FALL 2009 DHA
NEWSLETTER
© Disability History Association
The Fall 2009 Issue of the DHA Newsletter takes up the theme
of public history with several articles related to disability history museums
and exhibits, and other efforts to bring disability history to a public beyond
the university. It also includes
the second and final part of my interview with Henri-Jacques Stiker, author of A History of Disability (English trans.
2000), where we discuss the current state of disability history in France, and
speculate on the future of the field.
The Newsletter also contains announcements of new resources and
conferences, and more.
MESSAGE FROM THE PRESIDENT..................................................................................... 2
ANNOUNCEMENTS.............................................................................................................. 3
New AFB Archives in New York City....................................................................................... 3
Digitized Material on the Medical History of British India.......................................................... 4
Flikr and Disability History Photos Online............................................................................... 4
New Website on the History of Madness in Canada.................................................................... 4
NEW PUBLICATIONS FOR HIGH SCHOOL, UNIVERSITY, AND GENERAL READERS...... 5
The Encyclopedia of American Disability History, by Susan
Burch................................................ 5
Polio, by Daniel J. Wilson..................................................................................................... 6
DHA @ AHA.......................................................................................................................... 7
BOOK REVIEWERS WANTED............................................................................................. 8
NEWS FROM ACROSS THE POND....................................................................................... 9
MEMBER CONVERSATION................................................................................................ 12
Spotlight on Jennifer Barclay, by Lindsay Patterson................................................................. 12
FORUM: DISABILITY HISTORY AT THE MUSEUM AND BEYOND................................... 13
How A Curator Thinks, by Katherine Ott................................................................................ 13
Bricks and Mortar: Museum of disABILITY, by Theresa Frasier................................................. 16
A Matter of Integration: Disability History & The US
Survey, by Laurie Bloch & Graham Warder.. 18
HISTORY OF THE BLIND IN FRANCE NOW AVAILABLE IN ENGLISH........................... 24
INTERVIEW WITH HENRI-JACQUES STIKER – PART TWO............................................ 25
MESSAGE
FROM THE OUTGOING PRESIDENT
Dear DHA Members:
With
this issue of the Newsletter I end my four years as president of DHA and editor-provocateur. I do so with mixed emotions. I have thoroughly enjoyed playing my
part in helping transform DHA from a handful of dedicated scholars sharing
informal fleeting conversations to a full-fledged organization recognized by
both the Internal Revenue Service and the American Historical Association. While we are not rich (who is in
2009?!), we now have enough of a financial base to plan for a future that
includes supporting young scholars.
We are building partnerships with organizations in the United States and
abroad. And we can congratulate
ourselves that the upcoming AHA meeting will have five panels devoted to
disability history as well as an increasingly more welcoming environment. I thank you for your contributions,
your support, your emails of joy at finding others. WeÕll look back on this time as one of extraordinary
intellectual ferment and growth, a time when ideas were fluid, professional
stakes were low but scholarly ones high, a golden moment when everyone had
something to contribute.
Coincidentally, yet appropriately, the public history theme
of this issue offers a perfect transition to our new president, Penny Richards
of UCLA, who was unanimously elected by the DHA Board at our October meeting. An indefatigable researcher and
advocate, Penny brings great energy, passion, common sense, and smarts to our
organization. Most know her
already as a founding editor of H-Disability and the always-welcome monthly
ÒCurrent Journal ArticlesÓ feature.
Penny has her fingers on the pulse of our field by following blogs,
discussion lists in the realms of scholarship and activism related to
disability. In fact, she has been
a great advocate for information sharing of all kinds, including a longer-term
advocacy for creating archives. I
have especially appreciated her work on the DHA Board over the past several
years, where IÕve often only half-joked that I need to create a ÒThanks Penny,
you came to the rescue!Ó macro.
Firmly implanted in the contemporary world, yet also a terrific historian
with a nose for the fascinating, revealing, sometimes heartbreaking story, our
new president is well-suited to take DHA on the next stage of its journey.
As for me, IÕm eager to throw myself into my new project on
the history of smallpox in eighteenth and nineteenth-century France. This brings me back to my roots as a
historian of epidemics (my first book was on social and cultural responses to
cholera), but with the wisdom of our new field. I look forward to watching the DHA evolve and to contributing
when and where I can.
In solidarity,
Cathy Kudlick
DHA President and Editor-Provocateur
AND FROM
THE INCOMING PRESIDENT
Greetings,
disability historians! Let's first
thank Cathy for an excellent term as president of the Disability History Association,
and wish her well in her new projects.
During her reign and because of her persistence, we became an official
non-profit organization (so keep those donations coming). Also during her term, we had our first
disability history conference in the US, and we became affiliated with the
American Historical Association, which gives our field a place at the table in
AHA conference planning and other important meetings.
As we move into the second decade of the 21st century--yes,
already-- we hope to see DHA reaching out more and more. We have the base now, finally, to start
funding student scholarships for conference attendance. We can start to realize some long-term
goals for awards for outstanding research and publications. We are already making alliances with
other organizations, such as the Disability History Group in the UK, to build a
wider community of scholars in our field.
Cathy notes that one of my particular interests is in doing
history that reaches beyond campus in its appeal and impact. The Disability History
Association is well-positioned to be an excellent resource for schools,
veterans' groups, rights organizations, local historians, and others in the
community who seek and appreciate a historical perspective on disability
issues. And in turn, those
organizations can inform and support scholarship in ways we have perhaps only
begun to imagine. As an
independent scholar, I live and work "out here," and feel the need
for such outreach. As a blogger
and H-Net editor, I
know there are many available spaces for these productive
exchanges to happen. I will be
encouraging, cajoling, nudging us, as an organization, to be mindful of this
broader potential in the coming year.
Penny L. Richards
ANNOUNCEMENTS OF INTEREST TO DISABILITY
HISTORIANS
1.
American Foundation for the Blind (AFB) Announces the Opening of New Archives
in New York City
The American Foundation for the Blind has moved
offices. The organization is now
located at 2 Penn Plaza, Suite 1102, New York, NY 10121. AFB has constructed a purpose built
archival vault with temperature and humidity control to house its unique
historical collections, including the Helen Keller Archive, the Talking Book
Archive, its M. C. Migel Rare Book Collection, and AFB's organizational
archives.
The new office space includes both a state-of-the-art
archival facility as well as a gallery space for exhibitions. A glass paned window separates the
vault from the gallery space, allowing viewing from either room. AFB intends to mount periodic
exhibitions that highlight the richness of its archival collections. The first exhibition is scheduled to
open in January 2010 and will present a selection of key Helen Keller items from
the over 80,000 items in the archive.
This exhibition, ÒThe Many Faces of Helen,Ó will be the first of several
intended to bring greater attention to her extraordinary life. Another exhibit will showcase the
organization's unique Rare Book Collection. This collection of almost 1,400 volumes on non-medical
aspects of blindness spans from 1617 to the 20th century and is one of the
foremost collections of its kind in the world. Books - including Diderot's Lettre sur Les Aveugles
lÕUsage de Ceux qui Voyent, 1749.
(Diderot went to jail as a result of writing this book) and Prcis sur
l'Histoire de France, Paris 1837, which is one of only three known copies of
the first edition of the first full-length book embossed using the braille
system - will be on display for the first time and will shed light on almost
400 years of changing attitudes towards those with visual disabilities.
For more information on AFB's archival collections please
contact Helen Selsdon at 212 502-7628 or email: hselsdon@afb.net
From the National Library of Scotland blog, Jan Usher
writes:
"We've been fortunate to be awarded more funds from the
Wellcome Trust to digitise more material for the Medical History of British
India Online project, this time the reports of the Lunatic Asylums. They're a
fascinating resource for the study of mental illness, but also very revealing
of social and moral attitudes of the day."
3.
Flikr and Disability History Photos Online
There's a newish Disability History pool on Flickr, the
photosharing website. Photos from archives and private citizens are
invited to the group, from all places and eras. Right now we have
architecture, aerial views, Australian sopranos, veterans of Gettysburg
and Gallipoli, protesters, schoolchildren, scientists, signage, and
statues. What else can you contribute? http://www.flickr.com/groups/1022796@N24/
4.
New Website on the History of Madness in Canada
A new History of Madness in Canada / Histoire de la Folie au
Canada Website http://www.historyofmadness.ca/
was launched October 31st, 2009.
Established by a collective of researchers and educators
from across the social sciences, this unique site has been created to enhance
critical thinking, heritage preservation and historical research in the fields
of psychiatric medicine and mental health. We welcome national and
international involvement from educators, researchers, archivists, psychiatric
survivors, users, practitioners and advocates. While we are currently operating
in English, we are committed to building a fully bilingual site.
