“I’d rather be dead than disabled”—the ableist conflation and the meanings of disability

ABSTRACT

Despite being assailed for decades by disability activists and disability studies scholars spanning the humanities and social sciences, the medical model of disability—which conceptualizes disability as an individual tragedy or misfortune due to genetic or environmental insult—still today structures many cases of patient–practitioner communication. Synthesizing and recasting work done across critical disability studies and philosophy of disability, I argue that the reason the medical model of disability remains so gallingly entrenched is due to what I call the “ableist conflation” of disability with pain and suffering. In an effort to better equip healthcare practitioners and those invested in health communication to challenge disability stigma, discrimination, and oppression, I lay out the logic of the ableist conflation and interrogate examples of its use. I argue that insofar as the semiosis of pain and suffering is structured by the lived experience of unwelcome bodily transition or variation, experiences of pain inform the ableist conflation by preemptively tying such variability and its attendant disequilibrium to disability. I conclude by discussing how philosophy of disability and critical disability studies might better inform health communication concerning disability, offering a number of conceptual distinctions toward that end.

KEYWORDS:

• Philosophy of disability
• health communication
• medical humanities
• ableism
• pain
• Martin Heidegger

Acknowledgements

For feedback on previous versions of this paper, I am grateful to Carmen C. Gomen, Nicole Piemonte, and Jennifer Scuro. Various sections of this paper have been presented at the Society for Disability Studies, the Bioethics: Preparing for the Unknown conference at Western Michigan University, the Undoing Health: States of Body & Mind interdisciplinary graduate conference at Indiana University, and the Emory Philosophy Forum. I am grateful to each audience for insightful and constructive feedback.

ORCID

Joel Michael Reynolds http://orcid.org/0000-0002-9640-5082

Notes

1. Aeschylus, The Complete Aeschylus, 2 vols. (Oxford: Oxford University Press, 2011), 1: 351, verses 750–51.

2. Anita Silvers, “Reconciling Equality to Difference: Caring (F)or Justice for People with Disabilities,” Hypatia 10, no. 1 (1995): 37.

3. For example, Elizabeth Spelman speaks of the explicit intersection of “somatophobia” and misogyny in “Woman as Body: Ancient and Contemporary Views,” Feminist Studies 8, no. 1 (1982): 109–31. I am thankful to Jennifer Scuro for this point.

4. S. Kay Toombs, The Meaning of Illness: A Phenomenological Account of the Different Perspectives of Physician and Patient (Boston: Kluwer Academic, 1992); “The Lived Experience of Disability,” Human Studies 18, no. 1 (1995): 9–23.

5. Joel Michael Reynolds, “The Ableism of Quality of Life Judgments in Disorders of Consciousness: Who Bears Epistemic Responsibility?” American Journal of Bioethics Neuroscience 7, no. 1 (2015): 59–61.

6. Diane L. Smith, “Disparities in Patient–Physician Communication for Persons with a Disability from the 2006 Medical Expenditure Panel Survey (MEPS),” Disability and Health Journal 2, no. 4 (2009): 206–15.

7. In a forthcoming book-length work, I offer a phenomenological account of the ableist conflation's origin and its role across the history of philosophy.

8. There are numerous definitions of “ableism.” For a helpful analysis and discussion of ableism more broadly, see Fiona Kumari Campbell, Contours of Ableism: The Production of Disability and Abledness (New York: Palgrave Macmillan, 2009).

9. Ashley Duggan, Ylisabyths Bradshaw, and Wayne Altman, “How Do I Ask About Your Disability? An Examination of Interpersonal Communication Processes between Medical Students and Patients with Disabilities,” Journal of Health Communication 15, no. 3 (2010): 334–50; Li Iezzoni, “Make No Assumptions: Communication Between Persons with Disabilities and Clinicians,” Assistive Technology 18, no. 2 (2006): 212–9.

10. Heather E. Canary, “Negotiating Dis/Ability in Families: Constructions and Contradictions,” Journal of Applied Communication Research 36, no. 4 (2008): 437–58.

11. Tania De Bortoli et al., “Speech-Language Pathologists’ Perceptions of Implementing Communication Intervention with Students with Multiple and Severe Disabilities,” AAC: Augmentative & Alternative Communication 30, no. 1 (2014): 55–70.

12. David S. Martins, “Compliance Rhetoric and the Impoverishment of Context,” Communication Theory 15, no. 1 (2005): 59–77. There are well-documented disagreements over the language surrounding disability, but I will here follow person-first language (people with disabilities).

13. Eva Feder Kittay and Licia Carlson, Cognitive Disability and Its Challenge to Moral Philosophy (Chichester, U.K.: Wiley-Blackwell, 2010).

