Disability History Conference: Writing Comments, Feeling Rushed and Insecure

I’m finishing up comments for my session at the conference, Disability History: Theory and Practice, in San Francisco at the end of this week.  My session is entitled “Theory and Method: Defining Disability Historically III.” The first paper is “What is a Disability? The Historical Example of Incompetency” by Kim Nielsen.  The other paper is “The Theory and Practice of Making Mad People’s History Public History,” by Geoffrey Reaume.  My instructions are that ” comments should focus on the larger implications theoretically and methodologically for the study of disability history, the connections of these papers with other areas of disability history and of the study of disability, and with other areas of historical study.” I’m feeling insecure partly because I don’t have a lot of time to do this (wish I’d received the papers sooner!) but also I’m realizing that I don’t know as much as I should about disability history and the difference between this and disability studies.  I’m saving more detailed, specific comments on the papers for the authors, but here’s what I think I will do:

Before I begin my comments, I think it’s important to say something about my background and how I came to the field of disability history. My training at Cornell was in the social history of medicine, which takes the patient’s voice as a starting point and places medical consumers at the center of analysis. I also was trained in women’s history, with a multicultural emphasis, so learned how medical theory reinforced gender norms, racial stereotypes, and social hierarchies. Yet I also learned that clients were not passive victims of medical opinion and social control. Instead, patients and their families played an active role in the clinic and at the bedside, arguing with doctors, shopping around for care that suited their needs and pocketbooks, accepting and ignoring expert advice as they saw fit. My work on adolescent medicine and student health has explored how teenagers and young adults shaped and legitimized these medical fields.

I didn’t really think of myself as a disability historian until a book chapter I wrote, entitled, “’I Was a Teenage Dwarf’:The Social Construction of ‘Normal’ Adolescent Growth and Development in Twentieth Century America” appeared in a list of recent articles on disability history compiled by Penny Richards in 2002. Not long after that, I was diagnosed with bipolar disorder. So, here I am, a historian with a disability doing disability history, but still consider myself a novice in this field. Nevertheless, I think my background and experience in the social history of medicine, women’s history, and the history of childhood and adolescence can provide some useful categories of analysis to the field of disability history.

Kim Nielsen’s paper explores the question what “counts” as disability. I would agree that this eludes easy definition and add that this is especially problematic when defining mental disability. I’ve noticed a disturbing trend in a series of recently published books such such as Mad, Bad and Sad: Women and the Mind Doctors by Lisa Appignanesi; or The Loss of Sadness: How Psychiatry Transformed Normal Sorrow into Depressive Disorder by Allan Horwitz and Jerome Wakefield; and Shyness: How Normal Behavior Became a Sickness by Chrisopher Lane, critique the ways in which the mental health professions and Big Pharma have conspired to turn “normal” emotions and feelings into diseases.

I must confess that I find these books both intriguing and troubling. On the one hand, they are pretty consistent with historical work that demonstrates how deviance from accepted social norms was often classified as mental illness – Kim uses the example of how feminism was construed as a form of “madness;” others have looked at homosexuality.

On the other hand, these works seem to assume that there are clear boundaries between “normal” emotions and “severe” mental illness.  Another danger is that critiques of this sort trivialize the lived experience of having a mental illness and/or romanticize mental illness as a source of “creativity” or “brilliance.”

Other issues that are coming through in the paper:  who can/should write the history of disability? Does having a disability make one more qualified? [this question comes up in women’s history as well — I would argue that men can write women’s history too, just like women can write history that is NOT about women] The reliability of psychiatric survivor stories reminds me of similar questions regarding slave narratives as sources.  The ways in which gender, race, class, age, and other factors shape the experience of disability.

Finally, I want to say something about how we need to move beyond the asylum for sources and an interpretive framework for what Geoffrey calls “mad people’s history.” Doing this will not be easy: institutions are convenient repositories. Access to patient records in the United States has become much more difficult because of the Health Insurance Privacy and Portability Act. However, I think it’s time that we stop allowing the history of institutionalization/deinstitutionalization drive the narrative of mad people’s history, much in the same way that African-American historians have moved beyond the institution of slavery in order to capture the diversity of experience of members of the African diaspora.

Okay, maybe I have something to say after all . . .

Book Meme

My buddy Kittywampus has posted this book list meme — see how many you have read.   Supposedly the average American has only read six of the books on the list, so I’m  not doing too bad although some of these choices are embarrassing.

The rules are:

1) Bold what you have read
2) Put in italics what you have started to read
3) Put an asterisk next to what you intend to read

So, here’s my list.

