Issue 1 | Creating Disability, Creating Community: Disability in Medical Anthropology

By Molly Bloom, MA
PhD Candidate, UCLA Anthropology

Contents

Introduction
Selected Articles
Pedagogical Resources

Introduction

When I began research for this virtual issue on disability in medical anthropology, I realized that the emerging field of Disability Anthropology owes a great deal to scholars who have contributed to Medical Anthropology Quarterly. For this virtual archive, I’ve chosen only a small selection of the tremendous work on disability in the journal. The authors in this collection blur the boundaries of disability, push those boundaries beyond the medical clinic, and situate the category within social and geographical contexts. The articles each demonstrate a unique look into a “Disability World” (Ginsburg and Rapp 2013) and encourage readers to rethink the seemingly inherent connection between disability, medicine, and stigma.

In one sense, this collection maps the genesis of disability anthropology, tracing its roots to critical perspectives on illness (Scheper-Hughes and Lock 1986), auto-ethnographic, and phenomenological accounts of illness and impairment (Kaufman 1988; Trostle 1988). In the genesis charted here, thick description of communities begins to emerge around disability (Segar 1994; Shuttleworth and Kasnitz 2004). Even while these thick descriptions and theorizations of disability emerged alongside the development of medical anthropology, they were often not in explicit conversation with disability studies or work that took disability as a critical analytic. The rise of disability anthropology in the present moment gives us an opportunity to look at the resonances between the critical projects of medical anthropology and disability studies, while also noting some of the ways that disability anthropology – as a field that engages with the dilemmas of disability highlighted by disability studies and amplified as disability studies travels beyond the geographies of liberalism in which it originated – signals a shift or refinement in focus.

This genesis hints at those articles which remain outside of this collection, such as Rayna Rapp’s pioneering work on genetic counseling – tracing disability as a social fact that is stigmatized through medical discourse (Rapp 1988), and Mathew Kohrman’s mapping of the processes through which disability emerges as an artifact of modernity and growth in China (Kohrman 2003). In another sense, it provides a sliver of disability anthropology, in which these theories are employed, questioned and transformed through ethnographic engagement among disability communities in: specific economic, geopolitical, and cultural contexts (Açiksöz 2012; Friedner 2014); the daily minutia of disability discourse in medical clinics (Thomas 2016); and communities with intersecting identities, like migrant laborers, whose life circumstances seem to drive inevitably toward disability (Sangaramoorthy forthcoming). Read together, these articles move through disability anthropology, as it emerged alongside disability studies and the disability rights movement in Westernized contexts (Shuttleworth and Kasnitz 2004), through the increasing focus in the field on disability in global contexts.

This collection opens with Scheper-Hughes and Lock’s (1986) brief essay on illness, in which they argue that illness is not simply a biological fact; rather, it is a social fact with “meanings that are unstable, negotiated, and contested” (140). Though the authors do not talk explicitly about disability, their argument is a tenet of medical anthropology and an essential building block for the disability anthropology it precedes. This is complimented by approaches to illness and impairment steeped in phenomenology. Trostle (1988) reviews anthropologist Robert Murphy’s (1987) account of his increasing paralysis from a spinal tumor. This has become a seminal work in disability anthropology, despite Trostle’s assessment that Murphy does not succeed in “making any detailed new theoretical contributions to the study of disability” (317). In line with Murphy’s approach to interrogating disability through experience, Kaufman (1988) carries out a phenomenological reading of stroke rehabilitation. Kaufman’s critique of medicalization is an example of this widely influential critique in disability anthropology and disability studies more generally. However, Kaufman departs from these disciplines through her focus on phenomenological suffering among stroke survivors. Disability anthropology and disability studies have generally not focused on suffering in order to contradict the tragic lens through which disability is sensationalized in popular stories and described in research. Instead, disability is described as an aspect of human difference that, though often stigmatized, is valuable.