We are delighted to announce that the website has been fully
redesigned and includes the following new content:
News from our Five-year national project on the history of
deinstitutionalization in Canada, Open Doors / Closed Ranks: Locating Mental
Health after the Asylum.
E-Education: secondary school lesson plans which consider
war and mental health; post-World War II definitions of ÒnormalÓ; and the rise
of the psychiatric survivor movement in the 1970s and 80s. Revisit these pages
in December 2009 for the launch of Youth and Mental Health: Addressing Stigma
through Community-Informed Curriculum, an innovative set of interdisciplinary
multi-media teaching materials.
E-Archives: featuring an exhibit on mental health history in
British Columbia; a chronicle of psychiatric history in Qubec; and an
anthology of 19th- and early 20th-century documents and personal accounts.
E-Library: offering an assortment of primary and secondary
materials and a comprehensive bibliography of more than 800 sources on the
history and culture of psychiatry, asylums, and mental health in Canada, with a
strong presence of contributions from the psychiatric survivor and consumer
communities.
Enjoy all of this and revisit the website to watch our projects
and collections take shape.
For information please contact: robert.menzies@historyofmadness.ca
or megan.davies@historyofmadness.ca
Twelve broad themes frame the
encyclopedia: activism and advocacy, disability art and artistic expression,
community, disability culture, daily life, education, employment and labor,
identity, language and terminology, law and policy, representation, and science
and technology. Working from a social-cultural model of disability, our authors
address the complexity of disability history, addressing multiple perspectives
and interpretations, and placing their subjects into the broader American
historical context.
Basic factors, such as important
events, laws, and biographies of people with disabilities are covered at
length. Significant historic experiences and concepts, including asylums and
institutions, civil rights, wars, public policies, media, education, protests,
and assistive technologies, reveal the deeper meaning of disability as a lived
experience. The explanations also make connections to race, class, and gender,
as well as other critical categories, such as ethnicity, religion, and region.
In addition to common topics in American disability history, this work features
original studies that expand the field. For example, readers will find articles
on camps, drama, ethnicity, family, humor, the Internet, poverty, public
history, sexuality, sports, and violence.
In an effort to connect readers
with the past and to highlight key themes
and features, we collected a wide array of primary sources to complement many
of the articles. These include letters, interviews, paintings, newspaper
clippings, photographs, cartes des visites, pamphlets, speeches, laws, song
lyrics, and literary works. The encyclopedia also includes an extensive
chronology of significant events in American disability history extending from
the colonial period to present day. Throughout the volumes, breakout quotes
from "common folks" offer insights into daily lives that typically
have remained in the margins of historical study. The bibliography at the end
of Volume 3 includes hundreds of books, articles, and documents, as well as
sections on electronic resources: CDs, DVDs, video recordings, and Web sites.
It is hoped that this reference
tool will spark additional research in the field. The editor and advisory board
members offer our heartfelt thanks to the authors and other contributors who
helped to bring this important project to fruition.
Print copies of the encyclopedia
will be released in September;
digitized subscriptions will follow several months later. We hope that you will
encourage libraries and organizations you know to purchase this important work.
For more information about the encyclopedia, please contact Susan Burch at sburch@middlebury.edu
2. Greenwood Press has published Daniel
J. WilsonÕs Polio as part of its Biographies of Disease
series. The book was written for a general audience, including high school
students. The volume traces the emergence of polio as an epidemic disease in
the late nineteenth century and the scientific and medical efforts to find a
cure or preventive. It explores
the development of Warm Springs as a polio rehabilitation center by Franklin D.
Roosevelt and the subsequent creation of the National Foundation for Infantile
Paralysis and the March of Dimes to support polio research and
rehabilitation. Polio also examines the efforts of Jonas
Salk and Albert Sabin to create successful polio vaccines. Finally, the book discusses the
experience of having polio, of undergoing polio rehabilitation, and of living
with a permanent disability. Polio also includes a polio time-line, a
glossary of terms, and a bibliography.
DHA @ AHA, SAN DIEGO, JANUARY 7-10, 2010
Compiled by Dan Wilson
The Disability History Association is now an Affiliated
Society with the American Historical Association, which means that this year we
have the largest number of panels in our field ever. As an Affiliated Society we are sponsoring or co-sponsoring
the following:
Thursday, Jan. 7, 3-5 p.m.
Rethinking American Disability Movement History
Chair: Penny Richards
ÒAmerican Ideologies of Disease,
Disability, and Charity: Clashing Late-Twentieth-Century Perspectives,Ó Paul K.
Longmore
ÒSweet Land of Disability: the 1977
Occupation of the HEW Offices and the American Stage,Ó Victoria Lewis
ÒDisability, Solidarity, and the
Black Power of 504,Ó Susan Schweik
Friday, Jan. 8, 9:30-11:30 a.m.
Disability in a Global Perspective
Chair: Michael Davidson
ÒConstructing Legal Definitions of
Physical Difference and Disability in Fifteenth-Century Mamluk Cairo and
Damascus,Ó Kristina Richardson
ÒDoes God Hear Silent Prayers?
Deafness in Ottoman Syria,Ó Sara Scalenghe
ÒUsing Disability to Rethink the
Nature of Identity in Modern America,Ó Jeffrey A. Brune
Friday, Jan. 8, 2:30-4:30 p.m.
Constructing a National Body: Disability, Race, and Gender in the
United States
Chair: Steven Noll
ÒIntellect, Feeblemindedness, and
Civic Fitness,Ó Anna Stubblefield
ÒDiagnosing Defectives: Eugenic
Fieldwork in the United States, 1910-24,Ó Sara A. Vogt
ÒSalvaging Human Wastage for the
Great Industrial Army': Race, Rehabilitation, and the Federal Board for
Vocational Education, 1917-24,Ó Paul R. D. Lawrie
Comment: Michael A. Rembis
Saturday, January 9, 2010: 11:30 AM-1:30 PM
Becoming Helen Keller: Perspectives and Experiences Integrating
Disability into U.S. Survey, Higher Education, and Secondary School Coursework
Chair: Laurie Block, Disability
Museum
Panel discussion with Richard
Cairn, Hampshire Educational Collaborative, William F. Kuracina, Texas A&M
University at Commerce, Laura L. Lovett, University of Massachusetts, and Graham
Warder, Keene State College
Saturday, Jan, 9, 2:30-4:30 p.m.
Reclaiming the Disabled Subjects in Historical Research and
Representation
Chair:
Alice R. Wexler
ÒInterpreting and Archiving Mad
People's History,Ó Geoffrey Reaume
ÒMaterialism and the 'Disabled
Subject' in Disability History,Ó Rachel Gorman
ÒMother Made her Mad:
'Mother-Blaming' and the Pathologization of Female Juvenile Delinquents in the Twentieth-Century
United States,Ó Michael A. Rembis
Comment:
Susan Burch
Stay tuned for announcements of other DHA-related gatherings
at the conference.
BOOK
REVIEWERS WANTED FOR H-DISABILITY
From Iain Hutchison, H-Disability Book Review Editor: i.c.hutchison@stir.ac.uk
We are in the process of reviving book reviews on
H-Disability and we hope that the first of recent reviews will be posted very soon.
Several people have already come forward to offer their
services as book reviewers, books are currently out for review, and additional
titles have been requested so that they may also be offered for review.
There are several ways that members of H-Disability can help
create a vibrant review facility on the List.
Firstly, we invite people to get in touch if they
would like to be offered a book for review. We would like a range of reviewers from PhD researchers to
established scholars. Doctoral
researchers should consider getting involved because book reviews represent one
way of building up a resume – and it is the custom that you keep
the books that you have reviewed!
So, if you would like to be a reviewer, send an e-mail to
the H-Dis Book Reviews Editor, Dr Iain Hutchison, at i.c.hutchison@stir.ac.uk In your e-mail, please tell me
about any particular areas of expertise that you would like to offer. However, if you can also contribute a
range of broad knowledge on areas of disability history, this will increase our
ability to send you a book for review.
The information that will help is:
Your name:
Institution name and address:
Areas of disability history that you would be interested in
undertaking book reviews – for example:-
Geographical expertise (France, Middle East, etc.)
Period (e.g. seventeenth century, 1918-1945, etc.)
Themes (deaf history, polio, education, biography, etc.)
Secondly, if you are aware of books relevant to
disability history that you feel should be reviewed on H-Dis, please draw them
to our attention. Helpful
information will include name(s) of author(s) or editor(s); title of book; name
and location of publisher with year of publication; and the ISBN.
Thirdly, and most importantly, if YOU have
published a book within our discipline recently, please draw it to our
attention. The work of our own
H-Dis members should have full opportunity for exposure on the list, so please
donÕt be shy.
Please get in touch with me. I will be pleased to hear from you.
