Disability in Literature for Spring 2012

I'll include notes for class here -- lectures, links, etc. Newest material appears at the top.

For our discussion of Fairy Tales

While it's not exactly a fairy tale, the Disney film Finding Nemo has been praised by at least one Disability Studies scholar, who writes " In "Finding Nemo", I discovered sunken treasure—a multifaceted representation of disability. The protagonist, Nemo, displays a small, or "deformed," fin that is a congenital result of a fatal attack on his mother and sibling eggs—a corporeal characteristic that the story surrounds, yet does not drown in. In an aquatic natural world where species maintain characteristic, standardized appearances, Nemo is marked as visually and socially different, yet hardly inadequate. He explains that he has a "lucky" fin when questioned by his classmates, who then offer their own explanations of distinctive physical quirks: a squid confesses to having a lazy tentacle, a seahorse boasts of his "H2O intolerance." Nemo's peers accept him, even admire his self-confident attitude and plucky spirit, because in this diverse "school" of fish, everybody's different."

Read the full article here: http://dsq-sds.org/article/view/861/1036

Captain Hook (the Disney version)

Rumplestiltskin (image from here -- check out their others, too)

Rumplestilskin from 1823 illustration by Cruikshank. From here.

Disney's Snow White and the Seven Dwarfs.


Scholars interested in disability studies, media studies, and children's literature have done considerable work on the portrayals of disabilities in fairy tales, folk tales, and children's literature more generally. Most refer to an article Biklen, D. and R. Bogdan, "Media portrayals of disabled people: a study in stereotypes." Interracial Books for Children Bulletin. 8(6&7): 1977 that presented 10 (or 11, depending on the version) typical disability models that are deployed in the media. here are the possible roles:
1. pitiable and pathetic (Dickens' Tiny Tim)
2. an object of violence
3. sinister and evil (Captain Hook, etc.)
4. the person with disability as atmosphere (an undeveloped background character)
5. a super crip with super qualities,
6. laughable
7. his/her own worst-and-only-enemy (self-pitying gets in the way of presumed acceptance)
8. a burden
9. non-sexual
10. incapable of fully participating in everyday life.

11. Isolated from Disabled and non-disabled peers

12. Child-like or infantlike (acting on primary drives, not purposeful behavior)

See also "Disability Bias in Children's Literature" by Ellen Rubin and Emily Strauss Watson in The Lion and the Unicorn, Volume 11, Number 1, June 1987, pp. 60-67 (Article)



For our discussion of Spinal Cord Injury

Christopher & Dana Reeve Foundationhas a website with lots of information; Christopher Reeve, the actor who played Superman, is perhaps the most well-known case of an SCI. They are heavily promoting the NeuroRecovery Network, which helps get various therapies to individuals with SCIs.

The Reeve Foundation site has some short videos called "Reeve Health Minutes;" one of their recent ones features Gary Karp, talking about "Zen Wheeling." He's the editor of the collection that our readings about SCI came from. His other videos, including ones about getting into a car (and folding up his own wheelchair), and "curbjumping" are short, focused demonstrations on how to use a wheelchair.

Locally, the Boston Medical Center is the home of the Northeastern Regional Center for Spinal Cord Injury. They have helped (along with Boston University) a site called the SCI Guide, an online source for information that has been reviewed by members of the community. It covers a huge range of material.

The University of Alabama at Birmingham operates the National Spinal Cord Injury Statistical Center. Here are a few highlights taken directly from their most recent report (2011) (all material below directly quoted from their report, available as a PDF:

It is estimated that the annual incidence of spinal cord injury (SCI), not including those who die at the scene of the accident, is approximately 40 cases per million population in the U. S. or approximately 12,000 new cases each year.

The number of people in the United States who are alive in 2010 who have SCI has been estimated to be approximately 265,000 persons, with a range of 232,000 to 316,000 persons.

SCI primarily affects young adults. From 1973 to 1979, the average age at injury was 28.7 years, and most injuries occurred between the ages of 16 and 30. However, as the median age of the general population of the United States has increased by approximately 9 years since the mid-1970, the average age at injury has also steadily increased over time. Since 2005, the average age at injury is 40.7 years.

Overall, 80.7% of spinal cord injuries reported to the national database have occurred among males.

Since 2005, motor vehicle crashes account for 40.4% of reported SCI cases. The next most common cause of SCI is falls, followed by acts of violence (primarily gunshot wounds).