As critical perspectives on medicine expanded, some anthropologists turned to medical clinics to do ethnographic research with ill and impaired people. One example is Segar’s (1994) research with South Africans with epilepsy who navigate the complicated structure of governmental disability grants and epilepsy clinics, through which their adherence to medication regimes is monitored. Segar does not theorize disability, yet her attention to the social frameworks of morality and compliance become important aspects of disability anthropology. Shuttleworth and Kasnitz (2004) describe how disability as a social construction manifests in the work of Joan Ablon. Through tracing her ethnographic work with people with disabilities in the United States, they provide a rich look at the history of disability anthropology.

In ethnographic accounts of disability communities in non-Western contexts, Açiksöz (2012) and Friedner (2014) approach disability not simply as a consequence of cultural context, but as a driving force of identity-formation. Açiksöz draws attention to the way impairment is wrapped up in political identity among ultranationalist veterans in Turkey who became disabled in the Turkish-Kurdish conflict. Friedner explores how disability gains a sense of ‘value’ for deaf Indians, where deafness “is productive of new forms of social, moral, and economic practices” (506). Both authors move theories of disability beyond simply conditions which lead to stigma. This tendency to think beyond stigma when theorizing disability has been an important facet of disability anthropology and has roots in the disability rights movement, particularly the tendency to think about disability not simply as a negative condition of the body and mind, but as a shared experience through which community is forged.

In Thomas’ article (2016) on prenatal screening for Down syndrome in the Brittan, he argues that Down syndrome is produced and upheld as “a negative pregnancy outcome” (238). Thomas builds on the work of anthropologists who have explored the nuances of genetic screening, particularly Rayna Rapp. He makes an important addition to such studies and the field of disability anthropology by providing an account of how this stigma is produced in the mundane routines of medical care. While his focus is on the clinic, his attention to ordinary discourse as a forceful means through which disability is created and, in this case stigmatized, is an important contribution.

Sangaramoorthy provides an ethnographic account of disabled migrant Mexican women laborers that combines feminist and gender scholarship, migration studies, and crip theory. Her account draws attention to the intersections of ethnicity, nationality, gender, class status, and disability. Her emphasis on the geopolitical forces through which many disabilities are created is an important example of the current direction of disability anthropology. Read alongside the other articles in this collection, Sangaramoorthy’s work hints at tension in describing disability as a force of positive community building (e.g. Friedner 2014; Shuttleworth and Kasnitz 2004) and as a negative consequence of the forces that lead to migration.

On a theoretical level, these articles provide valuable insight to questions like: What is disability? What can be learned from a cross-cultural comparison of disability? Does medicine and the notion of cure truly improve the lives of disabled people? What social, economic, and geopolitical conditions contribute to the condition through which bodies are disabled, and what contributes to the stigmatization of those bodies? On a pragmatic level, the articles provide insight into methodologies for conducting research in disability worlds. These methodologies are often not tied simply to research for research’s sake; rather they lend themselves to practical interventions into the inequality on which disability and intersecting categories like ethnicity, gender, and class status are mapped. With this wealth of information and analysis, these articles bring to light the potentially transformative relationship between disability theory and disability justice. As the field of disability anthropology continues to expand out in different directions, it is essential to return to the theoretical questions about disability, stigma, and (de)medicalization and the potential for impact which they chart.

Recommended citation: Bloom, Molly. (2019) “Creating Disability, Creating Community: Disability in Medical Anthropology.” Medical Anthropology Quarterly Online.

References

Açiksöz, S. C. (2012), Sacrificial Limbs of Sovereignty: Disabled Veterans, Masculinity, and Nationalist Politics in Turkey. Medical Anthropology Quarterly, 26: 4-25.

Friedner, M. (2014), Deaf Capital: An Exploration of the Relationship between Stigma and Value in Deaf Multilevel Marketing Participation in Urban India. Medical Anthropology Quarterly, 28: 502-518.