From the UK Ana Carden-Coyne a.cc@manchester.ac.uk writes:
The Disability History Group UK/Europe now has a Facebook
Group, and people can join it. The
Group is for all those who use Facebook and are interested in the History of
Disability. It will contain news, such as book releases, and also has space for
a discussion forum. (It also directs people to the website
www.disabilityhistory.co.uk).
New UK research includes Ana Carden-Coyne's
'Reconstructing the Body:
Classicism, Modernism and the First World War' - a disability
studies and queer theory approach to the cultural and medical history of war
(Oxford University Press). Ana Carden-Coyne investigates the cultures of
resilience and the institutions of reconstruction in Britain, Australia, and
the United States. Immersed in efforts to heal the consequences of violence and
triumph over adversity, reconstruction inspired politicians, professionals, and
individuals to transform themselves and their societies.
ÔDefying
DisabilityÕ by Mary Wilkinson (Jessica Kingsley Publishers, 2009) tells
the stories of nine disabled leaders who, by force of personality and concrete
achievement, have made us think differently about disability. Whatever
direction they have come from, they share a common will to change society so
that disabled people get a fair deal. It includes compelling biographies
of: Sir Bert Massie, public
servant; á Lord (Jack) Ashley, Labour politician; Rachel Hurst: activist and campaigner; Tom Shakespeare,
academic; á Phil Friend, entrepreneur and business consultant; Peter White, broadcaster; Mat Fraser, actor,
musician and performer; Andrew Lee, activist and campaigner; Dame Tanni Grey-Thompson,
Paralympic champion. ÔDefying
DisabilityÕ is based on extensive interviews with the subjects and the people
who know them. It marks their similarities and differences, the forces that
drove them to achieve, the impact they have had on policies and practice, and
how the modern history of disability in the UK has been played out in their
lives.
The DHG is also sponsoring a Disability History Conference
next summer, which includes the following cfp:
Disability History: looking forward to a better past?
June 25th - 27th, 2010
University of Central Lancashire, Preston, UK
Plenary Speakers:
Professor Catherine J Kudlick, University of California,
Davis
Professor Tom Shakespeare, University of Newcastle
Disability history has emerged in recent years as an
increasingly popular sub-discipline of historical research, covering social,
cultural, medical, practical, gendered, technological and linguistic aspects of the lives of those seen by society
as having ÔdisabledÕ bodies and minds. The Disability History Group are pleased
to announce their latest conference. ÔDisability History: looking forward to a
better past?Õ which promotes the DHGÕs goal to advance research into the
history of disability. It is hoped the conference will broaden the
scope of disability history and deliver fresh and dynamic
perspectives on the way disability has been used to legitimate and understand
norms, social relations, inequality, and oppression. This includes historical
research into individuals, groups and institutions, as well as
representations/constructions and perspectives on disability.
The overarching theme of this conference is ÔWhere are we,
how did we get here and where are we going next?Õ. To this end, the conference
is dedicated to an evaluation of all aspects of disability history at regional,
national and international levels. In Ôlooking forward to a better pastÕ, the
DHG hopes to encourage lively and informed debate on
the current state of disability history; how the discipline
has emerged and arrived at this point; and where scholars working in the
discipline will go in the future. However, paper topics are not prescriptive
– we invite potential speakers to consider the ways that their current
research has emerged and its context within the sub-discipline of disability
history.
The DHG invites panel or individual contributions from
scholars and postgraduates working in this field, and is keen to consider
papers on a wide range of topics. Papers covering all aspects of disability
history, as well as papers on the historical and future development of
disability history, are welcomed.
Abstracts of 250 words should be sent to Dr Martin Atherton:
matherton1@uclan.ac.uk by March 31, 2010.
Primary Source
Contributions Sought for a Nineteenth-century British and Irish disability
history
Discussions are taking place with a publisher to add a
history of disability set to an established series of volumes that bring
together rare published works and selected primary sources contemporary to the
period.
The disability history set would focus on the long
nineteenth century from c.1780 to 1914.
It would aim to encapsulate a good geographical spread from England,
Ireland, Scotland and Wales and to represent a broad range of disabling
conditions – mental, physical and sensory, but also specific impairing
circumstances and conditions. The
initial strategy is to approach this on a range of themes such as work,
education, philanthropy, medical intervention, institutionalisation, family and
personal relationships, poverty, policing and crime, religion, gender,
bottom-up testimony, etc.
The initial task is to identify potential items for
inclusion. In this respect I am
keen to receive suggestions from scholars whose work encompasses this period
and geographical area.
Identification of rare works and documents that might be
considered should include author name, title of work, year-place-name of
publisher – along with a brief commentary as to why this item is worthy
for inclusion. For published
works, the publisher will run the necessary checks to establish rarity value
and will locate a copy of the publication if it is selected. For larger works, which could not be
reproduced in full, you might like to identify a section or chapter which you
consider to be especially important.
For primary manuscript sources, I would need a copy of the
source, such as a photocopy, clear digital image, or accurate transcript. Primary sources which might be of
interest include treatises from professional specializations, legal documents,
parish records, workhouse or poorhouse accounts, institution regulations,
diaries, personal letters and historical ephemera in general. Other suggestions will be welcomed.
Naturally, acknowledgement of all instances of assistance
will be made in the publication.
Please do not hesitate to get in touch with me. This is a project that will benefit
from as wide an input as possible.
I look forward to hearing from you and will welcome your support.
Iain Hutchison PhD FRHistS
School of History and Politics
University of Stirling
Stirling FK9 4LA
Scotland
LINDSEY PATTERSON INTERVIEWS JENNIFER BARCLAY
A Spotlight on Jenifer Barclay
By: Lindsey
Patterson
DHA Board Graduate
Student Representative
Jennifer Barclay Lindsey Patterson
The field of disability history is
quickly growing; however, many graduate students still find themselves the lone
disability historian, or, if lucky, one of a few in their departments. Therefore, it is important that we
emerge from the depths of our departments and libraries to get to know each
other. It is my hope that this
will be an ongoing section in the newsletter, highlighting the work of fellow
graduate students, celebrating their accomplishments, and seeing where the next
generation of disability historians is taking the field.
This past month, I had the
pleasure to have a conversation with Jenifer Barclay, a doctoral candidate at
Michigan State University and a 2009-2011 Carter G. Woodson Institute Fellow at
the University of Virginia. Her
work, ÒÔCripples All! Or the Mark of SlaveryÕ: The Invisible Link between
Disability and Race in the Old South and Beyond,Ó combines intellectual,
cultural, and social histories to examine the relationship between slaves and
disability. Barclay brings a disability lens to the Old South, highlighting the
relationship between race and disability and broadening the field through exploring the effects of
medicine and law on crystallizing this relationship, which had a lasting impact
on American culture throughout the nineteenth and early twentieth centuries.
BarclayÕs work challenges the
scholarship on the Old SouthÕs able-bodied assumptions through highlighting the
lived experiences of slaves with disabilities. While she focuses one chapter on the lives of disabled
slaves, her work will primarily address the intellectual history of racial
categories in the Antebellum South through the lens of disability. To do this, Barclay has had to be
creative in her methodology, examining the rhetoric of disability in the Old South
as well as re-reading the histories of science and medicine.
Barclay has found success in
getting non-disability focused grants and fellowships. She attributes this success to the
strength of the argument that the study of disability is essential to
understanding the narrative of U.S. history and to the ability of the lens of
disability to change our understanding of history. She also draws on established scholars in the field of
disability history to show that there is a strong foundation of scholarship for
her work. She also cites her ability
to make her work interdisciplinary, which has brought her research into the
mainstream and helped her not only to network with people in other disciplines
such as English and Sociology, but to also emphasize the vitality of her
project.
BarclayÕs main piece of advice for
graduate students is a useful reminder: network, network, network. She attended the Disability History
Conference in San Francisco in 2008, where she met many other people in the
field. Jenifer especially attests
to the value of making and maintaining connections with senior scholars in the
field. As a final thought, the
American Historical Association conference in San Diego is rapidly approaching
and I encourage graduate students to attend the panels on disability and
network with other historians.
FORUM: DISABILITY HISTORY AT THE MUSEUM AND BEYOND
Many exciting and creative efforts are bringing disability
history to a public beyond the academy, most notably in the area of
museums. At the same time, the
Ivory Tower has much to learn from these talented, smart bridge-builders and
savvy fund-raisers. The three
articles below offer a unique take on how to bring people and ideas that have
long been missing in the historical record to the museum. How do we convey what might perversely
be called the tangible-intangibles of disability experience in terms that are
useful to todayÕs public without being overly sentimental or presentist? What challenges and opportunities does
access – in every sense of the word – bring to rethinking the high
school curriculum to incorporate disability in a natural way that still causes
students and teachers to question their basic assumptions? While this forum
converged spontaneously and not consciously, I suspect the invisible hand of
serendipity at work, and I hope you find the result as stimulating as I do.