1.  Pride and Prejudice *– Jane Austen — nope, but seen the miniseries with Colin Firth.

2 The Lord of the Rings – JRR Tolkien — tried it, couldn’t get beyond the first chapter of The Hobbitt.

3.  Jane Eyre — Charlotte Bronte

4 Harry Potter series – JK Rowling okay, I only read the first one does that count?

5 To Kill a Mockingbird – Harper Lee

6.  The Bible – read parts of it

7. Wuthering Heights — Emily Bronte
8. Nineteen Eighty Four – George Orwell — or maybe it was just the Mac commercial?

10. Great Expectations — Charles Dickens

11 Little Women – Louisa May Alcott
12 Tess of the D’Urbervilles – Thomas Hardy
13 Catch 22 – Joseph Heller

14. Complete works of Shakespeare — yeh, right.  I’ve read Hamlet and the Scottish play.

15 Rebecca – Daphne Du Maurier — why bother, when the film with Sir Lawrence is so fabulous?

16.  The Hobbit — JRR Tokien

17 Birdsong – Sebastian Faulks
18 Catcher in the Rye – JD Salinger

19 The Time Traveler’s Wife — Audrey Niffengegger

20 Middlemarch — George Eliot
21 Gone With The Wind – Margaret Mitchell
22. The Great Gatsby- F. Scott Fitzgerald
23 Bleak House – Charles Dickens

24 War and Peace — Leo Tolstoy

25 The Hitch Hiker’s Guide to the Galaxy – Douglas Adams
26 Brideshead Revisited* – Evelyn Waugh
27 Crime and Punishment – Fyodor Dostoyevsky
28 Grapes of Wrath – John Steinbeck (I’d like to re-read this one, as well as East of Eden)
29 Alice in Wonderland – Lewis Carroll

30 The Wind in the Willows — Kenneth Grahame
31 Anna Karenina – Leo Tolstoy

32 David Copperfield – Charles Dickens

33. Chronicles of Narnia — C.S. Lewis

34.  Emma* — Jane Austen

35.  Persuasion* — Jane Austen

36. The Lion, The Witch and the Wardrobe — C.S. Lewis

37 The Kite Runner – Khaled Hosseini
38 Captain Corelli’s Mandolin – Louis De Bernieres
39 Memoirs of a Geisha – Arthur Golden
40 Winnie the Pooh – AA Milne
41 Animal Farm – George Orwell
42 The Da Vinci Code – Dan Brown (but I wish I hadn’t!)
43 One Hundred Years of Solitude – Gabriel Garcia Marquez — twice!
44 A Prayer for Owen Meany – John Irving
45 The Woman in White – Wilkie Collins
46 Anne of Green Gables – LM Montgomery
47 Far From The Madding Crowd – Thomas Hardy
48 The Handmaid’s Tale – Margaret Atwood
49 Lord of the Flies – William Golding
50 Atonement – Ian McEwan
51 Life of Pi – Yann Martel

52 Dune — Frank Herbert

54 Sense and Sensibility* — Jane Austen

54 Sense and Sensibility – Jane Austen
55 A Suitable Boy – Vikram Seth — left this one on an airplane, may get around to finishing it someday
56 The Shadow of the Wind – Carlos Ruiz Zafon
57 A Tale Of Two Cities – Charles Dickens
58 Brave New World – Aldous Huxley
59 The Curious Incident of the Dog in the Night-time – Mark Haddon
60 Love In The Time Of Cholera – Gabriel Garcia Marquez
61 Of Mice and Men – John Steinbeck
62 Lolita – Vladimir Nabokov

63 The Secret History — Donna Tartt
64 The Lovely Bones – Alice Sebold
65 Count of Monte Cristo – Alexandre Dumas

66 One the Road — Jack Kerouac
67 Jude the Oscure — Thomas Hardy

68. Bridget Jones’s Diary – Helen Fielding
69 Midnight’s Children – Salman Rushdie

70 Moby Dick — Herman Melville
71 Oliver Twist – Charles Dickens
72 Dracula – Bram Stoker
73 The Secret Garden – Frances Hodgson Burnett
74 Notes From A Small Island – Bill Bryson

75 Ulysses – James Joyce
76 The Bell Jar – Sylvia Plath
77 Swallows and Amazons – Arthur Ransome
78 Germinal – Emile Zola
79 Vanity Fair – William Makepeace Thackeray
80 Possession – AS Byatt
81 A Christmas Carol – Charles Dickens
82 Cloud Atlas – David Mitchell
83 The Color Purple – Alice Walker
84 The Remains of the Day – Kazuo Ishiguro
85 Madame Bovary – Gustave Flaubert
86 A Fine Balance – Rohinton Mistry
87 Charlotte’s Web – EB White
88 The Five People You Meet In Heaven – Mitch Albom

