Abstract

Exploring major requisites to establish an Iranian disability studies, the aim of this study is to determine how a local literature of disability can be formed in Iran, as well as how the Iranian and global disability studies might interchange disability knowledge. In an analysis of the responses to a qualitative questionnaire, three themes emerged: rudimentary resources, disability literature, and political prerequisites. Accordingly, human and financial resources, a bank of Farsi and English literature on disability, as well as developing academic relations between Iranian and international disability scholars (as an outcome of improving the Iran-USA political affairs) are essential to form a local disability studies in Iran and to engage it in the global discussions of disability studies.


Introduction

In 2008, I decided to work on "disability and media" as a subject for my Ph.D. dissertation in Communication at Islamic Azad University in Tehran. Relying on two decades of experiences as a journalist and disability rights activist, I was determined to investigate different approaches to representing disabilities in the mass media in order to find out which pattern could be the most useful for the disability rights movement. After consulting with a few professors of Communication and Sociology, I learnt that none of them had any idea about the academic potential of disability issues. They unanimously emphasized that disability is not more than a personal experience, better to be studied only by medical students.

The feedback was disappointing; however, I was still determined and sure that I could theorize disability on the basis of my professional experiences as well as my academic studies. I was lucky enough that my dissertation proposal was admitted by the Communication Department under the title "Journalism for the People with Disabilities: Theoretical Frameworks and Practical Approaches." It was obvious from the first steps that the most difficult part of my dissertation would be its literature review. In Iran, disability has received most attention from medical scholars and least from researchers of social sciences and humanities. The available literature is more medical than sociological.

My trip to the United States in 2010 to work on my doctoral dissertation made me familiar with the rich literature of disability. I discovered an academic field that seemed new to me, a wonderland named Disability Studies. So, after a year of reading hundreds of articles, I decided to publish a book in Farsi, titled An Introduction to Disability Studies: A Sociological Approach, which will be released in spring 2014 (Simaye Shargh Publications, Tehran, Iran). I carried out this research to introduce academic disability studies to my country and assist in the formation of an Iranian disability literature.

From the Disability Rights Movement to Disability Studies

There are no accurate statistics on the number of persons with disabilities in Iran. According to the 2006 national census, only 2,700,000 Iranian individuals are disabled; however, this number has been challenged by disability organizations, claiming that families might have "ignored," "denied," or even "hidden" their disabled members during the census. Estimates suggest that at least 7,500,000 persons (out of 75,000,000 Iranians) have a kind of disability or disabilities. 1

The number of disabled people grew dramatically after the Islamic revolution of 1978, as well as throughout the eight-year war of Iraq against Iran (1980-1988), which left around 400,000 disabled veterans. Increasing numbers of disabled individuals demanded higher financial grants and medical interventions, which were delivered mostly by governmental institutions, such as the State Welfare Organization of Iran (Saazman-e-Behzisti) and the Foundation of Martyrs and Veteran Affairs (Bonyad-e- Shahid va Omour-e Janbazan). Simultaneously, the medical study of disability flourished in both medical and rehabilitation schools such as the University of Social Welfare and Rehabilitation Science, which was established in Tehran in 1982 to work exclusively on disability from the rehabilitation and health point of view.

If we consider disability studies as the theoretical side of the disability rights movement (Snyder, 2006), it seems necessary to investigate whether a disability rights movement has ever developed in Iran before we can examine the development of disability studies in Iran. According to Colon, et al. (2006), a social movement happens when a number of people collaborate and work collectively on a social problem in order to make a social change. A historical glance at the achievements of Iranians with disabilities and their allies in the realms of education, legislation, and NGO formation might accordingly suggest that such a movement has been happening in the recent decades.

Educational Achievements

There are a number of individuals whose names are prominent in improving the educational system for deaf and blind people in Iran. Among them, two pioneers are the most influential: Ernst J. Christoffel and Mirza Jabbar Asgarzadeh (known as Baghchehban).

Ernst J. Christoffel (1876-1955), a German pastor and the Christian Blind Mission's founder, established the first school for Iranian blind students in Tabriz in 1920, as well as the first school for young disabled individuals in Isfahan in 1923. He had a passion to serve the poor, disabled and homeless population in the Middle East, particularly Iran and Turkey. On his gravestone in Isfahan it is craved in Braille that he was the "Father of the Blind, Deaf-Mute, and Orphans." 2


Ernst J. Christoffel's gravestone in Isfahan, Iran  3


Four years after Christoffel constituted the first school for blind children, Jabbar Baghcheban (1885-1966), a developer of Persian sign language, inaugurated the first school for deaf children in Tabriz in 1924. At the same time, his co-worker, Zabih Behrouz, initiated a sort of disability research by studying the ways to improve the educational status of deaf people.

