Speech on Disability and Human Rights at Symposium

by Raha Bahreini, Member of IRQO Board

My topic today is Understanding Disability as a human Rights Issue. When we were first organizing this Human Rights Symposium, it was fairly clear to all of us that the systematic oppression of people based on gender, sexual orientation, ethnicity, language, and religion should be examined and discussed. But I felt one social category was deeply missing and that was disability. Disabled people, which form the largest minority in the world encompassing more than 500 million persons, remain one of the most marginalized groups in many developed and developing countries. Being relegated by disabling environmental and attitudinal barriers as burdensome, passive and unproductive, people with disabilities have been often denied from participating in society in a meaningful and productive way. They are often locked in large institutions called nursing homes, deprived of all rights that non-disabled people take for granted: liberty, social and political life, work, education, privacy, to name but a few areas. To this day, their disadvantaged and marginalized position in society is still viewed, by many, as simply a tragic and inevitable fate determined by biological conditions. It is often hard for many of us to understand how disability can be also understood as an equal opportunities and human rights issue on par with racism, sexism, heterosexism and other forms of social oppression. My main aim in this talk is to show how disability can be understood as a political and human rights issue. I will first provide a theoretical background on models that have been developed for understanding disability as a sociopolitical issue. I will then talk very briefly about human rights conventions that have been developed on the rights of Disabled People at the international level. At the end I will apply these theories and discussions to the situation of disabled people in Iran.

Historically, feminists, anti-racism activists, and queer activists have employed the term oppression in their analysis of gender, race, and sexuality in order to situate their personal experiences of subjugation and exclusion in a sociopolitical context, and to draw attention to the social ideologies and structures that produce and facilitate their subjugation and exclusion. By applying the term oppression to their situation, they can show that their inferior position in society is not natural or inevitable, and is rather created and enforced by unjust social and political arrangements.  Since the mid-1970s, disability activists have also started to apply the term oppression to disabled people. They have challenged the social construction of disability as an individualized medical problem in need of pity and ‘cure’, and have argued instead for a social model of disability which sees the oppressive social and political arrangement of society, and not the actual physical impairment, as the main cause of marginalization and exclusion (Thomas, 2004). The Union of the Physically Impaired against Segregation in the UK, which in the 70s became the intellectual heart of the newly emerging disability movement stated in its 1976 declaration:

“It is society which disables physically impaired people… we define        disability as the restriction of activity caused by contemporary social      organization which…excludes people who have physical impairments from participation in the mainstream social activities. Physical disability is therefore a particular form of social oppression (Hahn, 2001:60).”

In their analysis, they referred to “residential care, minimum benefits, exclusion from employment and educational mainstream, and blocks on access to the built environment” in order to show that it is the oppressive organization of society, and not their actual physical impairment, that prevents them from functioning (Thomas, 2004: 571). Analyzing disability in such a sociopolitical context was a revolutionary reaction to the ‘personal tragedy model of disability’ which viewed disability as ‘restricted activity’ caused by biological barriers. It was a powerful resistance to a medical model that was generally reluctant to acknowledge that beside those restrictions caused mainly by biological conditions, there existed types of restriction, marginalization and exclusion that have pure social and ideological roots (Thomas, 2004).

How can we explain the Nazi program of “euthanasia”, the North American programs of enforced sterilization, and the atrocities committed by medical professionals in mental institutions and residential homes, if not by an oppressive ideology that views disabled people as  ‘abnormal’ ‘defectives’, and a ‘burden’ on society? How can we explain our excessive preoccupation with inherited diseases, prenatal testing and genetic screening when we know that poverty, economic mismanagement and political callousness are the primary causes of disability? Is it biology or social discrimination that restricts access to employment opportunities even when it is no more costly and as profitable to employ disabled people? Is it the failure of their body parts or the failure of welfare and educational facilities that keeps a large portion of disabled people uneducated and in poverty? The list of the social, financial, environmental and psychological disadvantages that are inflicted upon disabled people by society is too long to mention here yet the above examples are enough to show that many of the disadvantages faced by disabled people have material, ideological and social bases. It is for this very reason that we can claim these kinds of disadvantages constitute a form of social oppression.