Life expectancies for persons with SCI continue to increase, but are still somewhat below life expectancies for those with no SCI. Mortality rates are significantly higher during the first year after injury than during subsequent years, particularly for severely injured persons.



For our discussion of mental illness/depression

As we think about the history of treatments for depression and mental illness, we'll talk a bit about some classic images painted by Théodore Géricault (1791 – 1824). I have a brief description and set of images here.

A group of students in a behavioral neuroscience class created an online presentation about Depression.

PBS created a timeline exploring some of the earliest treatments for mental illness.

The National Institute of Mental Health has a comprehensive guide to depression, including symptoms, diagnosis, treatments, and other useful information.

The New Yorker did a profile of David Foster Wallace, who struggled for 20 years with depression before taking his life in 2008. In another story about Wallace in the Guardian, his wife, Karen Green, mentions her edited version of the story. There is an archive of Wallace's teaching materials, including syllabi for his courses, at the Henry Ransom Center at UT Austin.

A 2004 NPR story discussed the treatment of depression, in a discussion with Andrew Solomon, the author of Noonday Demon: An Atlas of Depression.

Mental illness and depression specifically are increasingly common issues on college campuses, as described in this NPR story from 2011.

Here on our own campus, resources are available if you need help. Stop by the Counseling Center; it's free and confidential.



For our dicussion of Still Alice

There's a recent(Feb 2012) interesting New York Times Wellblog post about how our culture copes with Alzheimer's here.

Retired Supreme Court Justice Sandra Day O'Connor wrote a New York Times Opinion piece that you can read here.

O'Connor speaks from experience; her husband suffered from Alzheimer's, and during his later stages, while he was in a nursing home, he fell in love with another patient. There are some details of the story here.

Pat Summit, the coach of the University of Tennessee's women's basketball team, was diagnosed this summer with early onset alzheimer's. You can read an earlier story about her situation here. There's another (more recent) story (December 2011) at the Washington Post. There's a more recent (April 2012) follow-up to this story, including at least one commentator who thinks that Summit should step down from her position.

There are other related forms of dementia that are the focus of recent articles. You may be interested in this New York Times story about Frontotemporal dementia.

For our discussion of Lucy Grealy's Autobiography of a Face

Here's the interview Grealy did with Charlie Rose: http://www.charlierose.com/view/interview/7201

Here's a piece written by Suellen Grealy, Lucy's older sister. It is a response to a memoir written by Ann Patchett after Grealy's
death. I'll be bringing in a few quotes from this piece for our discussion. http://www.guardian.co.uk/books/2004/aug/07/biography.features

Here's an interesting article by Patchett talking about the furor caused when her book (Truth & Beauty) about her relationship with Lucy
Grealy was a required book for first year college students: http://www.theatlantic.com/doc/200708/ann-patchett-love-women

Grealy also wrote a piece for the journal Nerve in 1997, which was reprinted after her death. Link here to Autobiograhpy of a Body.

Grealy's papers are held at the University of Iowa (where she attended the Iowa Writers' Workshop). The actual items are not digitized, but there's a listing and a few photos which may be of interest.

For our discussion of Lynn Manning's play, "Shoot!"

You might want to take a look at Lynn Manning's website, which details his various work.

Here's a video interview with Manning where he talks about how he became blind and his life in a sighted world.

There's more info about Manning's well-known play and performance, Weights, here.

You may also be interested in the theater group, Theater Breaking Through Barriers (formerly the Theater by the Blind) to learn more about this more than 30-year-old acting & theater group that performs Off-Broadway with an integrated cast of actors with a range of disabilities.

There are also numerous blind photographers, many of whom blog at: http://blog.blindphotographers.org/

Organizations related to Blindness

American Foundation for the Blind

National Federation of the Blind:

From the NFB website: " The real problem of blindness is not the loss of eyesight. The real problem is the misunderstanding and lack of information that exist. If a blind person has proper training and opportunity, blindness can be reduced to a physical nuisance."

NFB is involved in advocacy for the blind; for example, they were involved in public objections to the film, Blindness (2008), for its portrayal of the blind as incompetent and immoral.

You may also be interested in an exhibit, "Dialogue in the Dark," currently running in New York City (and maybe eventually coming to Boston). There's a video featuring a CNN reporter experiencing the exhibit (audio only, no image!).

Blindness: Definitions:

"Blindness is the condition of lacking visual perception due to physiological or neurological factors."

