Tuesday, August 27, 2013

Report from the Society for Disability Studies: Bringing Ethics, Bioethics, and Disability Studies Together

By Jennifer C. Sarrett, MEd, MA

Jennifer Sarrett is a 2013 recipient of the Emory Center for Ethics Neuroethics Travel Award. She is also a doctoral candidate at Emory University’s Graduate Institute of Liberal Arts working on her dissertation which compares parental and professional experiences of autism in Atlanta, GA and Kerala, India as well as the ethical issues that arise when engaging in international, autism-related work.

From June 26 - 29, 2013, the Society for Disability Studies (SDS) held their annual conference in Orlando, Florida. SDS is the primary scholarly association for the field of Disability Studies, which is an academic field of study exploring the meanings and implications of normativity, disability, and community. As with other identity-based fields of studies, including Women’s Studies, Queer Studies, and African-American Studies, the Society for Disability Studies thinks about difference and works to expose and eradicate stigma and inequality related to people who identify as disabled. This particular field of identity-based work is closely related to Bio- and Neuroethics, as differences in minds and bodies present medical and scientific concerns to physicians, researchers, and scholars.

At SDS this year, I presented a paper titled “The Ethics of Studying Autism Across Cultures,” which is based on my research fieldwork. My dissertation looks at how culture influences parental and professional experiences of autism in Atlanta, GA and Kerala, India with the aim of developing guidelines for future scholars, interventionists, or advocates embarking on international work on autism and related disabilities. Because of many of the ethical issues I came across in my studies and research, my work extends to thinking about autism within current models of human rights and critically examining contemporary and historical ways of talking about and treating people on the autism spectrum. 

My work on autism in and out of my dissertation relates to several prominent concerns presented in current bioethical and neuroethical scholarship. In regards to research practices, issues related to obtaining informed consent, communicating research goals to participants and collaborators, and ensuring research aims and practices are not harmful (emotionally or otherwise) to participants were present. I have also engaged with concerns about the appropriateness and usefulness of promoting and exporting psychiatric labels from the West into regions without the ability or need to use and address these labels. And, because autism is a condition with no known etiology and is diagnosed based on behaviors and development, there are myriad autism-specific neuroethical issues, including pharmacological interventions, prenatal diagnosis, and the presence or absence of morality in autistic individuals. Additionally, there are debates concerning the need to provide intense intervention to autistic individuals: at one extreme is the belief that autism is an unwanted state of being and all efforts should be made to bring the ‘real’ person out of the autistic shell while at the other extreme is neurodiversity, the perspective that autism is just one manifestation of human neurological development that is necessary for the diversity and balance of the human race and should not be eradicated, rehabilitated, or treated.

At SDS, I focused on some of the ethical concerns that arise when culture is brought into consideration. My paper was built on the premise that ethical codes and guidelines set forth by institutions such as the American Anthropological Association (AAA) and the field of Bioethics are Western-centric and broad, making them difficult to apply to on-the-ground situations when researching intellectual, behavioral, or psychiatric disability outside of the Global North. Additionally, many ethnographers and cross-cultural psychiatrists do not report the ethical issues they encounter during research or applied work meaning that, despite their ubiquity, these issues are not widely discussed. Researchers and international mental health workers will continue encountering ethical issues in the field, therefore beginning a discussion of these concerns is critical. I argue that given the situation-specific and ambiguous nature of ethical issues—which, in a sense, differentiates ethics from morals—the best way to address this topic is through story-telling.

In his ethnography on HIV in Russia, anthropologist Jarrett Zigon uses the phrase “moral breakdown” to describe times when “some event or person intrudes into the everyday life of a person and forces him to consciously reflect upon the appropriate ethical response (be it words, silence, action or nonaction)” (2010; 69). This is similar to what is commonly called an ethical dilemma, but I prefer Jarrett’s term because often, in the moment, these events feel like a shattering of moral precepts perviously considered to be indestructible. In my presentation, I described several of the moral breakdowns I experienced while doing research in India. These fell into three themes: navigating my various roles (e.g., researcher, ‘expert’), differences in health care privacy, and the context of maltreatment (in this case, restraint). 
 
My paper was presented alongside a paper describing a program in Cambodia that encouraged and empowered disabled youth in their communities through employment, education, and social events. The audience brought up and participated in discussion on issues concerning how to further academic work and scholarly discussions on ethics of field work related to disability, differing perspectives on the importance of diagnostic labels, and how and whether to push an agenda of empowerment and advocacy rather than immediate physical and/or financial needs.

The discussion during and after my presentation was incredibly helpful for how I think about my work, as were other talks I attended. For instance, one presentation presented a project that brought women with disabilities from the U.S. to Jordan to learn about and discuss education, employment, and daily living. Many events presented here were familiar as participants faced similar ethical dilemmas, including how to discuss disabled sexuality in a conservative culture and how to respond to professionals who describe needing to quell the hopes and dreams of disabled youth for more ‘realistic’ goals.  

The conference also included a panel on bioethics and disability studies, two fields that often conflict on topics such as end of life decision-making and prenatal diagnosis. In the three years I have attended SDS, this was the first year I remember seeing a panel on bioethics and it was clear some more work needs to be done to better bridge these disciplines. The connection with bioethics was unclear in two of the three papers. The third was a talk by a Disability Studies scholar about his experience being hired at a bioethics center at a prestigious university. This talk touched on some of the concerns related to merging Disability Studies and Bioethics, however did not directly address the nature of these issues.

As I noted, I have attended SDS for three years and always leave feeling more connected to the field of Disabilities Studies and armed with new ways to approach my own work. It is my hope that next year, I can attend and promote more discussion on bioethics, neuroethics, and the ethics of disability and mental health related fieldwork. Disability Studies and Bioethics both focus on issues related to the body, health, illness, and have much to learn from as well as teach each other. A forum like SDS is just one venue to promote this collaboration. 

For more information on autism, psychiatry, culture, disability studies, and neuroethics see:

Daley, Tamara. (2002). The need for cross-cultural research on the Pervasive Developmental Disorders. Transcultural Psychiatry, 39. DOI: 10.1177/13634615203900409

Davis, Lennard. (2010). The Disability Studies Reader, 3rd Edition. Ed. Lennard Davis. New York: Routledge. 

Farah, Martha. (2010). Neuroethics: An Introduction with Readings. Cambridge: The MIT 
Press.

Feinstein, Adam. (2010). A History of Autism: Conversations with Pioneers. West Sussex: 
Wiley-Blackwell.

Grinker, Roy R. (2007) Unstrange Minds: Remapping the World of Autism. New York: Basic Books.

Kleinman, Arthur. (1988). Rethinking Psychiatry: From Cultural Category to Personal Experience. New York: Free Press.

Sarrett, Jennifer. (2012). Autistic Human Rights—A Proposal. Disability Studies Quarterly, 
32(4). http://dsq-sds.org/article/view/3247/3186

Seibers, Tobin. (2008) Disability Theory. Ann Arbor: The University of Michigan Press.
World Health Organization. (2001). The World Health Report 2001: Mental Health: New Understanding, New Hope. Geneva: World Health Organization.


Want to cite this post?

Sarrett, J. (2013). Report from Society for Disability Studies: Bringing Ethics, Bioethics, and Disability Studies Together. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2013/08/report-from-society-for-disability.html

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