89 Adventures of Sherlock Holme — Sir Arthur Conana Doyle

90 The Faraway Tree Collection
91 Heart of Darkness – Joseph Conrad
92 The Little Prince – Antoine De Saint-Exupery
93 The Wasp Factory – Iain Banks
94 Watership Down – Richard Adams

95 A Confederacy of Dunces — John Kennedy Toole

96 A Town Like Alice – Nevil Shute
97 The Three Musketeers – Alexandre Dumas
98 Hamlet – William Shakespeare
99 Charlie and the Chocolate Factory – Roald Dahl
100 Les Miserables – Victor Hugo

Going to Berlin

No, I’m not talking about Senator Obama’s upcoming speech this afternoon.  This is simply a plug for my study abroad course next summer, “The Berlin Wall in American Memory.”  Brief course description:

This course explores a range of historical topics that have emerged in the twenty years since the fall of the Berlin Wall on November 9, 1989. Questions that this course will consider include: What has been the historical relationship and interdependency between the United States and Germany? What was the significance of the allies in first crushing fascism and then rebuilding West Germany with the Marshall Plan? How did the United States assist Berlin when the city was isolated by the Russian military in the late 1940s? How and why did the Berlin Wall go up? Why and how was it taken down? What signs of post-Cold War Europe are still visible in Berlin twenty years after unification? What was the role of American, German, and Soviet political leaders in helping to end the Cold War? What was the role of the mass media and the film industry in facilitating and documenting change? To answer these questions, this course will visit historically significant sites in Berlin and selected cities in the former East Germany.

Now, all this is tentative, given the weak dollar, outrageous airfares, and the fact that I’m competing with 37 other study abroad programs next year, including four or five others in history.  Maybe using this video as advertising will give me an edge:

Politics Trumps Science (again) in the Bush White House

I’ve been following the various news reports regarding President Bush’s current HHS draft proposal regarding birth control.  I was heartened to see how many members of congress have told him to shove it, led by a certain Senator from New York.  Now, please tell me, why isn’t the Senator from Illinois saying anything about this?  Maybe he’s afraid he’ll make another slip on the issue of reproductive rights.  Still, he should give it a shot — he couldn’t do any worse than this from the Republican candidate:

Book Club: Dervishes

This month, I suggested Beth Helms’ book Dervishes because of my trip to Turkey.  The novel is set in Ankara during the 1970s and tells the story of 12-year old Canada, her disinterested mother Grace, and her alcoholic father, a U.S. ambassador, who live within the dysfunctional world of American and Canadian diplomatic families.  I was hoping the book would have more information about the political and historical situation in Turkey at that time, but it focused solely on the infighting between the various wives of diplomats, who are bored and isolated from the culture either by choice or design; and their children who generally run wild and try to adapt as best they can to frequent moves.  The setting reminded me a bit of a Henry James novel, especially Daisy Miller, where the Americans abroad keep to themselves, in a foreign country but not of it — except of course this being a modern novel, the bored housewives have affairs with the local men and fight with each other for lovers and status.  In the end the novel was not as good as I hoped — certainly the writing was superb but the ending was rushed and disappointing.  It definitely was worth reading though.

Bonus track — while onboard the Almira, I read Snow by Orhan Pamuk.  It was an interesting contrast to read about the clash between secularists and political Islamists in the eastern portion of Turkey, while traveling through the very European western region (especially Bodrum which except for the Mosques was pretty similar to other beach towns in southern Europe — a lot of British youngsters clubbing at night, roasting themselves on the beach during the day).  I’m also glad I read it in summer, since this is a quite dark and depressing look at the fate of a political exile named Ka who returns from 12 years in Germany to the small town of Kars to investigate a spate of suicides among observant Muslim girls, and to try to win back the love of his life.  It was a tough read — lots of intrigue, reversals, and betrayals.  I’ll probably have to go and look up the historical events on which it’s based before I fully understand it.

Next up:  Wild Nights, a collection of short stories Joyce Carol Oates, in which she imagines the last days of Edgar Allen Poe, Henry James, Emily Dickinson, Samuel Clemens, and Ernest Hemingway.  The concept alone is intriguing.