Specific terms:

Additional stories:

You may be interested in the story of Wanda Diaz, a blind astrophysicist who is working on non-visual ways to represent what is going on in outer space. You can listen to a fascinating story (and some cool music) in the story about her here.

In Fall 2011, Starbucks created its first gift card featuring Braille (this is not meant as an ad! A friend of mine saw them in the Starbucks on campus and sent me a photo!)

You MUST check out Seeing Beyond Sight, an online exhibit and companion book (I'll have it in class) about sight-impaired photographers. The group is currently developing a documentary film; you can see some clips here.

On the issue of whether a blind person can own a gun, you might be interested to read about Carey McWilliams, author of Guide dogs and guns: America's First blind marksman fires back. See his website here. You may also enjoy the Daily Show feature from a few years ago, "A Shot in the Dark," where they interview McWilliams.

You may also be interested in the story of David Paterson, who was governor of New York (2008 - 2010), who now (as of fall 2011) hosts a drive-time radio show. In September of 2010, Paterson appeared on Saturday Night Live alongside Fred Armisen, the man who played him in sketches. In previous sketches, Armisen portrayed Paterson as bumbling and incompetent, drawing criticism from advocates for the blind and disability rights groups. The video of Paterson's appearance is here.

Victimization & Disability

According to the most recent crime statistics from the Department of Justice, the disabled are more likely to be the victims of violent crimes. A few notable stats:
-->Age-adjusted rate of nonfatal violent crime against persons with disabilities was 1.5 times higher than the rate for persons without disabilities.
-->Females with a disability had a higher victimization rate than males with a disability; males had a higher rate than females among those without a disability.

Here's a link to an NPR story about this (2009): http://www.npr.org/blogs/health/2009/10/disabled_people_frequent_victi.html

Here's a link to some of the DOJ study: http://bjs.gov/index.cfm?ty=pbdetail&iid=2238

For our discussion of The Diving Bell and the Butterfly:

There is a wonderful interview with Bauby's editor, Claude Mandibil, who took the "dictation" of the book.

There is one excerpt of a video online that shows the real Jean-Dominique Bauby unfortunately, it's in French and German. It is part of a French television program, Jean-Jacques Beineix's "Assigne a Residence."

If you've seen the film of the book, note that there are MANY differences between the film's version of events and what really happened, particularly surrounding the issue of the mother of his children and his lover at the time of his death. You might want to read this interview with Florence Ben Sadoun to learn a bit more.

Bauby makes LOTS of cultural references throughout his memoir. In the chapter "'A Day in the Life'" he makes a lot of references to the Beatles song "A Day in the Life." We'll listen to it in class. Here's a link to a YouTube video that features the song: http://www.youtube.com/watch?v=P-Q9D4dcYng(the video is just a static image of the Sgt. Pepper's cover).

The Diving Bell and the Butterfly was also made into a film in 2007. You can watch a trailer here.

See this article in Esquire about a young man with locked-in syndrome. His name is Erik Ramsey article is from October 2008. There is another brief article with images here. You can read more about the research that is is helping Ramsey to communicate, and see a brief video about it here.

A few notes about locked-in syndrome:

"No American organization keeps statistics about how many people are locked-in, but there are probably no more than several thousand patients each year in the United States who survive the kind of brain-stem stroke that crippled Erik. Almost 90 percent of them die within four months, though a few manage to hang on for years, even decades." from: http://www.esquire.com/features/unspeakable-odyssey-motionless-boy-1008-2#ixzz1aUMLrmRh

Other literary depictions of Locked-in Syndrome you might find interesting:

Julia Tavalaro: Look Up for Yes (1998): after suffering two strokes and several months in a coma, Tavalaro awoke with locked-in syndrome, completely conscious, but unable to communicate. For six years, she was treated as a "vegetable" until a therapist discovered that she was able to communicate through eye movements.

The 1938 novel, Johnny Got His Gun by Dalton Trumbo depicts a WWI soldier who is severely injured during battle who is left "locked-in," able to feel and think, but unable to communicate or move. The band Metallica wrote a song, "One" in 1987 and released on their album, ...And Justice for All in 1989.

For discussion of Temple Grandin's work (and the film about her):

Here's the link to Temple Grandin's web page, which focuses on her work in the cattle industry . You may be interested in her other page, which is focused specifically on autism.

Here's a link to a useful (short) documentary by one young man on the spectrum called Autism Reality.