14. Jackie Leach Scully, Disability Bioethics: Moral Bodies, Moral Difference (Lanham, MD: Rowman & Littlefield, 2008), 3.

15. Elizabeth Barnes, The Minority Body (Oxford: Oxford University Press, 2016).

16. Tobin Siebers, “Disability in Theory: From Social Constructionism to the New Realism of the Body,” American Literary History 13, no. 4 (2001): 737–54.

17. Karl Nunkoosing and Mark Haydon-Laurelut, “Intellectual Disability Trouble: Foucault and Goffman on ‘Challenging Behaviour,’” in Disability and Social Theory: New Developments and Directions, ed. Dan Goodley, Bill Hughes, and Lennard Davis (New York: Palgrave Macmillan, 2012), 195–211.

18. Stacy Clifford Simplican, The Capacity Contract: Intellectual Disability and the Question of Citizenship (Minneapolis: University of Minnesota Press, 2015).

19. Lennard J. Davis, Enabling Acts: The Hidden Story of How the Americans with Disabilities Act Gave the Largest US Minority Its Rights (Boston: Beacon, 2015).

20. Joseph P. Shapiro, No Pity: People with Disabilities Forging a New Civil Rights Movement (New York: Three Rivers Press, 1993).

21. Ellen Samuels, “My Body, My Closet: Invisible Disability and the Limits of Coming Out,” in The Disability Studies Reader, 4th ed., ed. Lennard J. Davis (London: Routledge, 2013), 316–53.

22. Margaret Price, “The Bodymind Problem and the Possibilities of Pain,” Hypatia 30, no. 1 (2015): 268–84; Alyson Patsavas, “Recovering a Cripistemology of Pain: Leaky Bodies, Connective Tissue, and Feeling Discourse,” Journal of Literary & Cultural Disability Studies 8, no. 2 (2014): 203–18.

23. Michael Carl Gill, Already Doing It: Intellectual Disability and Sexual Agency (Minneapolis: University of Minnesota Press, 2015).

24. Shelley Tremain, Foucault and the Government of Disability (Ann Arbor: University of Michigan Press, 2005).

25. Joshua St. Pierre, “Distending Straight-Masculine Time: A Phenomenology of the Disabled Speaking Body,” Hypatia 30, no. 1 (2015): 49–65.

26. Beth Ferri, “A Dialogue We’ve yet to Have: Race and Disability Studies,” in The Myth of the Normal Curve, ed. Curt Dudley-Marling and Alex Gurn (New York: Peter Lang, 2010), 139–50.

27. Margaret Price, Mad at School: Rhetorics of Mental Disability and Academic Life (Ann Arbor: University of Michigan Press, 2011).

28. Beth A. Ferri and David J. Connor, “Talking (and Not Talking) About Race, Social Class and Dis/Ability: Working Margin to Margin,” Race Ethnicity and Education 17, no. 4 (2014): 471–93.

29. Gregor Wolbring, “Expanding Ableism: Taking Down the Ghettoization of Impact of Disability Studies Scholars,” Societies 2, no. 3 (2012): 75–83.

30. Jeffrey A. Brune and Daniel J. Wilson, Disability and Passing: Blurring the Lines of Identity (Philadelphia, PA: Temple University Press, 2013).

31. Douglas C. Baynton, “Disability and the Justification of Inequality in American History,” in The New Disability History: American Perspectives, ed. Paul K. Longmore and Lauri Umansky (New York: New York University Press, 2001), 33–57; Kim E. Nielsen, A Disability History of the United States (Boston: Beacon, 2012); Henri-Jacques Stiker, A History of Disability (Ann Arbor: University of Michigan Press, 1999).

32. Rosemarie Garland-Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature (New York: Columbia University Press, 1997).

33. Tremain, Foucault and the Government of Disability; Miranda Fricker, Epistemic Injustice: Power and the Ethics of Knowing (Oxford: Oxford University Press, 2007).

34. Duggan, Bradshaw, and Altman, “How Do I Ask About Your Disability?” 335.

35. “The associated authors and medical education program define disability as a physical impairment that substantially limits one or more major life activities, and where mobility assistance for the disability includes a wheelchair, crutches, or an assistance dog.” Ibid.

36. Steven Pinker, “The Moral Imperative for Bioethics,” Boston Globe, 1 August 2015 (emphasis added), https://www.bostonglobe.com/opinion/2015/07/31/the-moral-imperative-for-bioethics/JmEkoyzlTAu9oQV76JrK9N/story.html. This article was then reported at multiple bioethics news outlets, including BioEdge.