History and
Disability the Way a Curator Thinks
Katherine Ott, Smithsonian Museum of American History (ottk@si.edu)
Ten years ago, when I started working as a curator here at
the SmithsonianÕs National Museum of American History, I had a very steep
learning curve. Although I had had a couple of courses in archives and public
history, history graduate students at Temple University in the late 1980s were
given little, if any, training in how to use non-print material as primary
sources. This largely remains true today, throughout history departments across
the United States.
Competency in material culture is difficult to develop
because academic departments are text-based and usually chauvinistic about
it. I see this same steep
intellectual climb recapitulated with colleagues whom I get to advise me on
museum projects. It is very hard for scholars trained to privilege words to
switch gears and embrace the sensory nature of historical evidence. How do you
document history through its material record? How do you cite an object? How do
you figure out what words and objects and images will communicate in a gallery
setting from looking at the information on paper? Thinking through objects requires a different way of
approaching information from the one we learn in school. It requires imagining
other peoplesÕ bodies, desires, and frustrations, as well as being open to the
sensory messages that every environment produces.
The basic tool of curatorial work, in collecting objects and
mounting exhibits, is to think with your senses. Several years ago when I was
trying to find artifacts for a small exhibit on the history of the
disability rights movement to
mark the tenth anniversary of the ADA, I sent out a short questionnaire to web
groups where people with disabilities hung out. I also asked people to forward
my questions to everyone they knew. This was crucial for both getting a handle
on the exhibition and to building our collections, which were heavily oriented
toward medicine and people as ÒcasesÓ rather than their lived experience. I
needed help from people with first-hand knowledge in order to retrieve the
material record that we were missing. One of the things we collected was half
of a hand-cuff from Diane Coleman. She had been arrested during a Not Dead Yet
protest in which she had secured herself to an entrance to block access. The
police cut off her hand-cuff and arrested her. The cold metal broken hand-cuff
captures the struggle for autonomy, respect, recognition, and especially
survival that so many people experience daily. There is no combination of
adjectives, verbs, and nouns that can adequately explain what this artifact
means. The strength of the steel is a metaphor for ColemanÕs resolve. The fact
of the police severing the cuff from her wrist triggers the imagination in
dramatic, emotional ways that words cannot replicate. Without knowing anything
more about the mission of Not Dead Yet, we know a huge amount about what
propels their work through the hand-cuff. The hand-cuff was part of the
exhibition and then later borrowed by the Constitution Center in Philadelphia
for their exhibition on the first amendment.
Artifacts are about as close to the truth as a historian can
get. We uncover facts and accumulate evidence and statistics, such as when
something happened, who was there, the names of places. But as soon as we start
explaining causation, motivation, consequences, we are on shaky ground.
Historians can never know for sure why something unfolded as it did. We are
stuck with informed inference, based upon our training and knowledge of similar
occurrences. Most of the craft of history is interpretation based upon best
guesses--we fill in narrative around the facts that we have. And in a few
years, our interpretations will be revised by up-start students who have more
information or different frame-works upon which to draw. Objects, however,
donÕt change. They are statements about the past and one of the few ways a
historian has to actually bring people from the past into the present. They create a presence for people long
gone and often anonymous. As evidence, they may be interpreted in many ways
over the decades, but in form and structure, grounded in space and time, they
do not deviate. The museum has three grave-markers from the institutional
cemeteries in which in-mates were buried. Nearly every state has such sites,
with markers that have only numbers—no names or dates to animate memories
of the person buried beneath. For
most of us when we die, the only thing that remains (other than all of our
stuff which gets dispersed or discarded) is a marker somewhere with our name and
dates. We know next to nothing about the thousands of people in these numbered
graves. The numbered markers spark anger, despair, sadness, and a host of other
emotions. And although they are anonymous, they are none the less the source of
a vivid presence. One marker in the museumÕs collections is from Milledgeville,
Georgia, one from Faribault, Minnesota and another from Newark, a village in
up-state New York. Each marker tells a truth, better than any interpretive
moves we historians make.
The fraught thing about putting objects into exhibitions is
that editorial judgments need to be made about what to say and where to place
them. Interpreting historical
objects is overlaid with the danger of misperceiving or being misled by the
record. No one can know what
another person experiences, no one can really understand the life and world of
other people. It is hard enough to comprehend the lives of middle-class
European-descended typically-abled men, for whom there is ample material. What
of the anonymous and marginalized people, such as women, children, the poor,
and especially people with disabilities, who leave few textual traces or
evidence? I rely heavily on my friends and colleagues, to get a sense of the
pertinent questions to ask. But when dealing with issues of embodiment,
presentism is an unsolvable problem. The experience of having a disability in a
world with paved streets, aspirin, the internetÕs vast information, and mass media is far different from one
without those things and it is impossible for us today to recreate that state
of being. As is clear to everyone working in disability studies, once you know
one person with a disability, you only know one person. But curators do exhibitions.
This past spring, Susan Burch and I immersed ourselves in
drafting a script for a possible traveling exhibition (contingent on the
availability of funding) on the history of disability. After intense mutual
cogitation, we established the arc of the narrative, based upon 1) the material
record already in the museumÕs collections and what we believe is available
elsewhere 2) the one main idea that we think most people should know about this
topic (that people with disabilities have always existed and if you look at
familiar historical themes through a disability framework, what you think you know undergoes
surprising change) and 3) a few big, common, easily digestible, historical
themes that are particularly important in the history of people with
disabilities. Once we narrowed down the content in this way, we drafted labels
for as much as we could with what was at hand. The next tasks, in addition to
raising the funding for the exhibition, are to locate and acquire the objects
weÕve identified but donÕt have, fill in and edit the script text, link the
script to the selected objects and images, create a website, get a designer on
board to design the show, build the thing, and get it booked and on the road.
These things happen simultaneously, of course. The script is constantly shifting,
as we acquire some objects and give up on finding others. The core of the work
is how to get objects to express themselves and get visitors to absorb the
meaning.
In a 2005 exhibition on the history of polio (www.americanhistory.si.edu/polio),
Whatever Happened to Polio?, we
wanted to get across the point that many people who had had polio had lasting
physical consequences. Their bodies were different in ways that made it
difficult to find comfortable furniture and clothes that fit.to take public
transportation or drive a car, and do some everyday tasks. We did not want to
reproduce the stereotypes of over-coming or pity or be heavy-handed about bodily
difference. In conversations with people who had had polio, I heard about shoe
buddies and clubs where people with a significant difference in the size of
each foot could find other people who matched them in sizes, gender, and taste
and exchange shoes. Exhibiting a pair of obviously mis-sized shoes seemed like
an exemplary way to get the experience of bodily difference across. As I was
scheming about how to wiggle my way into the shoe buddy 
community,
luck arrived in the shape of Tobin Siebers. I met him at an SDS meeting. We talked about polio and shoes and he
told me about a short story he had written related to his difficulty in getting
shoes. He usually had to buy two pairs but when cleaning out his motherÕs
closet after her death, he found the exact match to his favorite red loafer. He
wore her shoe when he got married. The happy part for us was that he donated
the shoes, a copy of the story, and a photograph of himself on his wedding day.
The shoes and their accompanying context were pitch perfect. It is this
combination of artifact, experience, and historical event that the current
exhibit strives for, as well.
Timelines for these sorts of exhibition always inject the
elements of surprise and frustration. In a sense, we have been planning for
this show for over 50 years, if you begin counting from when some of the
objects were acquired. In more realistic terms, it will take 2-3 years, from
approval to launch and include a team of about thirty people. Large exhibits
with numerous objects and more audience testing may take 4-5 years to plan. The
actual design and building of this 1500 square foot show will take about six
months. But internal review committees need to approve the topic, concept, design,
and use of museum resources, which takes time and lots of smiling and smoozing. We are incorporating universal design
at all levels, from type fonts and color palettes to language and alternative
formats. Once the show opens,
there is on-going publicity, public programming, booking/crating/shipping/installation,
facility reports on security and environmental conditions, docent training, and
responding to visitors, related to each venue. The numbing managerial juggling
is redeemed by the pleasure of sending out an opening reception invitation that
asks, ÒWill you need a chair or be bringing your own?Ó
Bricks
and Mortar: Museum of disABILITY History, Buffalo, New York
by Theresa Fraser (tfraser@people-inc.org)
The Museum of disABILITY History is the only Òbricks and mortarÓ Museum
dedicated to advancing the understanding, acceptance, and independence of
individuals with disabilities. The
physical home of our Museum is accessible, although relatively small and can
only accommodate around twelve visitors at any given time. Finding a larger
facility to become our ÒpermanentÓ home has been identified as one of our top
priorities in our strategic plan.
