Abstract
Disability activists have sometimes claimed their disability has actually increased their well-being. Some even say they would reject a cure to keep these gains. Yet, these same activists often simultaneously propose improvements to the quality and accessibility of assistive technology. However, for any argument favoring assistive over curative technology (or vice versa) to work, there must be a coherent distinction between the two. This line is already vague and will become even less clear with the emergence of novel technologies. This paper asks and tries to answer the question: what is it about the paradigmatic examples of curative and assistive technologies that make them paradigmatic and how can these defining features help us clarify the hard cases? This analysis will begin with an argument that, while the common views of this distinction adequately explain the paradigmatic cases, they fail to accurately pick out the relevant features of those technologies that make them paradigmatic and to provide adequate guidance for parsing the hard cases. Instead, it will be claimed that these categories of curative or assistive technologies are defined by the role the technologies play in establishing a person’s relational narrative identity as a member of one of two social groups: disabled people or non-disabled people.
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Notes
Specifically, see pages 75–76, 115–116, 119, and 143 of The Minority Body for references to the testimony of disabled people who would explicitly reject a cure for themselves and sometimes argue against a social policy of seeking cures for most disabilities generally.
See the National Association of the Deaf’s original position statement on CIs released in 1991 that argued: “There is now abundant scientific evidence that, as the deaf community has long contended, it comprises a linguistic and cultural minority. Many Americans, perhaps most, would agree that as a society we should not seek the scientific tools nor use them, if available, to change a child biologically so he or she will belong to the majority rather than the minority—even if we believe that this biological engineering might reduce the burdens the child will bear as a member of a minority.” http://audismfreeamerica.blogspot.com/2009/06/nads-1991-position-statement-on.html (Accessed August 17, 2017).
In response to this shift, see the National Association for the Deaf’s updated position statement on CI from 2000 that states: “Cochlear implants are not appropriate for all deaf and hard of hearing children and adults. Cochlear implantation is a technology that represents a tool to be used in some forms of communication, and not a cure for deafness…. The NAD recognizes the rights of parents to make informed choices for their deaf and hard of hearing children, respects their choice to use cochlear implants and all other assistive devices, and strongly supports the development of the whole child and of language and literacy.” https://www.nad.org/about-us/position-statements/position-statement-on-cochlear-implants/ (Accessed August 17, 2017).
Albarazi, Hannah. 2016. “Can Dwarfism Be Treated? BioMarin Pharmaceuicals Thinks So.” CBS SFBayArea. April 20, 2016 5:24 p.m. http://sanfrancisco.cbslocal.com/2016/04/20/can-dwarfism-be-treated-biomarin-pharmaceuticals-thinks-so/ (Accessed August 17, 2017).
See Little People of America’s “Genetic Biotechnology Research Position Statement” that warns: “LPA has never actively promoted medical research aimed at treating or curing dwarfism. While individual members have participated in research studies over the years, LPA has maintained that its organizational role is best understood as one of social support and advocacy…. As medical science moves forward, we hope researchers will be mindful of our above mentioned commitment to the value of dwarfism as it contributes to human biological, social, and cultural diversity.” http://www.lpaonline.org/genetic-biotechnology-research-position-statement (Accessed August 17, 2017).
This drug may be a curative technology that is not effective at providing a complete cure. Another example of an incomplete cure might be maintenance chemotherapy that slows the growth and spread of a patient’s incurable cancer. Below, cases of incomplete cure will be discussed in greater detail.
For another discussion about assistive technology that deploys the similar notion of “level of description,” please see: Wasserman, David and Stephen M. Campbell. “A More ‘Inclusive’ Approach to Enhancement and Disability.” In The Ethics of Ability and Enhancement. London: Palgrave Macmillan. (forthcoming).
According to this view, being incorporated (or not) seems like a necessary, but not sufficient condition for being considered curative or assistive. Of course, to be curative or assistive, a technology would also need to meet other criteria. Incorporation is merely being floated as the particular criterion that the curative/assistive distinction may rest upon.
It should be noted that, ultimately, Ladner is sharply critical of the term Assistive Technology as being both conceptually redundant and problematic in that it “has the ring of paternalism, a view that people with disabilities need lots of extra help, are dependent and are not capable human beings” (26).
This is true, of course, just so long as there are no counter indications also present. For example, Lady Gaga was not identified as disabled when she wheeled herself on stage in a wheelchair while wearing a mermaid tale costume during a 2011 performance in Australia. http://www.dailymail.co.uk/tvshowbiz/article-2014423/Lady-Gaga-slammed-disability-groups-performing-stage-wheelchair.html (Accessed August 17, 2017).
While the use of AT is probably sufficient for conferring the disability group identity, this paper deliberately leaves the matter of the ontology of disability as an open question. That is, it does not take a position about whether self-identifying as disabled and being identified by others as disabled is enough to actually be disabled. For a careful treatment of this question regarding the metaphysics of disability, see the first chapter of Barnes’ The Minority Body.
This is probably true of many kinds of assistive technology. For instance, an amputee may not want to think of themselves as being disabled and always wear long pants to hide their prosthetic leg from view because they don’t self-identify in this way. Regardless, prosthetic legs remain assistive technology because of how they are associated with the master narrative of disability and confer the disability identity. In fact, it is this disability identity conferring property of the technology that motivates this sort of behavior.
https://www.razor.com/about-razor/corporate-history/ (Accessed August 17, 2017).
It’s a good thing this is the case because many master narratives about oppressed groups, including disabled people, are deeply damaging to those groups. In fact, much of Lindemann’s book is devoted to describing how these damaging master narratives can be reformed with what she calls counterstories.
Whether or not a pleated, plaid skirt is masculine formal wear or a pudding made of a sheep’s heart, liver, and lungs and encased in its stomach is a culinary delicacy depends on one’s historical and cultural context, for instance.
Perhaps it can be thought of as a partial cure for achondroplasia in as far as it partially removes the disability identity from the recipient by distancing them from the master narrative of dwarfism that includes disproportionately short limbs.
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Acknowledgements
Funding for this research was provided by the National Science Foundation (Grant No. #EEC-1028725). The author would also like to thank his research assistant, Albert Dumaran, as well those who provided feedback on earlier drafts, including: Hilde Lindemann, David Wasserman, Sean Aas, Stephen M. Campbell, members of the “Ethics Thrust” of the Center for Sensorimotor Neural Engineering (especially Sara Goering and Eran Klein), members of the University of California San Diego Transdisciplinary Disability Studies Reading Group (especially Cassandra Hartblay, Brian Goldfarb, and Jason Dorwart), and participants in the “Spectrums of (Dis)ability” seminar at the 2017 American Comparative Literature Association Annual Meeting.
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Stramondo, J.A. The Distinction Between Curative and Assistive Technology. Sci Eng Ethics 25, 1125–1145 (2019). https://doi.org/10.1007/s11948-018-0058-9
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DOI: https://doi.org/10.1007/s11948-018-0058-9