While the first Educational Center for the Mentally Disabled Children established in 1960 in Tabriz, a number of students labeled as "maladaptive" attended their first special classes in Tehran in 1967. A year later, 13 physically disabled students in Tehran started educating. Simultaneously, the Office of Special Education established in 1968.

Following the Act of the Formation of Special Education Organization (1990), the (former) Office of Special Education upgraded to a more independent organization under the surveillance of the Ministry of Education in 1992. However, following the global wave of inclusive education in the mid-1990s, students with disabilities in seven Iranian provinces attended classes in inclusive schools (UNESCO 1994: 11) as a pilot project of inclusion in 2007. Inclusive education has not yet been implemented across the entire country. Today, students with intellectual disabilities are still educated in the "special" schools, and a number of students with physical disabilities encounter various problems in inclusive schools which are not yet fully accessible. Yet, in comparison to past decades, a typical student with physical disability is now more welcomed in "regular" schools and universities in Iran, demonstrating that although a long way is ahead to a full "inclusive education," the achievements so far are considerable.

Legislative Achievements

According to documents from the Iranian parliament, the 1955 General Conference of the International Labor Organization (Geneva) and its recommendation concerning Vocational Rehabilitation of the Disabled 4 initiated the first legislation in Iran directly addressing the vocational rehabilitation of the disabled that same year. 5

As part of the Islamic revolution in 1978, the Constitution of the Islamic Republic of Iran required the government to provide "social insurance or other forms of security for retirement, unemployment, old-age, disability, [infirmity, inability to work], lack of guardianship, being a wayfarer, accident, and the need for health and treatment services and medical care" (Article 29). 6 The government was also required "to provide such insurance and economic protection to each and every citizen of the country, in accordance with the laws and by drawing on national revenues." Consequently, after the Islamic revolution a number of disability acts were ratified, most of which were about disability payments, such as the Act of Legal Payments to the Mental Sick Working in the Professional Workshops or Services (1986); as well as the Act of Permanent Payment to the War-Zone Immigrants and those Killed or Disabled in the Mine Fields (1993). While the Act of Retirement of Disabled Veterans of the Islamic Revolution and Iraq-Iran War and the Other Disabled (1988) addressed disability retirement, the Act of Tax Exemption of the Private Section Institutions Supporting the Disabled and their Rehabilitation (1995) encouraged the private sector to deal with disability as well.

Iranian disability acts culminated in the ratification of the Comprehensive Act of Supporting the Disabled (or Disability Protect Act 7 ) by the Islamic parliament in 2004, which is considered as the first major Iranian legislation for persons with disabilities. The Comprehensive Act of Supporting the Disabled obligates the Iranian government to provide resources to meet disability needs and rights. Its sixteen articles emphasize the accessibility of public buildings and venues; improving rehabilitative and vocational services; financial waivers for the disabled users of recreational, sportive and transportation facilities; disability insurance; employment opportunities; free education for disabled students and candidates; housing loans and facilities; and allocating two hours per week to disability programs on national television. 8

Although the act is considered as a huge achievement for the Iranian disability community, its Achilles' heel is the lack of monitoring its full implementation. In fact, no sanctions or penalties have been anticipated for the violators of any of the sixteen articles of the Comprehensive Act of Supporting the Disabled; however, negotiations between disability organizations and the members of parliament and governmental experts led to a revision of the act in 2013 to ensure its entire monitoring and compliance.

The other event that is regarded as a triumph for the Iranian disability community is the ratification of the UN Convention on the Right of Persons with Disabilities by the Islamic Consultative Assembly (parliament) on October 2009, although the Islamic parliament conservatively emphasized that: "…with regard to Article 46, the Islamic Republic of Iran declares that it does not consider itself bound by any provisions of the Convention, which may be incompatible with its applicable rules." 9

Growing NGOs

Marking the formation of the first Iranian non-governmental disability organization or NGO, the Iran Society of Deaf People Family was established in 1972. 10 A few years later, the Voice of Iranian Disabled Organization was formed in 1978 11 and after ten years, the Organization of Supporting the Intellectual and Physical Disabled was founded in 1988. 12 The number of disability non-governmental organizations increased dramatically from 3 in 1990 to more than 200 in the 2000s.

Nowadays more than 300 disability NGOs are active throughout the country, a number of which are still following a charity path while some others, like Baavar (Belief) Disability Association (2004), pursue disability rights with a cultural approach. It seems that Iranian disability NGOs are becoming socially and politically more influential. They attempt to gain a role in policy making through lobbying with members of parliament and the administration. Representatives of a number of disability NGOs not only participated actively and effectively in drafting the Comprehensive Act of Supporting the Disabled (2004), but also forced the Islamic Consultative Assembly (the Iranian parliament) to ratify the UN Convention on the Right of Persons with Disabilities in 2009. A number of NGOs are also lobbying to full implementation of the Comprehensive Act of Supporting the Disabled.