We are currently in the process of purchasing a new building in the
Buffalo area which is ideal to house our growing collection. We expect to move to this larger
facility and host a grand re-opening in the summer of 2010.
Our ÒvirtualÓ home (www.museumofdisability.org)
houses additional exhibits as well as catalogs to search our collections and
archives. Our website has two
versions, a flash-based version, and an accessible HTML version. Viewers have a variety of accessibility
options, from short, medium, or long descriptions to changing colorchemes as
well as text size options. Our
site is divided into six separate wings, each showcasing specific exhibits
relating to Disability History. We
also feature a teacher resources section which includes our newly developed
Disability History lesson plans for grades K-12.
Our Museum was founded in 1999 by Dr. James Boles, the President and CEO
of our parent organization, People Inc.
Dr. Boles was teaching a Disabilities class at UB and was surprised to
learn that there was a lack of Disability History resources available to
students and researchers. He made it his mission to create the first ever
Museum of Disability History. The museum started as a small collection of
materials and one small traveling exhibit. It has now grown to house over 4,000 items, exhibits
covering a variety of topics both in our ÒphysicalÓ and ÒvirtualÓ realms, and a
constantly growing research library.
The exhibits in the Museum consist of reproductions of images
of people, buildings, documents, and objects that are related to the history of
people with disabling conditions throughout time. The exhibits also feature
objects that were used by people with various disabilities, such as crutches,
eating and drinking utensils, wheelchairs, and ceremonial objects.
The MuseumÕs exhibits have a primary focus on Intellectual
Disability, but also touch on the social concept of disability, the condition
of being Òdifferent.Ó The Museum tries to show the reaction to and treatment of
people with disabilities as SocietyÕs understanding of disability evolves.
The Museum purchases a number of items for the collection,
but we also have had some very generous donations from the general public, and
people and institutions involved in the disability community.
We have a wide variety of visitors from individuals with disabilities and
their families to students, and human service employees. We are open to the
public Monday-Friday from 10-4.
Large groups can call and schedule tours in advance. We have a
specialized research library consisting of an array of rare books and
periodicals. Due to the rarity of
the items in our collection, our library is non-circulating. Researchers are welcome to come to the
Museum and our staff will gladly assist them with viewing items from our
library and archives, utilizing our microfilm reader, or making copies of
delicate materials. We have a
private room available for individuals to conduct research in a quiet setting.
Our Museum has worked with a variety of local colleges to conduct
outreach presentations on disability history, awareness, and etiquette, as well
as in-services outlining the availability and use of our newly developed
Disability History Curriculum for grades K-12. The lesson plans are aligned to
New York State as well as National Learning Standards and are available for
free in the teacher resources section of our website.
We work with several colleges in the area. We have an ongoing relationship with Buffalo State College,
frequently completing internships with students from the Museum Studies
Program. More recently, we teamed up with the University at Buffalo to establish the first Center
for Disability Studies. The purpose of the Center is to encourage the study,
teaching and accurate representation of disability history and of individuals
with disabilities. The Center will sponsor a visiting scholar for one semester
each academic year beginning with this upcoming spring semester.
Our parent
organization, People Inc. is a not-for-profit, organization that services the
counties of Erie, Niagara, Wyoming, Chautauqua, Cattaraugus, Orleans, Genesee
and Allegany. People Inc.Õs exists
so that individuals with disabling conditions or other special needs have
the support they need to participate and succeed in an accepting society. People Inc. was founded in 1971 by a
group of parents, professional and community members concerned about the
quality of care provided to individuals with developmental disabilities. The agency has grown over the past 30
years into one of the largest human service agencies in Western New York,
offering an ever growing multitude of services to meet the evolving needs of
our service population.
Our current priority is to relocate our Museum to a larger, permanent
facility. We are planning to
redesign our exhibits and add some new, interactive exhibits in our new
facility. We expect to be moved
and ready to open sometime next summer (2010). With additional archival storage space, we can not only house
our growing collection, but acquire larger items including objects that we were
unable to house before. We plan to continue to expand our collection, create
new exhibits, and remain a valuable educational resource to not only our local
community, but our National audience as well.
A Matter of Integration: Disability
History & The US Survey
Laurie Block with thanks to Graham Warder
Note: Come discuss the following in person at the AHA
session, ÒBecoming Helen Keller: Perspectives and Experiences Integrating
Disability into U.S. Survey, Higher Education, and Secondary School CourseworkÓ
Saturday, January 9, 2010: 11:30 AM-1:30 PM
What was a
museum in the 19th century?
How would a family living in Ohio or in Kentucky find out about a school
for the blind in the 1850s? How
have the causes of blindness and deafness changed over time? How are the
demographics of contemporary disability similar to or different from those of
the 19th century? And
what exactly did the Socialist Party propose in its 1904 platform?
These questions are just a sample of those we have been
asked over the last two years, as we worked with a group of six high school
history teachers, each from a different school, on a project called Becoming
Helen Keller: Integrating Disability History into the US Survey, funded by
the National Endowment for the Humanities. The project has had several other names, including ÒHelen
Keller and Her TimesÓ and ÒInterpreting Helen Keller,Ó but we have decided to
keep the curriculum aligned with a film documentary currently in production for
the PBS American Masters series with a broadcast date anticipated in late 2011. The promotion for both products should
enhance the reach of each product to different audience niches.
Becoming Helen Keller, the curriculum, is being
produced by three partners, Keene State College, led by Dr. Graham Warder; the
Disability History Museum, www.disabilitymuseum.org,
led by Executive Director Laurie
Block; and the Hampshire Education CollaborativeÕs Professional Development
Staff, led by Richard Cairn. There
is a team of academic advisors involved with the project, but central to the
workÕs development process is a team of six secondary school teachers. Each of
these history teachers comes to the project voluntarily, and they represent
entirely different types of school districts in western Massachusetts –
different in terms of class, geography (rural, urban, and suburban), financing (public
and private), and ethnic and
religious backgrounds. All are
paid a small stipend to work with the project partners, and all have shown up
faithfully for evening meetings during the school year and to an annual daylong
workshop over a period of two summers.An earlier iteration of some of this work
was piloted with several teachers from Newton North High School in eastern
Massachusetts, and many of those early formative evaluations helped shape the
more recent work. [Western Massachusetts is characterized by medium sized
cities and small towns, many with economies that have not picked up since the
precision tool industries that used to flourish here moved offshore or closed, and, rural
communities that also struggle for stability. Healthcare, the numerous colleges in the region, and
insurance companies provide the majority of the regions jobs.]
A word about the Disability History
Museum. This project began as an
outgrowth of the website associated with the NPR radio series Beyond Affliction, produced by Laurie
Block with Jay Allison.
Established in 2000, it is an entirely online effort, one supported by
donations and grant funds. Its mission
is to foster deeper understanding about how changing values, notions of
identity, laws and public policies, have shaped and influenced the experiences
of people with disabilities, their families and communities over time. It is a
work in progress, and the site has grown slowly but steadily. It hosts a
growing study collection in its Library, and in this article the curriculum
work, currently in production, that will open the projectÕs Education sector is
described. Further, in
relationship to this effort, a new iteration of the website will be coming
online near the beginning of 2010.
Our Becoming Helen Keller pilot project teachers of
course knew Helen KellerÕs name and the story told in The Miracle Worker. With one exception–a teacher who
worked in a private school for the deaf–none of them knew anything about
disability history. The tasks this
group had were significant, and were key to the partnershipÕs curriculum
development process. We
periodically gave them mounds of primary source documents to read, arranged in
loose chronological groupings with vague themes. The documents were all related directly or tangentially to
the biography of Helen Keller. But
we emphasized that the curriculum we were developing would not concentrate on
the details of KellerÕs personal life.
Rather, it would use those details -- the experiences she had, and her
long lifeÕs legacy -- as a vantage point to look at topics in disability
history, topics affecting a broad population, able and disabled alike.
The teachers burrowed into these mounds with gusto, and
sometimes an occasional groan.
Their assignment was to identify which primary source materials among
the too many provided were most interesting to them personally and which were
most useful for developing lessons for their students. They then had to identify specific
paragraphs within a source they especially liked and to explain to us why, and
what pedagogical objectives they would use them for when teaching one of their
own survey classes. In other
words, they had to weed down to what they thought the best materials were and then
explain to us why their choice was a good fit. Along the way, they often
related how they would use the work in an assignment, and what additional
materials they would need personally and for their students to understand the
primary source better.
From the very beginning of this project, we understood that
the students would face the curriculum without knowing a world before curb cuts
and guarantees for special education.
