April 2017. Critical Care: Disability Interventions and Medical Humanities - A Symposium


A day-long exploration of the meanings of cure and care in contexts of illness, injury, disability, and impairment.

Registration for the event is open at hrc.rice.edu/eventregistration

Rice University, Saturday, April 8th 2017

Zoë Wool, Rice University, Department of Anthropology and Program in Medical Humanities

Kirsten Ostherr, Rice University, Department of English and UT School of Public Health

Cory Silverberg, Author of The Ultimate Guide to Sex and Disability

About the Symposium:

This interdisciplinary symposium hones in on disability as a unique space within which to explore a key tension of medical humanities: the oft-lamented juxtaposition between cure and care. Taking this juxtaposition as both our anchor and incitement, we bring together scholars, artists, researchers, and community members working on disability to explore, and explode, the distinction between cure and care. We frame these contributions as disability interventions in a double sense: They may be social, technical, and theoretical interventions into forms or ideas of disability. But they may also leverage disability itself as an intervention into biomedical, community, and conceptual practice.

The symposium is free and open to the public, but space is limited. Please RSVP here to ensure your space.

Please help us maintain an accessible, accommodating environment by not wearing or using fragrances of any kind. All spaces are wheelchair accessible. There will be ASL interpretation for the day, and the film will be screened with open captions. For more access information or requests, please contact zoe.wool@rice.edu.

Symposium Schedule:

8-9am: Farnsworth Pavillion | Breakfast and Welcoming Remarks

9:05-10:30: Farnsworth Pavillion | Keynote Address, Eli Claire

10:40-12pm: Farnsworth | Houston Disability Landscape Roundtable | Moderated by Cory Silverberg

Angel Ponce, Mayor's Office of People with Disabilities

Francisco Argüelles, Living Hope Wheelchair Association

Morénike Giwa Onaiwu, Autism Women’s Network

Kunle Adegboye, Houston Black Deaf Associates (HBDA)

11:45-2:30 Location TBD | Student poster session

12:10-2pm Location TBD | Lunch + Discussion on Assistive and Therapeutic Technologies | Moderated by Kirsten Ostherr

1:15-2pm: Conversation between Marcia O’Malley (Mechenical Engineering, Rice) and Kathryn Nedley (OTR, OTD, ATP at TIRR) on cure and care in assistive and therapeutic technology, from design to implementation.

2:10-3:20pm: Farnsworth | Discussion with Lochlann Jain
, Stanford University | Moderated by Zoë Wool

3:30-4:25pm: Farnsworth Pavilion | Sins Invalid screening and Talkback
 with Maria Palacios

4:30-6:00pm: Brochstein Pavilion | Closing Reception


HRC, Anthropology, Medical Humanities, CSWGS


Participant Bios:

Dr. Zoë Wool is a medical anthropologist interested in questions of personhood and the body at times when the body—both its fleshy contours and its social entailments—becomes unsteady. These interests are rooted in her ethnographic fieldwork with grievously injured American soldiers and their family members. In addition to anthropology, her work draws on queer and critical theory, critical disability studies, and studies of public culture to address questions of debility and intimacy; personhood and the body; war, trauma, and modern medicine; and the fleshy contours of worthy life in the contemporary United States. As an Assistant Professor of Anthropology at Rice University, Dr. Wool has taught classes such as Ethnographies of Care, Illness, Disability, and the Gendered Body, Introduction to Sociocultural Anthropology, and Medical Anthropology. Her first book, After War: The Weight of life at Walter Reed (Duke University Press, 2015), is based on fieldwork she conducted in 2007-8 Walter Reed Army Medical Center in Washington D.C., the U.S. army’s flagship medical facility. Recently, she has been involved in two different projects: the first exploring questions of “care” in the context of U.S. veterans and their families, and the second utilizing archival methodologies to study traumatic flashback as a genre of experience, and the aesthetic and medical technologies through which this genre has become clinically legible over the last century and a half.