This brief history suggests that the Iranian disability community has been pursuing disability rights in different aspects during recent decades. Although disability rights are persistently and constantly being advocated in Iran, disability studies, or the theoretical arm of disability rights movement (Snyder, 2006), has not been formed and developed systematically in this country. In other words, while the disability rights movement is happening in Iran and people with disabilities have gained noticeable achievements in such areas as education, legislation and NGO activism, disability literature has not yet been established as an academic field of study in this country.

Methodology

I carried out this research by using a qualitative open-ended survey. I limited the participants to those either educated in the social sciences and humanities or well-informed of disability activities in Iran. I then selected 10 respondents, 7 (70%) of whom had earned a Ph.D. or M.A. degree in social sciences and 3 individuals (30%) of whom had a high school diploma. 40% of the participants (4 individuals) were disabled and 60% (6 individuals) had no disability. 50% of the respondents (5 individuals) were men and 50% (5 individuals) were women.

The questionnaire was sent through mass emailing to the participants, containing one main question: What are the requirements to establish an Iranian disability studies? To make sure that the respondents had enough information about disability studies, I provided an introduction on the nature and the history of disability studies in Western countries for the respondents. 13

Results

Rudimentary Resources

Respondents focused on two areas in terms of rudimentary resources: human resources and financial resources.

According to the responses, researchers, professors and students should primarily be interested in disability issues to get involved more systematically into this field of study:

"Students and scholars should be willing to work on disability issue… They should like this field and eager to work on disability."

"This is a field that demands your love and affection to keep on working constantly."

Respondents believed that disability should find its proper place among the social sciences and humanities as a significant issue:

"As far as I remember, disability has been traditionally ignored and seemed as an unimportant issue to investigate scientifically in Iran… We need our interested professors, students and researchers to revise their point of view. They have to see disability as an important issue."

"…Disability is as significant as the other issues in humanities and deserves to receive the scholars' attention."

The participants argued that disability needs to be studied by social sciences scholars rather than medical researchers:

"All I have seen in the Iranian disability research is medical articles from doctors and physicians whose attempts to improve the disabled people's lives are appreciated; yet, it is not enough."

"I am sick of medical interventions, even in studying disability. Tell me that this paradigm is going to change… Tell me that we are going to hear from our social sciences talking about disability."

"This field should be studied from the humanities perspectives rather than medical approach."

The participants believe that Iranian disability scholars should concentrate on diminishing the stigma associated with disability in Iranian society:

"Disability remained ignored academically, because of the stigma that comes with it… Even our scientists and scholars have been influenced by that stigma… This is why they don't want to study disability… They should attempt to diminish the stigma of disability to improve the lives of disabled people."

"Medical attention to disability both helped and hurt disabled people… Doctors and physicians reinforced the stigma of disability, and now it is the others' turn to ameliorate it, to weaken that stigma by their studies."

According to the respondents, knowing the English language is a prerequisite for the scholars engaged in disability discussions and that translated materials are necessary:

"Every time I am surfing on the Internet, I wish I could read the English articles on disability … I think all of the Iranian researchers should know English language."

"Reading and translating the original texts of disability into Farsi and vice versa is necessary for establishing an Iranian disability studies."

"Let's invite those researchers with high English skills to join the Iranian disability studies."

"The Iranian disability literature would not be locally and globally recognized if the Iranian scholars do not know English language."

The participants believed that financial resources are vital requirements to support studies on disability:

"You need money to do research. It is almost impossible to form teams of researchers either at a research center or at the universities with no financial back up."

"A huge investment is needed to establish an Iranian disability studies within the universities and research centers."

"No money, no research. Do not doubt!"

Disability Literature

According to the participants, one of the major requisites to form an Iranian disability studies is access to disability literature. The participants of my study believed that Iranian disability studies scholars need to form a bank of materials to centralize Farsi and English literature:

"We have to centralize the materials by establishing a bank of disability literature."

"To get informed of the quality and quantity of the works on disability, including materials in Farsi or English, we need to get all the available materials together in one place."

According to the respondents, both English and Farsi contents on disability should be provided and kept in the bank of literature:

"To feed the Iranian bank of disability literature, researchers should carry out and publish the studies in both Farsi and English languages."

"Besides our local studies, we need to translate English research to add to our reservoir of literature."

