Disability, Diversity, and the Elimination of Human Kinds

This excerpt was passed along to me by Felice Aull, who maintains NYU's Literature, Arts & Medicine Blog. The full article can be found on our document site.

Woodcock, S. (2009, April). Disability, Diversity, and the Elimination of Human Kinds.
Social Theory and Practice, 35(2), 251-278.

Excerpt:

"In a discussion of medical technology and its impact on persons with disabilities, Connie Panzarino notes that she is frequently asked to provide a blood sample to help researchers identify the gene for a rare condition she was born with known as Werdnig-Hoffmann Disease. Recognizing that this information will be used to prevent persons who carry the gene from being born, Panzarino is mystified and angered by these requests. She offers an illuminating explanation for her refusal to cooperate with the research: "I cannot in all conscience contribute to the elimination of people like myself." Panzarino's reasons for opposing the elimination of disability were complex and varied, but one can extract from her statement a recognizable objection from many in the disabled community: the claim that there is something wrong with research and medical technology designed to prevent certain kinds of humans from existing. Members of the Deaf community have expressed the objection when arguing against the widespread use of cochlear implants, and persons with spina-bifida, achondroplasia, and other genetic conditions have similarly objected to me goal of preventing persons with disabilities from being born. Panzarino's claim is especially striking, however, because the condition she inherited is associated with very serious disabilities and what many consider to be a diminished quality of life. Werdnig- Hoffmann Disease is a type of Spinal Muscular Atrophy characterized by weakness of voluntary muscles, swallowing difficulties and impaired breathing. It has a mortality rate greater than sixty percent by age two, and mis mortality rate rises to nearly eighty percent by age five.4 It is a disease that, along with Huntington's Disease, Tay-Sachs, and LeschNyhan Syndrome, most people believe we have a straightforward moral obligation to eradicate. Panzarino, however, lived to the age of fifty-four. She was an accomplished therapist, artist, and author who lived a rich and productive life. Why, men, is it morally required, or even permissible, to try to prevent persons like her from existing?

In this paper I discuss a certain way of advancing the claim that it is morally wrong to seek the elimination of certain human kinds by preventing representative persons of these kinds from existing. I then argue that a qualified interpretation of this claim ought to be taken seriously. Some interpretations of the preceding claim are, of course, false. For example, the claim mat it is never permissible to eliminate any human kind is a nonstarter. The successful eradication of Huntington's Disease would presumably be a good thing, though research aimed at doing so would consist in seeking to prevent a particular human kind from existing. Hence, it is not necessarily pernicious to seek the elimination of at least some human kinds, though we begin to tread on delicate ethical territory when we explicitly adopt this as our objective when developing new medical technology."

____________
Rachael A. Zubal-Ruggieri
Information Coordinator, Center on Human Policy, Law, and Disability Studies
Coordinator of Computer & Technical Applications, Early Childhood Direction Center
Editorial Staff, Intellectual and Developmental Disabilities (IDD)
Syracuse University

Brush up on your Narrative Genetics from the Couch

Pop culture's imagination of genetic mutations have brought us the X-Men, Aeon Flux, Star Trek, and many more.

Here's some books and movies with genetic themes that got us talking, with various degrees of adoration and criticism, during Patricia Wald's visit.

What are you watching? What should we be reading? Feel free to comment on this blog.

Movies:
X Men (and X Men II)
Aeon Flux
Boys From Brazil
Island
Teenage Mutant Ninja Turtles
Star Trek
Invasion of the Body Snatchers
Journey of a Man (Documentary)
AI (Artificial Intelligence)
Frankenstein
Multiplicity
Minority Report
28 Days Later, Weeks, Months etc.
Godsend
Twilight of the Golds
Sound and Fury (Documentary)
Repro Films: Species, Aliens, Hand Maid's Tale

Books:
Never Let Me Go
Lilith's Brood
Left Hand of Darkness
The Lovers
The Century After Beatrice

Let's not panic over the pandemic-lets just focus on global poverty

". . .we should not lose focus on the fact that nothing will go further to contain the spread of disease than a healthy population with access to health care."
- Priscilla Wald

Priscilla Wald visited both the Narrative Medicine Rounds and the Narrative Genetics seminar last week. As a poet, I was inspired by her deft understanding of the work metaphors do in influencing global policy, and have found myself referencing her work in conversations with friends outside the literature and medicine community.
Read the full article here:
Let's not panic over the pandemic-lets just focus on global poverty

Risk of Autism Tied to Genes that Influence Brain Cell Connections

I am passing along this email from Maggie Hoffman.

Marsha made some interesting points, which many of us have been speaking about for years:

Now we have three studies reporting that both common and rare genes have been identified as putting people at risk for autism spectrum disorders. The genes contribute to both forming and maintaining brain cell connections. Additionally, the reports state that genetic and environmental factors come into play in creating this risk.

This was not a day that the earth stood still. Haven't 'we' always thought ASDs had both genetic and environmental causes? If there were prenatal tests for autism spectrum disorder risk, would expectant mothers be offered probability statistics, or a referral for termination?

Marsha commented that soon there will be no unborn child perfect enough to be born.

In preschool faculty meetings and in school bus stop gatherings folks casually comment, "Well his dad is kind of socially challenged" or "His mom isn't good with facial recognition", or even, charitably, "That little guy has quite the memory, just like his older brother". Have we really learned anything more from the research, and more importantly, what can we do with it?