37. Humanity+, “Transhumanist Faq,” http://humanityplus.org/philosophy/transhumanist-faq/. On the relation of trans- and posthumanism to disability and disability studies, see Melinda Hall, The Bioethics of Enhancement: Transhumanism, Disability, and Biopolitics (Lanham, MD: Rowman & Littlefield, 2016); Alison Kafer, Feminist, Queer, Crip (Bloomington: Indiana University Press, 2013); Scott DeShong, “On (Post)Human (Dis)Ability,” Subjectivity: International Journal of Critical Psychology 5, no. 3 (2012): 265–75.

38. My thanks to Jennifer Scuro for this insight.

39. Pinker, “The Moral Imperative for Bioethics,” (emphasis added).

40. At multiple points in this piece, I speak of “pain and suffering,” and I do so only because arguments to distinguish between the two (and the multiple forms of each) would require an essay (or more) of their own. I ask that the reader thus take this phrase with a grain of analytic salt.

41. Marilee Strong, A Bright Red Scream: Self-Mutilation and the Language of Pain (New York: Viking, 1998); Romana Byrne, Aesthetic Sexuality: A Literary History of Sadomasochism (New York: Bloomsbury, 2013).

42. Eva Feder Kittay, Love's Labor: Essays on Women, Equality, and Dependency (London: Routledge, 1999); Silvers, “Reconciling Equality to Difference”; Rosemarie Garland-Thomson, “Staring Back: Self-Representations of Disabled Performance Artists,” American Quarterly 52, no. 2 (2000): 334–8.

43. The question of what constitutes a “harm” in relation to given cases of disability is itself a major point of debate in philosophy of disability. Barnes's The Minority Body provides a helpful overview. See also Joel Michael Reynolds, “Toward a Critical Theory of Harm: Ableism, Normativity, and Transability (BIID),” APA Newsletter on Philosophy and Medicine 16, no. 1 (2016): 37–45.

44. Kafer, Feminist, Queer, Crip; Mark Sherry, Disability Hate Crimes: Does Anyone Really Hate Disabled People? (Burlington, VT: Ashgate, 2010). Inspiration porn refers to instances in which people with disabilities are viewed as “inspirational” only by virtue of overcoming their disability.

45. Adam Milani, “Better Off Dead Than Disabled? Should Courts Recognize a ‘Wrongful Living’ Cause of Action When Doctors Fail to Honor Patients’ Advance Directives?” Washington and Lee Law Review 54, no. 1 (1997): 149–228.

46. Recall that disability is left underdefined in the broadest formulation of the ableist conflation. It is not immediately clear whether needing glasses or intermittent depression constitutes disability, while few, if any, would argue that paraplegia or cystic fibrosis does not. This ambiguity is precisely part of the issue(s) at stake here.

47. Paul K. Longmore, Telethons: Spectacle, Disability, and the Business of Charity (Oxford: Oxford University Press, 2015).

48. See note 43 above.

49. Buck V. Bell (Carrie Buck V. James Hendren Bell, Superintendent of State Colony for Epileptics and Feeble Minded), Oliver Wendell Holmes Jr. (1927).

50. Rosemarie Garland-Thomson, “Human Biodiversity Conservation: A Consensual Ethical Principle,” The American Journal of Bioethics 15, no. 6 (2015): 13–15.

51. Fyodor Dostoyevsky, The Brothers Karamazov: A Novel in Four Parts with Epilogue, trans. Richard Pevear and Larissa Volokhonsky (New York: Farrar, Straus and Giroux, 2002), 238.

52. International Association for the Study of Pain, “IASP Taxonomy,” http://www.iasp-pain.org/Taxonomy. The concept of pain has a long and complex history I cannot address here; there are multiple, large literatures that discuss it ranging from palliative care to internecine debates in philosophy of mind. See Roselyne Rey, The History of Pain (Cambridge, MA: Harvard University Press, 1995); Keith Wailoo, Pain: A Political History (Baltimore, MD: Johns Hopkins University Press, 2014).

53. See Serge Marchand, The Phenomenon of Pain, International Association for the Study of Pain (Seattle, WA: IASP Press, 2012); Patrick D. Wall, Pain: The Science of Suffering (New York: Columbia University Press, 2000); Ronald Melzack and Patrick D. Wall, The Challenge of Pain, rev. ed. (New York: Penguin, 1988); Murat Aydede, Pain: New Essays on Its Nature and the Methodology of Its Study (Cambridge, MA: MIT Press, 2005); Colin Klein, What the Body Commands: The Imperative Theory of Pain (Cambridge, MA: MIT Press, 2015).

54. David Cecil Sinclair, Cutaneous Sensation (Oxford: Oxford University Press, 1967), 7–8. See Joel Michael Reynolds, “Feeding Upon Death: Pain, Possibility, and Transformation in S. Kay Toombs and Kafka's the Vulture,” Jahrbuch Literatur und Medizin 6 (2014).

