The Minority Body: A Theory of Disability (2016) by Elizabeth Barnes (2016) provides an analysis of the relationship between disability and well-being (p. 9). Barnes' argument is clear: "To be disabled is to have a minority body, but not to have a broken or defective body" (p. 6). To validate this thesis, Barnes encourages different ways of coming to know—and making meaning of—disability (Titchkosky, 2011). For the purposes of this review, I will focus on four ways that Barnes presents different meanings of disability through: (1) the question of being, (2) embodiment, (3) testimony, and (4) pride.

The Being of Disability

"I want to figure out what disability is" says Barnes (p. 10). This is a complex conundrum—but Barnes does not shy away from it. Barnes goes through objectivist, naturalistic models of disability, as well as the social model of disability. Objective views or medical models of disability typically characterize disability as a "personal tragedy" (p. 28; Oliver and Barnes, 2012). Social models of disability suggest that disability is a result of ableism and inaccessible environments. Barnes makes an important claim that we cannot forge a dichotomy between the medical and social models of disability, and I agree with this. For instance,

Proponents of the social model often set up a dichotomy—a choice between social and so-called 'medical' models of disability. The proposed dichotomy suggests that either we attribute all the bad effects of disability to social prejudice, or we accept an account of disability according to which disability is an individual matter (a 'personal tragedy') (Barnes, 2016, p. 28).

However, as Barnes later notes, both of these models assume that disability is a bad or unwanted difference. Here, Barnes arrives at the distinction between disability as "bad-difference" or "mere-difference". The mere-difference view of disability maintains that disability is neutral with respect to well-being (Barnes, 2016, pp. 54-55). But, mere-difference does not mean no difference. On the contrary, Barnes delves deeper in the "mere-difference" view of disability, developing her own articulation—The Value-Neutral Model (Barnes, 2016, p. 88).

Barnes' Value-Neutral Model suggests that disability is neutral. But don't be fooled—neutrality is incredibly complex. Barnes shows that there are good and bad experiences of disability, which we should not immediately assume lead to a decrease in well-being. Barnes shows that the neutrality of disability is a key way of shifting the meaning of disability away from simply (and only) being classified as bad-difference. Barnes shows how the mere-difference view of disability demonstrates how disability might have good or bad effects, depending on circumstances. Neutrality, then, is always in relation to the world around us. Disability is always in relation to the world around us. The being of disability is replete with beautiful complexity. But as Barnes demonstrates, the perception of disability as bad-difference is persistent.

Between the Individual and Collective

Barnes showcases the relationship between individual and collective (social) life (i.e. Goodley, 2011). Barnes situates disability directly within the sociocultural realm, and pays tribute to the meanings of embodiment, which I understand to be related to the social construction of bodies. For example, citing disability studies scholar Rosemarie Garland-Thomson (1997), Barnes notes:

…to say that disability is socially constructed is to say that 'disability is the attribution of corporeal deviance—not…a property of bodies [but] a product of cultural rules about what bodies should be or do'. But this needn't be how we understand social construction. Being disabled is not merely a matter of what your body is like. Disability could be a socially constructed property of bodies (Thomson, 1997, p. 7 as cited in Barnes, 2016, p. 37).

Barnes (2016), together with Garland-Thomson (1997), show how disability is culturally informed—the reactions of, orientations to, and assumptions about disability are rooted in culture. In doing so, Barnes emphasizes the being of disability, which includes the sociocultural responses, reactions, and perceptions of disability.

Bearing Witness to Testimony

Barnes' chapter on testimony is especially powerful. Barnes demonstrates that the assumption of disability as only bad-difference persists amidst the positive testimonies of disabled people (as cited in Gosse, 2017, p. 1095). To illustrate, Barnes' discussion of Miranda Fricker's (2007) work on testimonial injustice (as cited in Barnes, 2016, p. 135) shows how disabled people's positive experiences are often disregarded, based on the assumption that non-disabled people simply "know" that to be disabled is negative.

When a disabled person says that they are happy—not happy in spite of being disabled, just happy—it doesn't match our [non-disabled] view of what disabled lives are like…In short, we don't take them at their word, because of our stereotypes about what disability and disabled people are like (Barnes, 2016, p. 139).

The question of "what disability or what disabled people are like" is significant. Barnes shows how the notion of "being like…" is a way to explain disability—and ironically, disability is explained through non-disability. For instance, especially in narratives of "overcoming" disability, which Barnes also discusses, disability is overcome or forgotten to become "just like" those who are not disabled. By the same token, non-disabled people tend to assume what disability is and is like. Consider, for example, Rod Michalko, who discusses the difference that disability makes:

The valued notion of the legitimacy of differential embodiment is a conception of disability that is neither ubiquitous in contemporary society nor one that is generally understood, let alone valued. Instead, the only option to the removal of the difference that disability makes and to privileging personhood over disability is to conceive of disability as the excess that 'takes over someone's life' and prevents someone from being 'like everyone else' and as someone who merely 'happens to be disabled' (Michalko, 2009, p. 69).

Michalko demonstrates that the notion of "being like everyone else" is a means of dismissing not only disability, but the difference that disability makes (Michalko, 2002; Michalko, 2009). And as Barnes suggests, the dismissal of disability—or more specifically, the being of disability—is testimonial injustice (Barnes 2016; Fricker, 2007).

