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Resilient Cyborgs pp 153–187Cite as

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‘How Did You Get that Scar?’ Gender and the Appropriation of Visibly Marked Bodies

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Part of the book series: Health, Technology and Society ((HTE))

Abstract

This chapter aims to unravel how gender and age intersect in the ways in which women learn to live with pacemakers and ICDs. Although all wired heart cyborgs have to appropriate their technologically transformed bodies, women may face other vulnerabilities, partly because these devices are designed to fit adult male bodies. During my fieldwork, I learnt that scars, resulting from the implantation of pacemakers and ICDs, constitute a major problem, particularly for women. Although these heart devices are inserted under the skin, they leave their marks on the body. To conceptualize how women learn to live with their visibly marked bodies, I adopt and refine the theory of passing developed in disability studies. This chapter describes how gendered mismatches between devices, bodies, and Western cultural norms about femininity and beauty contribute to a techno-geography of resilience, which delegates new responsibilities to women.

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Notes

  1. 1.

    There are major differences in access to pacemakers and defibrillators between economically wealthy and poor countries, which will be addressed in Chap. 9.

  2. 2.

    In the US, which has the highest rate of ICD implantations (>100,000 implantations each year), 74% of those implanted with defibrillators in the period 2006–2009 were White men, a majority having private health care. Most of them (80%) received the ICD because they were considered to be at high risk of future heart-rhythm irregularities (arrhythmia) but had not yet experienced a sudden cardiac arrest, so-called primary preventions (Anonymous 2010; Estes 2014). In the UK, similar patterns can be found where approximately 80% of defibrillators are implanted in White men although the overall implantation rates are much lower than in the US, which is usually explained by differences in disease prevalence between the US and the UK (Cunningham et al. 2012). The Netherlands is listed as third in the European ranking of ICD implantation (Interview chairmen STIN 2012), and 30% of its users are women (Nederlandse Hartstichting 2017). Unfortunately, detailed information on sex differences in ICD implantations in other European countries is not available because it is not collected systematically. Sex differences in ICD implantation rates are partly explained by differences in the incidence of coronary heart disease between women and men. However, other reasons are mentioned as well, particularly the commonly shared view that heart diseases are a male problem, so that women are less likely to be referred for treatment of heart disease. A similar problem has been identified for ethnic groups in the US who are less likely to be provided with ICDs than White men (Redberg 2007; Santangeli 2010). Pacemaker implantation rates (with 938 implantations per million inhabitants in 2011) show sex differences as well, although they are much smaller than for ICDs, ranging from 47.2% women in Germany, 45.3% in the Netherlands, and 49% in the US (Williams and Stevenson 2017; Boorsma and Zaadstra 2011). Although children, including babies, receive pacemakers and defibrillators as well, their numbers are very small compared with adults. They account for 1% of pacemakers and fewer than 1% for ICD implantations in the US (Anonymous 2015; Tracey et al. 2012).

  3. 3.

    Women are not the only ones who are affected by the body norms inscribed in pacemakers and ICDs. Children suffer from them as well. Like women, they have to learn to live with their marked bodies in a culture which celebrates normalcy and healthy young bodies. Bodies that deviate from these norms run the risk of being set apart as different. These processes of othering (Moser 2000) may be particularly compelling for children because of the social dynamics in youth culture, where being identified as ‘one of us’ is very important. For children and babies, there are other problems as well. Devices designed for adult men not only result in visibly changed bodies but require specific implantation procedures because of differences in body dimensions. Children who receive pacemakers and defibrillators, thus, face more complicated surgery.

  4. 4.

    See Chap. 2, endnote 15, for a more detailed description and references to these online communities.

  5. 5.

    Sub-muscular pockets will be made when the skin is too thin (Derksen 2011, 6).

  6. 6.

    The patient was referred to another hospital where cardiologists had more expertise with inserting three-lead ICDs.

  7. 7.

    According to Davis et al., men are more concerned with how their partners and significant others respond to their visibly changed bodies (Davis et al. 2004).

  8. 8.

    Post 18 July 2016; https://www.facebook.com/livingwithistuk/

  9. 9.

    See Beery et al. 2002 for a similar account of how pacemakers challenge the relationships between femininity and beauty.

  10. 10.

    A classic work often cited in disability studies is Erving Goffman’s Stigma (1963). Although Goffman’s sociological approach to understanding disability has been, and still is, very influential, there are also scholars who criticize his work for reifying the perspective of abled people on disability. See Brune and Wilson (2013) for a discussion of this criticism.

  11. 11.

    See Dalibert (2014, 214) for a similar observation of the distress of a woman living with a neuro-stimulation implant over the visibility of her device.