We had to introduce our topics, provide key texts, and delineate
milestones in policy or technology or cultural attitudes. We also had to connect disability
history with what they already taught.
In earlier surveys of high school teachers we were told quite clearly
that although they might have a significant
interest in learning more about disability history as a subject, a curriculum
about such content would have to integrate it within traditional themes,
topics, political turning points, and social movements, as typically taught in the
US History Survey. They had little
doubt or hesitation that any other approach would be rejected by many otherwise
interested teachers simply because they already needed to cover so much to meet
education reform standards and standardized testing requirements. Time was very
precious in these classrooms.
Helen Keller, as she often did in her own lifetime, provided
brand recognition and a myth ready to be deconstructed. Although there is increasing
recognition that Keller grew up into an advocate, a suffragette, someone who
had radical opinions and even a Socialist Party card, when we ask what she
actually did, more questions arose. What was her education like? How did
she earn her living? How was her search for economic independence like or unlike
that of other people with disabilities in her own day? How did she become one of the first
real-life child media sensations, and later one of the first global media
stars? Why did her life story have
the power it has, and why does it still have some of that power? It quickly
becomes apparent that answers to these questions are not readily available, but
that the curriculum must take them
up –directly and indirectly.
Keller lived from 1880 to 1968, and the volume of her correspondence
and print record (speeches, articles she wrote, and the newspaper coverage
about her), not to mention the photographic and film record, provides plenty of
primary source material as a starting point. Much of it was similar; from
decade to decade it cycles a set of themes, a constant rhetoric both verbal and
visual, and a fixed number of gestures and postures. The focus of her own writing and speech-making was on the
importance of education and employment for the blind, the deaf, the disabled,
women and the poor. Keller spoke about all this in a lofty, spiritualized,
socialist call for attention and justice. Her personal letters, and those of many
people around her, were far more
spontaneous than her public utterances, but we will never know many intimate things
about her because one large set of materials was destroyed in a house fire in
1946 and another set of materials related to her international work was
destroyed in 2001 when the World
Trade Center Towers fell and the offices of the American Foundation for the
Overseas Blind were destroyed.
We
knew when we began giving notebooks of primary source materials to teachers,
they would come back to us wanting to understand what it was they had just
read. But how would they shape
their questions? Our materials
were so novel that we could not refer to textbooks, nor could we rely on
standard secondary source materials, though everyone in the room knew The
Miracle Worker tale – which, in a way, is one of the burdens of the
project that we first had to resolve.
The initial questions about Keller always quickly go back to the
basics–how did she learn to communicate? And in more than one language?
And read Milton and Shakespeare?
Was it sign language or the manual alphabet, and how are these two modes
different? How were they understood in the late 19th century? And
where did you send a child who was blind or deaf to school? What kind of
education were they provided? And who paid the bill?
In the very earliest version of this curriculum work, we did
not have Keller as a character; we
addressed these questions by concentrating on the establishment of deaf
schools. But in a team evaluation of our materials, the public school teachers
we worked with argued that for their classes a focus on deaf education, though
interesting, was too narrow. Connect the deaf schools to something bigger, they
said. And as we talked around our
Keller curriculum seminar table and discussed the establishment of residential
schools for the deaf and the blind in relationship to the founding of schools
for the Òfeeble-minded,Ó they insisted we include more. We talked about the founding of schools
for people with disabilities as part of a reform movement inspired by the
Second Great Awakening and how it was related to the establishment of common
schools in the same period.
Those relationships are easily described. More arduous has
been finding the best documents to illustrate the historical connections. Once we select a suite of appropriate
primary sources with the teachers, we also begin a process of annotating them
and developing introductions for each one in order to contextualize the content
both for teachers and for young people.
They need to be informed about who was who and who did what: Samuel
Gridley Howe and Horace Mann, Thomas Gallaudet and Laurent Clerc and Mason
Cogswell. How were their efforts
to establish their various schools similar and different, and how intertwined
with other education reforms? But
we found ourselves also having to address very basic questions about schooling
for a typical child in the 19th
century, and how it might vary from region to region! Only with this background established could you get on to
KellerÕs education with solid footing.
Only then did the teachers we worked with feel comfortable with
explanations about the debates over oralist and manualist methods for deaf
education, or the fact (shocking
to many) that four different and incompatible types of raised print competed
for space on library shelves in schools for the blind (Braille was not the
standard mode of tactile print until the 1930s).
Another example:
To discuss the significance of why Keller as a child was regularly asked
to display her ability to communicate, and to explain the audience responses of
the period, we needed to provide some context for the exhibition of human
differences in the 19th and 20th centuries. Keller would
demonstrate her abilities often as a child, but she came to tell her life story
as a part of her public speaking again and again. Sometimes she did so within forms of performance that were entertainment–she
was a well paid act in vaudeville between 1920 and 1924, and she was a popular memoirist, but for 25
years and more her public speaking was as a professional fundraiser for the American Foundation for the Blind. Her journeys for the U.S. State
Department in conjunction with overseas nonprofit organizations during the Cold
War had the flair of a goodwill ambassadorÕs visits, but also had the purpose of attracting
funds to various useful health care, social welfare, and education causes. But
how did audiences understand what she did and said back then, and how do we
hear this message today? How do we
bring Helen Keller, and disability history with her, into the classroom? Any faculty or graduate students
interested in interning or working on this type of problem, do please inquire
by writing info@disabilitymuseum.org.
Several lessons within our curriculum modules take up this
topic of KellerÕs performances. We begin our look at public performances with a
lesson that studies P.T.BarnumÕs displays of Charles Stratton (known as ÒTom
ThumbÓ) and his wife Lavinia Warren.
This lesson compares the souvenir pamphlets and photographs that were
distributed about them, a set of highly constructed autobiographies and images,
with similar advertisements and written materials about the ÒSiamese twinsÓ Cheng
and Eng and the musician Blind Tom.
Christopher Gould piloted these materials in his Amherst
High School class and found that the students had to work hard to grasp the
experiences of these people, but they were riveted. These characters just lived really different lives! Gould discussed
matters of agency, asking how they had come to find their jobs in show business.
They discussed what other possibilities for employment existed for any of them
and whether or not the built environment facilitated jobs for little people, conjoined
twins, and a non-verbal but gifted African American musician. He talked about how much they earned, how
the money was divided, and how Cheng and Eng could end up with a number of
slaves and children -- his quite talkative students were left speechless when
they realized the number of descendants these conjoined brothers produced.
To provide this lesson
with sufficient background required significant preparation. One of the first questions our teachers
asked us when discussing Barnum was what the word ÒmuseumÓ meant in the 19th
century. We had to provide a context for the souvenir fictional autobiographies
associated with BarnumÕs American Museum human exhibits, and give a sense of
the range of entertainments then available. For this unit they found a variety of materials on several
different websites. Still, the
souvenir autobiographies and the ads facilitated a wide ranging classroom
discussion with our teachers, but then they found this to be true with their
students. To talk about the
exhibit of human difference in the 19th century required discussing
how DarwinÕs ideas permeated popular culture, how social Darwinism evolved, the
idea that disciplines of study such as sociology and anthropology had very few
tools and almost no authority in the 19th century, that
communication tools such as advertising were just coming into a mass-market
world. All these ideas were
enthusiastically explored. And
this helps set up discussion of KellerÕs public life, how and why Keller did
what she did given the available choices.
A lesson
constructed around a comparison of KellerÕs ÒHow I Became a SocialistÓ with
Eugene DebsÕs essay of the same title prompted a different series of questions.
Working at a Catholic High School in Holyoke, Massachusetts, an economically
depressed community, Catherine Peters used these two documents when discussing
populism, multi-party divisions, and the turn-of-the-20th-century
electoral landscape. Her students
seemed genuinely stumped when asked what a socialist was. But KellerÕs and DebsÕs statements led
to a discussion about who gets to decide how goods are distributed across all
classes and groups in society. The lesson also provides an opportunity to look
at this question in the context of a world without anti-discrimination law,
civil rights guarantees in education and employment, fair labor regulations,
and civil liberties guarantees. All these topics needed background essay
support -- what another teacher in the group called Òlecture burstsÓ, short,
well written, contextual pieces that help someone who did not have the
opportunity to sit at our seminar table come to the material and feel grounded.
When these essays are completed for this lesson, they will include where and
how people with disabilities fit into the issues of employment policy, labor
struggles, and political debates about poverty and economic rights in
1904. We all agreed that the
Socialist Platform of 1904 -- which included a graduated income tax,
unemployment insurance, old-age pensions, workmenÕs compensation, free public
kindergartens, improved school buildings, free legal advice for the poor, and free
cremation services -- would also
be part of the primary source materials.
