We don’t need to be fixed: disability culture and universal human rights-1

By Heng-hao Chang

Professor, Department of Sociology, National Taipei University

Translated by Eden Social Welfare Foundation

        The public generally considers disability a medical issue, social welfare issue, or “special” education issue. Disability scholars, however, have redefined disability as a human diversity and human rights issue. As a preeminent scholar in this area writes:

Disability studies does not treat disease or disability, hoping to cure or avoid them; it studies the social meanings, symbols, and stigmas attached disability identity and ask how they relate to enforced systems of exclusion and oppression, attacking the widespread belief that having an able body and mind determines whether one is a quality human being (Tobin Siebers 2015: 3-4).

An extension of the idea that disability is part of human diversity is that disabled people have “culture.”Why might the question of disability culture matter to society broadly?

Clearly, disability culture differs from ethnic cultures in that it does not stem from family, consanguinity, or regional traditions in the same way. Disability culture has been constructed based on disabled people’s histories and experiences of oppression (Brown 2003, 2004).

Recapturing a disability culture in Taiwan

A member of the Taiwan Association for Disability Rights posed a question on Facebook once asking why the president of Taiwan has never apologized to persons with disabilities, given he has apologized to aboriginal people for centuries of oppression. Taiwan’s disability community would do well to consider Liu’s question, and in fact what the history of oppression that warrants apology has been. Persons with disabilities are not a homogenous group, and their voices have been marginalized. As a disability studies historian points out:

Disability is everywhere in history, once you begin looking for it, but conspicuously absent in the histories we write.It is time to bring disability from the margins to the center of historical inquiry” (Baynton 2001: 52).

These cases of preserving Lo-Sheng Sanatorium (樂生院) for people with Leprosy and the Institute for the Blind of Taiwan reveal how little has been done enough to rescue disabled people’s history, even as disabled people have begun to gain rights such as accessible public transportation, education, and employment after long-term collective efforts that span decades. Non-governmental organizations, professionals who serve disabled people and parents of persons with disabilities have been key actors as well as people with disabilities. In addition to the history of these struggles, it is important to count disabled people’s own histories. By recognizing this piece of history the disabled have the opportunity to identify with an oppressed “us.”

Social model, Individual Model and Charity Model

When I first read about independent living for disabled people, I was very confused. If disabled people have to “depend” on other’s support to live independently, is it really “independent living”? Professor Steven Brown from the Center on Disability Studies, University of Hawaii, Manoa, answered my question in class. He explained that independent living has always been inter-dependent for the able-bodied and disabled alike. Disability culture values interdependence over the illusion of isolated independence. Nobody can isolate from society and live without support from others. The activist and advocate Vic Finkelstein makes a similar point when he argues, “In the ‘rights’ approach, parliament grants legal rights to those it defines as ‘disabled’. The focus is on identifying characteristics of the individual, rather than the nature of society, and then making selected ‘concessions’ to those so defined” (Finkelstein 2009: 146). In other words, a rights approach might make the disability politics more conservative and become a personal issue, so that the society will neglect the real problem: the social structure. In other words, to build up disability culture, we must bring the origin of the social model back, which refers to the statement from the Union of the Physically Impaired against Segregation (UPIAS 1976):

In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we unnecessary isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society (UPIAS 1976: 14-15, cited from Oliver 2009: 42).

Oliver (1996) further suggests that “the social model is not about the personal experience of impairment but the collective experience of disablement.”

Taiwanese society usually deals with disabled persons’ needs based on concepts of “charity”, and the government shows “kindness” by “solving the problems” disabled persons impose on broader society. For example, accessibility to the National Concert Hall during its reconstruction was framed as a charity and “special arrangement” for disabled people. The government did not address accessibility to cultural events as a part of multiculturalism, but see this arrangement as a kindness to special need persons. Disabled people have to fight for being recognized as a group, having equal rights, instead of relying on charity. There is a deep-rooted belief in Taiwanese society that disabled persons are inferior; an old phrase “disabled but useful殘而不廢” suggests the status of disabled people. These are concepts that disability culture needs to challenge.

To be continued.