Analyzing disability as oppression helps us lay a foundation for the concept ableism to come into being on par with concepts like sexism, racism and homophobia. It equips us with a political perspective for forming a disability movement with the aim of bringing about social justice and equal opportunity for disabled people.  The disability rights movement has tried to bring about justice and equality for disabled people through various roots. Among these roots have been seeking anti-discrimination and human rights legislation both at national and international levels, placing Independent Living on welfare agendas, consciousness-raising and building a positive and proud disabled identity through disability art and culture (Campbell, & Oliver, 1996, & Barnartt, & Scotch, 2001).

 At the international level, disability organizations have been successful in pushing the UN to produce declarations on the rights of Disabled People in 1975, on Mentally Retarded Persons in 1971, on Persons with Mental Illness and the Improvement of Mental Health Care in 1991. In 1982, the United Nations produced the World Program of Action (WPA) concerning Disabled Persons, which set out recommendations to member states on how they could implement the full and equal participation of disabled people in society. WPA was an important initiative because it was for the first time that a modern disability policy asked for an analysis of the situation of disabled persons based on a human rights perspective and not a medical and charity one. The most important trigger for world acceptance of disability as a human rights issue was the report Human Rights and Disabled Persons, by Leandro Despouy (1993), Special Rapporteur of the Sub-Commission on the Prevention of Discrimination and Protection of Minorities. In this report, Despouy provided conclusive evidence that disabled people’s rights were systematically denied and that the existing human rights instruments, although including disabled people, were not being used in reference to them. Despouy pressed for an international convention. Despite this, it was only in November 2001 that a convention was created through a resolution to the UN General Assembly. A Committee has been set up to examine the proposition and propose mechanisms for implementation (Hurst, 2004).

So where does Iran stand in relation to these international efforts that attempt to replace the medical individualistic approach to disability with a political and human rights approach. Disabled people generally form 10% of every population and Iran is not an exception to this pattern. Severely Disabled people constitute 2% of the Iranian Population (http://www.iransdp.com/En_default.asp). A large majority of disabled people in Iran are uneducated and unemployed, and those employed work at very low paid and low benefit jobs. The most progressive and comprehensive legal act concerning disabled people was passed in May 2003, under President Khatami’s administration. The act which is called Disability Protection Act provides basic legal protections for disabled people in areas such as access to public buildings, employment, education, housing and finance.

The act requires public buildings and environmental structures to become fully accessible but in practice no significant change has yet taken place. In terms of employment, it requires governmental organizations and those entities which receive funding from the government to employ 3 percent of their workforce from a population of registered disabled people. It also designates 60 percent of low-paid governmental positions such as telephone operators to disabled people. There is no uniformed system to monitor the compliance of organizations with these provisions however, and employers can often win exemption on various legal and illegal grounds. The act also envisions more opportunities for accessible and affordable education and housing for registered disabled people. What should be noted here is that of one and half million severely disabled people in Iran, only 500,000 are registered under State Welfare Organization and thus only these 500,000 people can have, on paper, access to these benefits, not to mention all the practical and bureaucratic obstacles involved for even these registered disabled people (http://www.iransdp.com/En_default.asp).

I would like to explain briefly here how the Disability Protection Act of 2003 defines disability. The act endorses a medical and paternalistic interpretation of disability with impairment and not the society’s arrangement as the main cause of ‘restricted activity’. It defines a disabled person “as one whose physical or mental impairment substantially prevents him from participating in one or more major life activities.” It does not recognize the discriminatory barriers of the so-called ‘taken-for-granted’ environment that prevents disabled people from functioning. It does not take into account that disability is a relational concept and that the extent to which a physical impairment can mean disability and restriction depends, to a large degree, on environmental structures.