  12. 12.

    In January 2019, the board of STIN decided to slim down the organization by ending the publication of their journal, initially called ICD Journaal, later STIN Journaal (Split 2019).

  13. 13.

    In 2005, Wired4life started as a free Yahoo group of about 12 women from the US, Canada and the UK who continued to be active and involved members when Dawn Huberty turned the website into a Facebook community in May 2016. Since 2008, Wired4life has been registered as a non-professional organization that not only runs an online community but also organizes international conferences to bring “wired sisters together from the globe to meet in person and to learn more about their devices” (Huberty 2016, 13). Wired4life has also organized smaller local gatherings, published a monthly newsletter (410 subscriptions), and visits to two American pacemaker and ICD manufacturers. In the past decade, Wired4life has evolved into a lively online community with offshoots on Facebook: groups initiated by women who first participated in Wired4life (Huberty 2016, 18).

  14. 14.

    https://www.guidestar.org/profile/90-0448862

  15. 15.

    Post on Wired4life (2 March 2016).

  16. 16.

    Infections of scars may be problematic because they will develop into so-called keloid scars which are even more visible than ‘normal’ scars.

  17. 17.

    Although mammography, a screening technique used to detect breast cancer, does not damage the implant, it may be extra painful or may hamper an adequate imaging of the breast (Witters 2011).

  18. 18.

    The Little Rascals is the name of a popular American youth movie of 1994.

  19. 19.

    To be sure, men living with internal heart devices also have to engage in some of these body management techniques, most notably decreasing the itching of scars, taking care of infected scars, and protecting them against sunburn.

Bibliography

  • Altman, L. K. (2002, January 18). Arne H. W. Larsson, 86, had first internal pacemaker. The New York Times. www.nytimes.com/2002/01/18/world/arne-h-w-larsson-86-had-first-internal-pacemaker.html. Accessed 7 Feb 2012.

  • Anonymous. (2001). Biography of Arne Larsson. Heart Rhythm Society online. www.hrsonline.org/news/ep-history/notable-figures/arnelarsson.cfm. Accessed 7 Feb 2012.

  • Anonymous. (2010). ICDs at a glance. http://icdusergroup.blogspot.co.UK/2010/09/icds-at-glance.html. Accessed 10 Feb 2012.

  • Anonymous. (2015, November 2). New push for pint-sized medical devices to treat sick kids. Associated Press. Epoch Times, 5.

    Google Scholar 

  • Anonymous. (2017). Patient information about pacemaker insertion procedures at the Johns Hopkins Medical Department. http://www.hopkinsmedicine.org/healthlibrary/test_procedures/cardiovascular/pacemaker_insertion_. Accessed 5 Jan 2017.

  • Bartky, S. L. (1997). Foucault, femininity, and the modernization of patriarchal power. In K. Conboy, N. Medina, & S. Stanbury (Eds.), Writing on the body: Female embodiment and feminist theory (pp. 128–154). New York: Columbia University Press.

    Google Scholar 

  • Beery, T. A., Sommers, M. S., & Hall, J. (2002). Focused life stories of women with cardiac pacemakers. Western Journal of Nursing Research, 24(1), 7–27.

    Article  Google Scholar 

  • Berg, A. J., & Lie, M. (1993). Feminism and constructivism: Do artifacts have gender? Science, Technology & Human Values, 20, 332–351.

    Article  Google Scholar 

  • Boorsma, P., & Zaadstra, P. (2011). Cijfers en statistieken. ICD Journaal, 2, 29.

    Google Scholar 

  • Bordo, S. (1997). The body and the reproduction of femininity. In K. Conboy, N. Medina, & S. Stanbury (Eds.), Writing on the body: Female embodiment and feminist theory (pp. 90–110). New York: Columbia University Press.

    Google Scholar 

  • Borkman, T., & Munn-Giddings, C. (2008). Self-help organisations and changing relations between patients/consumers and health care systems in the U.S. and the U.K. In M. S. Chambre & M. Goldner (Eds.), Advances in medical sociology, volume 10: Patients, consumers and civil society (pp. 127–150). Bingley: Emerald Group Publishing Limited.

    Chapter  Google Scholar 

  • Brown, P. (1992). Popular epidemiology and toxic waste contamination: Lay and professional ways of knowing. Journal of Health and Social Behavior, 33, 267–281.

    Article  Google Scholar 

  • Brune, J. A., & Wilson, D. J. (Eds.). (2013). Disability and Passing: Blurring the lines of identity. Excerpt. Philadelphia: Temple University Press.

