilton, Canada
December, 2010
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