This last example about Debs and Keller brings up another
point. The production team developing the curriculum has been asked to
incorporate into the materials something not initially built into the design of
the project, but increasingly useful to teachers working with Smart Boards and
media-saturated students. All our
high school teachers point out that a contemporary hook that they can use to
lead into the historical material helps to focus their classrooms. But they strongly suggested
that the hook on which a set of questions for young people can best be hung
should be interactive -- just as we see the online New York Times
developing, for example, a health insurance time line, or data visualizations during
elections that show state by state swings in voting preferences from Democratic
to Republican and back again.
The teachers we work with universally seek out these kinds
of tools as they prepare for their classes. Timelines can be produced with a moderate amount of work, but
representations of quantitative, longitudinal information, though extremely useful,
are much more costly, requiring research
and digital tools not always available to small producers. But it would be
wonderful indeed to display visually just how a population called ÒblindÓ or
Òvisually impairedÓ or ÒdeafÓ changed over time, how during KellerÕs lifetime the services offered
changed and where they were provided changed, or how employment rates for those
labeled as belonging to these groups changed -- or did not change. Building such tools remains a hope for
the project, one that the funding currently available does not allow us to
realize.
Developing a disability history curriculum that will hold up
as stand-alone professional development is labor intensive and financially
expensive. In addition to identifying, digitizing, and cataloguing the primary
sources, we must also make sure they are useful for teaching and provide
sufficient support to contextualize the historical records. To do that work,
weÕve used a small team of graduate students and recent Ph.D. candidates,
including several members of the DHA.
When publishing on the web, there are the usual editing processes, but
also the need for technical fixes that make the online work accessible. This means our team must combine
pedagogical, historical, and information-management skills, as well as
financial development and management.
The effort of raising the funds to keep staff and freelancers paid is
not inconsiderable.
We have about six to nine months of work ahead to complete
the Becoming Helen Keller curriculum.
Along the way, we have built and designed a completely new iteration of
the Disability History Museum that will come online, slowly, toward the end of
this year. When we open this new
interface late in 2009, we will have about six to eight lessons available, and
as the background essays and copy editing, annotations and introductions for
the next 24 lessons are completed, we will bring these online throughout
2010.
Then, we can have a party.
ZINA WEYGANDÕS
HISTORY OF THE BLIND IN FRANCE NOW AVAILABLE IN ENGLISH
Stanford University Press recently published DHA member Zina
WeygandÕs The Blind in French Society
from the Middle Ages to the Century of Louis Braille. The integration of
the blind into society has always meant taking on prejudices and inaccurate representations.
Weygand's highly accessible anthropological and cultural history introduces us
to both real and imaginary figures from the past, uncovering French attitudes
towards the blind from the Middle Ages through the first half of the nineteenth
century. Much of the book, however, centers on the eighteenth century, the
enlightened age of Diderot's emblematic blind man and of the Institute for
Blind Youth in Paris, founded by Valentin Hay, the great benefactor of blind
people.
CATHY KUDLICK INTERVIEWS HENRI-JACQUES
STIKER – PART TWO
Henri-Jacques Stiker is the first scholar to attempt a
global, sweeping history of disability from Greek times to the present. Trained in philosophy and anthropology,
he has been the leading figure in disability studies in France since the
publication of his important book Corps infirmes socits : Essais
d'anthropologie historique in 1982.
English-speaking readers know the second edition of this book as History
of Disability published by University of Michigan in 1999. Among the dozen books he has authored,
co-authored, and edited are studies of art, public policy, and theory, all
related to disability, and most of the work grounded in history. Now retired
after teaching at a number of universities in and around Paris, he epitomizes
the French academic, full of enthusiasm and energy, trained in several
languages and conversant with scholars in a variety of disciplines. He is warm and open to every kind of
idea. He speaks slowly and
deliberately, a fact that sometimes makes it easy to forget just how well he
blends theoretical abstraction and practical knowledge of policy.
Kudlick interviewed him at his home on the edge of the
Montparnasse neighborhood in Paris in February 2008. What follows is her transcription and translation of their
ninety-minute talk. In Part I they
discussed how he came to disability history and the changes he made to the
third edition of Corps infirmes.
In Part II they pick up with his thoughts on the state of disability
history as a field in France, his current and future work, and his advice for
young scholars.
CJK: What do you think of the current state of disability
history in France?
HJS: ItÕs just like disability in general; itÕs not well
recognized within history circles at the university. There are a few forays. There are books here and there, such
as mine and the work of Jean-Christophe Coffin on the history of madness in the
nineteenth century, so that makes him a kind of disability historian. And thereÕs Zina Weygand on blindness. There have been a few texts on the
history of deafness such as Harlan LaneÕs oriented toward history, which is an
important book. And then there are
snippets by people like Bernard Mottez, a sociologist, who is one of the
leading theorists of deafness in France. He was a professor at the Ecole des
Hautes Etudes en Sciences Sociales.
Now he is retired and in poor health, so he doesnÕt publish
anymore. He isnÕt a historian, but
heÕs interested in the historical aspects of deafness.
CJK: Is he deaf himself?
HJS: No, not at all.
He came into the study of disability a little bit like me, through the
humanities and social sciences, only occasionally in the beginning. But he was really taken with the
communitarian cause and became quite militant.
CJK: A little like Harlan Lane, no?
HJS: Yes, heÕs a kind of French Harlan Lane except that heÕs
less a historian. But his work did contain some history, a partial history of
deafness.
But
really, all this work is still very scattered. ThereÕs no one place or person who says Òmy principal area
of research is the history of disability.Ó
CJK: How do you explain this? You have Michel Foucault and Georges Canguilhem, and a
number of others who deal directly with the subject, but not a single historian
who says ÒIÕm working on the history of disability.Ó Why?
HJS: I think this can be explained by two things. For one thing, the French university
system and the goals of research are very much linked to disciplines. You have to be a sociologist, anthropologist,
psychologist, etc. There are very
precise criteria. When you touch
on a topic such as disability, you are forced to be inter-disciplinary. So someone who wanted to present a
thesis on disability would have to link it to a discipline, saying for example
that itÕs history - this was the case with Zina Weygand. But anyone who works in an
interdisciplinary way would find little room in the French university, which is
very, very structured around disciplines.
ThereÕs no discipline devoted solely to disability.
CJK: ThereÕs history of medicine and history of science,
which exist in France and fall outside of this disciplinary structure. . . .
HJS: This is true - there are historians of medicine and of
science, in fact many of them. But
there have never been any of disability.
CJK: So the second reason that there isnÕt disability
history in France?
HJS: The
second reason is because the subject, if not completely marginal is
unsettling. People are
uncomfortable with the topic. So
itÕs better to concern themselves with Napoleonic Wars, agriculture, etc. I canÕt find the right word, but it
makes people uneasy, sometimes afraid. So to free themselves they claim itÕs a
question of technique, a topic for specialists, and that disabled people need help
with living their lives. So
theories of disability donÕt interest them.
I
say this because when I had a manuscript on art [and disability] that I wanted
to send to the big publishing house Seuil, I got a letter back from the person
in charge of art saying [essentially?] this very thing: that disabled people
didnÕt need someone creating a theory for them, and in the end they probably
wouldnÕt understand what people wrote about them anyway. Real disdain!
CJK: Goodness! You should have kept the letter!
HJS: It shows the mentality that exists.
CJK: And of course everyone knows there are no professors
with disabilities, at least nobody that will admit it.
HJS: Well, there are a few, but really not many.
CJK: Of course I was kidding.
HJS: In my research institute [labo] we had a strange
situation where I was immediately brought in by people such as Michelle Perrot
who had been founders of womenÕs history. They had ratified womenÕs history as
a subject in history against all odds.
So they were sensitive to the fact that disability could also be listed
as a historical subject. When she
left, her successor had a serious accident that left him in a wheelchair. It was Andr Gueslin, a historian who
studied poverty. This put him in a
somewhat similar situation to that of [Robert] Murphy, who found himself
knowing disability first-hand. So
when he first arrived at the institute, he was running around like a rabbit. He
is now sensitized, and yet he doesnÕt do disability history, but rather the
history of poverty in the nineteenth century.
CJK: Of course there were plenty of disabled people among
the poor of the nineteenth century!
HJS: Well, we did lead seminars together. And there are
other scholars at the university level with disabilities.
CJK: Yes, thereÕs Jacques Semelin [a blind professor at the
Ecole des Hautes Etudes who now studies the history of genocide]
HJS: And others no longer here . . . . one who was a good
friend of mine, Rene Claude Lachal who was [quadra?]plegic and a director of research
at the CNRS. He was very good in
Italian and did his thesis on disability in Italian literature. Today there is Jean-Francois Ravaud who
had polio and is in a wheelchair.