    Google Scholar 

  • Chandler, E. (2014). Disability and the desire for community. Thesis, University of Toronto.

    Google Scholar 

  • Clarke, J., & James, S. (2003). The radicalised self: The impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome. Social Science and Medicine, 57(8), 1387–1395.

    Article  Google Scholar 

  • Crenshaw, K. (1989). Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics. University of Chicago Legal Forum, 1, Article 8. http://chicagounbound.uchicago.edu/uclf/vol1989/iss1/8. Accessed 8 Apr 2017.

  • Crenshaw, K. W. (1991). Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review, 43(6), 1241–1299.

    Google Scholar 

  • Cunningham, D., Charles, R., Cunningham, M., de Lange, A. (2012). Cardiac rhythm management: UK National Clinical Audit 2010. London: National Institute for Cardiovascular Outcomes Research.

    Google Scholar 

  • Dalibert, L. (2014). Posthumanism and Somatechnologies: Exploring the intimate relations between humans and technologies. PhD thesis, University of Enschede, Enschede.

    Google Scholar 

  • Dalibert, L. (2016). Living with spinal cord stimulation: Doing embodiment and incorporation. Science, Technology & Human Values, 41(4), 635–659.

    Article  Google Scholar 

  • Davis, L. L., et al. (2004). Body image changes associated with dual-chamber pacemaker insertion in women. Heart & Lung, 33(5), 273–280.

    Article  Google Scholar 

  • de Boer, M.. (2016). Extended bodies: An empirical-philosophical study of women’s bodily experiences in breast cancer. PhD thesis, Maastricht University, Maastricht.

    Google Scholar 

  • Derksen, R. (2011). De eigenlijke implantatie van een ICD. ICD Journal, 3, 4–6.

    Google Scholar 

  • Epstein, S. (1996). Impure science: Aids, activism, and the politics of knowledge. Berkeley: University of California Press.

    Google Scholar 

  • Estes, N. A. M. (2014). Is it time for a new approach to implantable cardioverter-defibrillators? Journal of the American College of Cardiology, 63(22), 2395–2397.

    Article  Google Scholar 

  • Garland-Thomson, R. (2011). Misfits: A feminist materialist disability concept. Hypatia, A Journal of Feminist Philosophy, 26(3), 591–609.

    Article  Google Scholar 

  • Giudici, M. C., et al. (2010). Sub-mammary pacemakers and ICDs in women: Long-term follow-up and patient satisfaction. Pacing in Clinical Electrophysiology, 33(11), 1373–1375.

    Article  Google Scholar 

  • Giudici, M. C., et al. (2013). Sub-mammary device implantation in women: A step-by-step approach. Journal of Cardiovascular Electrophysiology, 24(4), 476–479.

    Article  Google Scholar 

  • Huberty, D. (2016). Wired4life. My Journey to Becoming Wired. River Falls: CreateSpace Independent Publishing Platform. Updated version 6/2016.

    Google Scholar 

  • Jeffrey, K. (2001). Machines in our hearts: The cardiac pacemaker, the implantable defibrillator, and American health care. Baltimore/London: The Johns Hopkins University.

    Google Scholar 

  • Kimman, G. P. (2014). Goede uitleg van essentieel belang. STIN Journaal, 3, 22–23.

    Google Scholar 

  • Lie, M., & Lykke, N. (Eds.). (2017). Assisted reproduction across Borders: Feminist perspectives on normalizations, disruptions and transmissions. New York and London: Routledge.

    Google Scholar 

  • McCall, L. (2005). The complexity of intersectionality. Journal of Women in Culture and Society. http://www.journals.uchicago.edu/doi/pdf/10.1086/426800. Accessed 8 Apr 2017.

  • McRuer, R. (2006). Crip theory: Cultural Signs of Queerness and Disability. New York: New York University Press.

    Google Scholar 

  • Medtronic, (2017). Getting a Pacemaker Implanted. http://www.medtronic.com/us-en/patients/treatments-therapies/pacemakers/getting.html. Accessed 5 Jan 2017.

  • Mol, F., & Sterks, G. (2014). Relativeren is een schone zaak. STIN Journaal, 2, 27.

    Google Scholar 

  • Moser, I. (2000). Against normalization: Subverting norms of ability and disability. Science as Culture, 9(2), 201–240.

    Article  Google Scholar 

  • Nederlandse Hartstichting. (2017). Hart-en vaatziekten in Nederland in 2017. Cijfers over leeftijd, risicofactoren, ziekte en sterfte.

    Google Scholar 

  • Peterson, P. N., et al. (2009). Gender differences in procedure-related advice events in patients receiving implantable cardioverter-defibrillator therapy. Circulation, 119, 1078–1084.