Dr. Kirsten Ostherr teaches film and media studies, focusing on historical and contemporary visualizations of health and disease in photography, documentary film, television, animation, advertising, medical imaging, and web-based media. She is Professor of English at Rice University and an Adjunct Professor at the The UT School of Public Health. Her current research focuses on the emergent field of mHealth (mobile health) media, concepts of algorithmic life and the quantified self, and design-based translations of data into story. Since 2012, Dr. Ostherr has been the co-founder and director of the Medical Futures Lab, a collaborative center bringing together faculty from Rice, Baylor College of Medicine, and UT Health to reimagine medicine at the intersection of humanity and technology. Dr. Ostherr has been a Visiting Scholar at the Institute for Medical Humanities, at the University of Texas Medical Branch, Galveston, and she is a Fellow in The John P. McGovern, M.D. Center for Humanities and Ethics. She is author of Cinematic Prophylaxis: Globalization and Contagion in the Discourse of World Health (Duke, 2005), and Medical Visions: Producing the Patient through Film, Television and Imaging Technologies (Oxford, 2012). Dr. Ostherr lectures widely and has recently given invited talks in Berlin, Geneva, Palo Alto, Chicago, San Diego, Philadelphia, New York, and other locations including the White House.

Cory Silverberg is a Canadian sex educator, author, public speaker, and blogger. He is a founding member of Come As You Are, a Canadian sex-positive sex shop known for providing a safe and comfortable environment where people can access sex information and products, as well as their work making sex toys more accessible for people with disabilities. A certified sex educator and former chair of sexuality educator certification for the American Association of Sexuality Educators, Counselors and Therapists, Cory teaches on topics including sex and disability, sex and technology, and pleasure, inclusion, and access across North America. He is the co-author of the "Ultimate Guide to Sex and Disability" and since 2005 he has been the Sexuality Guide for About.com. Silverberg's children's book What Makes a Baby was the most funded children's book project on Kickstarter to date, and was released in 2012. Two follow-up books are to be published by Seven Stories Press. His newest book, Sex Is a Funny Word: A Book about Bodies, Feelings, and YOU, was published by Seven Stories Press to high acclaim in May 2015.

White, disabled, and genderqueer, Eli Clare lives in the Green Mountains of Vermont where he writes and proudly claims a penchant for rabble-rousing. He has written two books of creative non-fiction, Brilliant Imperfection: Grappling with Cure and Exile and Pride: Disability, Queerness, and Liberation, and a collection of poetry, The Marrow's Telling: Words in Motion, and has been published in many periodicals and anthologies. Eli speaks, teaches, and facilitates all over the United States and Canada at conferences, community events, and colleges about disability, queer and trans identities, and social justice. Among other pursuits, he has walked across the United States for peace, coordinated a rape prevention program, and helped organize the first ever Queerness and Disability Conference. When he's not writing or on the road, you can find him reading, hiking, camping, riding his recumbent trike, or otherwise having fun adventures.

Dr. Lochlann S. Jain is an Associate Professor of Anthropology at Stanford University. Professor Jain's research is primarily concerned with the ways in which stories get told about injuries, from car crashes to lung cancer, from mountain climbing deaths to space shuttle explosions. Figuring out the political and social significance of these stories has led her to the study of medicine, law, product design, medical error, and histories of engineering, regulation, corporations, and advertising. Jain’s book, Malignant: How Cancer Becomes Us (University of California Press, 2013), aims to better understand American life and culture through cancer. Through a combination of history, memoir, and cultural analysis, Malignant explores why cancer remains so confounding, despite the billions of dollars spent in the search for a cure. Jain's widely reviewed book, Injury, (Princeton University Press, 2006) analyzes how some products come to be understood as dangerous, while others are perceived as inert (guns don’t kill people) -- and how these legal and social understandings can help better understand social and economic disparities as well as reflect on a history in which notions of responsibility and negligence have radically changed.

Dr. Marcia O’Malley is a Professor of Mechanical Engineering and of Computer Science at Rice University, and directs the Mechatronics and Haptic Interfaces Lab. She is an Adjunct Associate Professor in the Departments of Physical Medicine and Rehabilitation at both Baylor College of Medicine and the University of Texas Medical School at Houston. Additionally, she is the Director of Rehabilitation Engineering at TIRR-Memorial Hermann Hospital, and is a co-founder of Houston Medical Robotics, Inc. Her research addresses issues that arise when humans physically interact with robotic systems, with a focus on training and rehabilitation in virtual environments. In 2008, she received the George R. Brown Award for Superior Teaching at Rice University. O'Malley is a 2004 ONR Young Investigator and the recipient of the NSF CAREER Award in 2005. She is a Fellow of the American Society of Mechanical Engineers.
Kathryn Nedley, OTR, OTD, ATP is an occupational therapist for TIRR Memorial Hermann. She graduated from Creighton University in 2012 with a Bachelor of Science in Health Sciences, as well as her Doctorate in Occupational Therapy. She primarily treats patients with spinal cord injury and other neurological or traumatic injuries. In 2016, she began working with TIRR's Neurorecovery Reseach Center to further advancements in treatment of these serious neurological injuries and illnesses. Primary interest areas include use of technology to maximize independence and community engagement, and advancing clinical practice with greater integration of neurorecovery-based therapeutic interventions.

