Abstract
This article presents an analysis of the concept of disability in Amartya Sen’s capabilities and functionings approach in the context of Information and Communication Technologies (ICT). Following a critical review of the concept of disability—from its traditional interpretation as an essentially medical concept to its later interpretation as a socially constructed category—we will introduce the concept of functional diversity. The importance of human diversity in the capabilities and functionings approach calls for incorporating this concept into the analysis of well-being and quality of life in persons with disability—aspects in which ICT currently plays a major role. When one contemplates these technologies, it becomes clear that factors such as accessibility, design for all, and user participation in development and implementation processes are key strategies in promoting equal rights and equal opportunity for persons with disability in the different environments of the information society.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
Notes
Sen (1999, pp. 29–33) explains that, if everyone were exactly the same, equality in any given sphere (income, for example) would be consistent with equality in other spheres (health, well-being, or happiness, for example). One upshot of human diversity is that equality in a particular sphere usually goes hand in hand with inequality in various other spheres. Inequality in some spheres is justified by the fact that there is equality in some other sphere that, from an ethical point of view, is considered more basic. The equality considered to be ‘more basic’ would be put forward as a logical rationalization for the inequalities present in the other spheres. See also, Sen (1979, pp. 202, 215, 219).
If we compare, for example, the situation of someone who is starving with that of someone who is fasting, from the standpoint of functionings (perspective 1), there is no difference—both persons are in the same state of food deprivation. When we compare these two states from the standpoint of freedom (perspective 2), however, then the fundamental difference surfaces: the first person has no choice but to be starving while the second person has freely chosen to be fasting, and the obvious result is that the first person is at a disadvantage with respect to the second person.
In the same example, as a functioning, ‘fasting’ does not mean simply ‘being hungry’ but rather ‘choosing to be hungry and doing it’ when one has other possible alternatives. Likewise, choosing to live a lifestyle (perspective 2) is not exactly the same as simply living that lifestyle (perspective 1) without considering how one arrived at that lifestyle; well-being hinges on how that came to be the person’s lifestyle (Sen 1999, p. 65). The difference between these two perspectives is clearly exemplified if one contemplates, on the one hand, the possible measure of well-being a person with disability can achieve through the intervention strategies of the medical model and, on the other hand, the personal autonomy and freedom of choice that are promoted through the emancipating practices of the independent living movement that are incorporated in the social model.
There is room for disagreement, obviously, as to what functionings are valuable. Instead of viewing this as a disadvantage, however, Sen believes that room for disagreement is something to be appreciated. This is because the capability approach does not attempt to provide a decisive, computer-programmable method; rather, it tries to reflect upon what functionings are part of the concept of ‘a good life’ in our culture and others and, in addition, to investigate what real freedom various groups of people have to achieve these valuable functionings (Putnam 2004).
The Convention is the twenty-first century’s first international treaty. In its 50 Articles, it assembles the principles that govern its application; the rights designed to protect and promote freedom, equality, and dignity for persons with disability, and the obligations of countries that adopt it, under which States are required to work toward establishing non-discrimination measures and policies such as adapting their legal codes to the Convention content.
According to the 2001 UNESCO report (2001, p. 3) on ethics in the information society: “Values affect the shape of technologies and thus, even when describing technical features of systems and devices, one needs to pay attention to values.”
In this sense, a major effort was made to address this issue at the World Conference on Science, convened by UNESCO and the International Council for Science (ICSU) and held in Budapest in June and July of 1999. The event closed with approval of the Declaration on Science and the Use of Scientific Knowledge. The objective of both the Conference and the Declaration was to articulate and reach a consensus on a new social contract for science. Of special importance to the subject we are addressing in this section is Article 42 of this Declaration, which states the need to resolve the difficulties that obstacles still present for the so-called “disadvantaged groups” and that hinder their full and effective participation in science and technology—and persons with disability are expressly included in these groups. In the same regard, the following Articles of the Declaration are also relevant: Article 25 “that there are barriers which have precluded the full participation of other groups, of both sexes, including disabled people […]”, and Article 34 “Special attention still needs to be given to marginalized groups. It is more than ever necessary to develop and expand science literacy in all cultures and all sectors of society […]”.