    Article  Google Scholar 

  • Pollock, A. (2008). The internal cardiac defibrillator. In S. Turkle (Ed.), The inner history of devices (pp. 98–110). Cambridge, MA: MIT Press.

    Google Scholar 

  • Rajappan, K. (2009). Permanent pacemaker implantation technique: Part I. Heart, 95, 259–264.

    Article  Google Scholar 

  • Rapp, R. (1988). Moral pioneers: Women, men, and fetuses on a frontier of reproductive technologies. Women & Health, 13(1–2), 101–117.

    Article  Google Scholar 

  • Redberg, R. F. (2007). Disparities in use of implantable cardioverter-defibrillators. Moving beyond process measures to outcomes data. Journal of the American Medical Association, 298(3), 1564–1569.

    Google Scholar 

  • Santangeli, P. (2010). Gender differences in clinical outcomes and primary prevention in defibrillator benefit in patients with severe left ventricular dysfunction: A systematic review and meta-analysis. Heart Rhythm, 7(7), 876–882.

    Article  Google Scholar 

  • Savastano, S., et al. (2016). Sub-mammary device implantation. Good long-term performance and better patients’ satisfaction. A single-center study. International Journal of Cardiology, 221, 820–826.

    Article  Google Scholar 

  • Siebers, T. (2008). Disability and the theory of complex embodiment – For identity politics in a new register. In T. Siebers (Ed.), Disability theory (pp. 1–34). Ann Arbor: The University of Chicago Press.

    Chapter  Google Scholar 

  • Slatman, J., Halsema, A., & Meershoek, A. (2016). Responding to scars after breast surgery. Qualitative Health Research, 26(12), 1614–1626.

    Article  Google Scholar 

  • Split, R. (2019). De STIN gaat door. https://www.stin.nl. Accessed 7 Mar 2019.

  • Starrenburg, A. H., et al. (2014). Gender differences in psychological distress and quality of life in patients with an ICD 1-year postimplant. Pacing and Clinical Electrophysiology, 37(7), 843–852.

    Article  Google Scholar 

  • Sulik, G. A. (2009). Managing biomedical uncertainty: The technoscientific illness identity. Sociology of Health & Illness, 31(7), 1059–1076.

    Article  Google Scholar 

  • Taborsky M., & Krautzner, J. (2014). Summary of the 2013 ESC guidelines on cardia pacing and cardia resynchronization. Cor et Vasa, E57–E74.

    Google Scholar 

  • Tracey, M., et al. (2012). ACCF/AHA/HRS focused update incorporated in the ACCF/AHA/HRS 2008 guidelines for device-based therapy of cardia rhythm abnormalities. Journal of the American College of Cardiology, 61(3), e6–e75.

    Article  Google Scholar 

  • Vasquez, L. D., et al. (2008). Age-specific differences in women with implantable cardioverter defibrillators: An international multi-center study. Pace, 31(12), 1528–1534.

    Article  Google Scholar 

  • Walker, J., et al. (2004). Women and the implantable cardioverter defibrillator: A lifespan perspective on key psychosocial issues. Clinical Cardiology, 27, 543–546.

    Article  Google Scholar 

  • Welsenes, G. H., et al. (2011). Improvements in 25 years of implantable cardioverter defibrillator therapy. Netherlands Heart Journal, 19(1), 24–30.

    Article  Google Scholar 

  • Williams, J. L., & Stevenson, R. T. (2017). Complications of pacemaker implantation. In A. Roka (Ed.), Current issues and recent advances in pacemaker therapy. Chapter 6. http://www.intechopen.com/books/current-issues-and-recent-advances-in-pacemaker-therapy. Accessed 2 Feb 2018.

  • Witters, C. (2011). Bevolkingsonderzoek naar borstkanker bij ICD draagsters. ICD Journaal, 3, 10–12.

    Google Scholar 

  • Yarlagadda, C. (2014). Permanent pacemaker insertion technique. http://emedicine.medscape.com/article/1839735-technique2. Accessed 8 Apr 2017.

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  1. Department of Science, Technology and Policy Studies, University of Twente, Enschede, The Netherlands

    Nelly Oudshoorn

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Oudshoorn, N. (2020). ‘How Did You Get that Scar?’ Gender and the Appropriation of Visibly Marked Bodies. In: Resilient Cyborgs. Health, Technology and Society. Palgrave Macmillan, Singapore. https://doi.org/10.1007/978-981-15-2529-2_6

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  • DOI: https://doi.org/10.1007/978-981-15-2529-2_6

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