So a number of researchers and teachers with disabilities.
CJK: Even so thereÕs no real field of research.
HJS: The strange thing in France is that there are a number
of fine studies in different fields, sociology, history, anthropology, some
really good work. But thereÕs no
Ôofficial positionÕ on the subject.
CJK: ItÕs the same with womenÕs history. You have a number of people studying
the topic, but no real field of womenÕs history as there is in the UK and USA
or the Scandinavian countries.
HJS: But of course thereÕs the publication of a major
five-volume study on the history of women!
CJK: Yes. But
what I mean is that there isnÕt a field, a sense where students say Òhey, we
absolutely need to have someone who studies the history of women.Ó
HJS: ItÕs true, that there arenÕt any chairs in WomenÕs
Studies like there are in the USA.
CJK: Well, there arenÕt hardly any for disability studies
either.
HJS: But IÕve attended several meetings of the Society for
Disability Studies where there are lots of participants, some of them even with
positions in universities where they teach disability studies.
CJK: Yes, it it isnÕt institutionalized in the same
way. Take the example of my own
career: I didnÕt start into disability studies until after IÕd gotten
tenure. I didnÕt really think
about it because I was so caught up in writing my thesis on cholera epidemics
that I didnÕt even dare say even to myself that disability was something that
might be interesting. In
fact, I had no idea of what was going on in this field, that there was anything
out there.
Now
of course we have a whole younger generation - not as much among historians,
but in literature and sociology - and hopefully before too long in history too,
but itÕs still going to require a bit of work!
HJS: Hmmm, I was thinking that your situation [in the USA]
was a bit further along . . . .
CJK: Not really, unfortunately.
HJS: In France thereÕs an effort to create, to structure an
area of research on disability, thereÕs a hope coming from the new law of 2005
on disabilities that envisions an entity focused on disability. The goal of this blue ribbon committee
[observatoire] is to assess the current state of disability and to have
proposals in three areas: prevention, professional development, and research. The research group, of which IÕm a
part, is devising a structure to facilitate research on disability, that is,
setting up research groups, that specialize in this area or that are tied to
larger groups that offer grants, to guide research in the social sciences:
history, sociology, anthropology, social-psychology, etc., because medical
research and genetics is fairly advanced, with labs and such. And in the technological realm thereÕs
lots of work on prosthetics and other devices.
CJK: To move on to another topic: if you could pick any
three books you know of in French that should be translated for historians who
read English, what would they be?
HJS: Well, I wonÕt include mine, which has already been
translated, or Zina WeygandÕs [The Blind in French Society from the Middle
Ages to the Time of Louis Braille, Stanford University Press, 2009] for the
same reason . . . . [long pause] Well!
Strange how hard it is for me to think of something!
Okay,
the work of Bernard Mottez on deafness.
ThereÕs a recent collection of his essays called Les Sourds existent-ils?
[Do the Deaf Exist? French ed., LÕHarmattan, 2006] pitched to
university-level readers. [more silence....]
There
are some conference proceedings and edited collections, but theyÕre all pretty
uneven - some really good work here and there . . . .
Ah!
ThereÕs the recent good book by Alain Blanc, Le Handicap ou le dsordre des
apparences [Disability or the Disorder of Appearances, French ed., Broch,
2006] HeÕs a sociology professor at the University of Grenoble.
And
I think that within the American context that is .... Simone Sausse-KorffÕs
book, Le miroir bris : L'Enfant handicap, sa famille et le psychanalyste [The
Broken Mirror: the Handicapped Child, Her Family, and the Psychoanalyst, French
paperback ed., Hachette, 2009] ItÕs been out for awhile, but itÕs a very good
book.
Beyond
that there are the books on special education that are good . . . .
CJK: But theyÕre pretty specialized because the French and
American systems are so different, right?
HJS: Definitely.
CJK: Okay, to pose the question in the other direction: what
English-language books on disability would you like to have translated into
French?
HJS: Tom ShakespeareÕs recent book, Disability Rights and
Wrongs [Routledge, 2006].
CJK: What about for historians?
HJS: IÕm afraid itÕs your job to find books and ask that
they be translated into French!
CJK: [Laughing] Okay.
But IÕm asking in the spirit of a trans-Atlantic dialogue.
HJS: For translating into French I just remembered the book Disability
and Culture by Ingstad and White [University of California Press, 1995]. I
think French readers would really benefit.
CJK: Another big question: what are you the most proud of in
terms of your work?
HJS: I canÕt respond to such a question . . . . I guess it
would have to be Corps infirmes et socits [A History of Disability,
Michigan, 2000] because itÕs where I developed things to the fullest . . .
. But I also like my book on art,
Les fables peintes du corps abm : Les images de l'infirmit du XVIe au XXe
sicle [Painted Fables of the Damaged Body: Images of Infirmity from the
Sixteenth to Twentieth Century, French ed., Broch, 2006] because I think itÕs
an original point of view that has never been developed like this before. I know that people like [David]
Mitchell and [Sharon] Snyder have worked on art, so IÕm far from alone. But to have put forth a far-reaching
hypothesis like this about painting. Yes, itÕs this that I like most of all
that IÕve done.
CJK: What are you working on now?
HJS: I have a book thatÕs about to come out, which is
focused on questions about disability in France over the past forty years. [Les
mtamorphoses du handicap de 1970 nos jours : Soi_mme, avec les autres
(Broch, 2009)] The big questions of whatÕs at stake can be applied maybe not
universally, but certainly well beyond France. But because I was asked to write about this in the French
context, all my examples of laws, of events, are French examples, so I donÕt
think itÕs exportable. Even though
questions of suffering, questions of creating distance from the Other,
questions of laws of compensation, so many questions, discussions of concepts
and theories, all these are things that reach beyond France. But the book still isnÕt really transferable.
IÕm
working on another project that I think would translate much more easily, that
is to take up the question of disability within religions. IÕve done [in A History of
Disability] a chapter on the Jews, on Christianity, the birth of
Christianity, evangelicalism,
which means IÕve already written something about it. But I really want to develop the perspective that religion
has on disability. That would be
of interest well beyond France.
CJK: Have you started?
HJS; No, not really, but I have things in mind. ItÕs going to require a lot of
work.
CJK: Oh, but this would be a huge benefit to the field!
HJS: The problem when you write about disability is that
youÕre always working from within a specific context. You take your examples, etc., from around you. As a result, a German, Englishman, an
American, a Japanese wonÕt be inspired.
So you have to find subjects [with broad appeal.] I could maybe write a
short book of a hundred pages or so about what are mostly universal issues. For
the past century there are things that apply more or less everywhere. So I might do that too.
CJK: YouÕre doing a lot!
HJS: Yes. And IÕm working on a number of articles
too. For example IÕm writing
something now for Ethnologie franaise, which is a prestigious journal, where
IÕm taking up the subject of the anthropology of designations and
classifications, which is also something that could be translated. Articles such as these could be part of
a collection . . . . But really,
IÕd like to write a whole book on the subject of anthropology of disability in
the major religions.
CJK: So now youÕre retired. . . .
HJS: Yes, IÕm retired. But since IÕm associated with the
research institute called ÒIdentity, Culture, Territory,Ó thereÕs no fixed
retirement date. And thereÕs no fixed
date because IÕm not paid. So
everything runs well because IÕm there and not costing them a penny.
CJK: So you travel a lot? And you
give lots of talks....
HJS: Oh yes. Not too much outside of France but from
time to time to Belgium, to Switzerland.
I used to go to Quebec, but not so much any more.
CJK: Do you give advice for young
scholars who are just entering the field?
HJS: Oh yes! There are a fair number of them, and
they all come to me for advice.
ThereÕs a little germination process happening, a little harvest. Last week a young woman from Brittany
got in touch and we spent a couple
of hours at a bistro waiting for a train.
She asked me for advice about how to pick a dissertation director, how
to develop a dissertation, things like that.
CJK: So do you have advice for
new researchers?
HJS: Well, a number of
things. First, you need to have
broad cultural knowledge. So for
example, if youÕre going to study disability in the middle ages, you have to
steep yourself in the literature and philosophy of the time. You should not limit yourself to what
is strictly related to disability.
You have to get at what everyone is thinking about in a certain time:
human relations, their relationship to divinity, with nature. You have to study culture because often
disability can be found within these general elements of a culture.
At
least for now, donÕt expect to make a career today out of [doing] disability
[history]. [laughter] Unless, you have a university career that follows a
conventional path like the young graduates of the cole Normale Suprieure In other words, link yourself up with a
real discipline.
CJK: That seems like very good
advice! Members of the Disability
History Association will find it useful.
Thank you.
HJS: YouÕre very welcome.
Fin