Ginsburg, Faye, and Rayna Rapp. 2013. “Disability Worlds.” Annual Review of Anthropology 42: 53-68.

Kaufman, S. R. (1988), Toward a Phenomenology of Boundaries in Medicine: Chronic Illness Experience in the Case of Stroke. Medical Anthropology Quarterly, 2: 338-354.

Kohrman, M. (2003), Why Am I Not Disabled? Making State Subjects, Making Statistics in Post-Mao China. Medical Anthropology Quarterly, 17: 5-24.

Murphy, R. F. (1987), The Body Silent. New York: Henry Holt and Company.

Rapp, R. (1988), Chromosomes and Communication: The Discourse of Genetic Counseling. Medical Anthropology Quarterly, 2: 143-157.

Sangaramoorthy, T. (2019), Liminal Living: Everyday Injury, Disability, and Instability among Migrant Mexican Women in Maryland’s Seafood Industry. Medical Anthropology Quarterly. Accepted Author Manuscript.

Scheper‐Hughes, N. and Lock, M. M. (1986), Speaking “Truth” to Illness: Metaphors, Reification, and a Pedagogy for Patients. Medical Anthropology Quarterly, 17: 137-140.

Segar, J. (1994), Negotiating Illness: Disability Grants and the Treatment of Epilepsy. Medical Anthropology Quarterly, 8: 282-298.

Shuttleworth, R. P. and Devva Kasntiz (2004), Stigma, Community, Ethnography: Joan Ablon’s Contribution to the Anthropology of Impairment‐Disability. Medical Anthropology Quarterly, 18: 139-161.

Thomas, G. M. (2016), An Elephant in the Consultation Room?: Configuring Down Syndrome in British Antenatal Care. Medical Anthropology Quarterly, 30: 238-258.

Reading The Archive, Issue 1 | Creating Disability, Creating Community: Disability in Medical Anthropology

Speaking “Truth” to Illness: Metaphors, Reification, and a Pedagogy for Patients | Nancy Scheper‐Hughes and Margaret M. Lock (1986)

The Body Silent. Robert F. Murphy  | James Trostle (1988)

Toward a Phenomenology of Boundaries in Medicine: Chronic Illness Experience in the Case of Stroke | Sharon R. Kaufman (1988)

Negotiating Illness: Disability Grants and the Treatment of Epilepsy | Julia Segar (1994)

Stigma, Community, Ethnography: Joan Ablon’s Contribution to the Anthropology of Impairment‐Disability | Russell P. Shuttleworth (2004)

Sacrificial Limbs of Sovereignty: Disabled Veterans, Masculinity, and Nationalist Politics in Turkey | Salih Can Açiksöz (2012)

Deaf Capital: An Exploration of the Relationship between Stigma and Value in Deaf Multilevel Marketing Participation in Urban India | Michele Friedner (2014)

An Elephant in the Consultation Room?: Configuring Down Syndrome in British Antenatal Care | Gareth Thomas (2016)

Liminal Living: Everyday Injury, Disability, and Instability among Migrant Mexican Women in Maryland’s Seafood Industry | Thurka Sangaramoorthy (2019)

Pedagogical Resource: Creating Disability, Creating Community: Disability in Medical Anthropology

Prepared by Molly Bloom

This worksheet accompanies the MAQ virtual issue: “Creating Disability, Creating Community: Disability in Medical Anthropology.” Participants should have already read all or some of the articles in the collection. Additionally, they should have the readings on hand and access to the internet. These activities and questions are meant as a guideline for group work in classes (groups of 2-5 would work well), but they can be easily adapted for different contexts.

Reactions

  1. What did you learn that you didn’t know before reading the article? Were you surprised by anything in the article? Share your initial reactions with the class or with a classmate/ colleague.
  2. In the review of The Body Silent, Trostle writes: “Murphy says that he has directed this work primarily toward the general public and all people with disabilities, but at times he becomes too academic for this audience” (Trostle 1988: 317).