55. Eugen Baer, Medical Semiotics (Lanham, MD: University Press of America, 1988); John F. Burnum, “Medical Diagnosis through Semiotics: Giving Meaning to the Sign,” Annals of Internal Medicine 119, no. 9 (1993): 939–43.

56. See “semiosis, n.”, “semiotic, adj. and n.”, and “sign, n.”—whose oldest etymological roots trace back to the ancient Greek σῆμα, sign (see seme n.), and σημεῖον, sign—in OED Online: Oxford University Press, 2014), http://www.oed.com/.

57. Charles S. Peirce, The Philosophy of Peirce: Selected Writings (London: K. Paul, Trench, 1940), 99.

58. This is true as well as for Frege Gottlob, “Sense and Reference,” The Philosophical Review 57, no. 3 (1948): 209–30.

59. Martin Heidegger notes that while the term “sign” can cover many different kinds of signs, the sign can also be “formalized as a universal kind of relation” (Being and Time, trans. Joan Stambaugh, rev. Dennis J. Schmidt [Albany: State University of New York Press, 2010], 76). On the role of formal indication for Heidegger, see Ryan Streeter, “Heidegger’s Formal Indication: A Question of Method in Being and Time,” Man and World 30, no. 4 (1997): 413–30.

60. As Andrew J. Mitchell writes, “Pain indeed separates and rends us, but only in order to grant relation. For this reason Heidegger will speak of a ‘contrary essence’ of pain. …  Pain is a wound of relation and insofar as the tear of pain joins us to the world, this pain is always a shared pain” (“Entering the World of Pain: Heidegger,” Telos 2010, no. 150 [2010]: 86).

61. Claire Sibonney, “Americans Would Rather Be Dead Than Disabled: Poll,” Reuters, 11 July 2008, http://www.reuters.com/article/us-disability-idUSN7B32025920080711.

62. Lennard J. Davis, Enforcing Normalcy: Disability, Deafness, and the Body (New York: Verso, 1995).

63. This assumes, of course, that pain is narrowly interpreted as solely negative. Insofar as negative experiences are not seen as part of a dialectic with positive experiences, they will be considered intrinsically negative—a type of experience one wants to avoid in principle. As is well documented across various domains of pain research, there are a number of practices where people actively seek out pain and in which pain is often described in positive terms. However, there is significant disagreement whether this means that pain can in and of itself be experienced positively or if second-order intentions and habits instead serve to alter or even mask the fundamental negativity of such experience. This is further troubled by the way in which pain is simultaneously singularizing and universalizing. Only “I” have my pain, a pain that “we” all presumably can experience. On the latter point, see David M. Peña-Guzmán, “Pathetic Normativity: Merleau Ponty and Canguilhem's Theory of Norms,” Chiasmi International 15 (2013): 361–84.

64. Susan Wendell, “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities,” Hypatia 16, no. 4 (2001): 17–33. See also Donna Reeve, “Psycho-Emotional Disablism and Internalised Oppression,” in Disabling Barriers–Enabling Environments, 3rd ed., ed. John Swain et al. (Thousand Oaks, CA: Sage, 2014), 92–98.

65. John T. Lysaker and Paul H. Lysaker, Schizophrenia and the Fate of the Self (Oxford: Oxford University Press, 2008). I put “mental illnesses”’ in quotation marks to signal the fact that this is a problematic category for those aligned with the Neurodiversity and Mad Pride movements.

66. This list is, of course, a heuristic and an incomplete one at that. In various ways and with varying terminology, these distinctions have been addressed by disability studies scholars and activists for years. See Lennard J. Davis, The Disability Studies Reader, 4th ed. (London: Routledge, 2013).

67. Or take dyslexia, stuttering, or any number of other forms of disability whose “visibility” is liminal, depending upon context.

68. Joel Michael Reynolds, “Merleau-Ponty's Aveugle and the Phenomenology of Non-Normate Embodiment,” Chiasmi International 18 (Forthcoming); Georgina Kleege, Sight Unseen (New Haven, CT: Yale University Press, 1999); John Hull, On Sight and Insight: A Journey into the World of Blindness (London: Oneworld, 1997). As Hull makes clear, whether one experiences noncongenital blindness as a lack is largely in relation to the extent to which one successfully transitions into that new form of experience.

69. Note that this formulation can be reversed. Among other reasons, this is why there is such a need for further empirical and critical research on the relations between well-being, bodily difference, and bodily transitions.

70. Robert McRuer, Crip Theory: Cultural Signs of Queerness and Disability (New York: New York University Press, 2006).

71. Rita Charon, Narrative Medicine: Honoring the Stories of Illness (Oxford: Oxford University Press, 2006), 203.

72. Lennard J. Davis, Enabling Acts.