It is true though that the adaptation of Disability Protection Act by Khatami’s administration at least challenged isolation and segregation of large groups of disabled persons and laid a foundation for the ideas of normalization and integration to gain legal strength. The basic idea of normalization is that disabled persons have a right to family and to their natural social environment and that they need training and rehabilitation services in order to be able to cope with the difficulties that they are bound to counter in the open society. These ideas of normalization and integration have been of course important in terms of influencing rehabilitation programs and the organization and content of special education. Nonetheless, it is fair to say that these ideas have mostly come from non-disabled people, lacking experience with disability. The attempt is to understand and accommodate the phenomenon of disability. Yet the source of knowledge comes from not those who experience disability but those who are often bewildered, frightened or even disgusted by the phenomenon of disability. 

Even though the act tries to challenge segregation and encourage integration, the main objective of the Disability Protection Act is still to take care of the disabled individual. The disabled individual is not the subject but the object of action. As its name suggests, the act includes a substantial element of protection and thus continues to rely on a paternalistic philosophy that allows the existence of large institutions, where severely disabled persons should live their whole life, in isolation from society. Thus many disabled people in Iran still live in rehabilitation centers under the protection of government. In the past few years, due to shortages of space and funding, the State Welfare Organization (behzisti) has transferred many of its rehabilitation centers to the private sector. Currently 50,000 disabled people are kept in non-governmental rehabilitation centers (http://www.iransdp.com/En_default.asp).

Unfortunately, very little research has been done on the situation of disabled people in these private and public institutions, but it would not be surprising to hear of cases of physical, sexual, emotional and psychological abuse, given the lack of enforceable anti-discrimination laws, and the cultural dominance of prejudicial and ableist norms which stereotype disabled bodies as ‘childish’, ‘dependent’, ‘burdensome’ and ‘unworthy’. If the disabled person is taken care of at home, the government would pay 15000 to 45000 Toman to the family which is basically nothing (http://www.iransdp.com/En_default.asp). Similarly, it would not be an exaggeration to assume that many of these disabled individuals, especially the minors, would be mistreated and abused by their family members and teachers, given the status of Iranian law which gives a free hand to child abusers. Stories have been written of disabled children from rural and traditional areas who have been locked up by their family members because disability is often associated, in more traditional settings, with ‘shame’, ‘misery’ and ‘God‘s curse’. 

Unfortunately, as I mentioned before, comprehensive research studies on the kinds of obstacles and discriminations that disabled people face daily in Iran are almost non-existent. I had difficulty gathering valid information and resources on this issue since most of the organizations I searched were charity-based and thus government-controlled. Overall however, my main aim was to show that it is time to add disability to our list of concerns as human rights issue. As human rights activists, we need to be conscious that there is a common link between all the different forms of oppression, defined along gendered, ethnic, class, sexual and physical lines. Today’s integrative theories of social justice from feminist to queer theories require us to seek a non-hierarchical discussion of social oppressions, without assuming that all forms of oppression are unified, consistent and necessarily equal in their social effect. The main purpose of my talk was thus to introduce disability as indeed one more form of social oppression, in serious need of scholarly attention and social activism in Iran.

Bibliography

Barnartt, S., & Scotch, R. (2001). Disability Protests: Contentious Politics 1970 -1999. Washington, DC: Gallaudet University Press.   

Campbell, J., & Oliver, M. (1996). Disability Politics: Understanding Our Past, Changing Our Future. London, New York: Routledge.

 Hahn, H. (2001). Adjudication or empowerment: contrasting experiences with a social model of disability. In Barton, L. (Ed.), Disability Politics & The Struggle For Change (pp. 59-78). London: David Fulton Publishers Ltd.

 Hurst, R. (2004). Legislation and Human Rights. In Barnes, C., French, S., Swain, J., & Thomas, C. (Eds.), Disabling Barriers – Enabling Environments (pp. 195-200). London: SAGE Publications.

 Iranian Society of Disabled People (n.d.). Retrieved January 20, 2007, from  http://www.iransdp.com/En_default.asp.

 Thomas, C. (2004). How is disability understood? An examination of sociological approaches. Disability & Society, 19(6) pp. 569-583.