Word to My Chiropractor

I’m a recent convert to the benefits of chiropractic for back pain — was suffering for months before I finally decided to give it a go.  The National Center for Complementary and Alternative Medicine also lists from persuasive scientific evidence in favor of use of chiropractic for certain conditions.

Now, my chiropractor is a nice guy and does an excellent job at spinal manipulation– but he’s about to venture outside what I consider to be the appropriate boundaries of his profession by giving a lecture at our local tea shop/herbal apothecary about childhood vaccines — the title of the talk is vague, but it’s clear from the description that he’s not in favor of them, suggesting that they overwhelm the immune system. This, I think, goes too far — after all, chiropractors are not trained in immunology — and this crackpot theory has not been scientifically proven. [see the CDC website for mythbusting on this issue]

What is very clear, though, is the impact of declining vaccination rates on disease incidence in certain communities in the United States.  Take Colorado, where the rate of vaccination (75%) is below what is needed for herd immunity.  Between 1996 and 2005, 208 adults and 32 children in Colorado died of diseases that could most likely have been prevented by vaccinations. The state spends millions of dollars per year caring for children and adults with diseases such as pertussis (whooping cough), influenza, and measles that could have been prevented by vaccination.  California has also seen a sharp increase in rates of childhood diseases — e.g. a recent epidemic of measles in the San Diego area.

Now, some might say, well these childhood diseases are harmless — when we were kids, we just all got the measles at the same time and we were fine.  Well, historical facts show a different story — before the measles vaccine became available in 1963, there were typically 250,000-500,000 cases of measles per year, resulting in 500 or more deaths.

All this leads me back to the work I’m doing on HPV vaccines, which I’m revising for the Society of the Social History of Medicine conference in Glasgow this September.  Our Bodies, Our Blog recently posted a critique of “fearmongering” in a CNN report on the HPV vaccine.  I like the moderate and sensible position they take: they state that “of course we should keep watch when a new drug, vaccine or product is approved and is targeted to women” but “incomplete and inaccurate reporting and misrepresentation of the science does nothing to assist women and families in making decisions about vaccination and safety.”

Women Bishops and the Anglican Church

While we were in Turkey, the Church of England finally joined the modern age and announced it would allow women to become bishops — something the Episcopal Church of USA has been doing for some time. The Most Rev Katherine Jefferts Schori, Presiding Bishop of the Episcopal Church of the USA, had this to say about the C of E’s footdragging on the issue of women bishops, stating that it was due to “personal antipathy,” and “a misunderstanding of leadership in the early church. The early church had women in leadership roles.” She also predicted that within the next 50 years there will be a female Archbishop of Canterbury — wouldn’t that be cool, especially if she were like the Vicar of Dibley! [well, maybe not a “babe with a bob cut and a magnificent bosom,” but hopefully someone with a sense of humor who would shake things up and bring the church in line with the gender politics of the 21st century]

Our weekly church bulletin at Trinity Episcopal in Collinsville has an article from Episcopal Life weekly regarding women bishops, part of a series on the Lambeth Conference that started this past week. It’s only been a decade since the LC first included women bishops, and of course, the Archbishop of Canterbury has excluded Rt. Reverend Bishop Gene Robinson of New Hampshire from this year’s conference. Still, gender disparities are very evident — women still only make up a tiny percentage of bishops in the Anglican church, and the plenary sessions are dominated by men — all this despite the fact that 70% of Anglicans worldwide are female. The annual meeting of Anglican women at the United Nations Commission on the Status of Women suggests that women’s concerns diverge markedly from that of male bishops. Major issues include maternal and child health, violence against women, equity in education and employment — in short lots of issues consistent with feminism (although our the blurb does not use that word — would offend those guys in our congregation who like to pick on Hillary).

Being a women’s historian, I can’t help but note that all of this sounds mighty familiar — Jane Addams and other Progressive Era reformers were inspired by the social gospel movement, which applied Christian principles to the social problems of the era. [for more on this, see Gender and the Social Gospel].

Back from Vacation in Turkey

Howdy folks,

Just wanted to let you all know I’m back from vacation in Turkey with husband and friends. We did a great archaeological tour/gulet cruise with Peter Sommer Travels. The last time I took an ancient history course was in 1981, so this was unfamiliar territory for me. It was nice to be a student again. We had two great great tour leaders: Michael Metcalfe, who teaches for Fairfield University’s Study Abroad program in Sicily; and Ayse Livesley, who runs various kayak/mountain bike/walking tours with her husband Dean.

We’re still sorting out photos and getting resettled so will blog more about this later.