The next NG Seminar is Thursday

NARRATIVE GENETICS SEMINAR
APRIL 2, 6-8PM
Room 801 International Affairs Building
420 West 118 St, 8th Floor, Columbia
This event is free and open to the public

Our guest will be Alice Wexler from UCLA, who will talk about genetic disease narratives, using her work on Huntington’s Disease as a case study.

Suggested readings include Alice’s first book, Mapping Fate and an article by Alice, “Chorea and Community in a Nineteenth-Century Town,” that is an early version of part of her second book, The Woman Who Walked into the Sea. This article and other recommended readings, including Nancy Wexler’s article, “Genetic ‘Russian Roulette’: The Experience of being ‘At Risk’ for Huntington’s Disease,” are accessible on the Narrative Genetics Google site (open to the public): http://sites.google.com/site/narrativegenetics/Home
Fore more information: http://iserp.columbia.edu/workshops/genetics

Sprout Film Fest at MET

I am passing along this email from Ellen Greenebaum:

Dear Samantha,
I think that you might be interested in knowing about and alerting your faculty, staff, students, and patients to a wonderful film festival by and about people with developmental disabilities and autism: Sprout Film Festival.

The Film Festival's website is http://www.gosprout.org/film/sff2009/index.html

It takes place at the Metropolitan Museum of Art and begins Friday May 1, 2 - 9PM, goes on through Saturday 11:30AM - 9 PM, and finishes Sunday May 3, 12 - 4PM. -During intermissions I wander the museum exhibits and enjoy the snacks provided by Sprout.

I have attended the festival nearly every year for the last 6 years and in my opinion, the films are superb; almost all are new each year, and they come from all over the world.

Often, film makers, actors, subjects of the films, and their families attend and hold a Q&A.

Some ARC agencies bring groups of developmentally disabled individuals. Many educators and clinicians attend too. But most folks come just out of general interest and curiosity.

Sprout is an organization that sponsors recreational activities locally (893 Amsterdam@104th St. NYC) and also offers trips to all sorts of exciting (or relaxing) places.

My brother Michael is 52 year old and has gone on many trips with Sprout over the years, most recently a cruise to Bermuda.
Full disclosure: My brother is my only connection to Sprout, aside from being in awe of the director Anthony DiSalvo who founded Sprout from scratch 30 years ago.

Sprout's website is http://gosprout.org/

The Film Festival's website is http://www.gosprout.org/film/sff2009/index.html

There will be a discount for students, seniors, & disabled (and faculty and staff of course- though it doesn't say so).

Thanks, Ellen Greenebaum BA (Barnard) MD (P&S) MPH (Mailman School of Public Health)

Books We Recommend

Lori B. Andrews Future Perfect: Confronting Decisions about Genetics. New York, Columbia, 2001.

Lennard J. Davis (ed). The Disability Studies Reader (Second Edition). New York: Taylor and Francis, 2006.

Jurgen Habermas. The Future of Human Nature. Molton, MA, Polity Press, 2003.

Donna J. Haraway. Simians, Cyborgs and Women: The Reinvention of Nature. New York: Routledge, 1991.

Robin Marantz Henig, Pandora's Baby. New York: Houghton Mifflin, 2004.

Bill McKibben. Enough: Staying Human in an Engineered Age. New York: Owl Books, 2003.

Eric Parens and Adrienne Asch (eds.) Prenatal Testing and Disability Rights. Washington DC: Georgetown University Press, 2007.

Penny Wolfson, Moonrise, St. Martin's Press, 2003.

Genetics, Disability, and Deafness, John Vickrey Van Cleve, Editor, Gallaudet University Press 2004

Welcome

“We are a narrative species,” wrote Roger Rosenblatt in “I am Writing Blindly” (2000). “So enduring is this storytelling need that it shapes nearly every human endeavor.”

I came across Rosenblatt’s essay today as I sat down to write the initial posting for this new Narrative Genetics blog. What are the stories we tell about our genes? And how have these stories impacted the way we live our lives as individuals, families, and societies? Our historical narratives of race and genetics sometimes are glaring and foreshadow genocidal violence at home or abroad. Or sometimes they appear beneficent as shorthand for the disparities we seek to end. And today the metaphor of mapping with its glimmering Human Genome Project as standard bearer has given rise to industries of story-making to create entertainment, to create identity, to create hope.

This blog extends and expands the conversations we have been having at the Narrative Genetics seminar at ISERP, Columbia University, an outgrowth of some collaborative work by my colleagues in Narrative Medicine at Columbia, and in Human Genetics at Sarah Lawrence College. A few months ago Felice Aull invited me to blog about Narrative Genetics on the NYU Literature, Arts and Medicine site. Blogging makes us think in terms of stories, and I found myself remembering my own genetic family stories, as well as searching out others. This blog will give us all a chance to think in an interconnected way about genetics, stories and society, and to share this thinking with each other. For those of you who find this blog and are not able to attend our seminars, you can find some seminar resources and readings on the corresponding Google Site. We will also share with you some of the discussions that begin in the seminar. This is a field that is very much a multidisciplinary exploration. We hope others will join us in the journey.