Living Hope Wheelchair Association is an independent, non-profit organization serving people with spinal cord injuries as well as with other disabilities so that they may lead full and productive lives. Our group was founded by people with spinal cord injuries,  the majority of our members are not entitled to benefits, lack medical insurance, and do not have a stable source of income. We provide services to our members and engage in community advocacy to achieve our goals. Suffering a catastrophic spinal cord injury has a brutal impact on a person’s life. If this person is an immigrant or a low-wage worker in the United States then he or she is in an extremely vulnerable situation. During our existence as an organization we have been able to help each other first to survive the depression that comes after the accident, then to survive the problems that come with not having resources to buy medical supplies and equipment. We have learned to improve our quality of life through hope and solidarity, sharing what we have and organizing to get what we need.

Angel Ponce is a resident of Houston Texas. He is currently working for the Mayor’s Office for People with Disabilities as a Senior Customer Service Representative. He serves as a liaison between the mayor, city council, city departments and other public and private entities on matters pertaining to people with disabilities in Houston. Prior, Angel served as an Administrative/Case Aide for the Mayor’s Anti-Gang Office from 2008 - 2010 and in 2013– 2014. Since 2006 he has volunteered and presented to hundreds of schools and organizations in Houston, Baytown, Pasadena, and Austin, Texas and in California. He is currently working towards finishing his Associates and ultimately plans to graduate with a bachelor degree in Political Science and a minor in social work.

Morénike Giwa is the Autism & Race Committee Chair and Networking Moderator on the Board of Directors for the Autism Women’s Network.  Morenike currently chairs the Global Community Advisory Board for the NIH Division of AIDS (DAIDS) funded AIDS Clinical Trials Group (ACTG), which is the world’s oldest and largest international community HIV clinical trials program. Morénike is a Houston Project-Wide Part D community advisory board member and has also previously chaired the Houston Ryan White Planning Council in addition to chairing its Operations and the Quality Assurance Committees and various Ryan White workgroups.  Morénike formerly served on the CDC-funded elimination of Mother-to-Child HIV Transmission US Working Group and the Families and Schools Together Project. She is also the founder of the former Positive Playdates, a playdate group (now merged with a local nonprofit) that connected HIV affected families and refugee youth, and of the newly launched Advocacy Without Borders, an initiative to reduce disparities through education, community advocacy and self-empowerment.

Kunle Adegboye is president of Houston Black Deaf Advocates (HBDA). The local affiliate of the National Black Deaf Advocates, the HBDA mission is to: Provide a forum, whereby. African-American Deaf and Hard-of-Hearing citizens can promote and protect the African-American & Deaf and Hard-of-Hearing cultures and heritages; Better inform the community and us about the rights and responsibilities of the African-American Deaf and Hard-of-Hearing citizens; Offer opportunities to learn about the machinery of politics through workshops, seminars, networking, and personal experiences; Encourage increased leadership development and job opportunities for African-American Deaf and Hard-of-Hearing citizens in the Greater Houston and to realize their full potential; Build a network for cooperative action with NBDA.

Sins Invalid is a performance project that incubates and celebrates artists with disabilities, centralizing artists of color and queer and gender-variant artists as communities who have been historically marginalized. Our performance work explores the themes of sexuality, embodiment and the disabled body. Conceived and led by disabled people of color, we develop and present cutting-edge work where normative paradigms of "normal" and "sexy" are challenged, offering instead a vision of beauty and sexuality inclusive of all individuals and communities. Sins Invalid defines disability broadly to include people with physical impairments, people who belong to a sensory minority, people with emotional disabilities, people with cognitive challenges, and those with chronic/severe illness. We understand the experience of disability to occur within any and all walks of life, with deeply felt connections to all communities impacted by the medicalization of their bodies, including trans, gender variant and intersex people, and others whose bodies do not conform to our culture(s)' notions of "normal" or "functional."