For a person who uses a wheelchair, for example, an ‘accessible’ elevator must have a door of sufficient width and buttons placed at an appropriate height so this person can use them; for a person who is visually impaired, the same elevator should have its buttons labeled in Braille and an auditory indicator for the different floors; for a person with intellectual disability, it should incorporate easy-to-understand, adapted pictograms; and, for a person with a hearing deficit, there would have to be illuminated signage, information in sign language, and so forth. If all of these elements are present, then it could be said that this elevator is accessible to the group of users that were taken into consideration.
Interest in the universal design concept expanded in the 1990s—above all, in the area of industrial design (Mace et al. 1991). Architect Ron Mace asked a group of designers and attorneys to develop a set of principles, known as the “seven principles of universal design,” to provide designers with a guide to design features that facilitate integration of the needs of as many users as possible (Center for Universal Design 1997).
With a view to taking into consideration the very diverse characteristics and expectations of different groups of people, the designing of products and services should be as participatory as possible so that people and groups with very different and perhaps contradictory perspectives may have an influence on all facets of the development of these products and services as well as the situations in which they are used (Googin and Newell 2003, p. 150; Clarkson et al. 2003).
In this regard, the Stockholm Declaration (2004) of the European Institute for Design and Disability (EIDD) states: “Design for All aims to enable all people to have equal opportunities to participate in every aspect of society. To achieve this, the built environment, everyday objects, services, culture and information, in short, everything that is designed and made by people to be used by people, must be accessible, convenient for everyone in society to use and responsive to evolving human diversity.”
It would definitely be appropriate to protect and guarantee such expression, given that any person’s current functional abilities will deteriorate over time, and having access to alternative ways of functioning will be of vital importance in those cases.
There is no reason why technological development and innovation should remain solely in the hands of manufacturers and companies’ R&D departments. Moreover, active user participation represents a source of innovation (von Hippel 1988). Some users, especially the so-called ‘lead users’ (von Hippel 2005), conceive of possible advancements and improvements in the design phase that can be implemented and tested.
References
Abberley, P. (1987). The concept of opression and the development of a social theory of disability. Disability, Handicap & Society, 2(1), 5–19.
Aguado, A. (1995). Historia de las deficiencias. Madrid: Escuela Libre Editorial.
Álvarez, J. F. (2001). Capacidades, libertades y desarrollo: Amartya Kumar Sen. In R. Maíz (Ed.), Teorías políticas contemporáneas. Valencia: Tirant lo blanch.
Aslaksen, F., Bergh, S., Bringa, O., & Heggem, E. (1997). Universal design. Planning and design for all. The Norwegian State Council on Disability. Web available: http://home.online.no/~bringa/universal.htm.
Barnes, C. (1991). Disabled people in britain and discrimination. London: C. Hurst & Co.
Barnes, C., & Mercer, G. (Eds.). (1996). Exploring the divide. Illnes and disability. Leeds: The Disability Press.
Barton, L. (Ed.). (1996). Disability and society: Emerging issues and insights. London: Longman.
Brisenden, S. (1986). Independent living and the medical model of disability. Disability, Handicap & Society, 1(2), 173–178.
Cabrera, L. (2009). Nanotechnology: Changing the disability paradigm. International Journal of Disability, Community & Rehabilitation, 8(2). Web available: http://www.ijdcr.ca/VOL08_02/articles/cabrera.shtml.
Cadwallader, J. (2007). Suffering difference: Normalisation and power. Social Semiotics, 17(3), 375–393.
Castells, M. (1996). La era de la información: Economía, sociedad y cultura. Vol. I: La sociedad red. Madrid: Alianza Editorial.
Cejudo, R. (2007). Capacidad y libertad. Una aproximación a la teoría de Amartya Sen. Revista Internacional de Sociología, LXV(47), mayo-agosto. Web available: http://revintsociologia.revistas.csic.es/index.php/revintsociologia/article/view/50/50.
Centre for Universal Design (CUD). (1997). Principlies of universal design. North Carolina State University. Web available: http://www.design.ncsu.edu/cud/about_ud/udprinciplestext.htm.
Charlton, J. I. (1998). Nothing about us without us. Berkeley: University of California Press.
Clarkson, J., Coleman, R., Keates, S., & Lebbon, C. (Eds.). (2003). Inclusive design. Design for the whole population. London: Springer.
De Asís, R., Bariffi, F., & Palacios, A. (2007). Principios éticos y fundamentos jurídicos. In R. de Lorenzo & L. C. P. Bueno (Eds.), Tratado sobre Discapacidad. Cizur Menor: Aranzadi.
DeJong, G. (1979). The movement for independent living: Origins, ideology and implications for disability research. East Lansing: Michigan State University Press.
Dobransky, K., & Hargittai, E. (2006). The disability divide in internet access and use. Information, Communication & Society, 9(3), 313–334.
DPI-Europe. (2000b). The right to live and be different. Web available: http://www.johnnypops.demon.co.uk/bioethicsdeclaration/index.htm.
DPI-Europe (Disabled People’s Internatinonal-Europe). (2000a). Disabled people speak on the new genetics. DPI Europe position statement on bioethics and human rights. Web available: http://freespace.virgin.net/dpi.europe/downloads/bioethics-english.pdf.
Echeverría, J. (2002). Ciencia y valores. Barcelona: Destino.
Echeverría, J. (2006). Ética e ingeniería. Isegoría, 34, 289–294. Web available: http://isegoria.revistas.csic.es/index.php/isegoria/article/view/16/16.
Echeverría, J. (2008). Apropiación social de las tecnologías de la información y la comunicación. Revista Iberoamericana de Ciencia, Tecnología y Sociedad, 4(10), 171–182. Web available: http://oeibolivia.org/files/Volumen%204%20-%20N%C3%BAmero%2010/doss07.pdf.
European Commission. (1994). Europe’s way to the information society. Brussels: European Commission. Web available: http://www.epractice.eu/en/library/281181.
European Commission. (2001). Discrimination by design (Background Paper). In Conference, Brussels, 3rd December. Web available: http://www.accessibletourism.org/resources/dfa_ia_en.pdf.
European Institute for Design and Disability (EIDD). (2004). Stockholm declaration. Web available: http://www.designforalleurope.org/Design-for-All/EIDD-Documents/Stockholm-Declaration/.
Feenberg, A. (1991). Critical theory of technology. New York: Oxford University Press.
Feenberg, A. (2002). Transforming technology. New York: Oxford University Press.
Finkelstein, V. (1980). Attitudes and disabled people: Issues for discussion. Nueva York: World Rehabilitation Fund.
G3ict. (2007). The accessibility imperative. Implications of the convention on the rights of persons with disabilities for information and communication technologies. Web available: http://g3ict.org/resource_center/g3ict_book_-_the_accessibility_imperative.
Googin, G., & Newell, Ch. (2003). Digital disability. United Kingdom: Rowan & Littlefield.
Hales, G. (Ed.). (1996). Beyond disability. London: Sage.
Hamelink, C. J. (2000). The ethics of cyberspace. London: Sage.
Hoyos, N. E. (2002). La apropiación social de la ciencia y la tecnología: una urgencia para nuestra región. Interciencia. Revista de Ciencia y Tecnología de América, 27(2). http://redalyc.uaemex.mx/redalyc/pdf/339/33906501.pdf.
Hunt, P. (1966). A critical condition. In P. Hunt (Ed.), Stigma: The experience of disability. London: Geoffrey Chapman. Web available: http://www.leeds.ac.uk/disability-studies/archiveuk/Hunt/critical%20condition.pdf.
Laudan, L. (1984). Science and values. Berkeley: University of California Press.
Lopez Cerezo, J. A., Méndez Sanz, J. A., & Todt, O. (1998). Participación pública en política tecnológica. Problemas y Perspectivas. Arbor, 627, 279–308.
Mace, R., Hardie, G., & Plaice, J. (1991). Accessible environments: Toward universal design. In W. E. Preiser, J. C. Vischer, & E. T. White (Eds.), Design interventions: Toward a more human architecture. New York: Van Nostrand Reinhold.
Gordillo, M. (2005). Cultura científica y participación ciudadana: materiales para la educación CTS. Revista Iberoamericana de Ciencia, Tecnología y Sociedad, 2(6), 123–135. Web available: http://oeibolivia.org/files/Volumen%202%20-%20N%C3%BAmero%206/doss04.pdf.
Mueller, J. L. (1998). Assistive technology and universal design in the workplace. Assistive Technology, 10(1), 37–43.
Oliver, M. (1996). Understanding disability: From theory to practice. London: Macmillan.
Palacios, A. (2008). El modelo social de la discapacidad: orígenes, caracterización y plasmación en la Convención Internacional sobre los Derechos de las Personas con Discapacidad. Madrid: Ediciones Cinca. Web available: http://www.convenciondiscapacidad.es/Publicaciones/El%20modelo%20social%20de%20discapacidad.pdf.
Palacios, A., & Romañach, J. (2006). El modelo de la diversidad. La Bioética y los Derechos Humanos como herramientas para alcanzar la plena dignidad en la diversidad funcional. Madrid: Diversitas. Web available: http://www.diversocracia.org/docs/Modelo_diversidad.pdf.
Palacios, A., Romañach, J., Ferreira, M. A. V., & Ferrante, C. (2009). Functional diversity, bioethics and sociological theory: A new approach to disability. Disability & Society (submitted).
Pickering, A. (1995). The mangle of practice. Chicago: Chicago University Press.
Proctor, R. N. (1991). Value-free science?. Cambridge: Cambridge University Press.
Putnam, H. (2002). The collapse of the dichotomy fact/value. Cambridge: Harvard University Press.
Quintanilla, M. A. (1989). Tecnología: Un enfoque filosófico. Madrid: Fundesco.
Rescher, N. (1999). Razones y valores en la Era científico-tecnológica. Barcelona: Paidós.
Romañach, J., & Lobato, M. (2005). Functional diversity. A new term in the struggle for dignity in the diversity of the human being. Web available: http://www.leeds.ac.uk/disability-studies/archiveuk/zavier/Functional%20Diversity%20%20%20%20%20%20%20%20%20%20_fv%20Roma%F1ach.pdf.
Schot, J. (2001). Towards new forms of participatory technology development. Technology Analysis & Strategic Management, 13(1), 39–52.
Scotch, R. (1985). Disability as a basis for a social movement: Advocacy and the politics of definition. Journal of Social Issues, 44, 159–172.
Seelman, K. D. (2001). Science and technology policy. Is disability a missing factor? In G. L. Albrecht, K. D. Seelman, & M. Bury (Eds.), Handbook of disability studies (pp. 663–692). London: Sage.
Sen, A. (1979). Equality of what? The tanner lectures on human values. Stanford University, May 22, 1979. Web available: http://www.tannerlectures.utah.edu/lectures/documents/sen80.pdf.
Sen, A. (1987). The standard of living. In G. Hawthorn (Ed.), The standard of living. Cambridge: Cambridge University Press.
Sen, A. (1985). Commodities and capabilities. Amsterdam: Elsevier Science.
Sen, A. (1993). Capability and well-being. In M. C. Nussbaum & A. Sen (Eds.), The quality of life (pp. 30–53). New York: Oxford University Press.
Sen, A. (1999). Nuevo examen de la desigualdad. Madrid: Alianza Editorial.
Shakespeare, T. (1994). Cultural representations of disabled people: Dustbins for disavowal? Disability & Society, 9(3), 283–299.
Shakespeare, T., & Watson, N. (1996). The body line controversy: A new direction for disability studies? Hull Disability Studies Seminar. Web available: http://www.leeds.ac.uk/disabilitystudies/archiveuk/Shakespeare/The%20body%20line%20controversy.pdf.
Shapiro, J. (1994). No pity. People with disabilities forging a new civil rights movement. New York: Times Books. Random House.
Sheldon, A. (2001). Disabled people and communication systems in the twenty-first century. PhD thesis, University of Leeds, Leeds. Web available: http://www.leeds.ac.uk/disability-studies/archiveuk/Sheldon/thesis2viv2.pdf.
Sheldon, A. (2004). Changing technology. In J. Swain, S. French, C. Barnes, & C. Thomas (Eds.), Disabling barriers–enabling enviroments (pp. 155–160). London: Sage.
Stiker, H.-J. (1999). A history of disability. The University of Michigan Press.
Stirling, A., Renn, O., Klinke, A., Rip, A., & Salo, A. (1999). On science and precaution in the management of technological risk. In Technological risk and management of uncertainty, Report ESTO/SPRU.
Swain, J., French, S., Barnes, C., & Thomas, C. (2004). Disabling barriers–enabling enviroments. London: Sage.
Tewey, B. (1997). Building participatory action research partnerships in disability and rehabilitation research. Washington, DC: U.S. Department of Education, National Institute on Disability and Rehabilitation Research.
Tiles, M., & Oberdiek, H. (1995). Living in a technological culture. Human tools and human values. London: Routledge.
Toboso, M., & Arnau, M. S. (2008). La discapacidad dentro del enfoque de capacidades y funcionamientos de Amartya Sen. Araucaria. Revista Iberoamericana de Filosofía, Política y Humanidades, 20, 64–94. Web available: http://institucional.us.es/araucaria/nro20/ideas20_4.htm.
Toboso, M., & Guzmán, F. (2010). Cuerpos, capacidades, exigencias funcionales... y otros lechos de Procusto. Política y Sociedad, 47(1), 67–83. Web available: http://revistas.ucm.es/cps/11308001/articulos/POSO1010130067A.PDF.
UN. (2006). Convention on the rights of persons with disabilities. Web available: http://www.un.org/esa/socdev/enable/rights/convtexte.htm.
UN. (2008). Mainstreaming disability in the development agenda. Economic and Social Council Commission for Social Development, E/CN.5/2008/6. Web available: http://www.un.org/disabilities/default.asp?id=33.
UNESCO. (1999). Declaration on science and the use of scientific knowledge. Web available: http://www.unesco.org/science/wcs/eng/declaration_e.htm.
UNESCO. (2001). COMEST Sub-Commission on “The Ethics of the Information Society”. Web available: http://unesdoc.unesco.org/images/0012/001248/124896e.pdf.
Üstün, T. B., et al. (2001). Disability and culture: Universalism and diversity. Seattle (WA): Hogrefe & Huber.
Vacas, F. (2007). TVIC: Tecnologías para la vida cotidiana. Telos, (73). Web available: http://www.campusred.net/TELOS/editorial.asp?rev=73.
Vanderheiden, G. C. (1998). Universal design and assistive technology in communication and information technologies: Alternatives or complements? Assistive Technology, 10(1), 29–36.
Von Hippel, E. (1988). The sources of innovation. New York: Oxford University Press.
Von Hippel, E. (2005). Democratizing innovation. Cambridge, MA: MIT Press.
W3C. (2005). How people with disabilities use the web. http://www.w3.org/WAI/EO/Drafts/PWD-Use-Web/.
Winner, L. (2007). Is there a right to shape technology? Argumentos de Razón Técnica, 10, 305–328.
Winocur, R. (2007). Nuevas tecnologías y usuarios. La apropiación de las TIC en la vida cotidiana. Telos, (73). Web available: http://www.campusred.net/TELOS/articuloexperiencia.asp?idarticulo=1&rev=73.
Wolbring, G. (2003). Disability rights approach toward bioethics? Journal of Disability Policy Studies, 14(3), 174–180.
Acknowledgments
This article is a result of the research project “Filosofía de las tecnociencias sociales y humanas” (FFI2008-03599) of the Spanish R&D Plan 2009–2011, and the CSIC Intramural project “Discapacidad, envejecimiento y calidad de vida” (200810I218).
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Toboso, M. Rethinking disability in Amartya Sen’s approach: ICT and equality of opportunity. Ethics Inf Technol 13, 107–118 (2011). https://doi.org/10.1007/s10676-010-9254-2
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10676-010-9254-2