Fricker's (2007) and Barnes' (2016) discussions of testimonial injustice make me think about the question of bearing witness to testimony—or in other words, the relationship between testimony (what is experienced) and responses to testimony (what is witnessed, or what is perceived). Razack (2004) and Agamben (1999), for instance, discuss what it means to bear witness, and what the risks or implications of this might be. As non-disabled people perceive the positive testimonies of disabled people, Barnes writes, "…we tend to dismiss the testimony of disabled people about what it's like to be disabled when that testimony conflicts with our assumptions and expectations about disability" (p. 142). Such dismissal is an oppressive way of bearing witness, or perceiving, testimony. Therefore, Barnes introduces us to a powerful testimony of testimony, which calls for re-consideration of the assumptions of disability, and urges us to bear witness to disability in drastically different ways.

Pride: An epistemic resistance

In her article "Choosing the Margin as a Space of Radical Openness" (1989), bell hooks writes about counter-language. hooks suggests that language offers a way of entering "that space of refusal, where one can say no to the coloniser, no to the downpressor [which] is located on the margins" (hooks, 1989, p. 21). Related to counter-language, Barnes addresses the epistemic promise of disability pride—that is, disability pride can change what we know, and I would also suggest how we know what we know. Perhaps, then, we might understand disability pride as a form of epistemic resistance (a resistance against what we know, or what we think we know), similar to the promise of counter-language that bell hooks (1989) describes. To illustrate, "Disability pride doesn't merely offer examples of disabled people who are flourishing. Disability pride offers the radical suggestion that our entire way of thinking about disability is confused" (Barnes, 2016, p. 185). As Meghan Gosse's (2017) review also notes, Barnes addresses how disability pride is a crucial way of resisting taken-for-granted assumptions about disability (p. 1095). As I understand it, disability pride has incredible power and potential—just as The Minority Body does.

Conclusion

Maurice Merleau-Ponty tells us that nothing in the world is without meaning (2005[1962]). The body has meaning; disability has meaning; difference has meaning; neutrality has meaning; testimony has meaning; pride has meaning. Barnes urges us to consider how we know what we know, and how we can change what we know. As stated in the introduction, "Words are hard to replace. I think it's easier to shift meanings" (Barnes, 2016, p. 6). While shifting meaning is no easy feat, this is exactly what Barnes does—shifts meanings of disability, difference, testimony, embodiment, pride, and knowledge.

References

  • Agamben, G. (1999). The Witness. Remnants of Auschwitz: The Witness and the Archive. (D. Heller-Roazen, Trans.). Zone Books. Original work published 1998.
  • Barnes, E. (2016). The Minority Body: A Theory of Disability. Oxford University Press. https://doi.org/10.1093/acprof:oso/9780198732587.001.0001
  • Fricker, M. (2007). Epistemic Injustice. Oxford University Press. https://doi.org/10.1093/acprof:oso/9780198237907.001.0001
  • Goodley, D. (2011). Disability Studies: An interdisciplinary introduction. SAGE Publications.
  • Gosse, M. (2017). Book Review of: Elizabeth Barnes, The Minority Body: A Theory of Disability. Journal of Evaluation in Clinical Practice, 23, 1094-1095. https://doi.org/10.1111/jep.12803
  • hooks, b. (1989). Choosing the Margin as a Space of Radical Openness. Framework: The Journal of Cinema and Media, 36, 15-23. Retrieved from: <https://www.jstor.org/stable/44111660>.
  • Merleau-Ponty, M. (1962). The Phenomenology of Perception. (Donald A. Landes, Tans.). Editions Gallimard, Routledge.
  • Michalko, R. (2002). The Difference that Disability Makes. Temple University Press.
  • Michalko, R. (2009). The excessive appearance of disability. International Journal of Qualitative Studies in Education, 22(1), 65-74. https://doi.org/10.1080/09518390802581885
  • Oliver, M. and Barnes, C. (2012). The New Politics of Disablement. Palgrave Macmillan.
  • Razack, S. (2004). Dark Threats and White Knights: The Somalia Affair, Peacekeeping, and the New Imperialism. University of Toronto Press.
  • Razack, S. (2004). Those Who 'Witness the Evil': Peacekeeping as Trauma in Dark Threats and White Knights: The Somalia Affair, Peacekeeping, and the New Imperialism (pp.15-50). University of Toronto Press. Retrieved from: <https://pepper-tmp.oise.utoronto.ca/data/note/27050/RazackDark_threats_and_whi%2BPages%3D%5B16-63%5D%2BDate%3D%5B2019-09-12%5D.pdf>.
  • Thomson, Rosemarie Garland. (1997). Extraordinary Bodies: Figuring Physical Disabilities in American Culture and Literature. Columbia University Press.
  • Titchkosky, T. (2011). Book Review of: Dan Goodley, Disability Studies: An Interdisciplinary Introduction. Canadian Review of Sociology, 48(4), 454-457. https://doi.org/10.1111/j.1755-618X.2011.01272.x
  • Titchkosky, T. (2011). The Question of Access: Disability, Space, Meaning. University of Toronto Press.
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