A recent 60-Minutes story -- Apps for Autism -- focuses on how the ipad has allowed people on the autism spectrum to develop new ways to communicate.

Take a look at the Making of Temple Grandin short video provided by HBO.

Here's HBO's main site about the film.

You may also enjoy the BBC's show, The Woman Who Thinks Like a Cow, about Grandin.

After the Clare Danes film was made, Gradin became very popular in the media. I’ve collected some quotes from and about her and the movie from different sources here; I hope that they will help inform our conversation. The links will take you to longer versions of the stories; I have also posted this handout online so that it is easier to follow the links.

From Grandin interview on MSNBC http://www.msnbc.msn.com/id/35150832/ns/health-mental_health/

Temple Grandin: I am much less autistic now, compared to when I was young. I remember some behaviors like picking carpet fuzz and watching spinning plates for hours. I didn’t want to be touched. I couldn’t shut out background noise. I didn’t talk until I was about 4 years old. I screamed. I hummed. But as I grew up, I improved.

What help do you think most people with autism need?
Little kids, especially ages 2 through 5, need one-on-one interaction with an effective teacher. I don’t care who that teacher is. It could be the mother, an aunt, a grandma, someone from a church, a synagogue, maybe a student. You just need someone who clicks with that kid. The worst thing you can do is nothing. You can’t let these kids sit and watch TV all day.
The other thing is, teach these kids manners. I was raised in the ‘50s and ‘60s, and manners were drilled into me. I see kids [on the spectrum] today that have no manners. That’s going to hurt them. You can’t punish a child who is acting out because of sensory overload. But it’s unacceptable to see kids throwing things and slapping people. I see kids with Asperger’s [a mild form of autism] who can’t hold a job because they are constantly late. Teach kids to use an alarm clock. This is common sense and sometimes we forget about common sense. Autism is used too much as an excuse for bad behavior.
“Autism pride” or neurodiversity is a growing movement. Do you think there needs to be a “cure” for autism?
I believe there’s a point where mild autistic traits are just normal human variation. Mild autism can give you a genius like Einstein. If you have severe autism, you could remain nonverbal. You don’t want people to be on the severe end of the spectrum. But if you got rid of all the autism genetics, you wouldn’t have science or art. All you would have is a bunch of social ‘yak yaks.’
What was it like to see someone portray you?
It was like going in a weird time machine. The movie was set in the ‘60s and ‘70s, and I was very severe back then, very anxious. This was before I went on antidepressants for the panic. Puberty and high school were horrible for me. I spent time with Claire [Danes], and her portrayal of me back then is very authentic. She was me.

Another interesting Grandin interview and story can be found on NPR here: http://www.npr.org/blogs/health/2010/01/temple_grandins_improbable_jou.html

In one comment in response to the NPR story, jaynee salinger (jsalinger) wrote:

Temple Grandin's story is inspirational but she represents a very small percentage of individuals with autism who are very, very high functioning.
What about those who are on the other end of the spectrum. Their story rarely gets told. The best account I ever read, and in my opinion an overlooked gem, is The Accidental Teacher: Life Lessons from my Silent Son. http://www.press.umich.edu:80/titleDetailDesc.do?id=1403971
Temple Grandin's life is like a fairytale with a happily ever after ending. But reality? Think again.

A few notes from the Wall Street Journal article here: http://blogs.wsj.com/speakeasy/2010/08/09/temple-grandin-a-chat-with-the-woman-who-inspired-the-film/

Grandin spent a lot of time with Danes, giving the actress 9 hours worth of old VHS tapes of her during the 80s and 90s. Danes had the tapes digitized and put on her iPod Touch for study. “She really nailed that part of me,” says Grandin. “She became me.”
Grandin also worked closely with the writers, directors and the 30 cows that had been purchased specifically for use in the movie. She made sure everything was portrayed perfectly. “You remember that movie City Slickers with Holstein cattle on the ranch?” Grandin asked me. “That movie was stupid and I told them we had to have cattle accuracy. I had a lot of input with that and it turned out really right.”


For discussion of The Curious Incident of the Dog in the Nighttime:

Here's a link to a wonderful interview with Mark Haddon.

Some of what he says also appears on his blog entry, where he talks about how he's NOT an expert on autism.

Here's a link to one article by someone on the spectrum who objects to claims that Haddon understood or portrayed autism in the book.

If you like this book or are interested in this topic, here are some books that may interest you for the final project: