Disabled people: A social group with cultural identities?

UNESCO’s Declaration on cultural diversity has 17,300 hits on Google, but only one hit together with disabled people in which it is suggested holding a workshop for disabled people in Colombia.1 Similarly, the Convention on cultural diversity has 12,300 hits but 0 together with the term disabled people. What does this imply?

Many groups, governments, NGOs and others were involved in the deliberations. Did no one see disabled people as having a cultural identity or as a social group? Do disabled people not see themselves as a culture or social group? Why did disabled people not try to get themselves heard? Are they so disempowered that they do not even feel it useful to be involved in political deliberations in this area? Or did they try, but were rejected?

What is disability culture?

The question whether there is a disability culture can be answered with a yes. Disability culture has 69,300 hits on Google. One description of disability culture is:

‘People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives and our culture, infused from our experience of disability. Most importantly, we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity. We are who we are: we are people with disabilities.’2

Another description is the following:

‘Many disabled people, people with non normative body compositions, functioning and abilities have forged a cultural identity based on a common history of oppression and a common bond of resilience. They see able-ism (discrimination based on non-normative abilities, functioning and body structures) as equal to racism, ageism, homophobia, and other other-isms.’3

And another

‘It is not simply the shared experience of oppression. If that were all our culture was, I would agree with those who doubt the probability of a disability culture. The elements of our culture include, certainly, our longstanding social oppression, but also our emerging art and humour, our piecing together of our history, our evolving language and symbols, our remarkably unified worldview, beliefs and values, and our strategies for surviving and thriving. I use the word “remarkable” because I find that the most compelling evidence of a disability culture is the vitality and universality of these elements despite generations of crushing poverty, social isolation, lack of education, silencing, imposed immobility, and relentless instruction in hating ourselves and each other. Our culture has been submerged by the profundity of our oppression and the forces that have divided us from each other. But any time disabled people have been able to come together, culture has flourished – in hospital wards, in special schools, at charity camps, during sit-ins, during creative workshops, in peer-support groups, in the hotel corridors of disability conferences, in jail. Furthermore, these scattered spurts of cultural development bear a significant resemblance to each other.’4

In the UK the expression of disability culture in particular through the arts is very strong. Examples are the London Disability Arts Forum,5 and the Workhouse, a fortnightly disability cabaret club at the Tabernacle Arts Centre in west London which was started by the London Disability Arts Forum in 1986.6 Another current example is the statue on the fourth plinth in Trafalgar Square, which shows the thalidomider Alison Lapper pregnant in white marble.7 Many other expressions and examples of disability art and culture exist around the world.8

Is disability culture as outlined in the above three quotes in sync with the definition of cultural identity as outlined in the UNESCO Declaration and Convention? I would say, yes. The Declaration states:

‘Reaffirming that culture should be regarded as the set of distinctive spiritual, material, intellectual and emotional features of society or a social group, and that it encompasses, in addition to art and literature, lifestyles, ways of living together, value systems, traditions and beliefs.’

In Article 4 - Definitions, The Convention states:

‘1. Cultural diversity

“Cultural diversity” refers to the manifold ways in which the cultures of groups and societies find expression. These expressions are passed on within and among societies. Cultural diversity is made manifest not only through the varied ways in which the cultural heritage of humanity is expressed, augmented and transmitted through the variety of cultural expressions but also through diverse modes of artistic creation, production, dissemination, distribution and enjoyment, whatever the means and technologies used.

3. Cultural expressions

“Cultural expressions” are those expressions that result from the creativity of individuals, groups and societies, and that have cultural content.’

The definition of cultural diversity, cultural expression and culture as quoted from both the Declaration and the Convention seem to fit the disability culture and disability identity on the basis of the views of disabled people quoted above. So the real questions are those addressing why disabled people are not mentioned and what role disabled people played – if any – in the deliberations?

Why acceptance of disabled people as a cultural identity and social group is needed

Carol Gill sees four functions for disability culture. They are: 1) Fortification. The definition and expression of our value as a community charges us up and enriches our lives, giving us energy and endurance against oppression. 2) Unification. As we hear ad nauseam, people with disabilities are a heterogeneous community encompassing different ages, races, genders, socio-economic statuses, etc. The expression of our beliefs and heritage in cultural activities, however, brings us together, encourages mutual support and underscores our common values. 3) Communication. Our developing art, language, symbols, and rituals help us articulate to the world and signal to each other who we are as a distinct people. 4) Recruitment. The expression of our culture is a positive and defiant conversion of our social marginalization into a celebration of our distinctness. It encourages people with disabilities (particularly new and young disabled persons) to ‘come out’ as part of the community, allowing them finally to integrate their disabilities into their individual identities and offering them a sense of group ‘belonging’.

How does this perception of functions for disability culture fit with how the Convention defines the usefulness of culture? The parts of the Convention quoted below seem to express the same views as Carol Gill in regard to why disability culture is needed.

‘Preamble:

3. Being aware that cultural diversity creates a rich and varied world which increases the range of choices and nurtures human capacities and values and therefore is a mainspring for sustainable development for communities, peoples and nations;

5. Celebrating the importance of cultural diversity for the full realization of human rights and fundamental freedoms proclaimed in the Universal Declaration of Human Rights and other universally recognized instruments;

6. Emphasizing the need to incorporate culture as a strategic element in national and international development policies, as well as in international development cooperation, taking also into account the United Nations Millennium Declaration (2000) with its special emphasis on poverty eradication;

7. Taking into account that culture takes diverse forms across time and space and that this diversity is embodied in the uniqueness and plurality of the identities and cultural expressions of the peoples and societies making up humanity;

13. Recognizing that diversity of cultural expressions, including traditional cultural expressions, is an important factor that allows peoples and individuals to express and to share with others their ideas and values;

14. Recalling that linguistic diversity is a fundamental element of cultural diversity and reaffirming the fundamental role that education plays in the protection and promotion of cultural expressions,

15. Taking into account the importance of the vitality of cultures, including for persons belonging to minorities and indigenous peoples, manifested in their freedom to create and to disseminate and distribute their traditional cultural expressions, to have access thereto, so as to benefit them for their own development.

Article 2 – Guiding Principles

3. Principle of equal dignity of and respect for all cultures

The protection and promotion of the diversity of cultural expressions presuppose the recognition of equal dignity of and respect for all cultures, including the cultures of persons belonging to minorities and indigenous peoples.

6. Principle of sustainable development

Cultural diversity is a rich asset for individuals and societies. The protection, promotion and maintenance of cultural diversity are an essential requirement for sustainable development for the benefit of present and future generations.’

The need for the acceptance of disabled people as a cultural identity and social group specific examples

The preceding section cites arguments as given in the convention to highlight why the ability to form a cultural identity and the attached ability for cultural expression is important.

The next section gives three concrete examples to highlight why the ability to form a cultural identity and the attached ability for cultural expression is important.

New technologies and identity of disabled people

Creating an uneven playing field in regard to public policy and the governance of new technologies such as Nanotechnology, Biotechnology, Information technology and Cognitive Sciences (NBIC) in such a way that disabled people are forced to accept a certain identity and certain perception of self could be seen as violating both the UNESCO Declaration and Convention.

Many disabled people, people with non-normative body compositions, functioning and abilities have forged a cultural identity. However, the perception of disabled people by so called non-disabled people is often not in sync with the self-perception of disabled people.9 Those governing science and technology for the most part refuse to accept and act on the disability culture and the social model self-identity of many disabled people. Instead many insist on using a simple medical or transhumanist/enhancement model of disabled people to characterize their problems and solutions, even if the disabled tell them to look at the social model instead. Pushing people to accept a certain identity (in this case to push disabled people to accept a negative deficiency self image despite the fact that many disabled people do not perceive themselves as negative deficient) could be seen as discrimination against a cultural minority (the disabled).

Social group approach to ethical reasoning

A social group approach is one way to look at bioethics theories. Feminist approaches to bioethics theories and issues are now credible and well developed. There is considerable evidence for the lack of acceptance and visibility of a disability rights approach to bioethics theories and issues. Debate over sex selection and disability ‘de-selection’ can be used to argue for the acceptance of a disability rights approach to bioethics issues and theories and also for a broadening of the view of disabled people away from a simplistic medical view towards a social justice one.

Disability rights approach to freedom of thought, expression and information

The Convention states in the Preamble: ‘Reaffirming that freedom of thought, expression and information enable cultural expressions to flourish within societies.’ What does that mean for disabled people?

If disabled people are a cultural identity, if cultural expression is essential for the maintenance and flourishing of a cultural identity, then both Declaration and Convention lead to certain obligations for the signing countries. They have to make sure that disabled people can express themselves. That means public places, the education system, the communication systems and other areas of expression have to be accessible. If freedom of thought is important, certain actions in regard to disabled people have to be taken.

Many thoughts are a response to other people’s thoughts. However if, for example, 98% of web pages are inaccessible to the blind, if many places where one talks about disabled people are not accessible (most academic and other conferences), if many places where one teaches about disabled people are not open to disabled people (the employment rate of disabled people in academia is far below the percentage of their representation in society), then freedom of thought is dramatically impaired as disabled people cannot shape opinions on many issues as they cannot read or hear many of the thoughts opinions out there.

Many use the term freedom of speech to defend their right to speak publicly without opposition about disabled people. If these people would take that concept seriously, they first would ensure that disabled people have the same possibilities of expressing their thoughts as they have. This would entail a demand for accessible material (web pages, audio, video, reading material), accessible conferences, accessible education, increase in academic presence of disabled people, increased presence of disabled people on the policy level, and all other areas of society. For too long the term freedom of speech has been misused detrimentally in regard to disabled people.

Conclusion: A communication failure?

This article has shown that the wording of the UNESCO declaration and convention allows disabled people to perceive themselves as a cultural identity with the right to cultural expression. There are examples of why it is vital for disabled people to be accepted within a cultural identity as they define it. However, I also raised the following question: Did no one involved in the deliberations about the declaration and the convention NGO’, governments, UNESCO itself, or others see disabled people as a cultural identity or social group? If not, why not?

Why did disabled people not try to get themselves heard? Are they so disempowered that they do not even feel it useful to be involved in political deliberations in this area? Or did they try, but were rejected? From interactions with Disabled Peoples International (DPI) I can say that there was no effort by UNESCO to involve DPI. Furthermore, as no hits show up in Google with the keyword combination “UNESCO International Declaration on Cultural diversity” and “disabled people” or “UNESCO Convention of the Protection and Promotion of the Diversity of Cultural Expressions” and “disabled people” it might be reasonably assumed that disabled people were not involved by key players in this process.

It is more difficult to answer the question whether disabled people tried to be involved. However, it is my experience that disabled people are so oppressed and still fight the daily fight for access to buildings, employment, education, income and society that there are very few who can work politically. Their time is mostly taken up by the fight for basic needs and at the moment by their efforts to obtain a UN convention on the rights of disabled people.

To get disabled people involved in issues even a little bit removed from the concerns they struggle with all the time requires a concerted effort by others to involve them. Furthermore, as disabled people and their organizations lack money, money has also to be provided. What is certain is that, within my Canadian sphere of involvement in the disability movement and in UNESCO, I did not hear of any such concerted effort, which speaks to a vital failure of communication.

Notes

1. unesdoc.unesco.org/images/0013/001345/134556e.pdf

2. Steven E. Brown, Mainstream Magazine, 1996 http://www.dimenet.com/disculture/; http://www.abilityinfo.com/category/culture.html

3. Wolbring, G. (2004) ‘Solutions follow perception: NBIC and the concept of health, medicine, disability and disease’ in Alberta Health Law Review Volume 12 Issue 3.

4. Gill, Carol J. 1995. ‘A Psychological View of Disability Culture.’ First published in Disability Studies Quarterly, Fall 1995. Internet publication URL: http://www.independentliving.org/docs3/gill1995.html

5. http://www.ldaf.org/ see also http://www.bioethicsanddisability.org/disartsadv.html http://www.ldaf.org/images/dail/dial-184web%20v2.pdf; http://www.ldaf.org/PDF/chronologyword.doc

6. http://www.artscouncil.org.uk/documents/publications/781.rtf page 7

7. http://www.fourthplinth.co.uk/marc_quinn.htm

8. http://www.bioethicsanddisability.org/disartsadv.html

9. Wolbring, (2003), ‘Confined to Your Legs’, in A. Lightman, D. Sarewitz,and C. Desser (eds.), Living with the Genie: Essays on Technology and the Quest for Human Mastery (Washington, DC: Island Press). ISBN: 1-55963-419-7; Wolbring (2003) ‘Science, Technology and the Triple D (Disease, Disability, Defect’, pp. 232-243 in Converging Technologies for Improving Human Performance: Nanotechnology, Biotechnology, Information Technology and Cognitive Science edited by Mihail C. Roco National Science Foundation, Arlington, VA, USA William Sims Bainbridge National Science Foundation, Arlington, VA, USA Kluwer Academic Publishers, Dordrecht Hardbound, ISBN 1-4020-1254-3 April 2003, 423 pp. also available online http://www.wtec.org/ConvergingTechnologies/ and http://www.bioethicsanddisability.org/nbic.html

Gregor Wolbring (PhD) is a member of the Executive of the Canadian Commission for UNESCO, a Biochemist at the University of Calgary, an Adjunct Assistant Professor at the Dept. of Community Rehabilitation and Disability Studies, Faculty of Education and the Dept. for Community Health, Faculty of Medicine at the University of Calgary and an Adjunct Assistant Professor at the John Dossetor Health Ethics Center at the University of Alberta, a fellow at the Institute for Population Health, University of Ottawa all Canada, and a consultant for bioethics, disability, health research, emerging technologies and governance of science and technology issues. Webpage: http://www.bioethicsanddisability.org E-mail: gwolbrin@ucalgary.ca