With this quote in mind, discuss with your group the authors and audiences of the articles (or one article) in this collection. Use these questions to guide your discussion:

  • For whom are the articles written?
  • Do these articles about disability target an audience of disabled people?
  • Are they written by disabled people?
  • Do social categories such as ability, class, gender, sexual orientation, ethnicity, nationality, religion, etc. of the authors/ readers influence the overall contributions of the articles? How?

Terminology

  1. As a class, write the different words used in the articles to describe disability and/ or illness on the board.
  2. As a class or in groups, discuss the following questions:
  • How do these differences in terminology nuance, or specify the meaning of disability and/or illness in each article?
  • Do definitions of illness/ disability shift over time through the articles? If so, how?

Online Activity – What is Medical Anthropology:

  1. With your group, skim the Society for Medical Anthropology’s (SMA) webpage, “What is Medical Anthropology.” Discuss how the articles in this collection do or do not fit within the definition of medical anthropology outlined on the website.
  2. The SMA website outlines the following fields of study as falling within the scope of medical anthropology. With your group, discuss whether the articles in this collection fit with any of the issues outlined below (consider assigning 1 or 2 articles to each group):
  • Health ramifications of ecological “adaptation and maladaptation”
  • Popular health culture and domestic health care practices
  • Local interpretations of bodily processes
  • Changing body projects and valued bodily attributes
  • Perceptions of risk, vulnerability and responsibility for illness and health care
  • Risk and protective dimensions of human behavior, cultural norms and social institutions
  • Preventative health and harm reduction practices
  • The experience of illness and the social relations of sickness
  • The range of factors driving health, nutrition and health care transitions
  • Ethnomedicine, pluralistic healing modalities, and healing processes
  • The social organization of clinical interactions
  • The cultural and historical conditions shaping medical practices and policies
  • Medical practices in the context of modernity, colonial, and post-colonial social formations
  • The use and interpretation of pharmaceuticals and forms of biotechnology
  • The commercialization and commodification of health and medicine
  • Disease distribution and health disparity
  • Differential use and availability of government and private health care resources
  • The political economy of health care provision.
  • The political ecology of infectious and vector borne diseases, chronic diseases and states of malnutrition, and violence
  • The possibilities for a critically engaged yet clinically relevant application of anthropology

Discuss your answers with the class.

  1. The long title of MAQ journal is “Medical Anthropology Quarterly: International Journal for the Analysis of Health.” In groups, describe how the articles in this collection are (or are not) about ‘health’ (consider assigning 1 or 2 articles to each group).

Online Activity – What is Disability Anthropology:

  1. The Disability Research Interest Group (DRIG) is a special interest group (SIG) of the SMA. It is a group in which many disability anthropologists feel at home. Skim the Disability Research Interest Group webpage. How do the articles in the collection fit (or not) within the definition of anthropology outlined by the DRIG (consider assigning 1 or 2 articles to each group)?

Discussion Questions

  1. Define critical medical anthropology (hint – skim Scheper-Hughes and Lock 1986). As a group, select 1 or 2 articles and explain how they can or cannot be considered critical medical anthropology.
  2. Shuttleworth and Kasnitz (2004) make a case for the anthropology of impairment-disability, which is generally known now as disability anthropology. What are some of the critiques of medical anthropology outlined by Shuttleworth and Kasnitz (hint – skim the first full paragraph on page 142)?

Selecting 1 or 2 other articles from the collection, discuss whether these critiques apply to the article(s).

  1. As a class, discuss similarities and differences among the earlier (before 2000) and later (after 2000) articles.
  2. In groups, imagine that you are going to conduct a study that you consider disability anthropology. Discuss the following points and present them to the class.
  • Outline 3-5 defining features of disability anthropology.
  • Describe your project.
  • Describe how your project fits within the parameters of disability anthropology you created, and why it might be important to frame such a project as disability anthropology, rather than medical (or any other) anthropology.