Click here: Risk of Autism Tied to Genes that Influence Brain Cell Connections: National Institute of Neurological Disorders and Stroke

Next & Last Seminar of the Season, May 7th

Narrative Genetics Seminar on May 7. Usual time and place: Rm 801 International Affairs Building, 118^th St. & Amsterdam Ave.. 5:30-7:30pm.

Clones, Chimeras, and Other Creatures of the
Biotechnological Revolution: Toward a Genomic Creation Myth

Priscilla Wald from Duke University will be our guest. You can read her article on our Google Site http://sites.google.com/site/narrativegenetics/Home or on the ISERP Narrative Genetics Seminar site www.iserp.columbia.edu/workshops/genetics.

May 7 will be our last seminar for this season. We will have a new series of seminars during the academic year 2009-2010. Please help us think about topics and guests for the seminars next year. Email them to me at marsha at marshahurst dot com or post them to the Google site.

Audio of Interest on Story Corps

I've been surfing around Story Corps and found some audio clips by and about people living with genetic illness. Some of us have shared these stories with students and colleagues in Narrative Medicine classes and workshops. Listen carefully:


12-year-old Joshua Littman, who has Asperger's syndrome, interviews his mother, Sarah and asks her such things as “Have you ever lied to me?” and "Did I live up to your expectations?"
http://www.storycorps.net/listen/stories/sarah-and-joshua-littman


Thom and Karen Horsey remember their daughter, Liddy, who had Cornelia de Lange Syndrome. Liddy died from an illness unrelated to CdLS.
“Liddy did things on her own schedule...”
http://www.storycorps.net/listen/stories/karen-and-thom-horsey


“How did you feel when I was born?”
15-year-old Mary Warm, who has Down syndrome, to her father, David.
http://www.storycorps.net/listen/stories/mary-and-david-warm


Barbara Cooper (L) tells her mother, Jody Houston (R), about living with a form of the rare genetic condition, Progeria.
“It's a premature aging disorder...” "I did everything I ever wanted to do."

Cybergenetics? The internet and genetic community

How does the internet facilitate the telling and receiving of genetic stories? What is the role of cyberspace in shaping the ‘geneticisation’ of our lives? What work does the internet do in creating communities around genetic conditions?

These were some of the questions with which the ISERP Narrative Genetics seminar grappled during a recent presentation by Alice Wexler on the narratives of Huntington’s Disease. Wexler’s historical research on what was then called “St. Vitus’ dance” or “magrums” focused on Huntington’s small town origins in East Hampton, NY where many prominent families were affected by the disease. She also discussed a particular, isolated community in Venezuela that is a modern day cluster for Huntington’s Disease-affected families.

Which is when the conversation turned to the internet, a medium which has in many ways redefined the meaning of the word community. For individuals with disabilities, or sufferers of illness, the internet provides potential connection with distant friends and family, with others experiencing similar conditions, with medical research and medical professionals that may not have been otherwise accessible. In many ways, the internet is the antidote for the isolation that so often accompanies disability or illness. From simple email, to social networking portals, to gaming sites like second life, cybernetic communities enable those experiencing illness or disability to connect, give voice, share research, advocate, and organize. It enables someone who might not have physical mobility to essentially travel the globe, or even embody a cyber-self, an ‘avatar’, with an entirely different set of embodied identities and abilities. Admittedly, these possibilities are not without potential complications. As Tod Chambers has written in his essay "Virtual Disability: On the Internet, Nobody Knows You're Not a Sick Puppy" (which appears in Lester Friedman's collection Cultural Sutures: Medicine and Media), cyberspace challenges the authenticity of the suffering voice; this is a place where one can wear a mask of disability or illness, draw other sufferers close, and create communities which are vexed by troubling issues of 'the authentic' and 'the real.'

These issues notwithstanding, for genetic conditions, the internet appears to function in particularly powerful ways. (Consider the existence of this very blog!) For instance, those experiencing a particularly rare genetic condition, who might have never met another patient with the same illness due to issues of distance, now have the potential to not only connect to others but organize communities, discussion groups, and advocacy organizations. For those with autism-like, immunosuppressed, or heavily infectious conditions, the internet provides connection without physical togetherness. Consider the crucial role the internet has played for young people with cystic fibrosis. As Kayla Rachlin Small has both presented to the seminar and written in the New York Times , individuals with cystic fibrosis are often discouraged – even forbidden – from being physically together due to the infectious risk CF sufferers pose to one other – where a rare bacteria that is harmless to the general population might in fact become life threatening if passed on to another CF patient. Here, the internet is a powerful medium for the CF community – allowing individuals access to one another in ways otherwise impossible. The internet not only unites people otherwise separated by space, but by time. Whether around the world in a different time zone, or suffering a rare sleep disorder such as Klein-Levin syndrome, where an individual may sleep up to 20 hours a day for weeks or even months, the internet permits connections that are, in a sense, beyond the constraints of simultaneity. (The parallel, of course, between genetic and digital "codes" cannot be lost upon us, perhaps a topic for another blog).

Clearly, there are limits to cybernetic communities. There is a difference between a cybernetic hug and a real one, a emoticon and a tangible, embodied emotion. However, it is impossible not to recognize the critical importance of the internet in narrative genetics. The stories we tell – and are able to hear – about genetic conditions would be quite different if not for the medium of cyberspace. The postmodern communities that we form are different, yes, than the Huntington’s cluster of East Hampton, NY, yet they are a critical part of how we understand, experience and organize around genetic conditions today.

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.