Class Notes for Disability in Literature for Fall 2013

I'll be putting info & handouts on assignments up at the top here. Beneath the handout links, you'll find notes for lecture and discussion in class. I'll keep the most recent material at the top.



Here is the Packet for the Service Learning Project.

Here is the assignment for the mid-term paper.

Here is the assignment for the Final Paper Project.

Here is the list of "pre-approved" books for the Final Paper Project.


Current Events/News stories of note

Story on one of the Blind runners in the NYC Marathon.

Here is the link to the page of news articles for the Online assignment. Remember, you should send me your story link and write-up by Tuesday November 26th. You should then read at least two other articles from this list of links, and come to class on Tuesday, December 3rd ready for discussion of current events issues.


For our discussion of Murderball and 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," that focus on simple adapations for wheelchair users for a variety of daily living tasks. I particularly like the section on "The Art of Wheeling," hosted by Gary Karp, talking about "Zen Wheeling." 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 (2013) (all material below directly quoted from their report, available as a PDF here:

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 2013 who have SCI has been estimated to be approximately 273,000 persons, with a range of 238,000 to 332,000 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 2010, the average age at injury is 42.6 years.

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

Since 2010, motor vehicle crashes account for 36.5% 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 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 in the summer of 2011 with early onset Alzheimer's. The Pat Summit Foundation works to raise awareness of Alzheimer's. The University of Tennessee will be dedicating Pat Summit Plaza to celebrate the coach. You can read an earlier story about her situation here. There's another 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. Summitt stepped down from her position in . On April 16th, 2012, she stepped down from her position. In an October 2012 article, she claims that she felt forced to step down from the job.

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 The Diving Bell and the Butterfly:

Information about Bauby's real life vs. the film adaptation :

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."

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

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.

Cultural References:

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: video is just a static image of the Sgt. Pepper's cover).

Background on Locked-in Syndrome:

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.

"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:

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.


Following up on the Poetry Packet

We read a couple of poems by Cheryl Marie Wade ("Cripple Lullaby" and "I am Not one of the..."). I was sad to learn that she passed away this past August (2013). Here is a link to a video she made -- "Disability Culture Rap" -- that includes her reading some of her work. There is also a video about her and her work here:


Regarding Victimization & Disability (relating to Shoot! but also to other texts for the course)

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):

Here's a link to some of the DOJ study:

Here's a recent (September 2013) article about a new law in Iowa that allows blind people to carry guns in public.


For our discussion of mental illness/depression

I've adapted some slides from another presentation to give a brief overview of Depression for our class here:Disability in Lit depressionppt.ppt

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 a future class when we will read "The Yellow Wallpaper," we'll talk more about the history of treatments for 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.



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

You might want to take a look at Lynn Manning's website, which details his 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; HBO recently did a documentary on them, called Dark Light: The Art of Blind Photographers.


For Discussion of Blindness and Sight Impairment

Blindness: Definitions:

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

Specific terms:

Organizations related to Blindness

Lowell Association for the Blind (LAB)

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.

Did you know that October is "Meet the Blind Month"?

You may also be interested in an exhibit, "Dialog in the Dark," that has been travelling the world.

Stories of Interest:

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.

Starbucks has a 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), and also 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.


For Discussion of "Disability" as a general term

What does the sign for "disability" tell us? How might we want to update that? Here's some recent news:

One of the co-founders of the Accessible Icon Project is Sara Hendren, and she's coming to campus!

More of Hendren's work is here:

Here is a link to the Lecture Capture of Hendren's Talk on campus:


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

Here's a link to an article about a local school using robots to help young students with ASD develop social schools.

Here's a link to a quiz from the Centers for Disease Control (CDC) about the signs of ASD (Autism Spectrum Disorders).

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

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:

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.
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:

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 our discussion of Mark Haddon's The Curious Incident of the Dog in the Night-time:

Need some background info on autism? Here's a link to a useful interactive quiz that tests your knowledge and provides some background. The CDC also has a quiz here. The CDC also has a short video overview explaining ASD.

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:

This summer, there was a PBS POV special that got rave reviews (I haven't had a chance to watch it). It's called Neurotypical. The full film is no longer free to stream, but the website has lots of useful and interesting information.




For our opening discusisons about Defining Disability

The BBC ran an impressive promo video called "Meet the Superhumans" for coverage of the Paralympics; check it out here:

Here's the main site for the London 2012 Paralympics: It now includes information about how the London Paralympics affected perceptions of disability, and some background on some of the events and records sets.

Wired magazine did some coverage about the serious lack of coverage of the Paralympics in the U.S. Here's a great summary from that article: "The competitions in London includes 4,200 athletes from 166 countries, with five major disability classifications for athletes. In the mix of American athletes, 20 are disabled war veterans, and six were injured in combat. In case you wonder if anyone cares about these Games, let's point out that 2.4 million tickets were sold and most events are sold out."

Here's a link to a story about Ethan Saylor, a young man with Down Syndrome who died after security guards in a Maryland movie theater held him down when he refused to leave. The events happened in January of 2013, and the officers involved were cleared of wrongdoing and never indicted. But recently many people are beginning to question the findings of the court and ask for an investigation by the US Department of Justice.

Here is a link to the first reading assignment, Nancy Mairs' essay, "On Being a Cripple."

You might also be interested in this essay on Ablist language.