Political Prerequisites

The participants mentioned that political steps, such as improving diplomatic ties between Iran and the West, especially Iran-US relations, as well as removing the sanctions on Iran, would lead to the development of academic relations between Iranian disability scholars and their corollaries in other countries:

"Although we have had many academic achievements in Iran, political challenges kept us isolated from the academic world, especially in disability research."

"I think if diplomatic relations develop and sanctions are removed, academic cooperation between Iran and the western countries (particularly the USA) will improve as well. It will impact on our disability activities."

"As far as we are still under sanctions, we would not find more opportunities to exchange our disability knowledge with the world."

The respondents argued that mutual relations between Iranian scholars and their international pairs are essential to form an Iranian disability studies:

"We need to get assisted by our international colleagues who are more experienced in this field. Exchanging scholars and holding conferences seem helpful."

"How many international conferences on disability and social sciences have we ever hold in Iran? It has been all about disability and medical sciences… The doors should be opened by both sides."

Discussion

Montero (1998) argues that people with disabilities fight for different things in different countries. Accordingly, when disability studies emerged in the 1980s in the U.S. (Snyder, 2006), Iranian disabled people, as well as the non-disabled population, were struggling to survive the war against Iraq (1980-1988). Historical and political interruptions such as the co-incidence of the Iraq-Iran war with the advent of disability studies in the 1980s, Iran-USA political challenges and the sanctions on Iran, along with some other reasons, hindered Iranian scholars from establishing a strong theoretical account on disability.

As noted above, the aim of this study was to investigate the requirements to form an Iranian disability studies. Accordingly, three main themes were identified: rudimentary resources, disability literature, and political prerequisites. Two sub-themes derived for the theme of rudimentary resources: human resources and financial resources. All of the respondents believed that researchers, professors and students should get involved in Iranian and global disability studies. In order to do so, scholars must be both interested in the disability field and skillful in the English language. In fact, the respondents referred to language barriers which prevent most of the Iranian scholars from reaching out to the early sources of disability studies. Since so much of the disability literature has been born and developed in Anglo-Saxon countries, it is necessary to know the English language to contribute to its global content. Poor English skills not only limit the access to the original materials, but also restrict translating those materials into local languages such as Farsi. In addition, participants argued that Iranian scholars and disability activists might find it difficult to connect to their international peers if they are not able to communicate in the English language.

According to the respondents, since disability has traditionally been considered an insignificant issue, even scholars have ignored it in their academic activities. This is consistent with Jaeger and Bowman (2005) who claimed that ignoring is a prevalent social reaction to disability.

As result, respondents believed that Iranian scholars and researchers need to place disability in the heart of their discussions in the social sciences and humanities. To date, the domination of the medical approach has hindered disability from receiving more scholarly attention. Most of the Iranian schools of rehabilitation and related research centers, as well as students and scholars, have always dealt with disability only from a medical point of view to 'fix' (Goodley, 2011) disabled people. In fact, little research has been carried out to examine disability from social, psychological, economic and political perspectives in Iran.

The stigmatization of disability in Iran, like many places in the world, is widespread and causes the rejection and exclusion of disabled people from every aspect of social living, including academic attention. The respondents argued that the establishment of Iranian disability studies might assist in diminishing the stigma associated with disability.

The participants also claimed that financial resources must be granted to research centers and universities to enable them to work systematically on disability. Even the academic libraries need extra budgets to provide access to the global disability literature. As Shih & Wu (2011) argue, eastern libraries cannot afford to purchase a huge range of Western academic journals. The libraries of Iranian universities and research centers, destitute of disability studies journals and references, need financial aid.

Based on the respondents, forming a bank of disability literature is a prerequisite to establishing an Iranian disability studies. Iranian researchers and scholars should produce disability materials at least in two languages, Farsi and English.

It seems that the diplomatic break of the USA and Iran since the 1980s, followed by imposing sanctions against Iran to isolate this country economically, politically and academically, has hindered Iran from joining the global disability studies. In fact, the restrictive rules derived from sanctions against Iran have limited mutual activities between the social scholars of Iran and the USA.

Narges Bajoghli, a PhD candidate at New York University, has recently reported how her research was put on hold for several months by the Department of Treasury's Office of Foreign Assets Control (OFAC) because of sanctions:

"But I was dismayed to see that academic researchers in the social sciences and humanities were put under such scrutiny by the Department of Treasury. Iran has remained closed-off to the US for the better part of 35 years, and this policy by the Department of Treasury seemed counterintuitive, and frankly, detrimental. Although the current sanctions against Iran include an exemption for 'journalistic activities,' OFAC has not issued an exemption for academic exchange and research trips, and advises all academics to apply for a license… There should be an exemption in the OFAC regulations for academic research, just as there is for journalistic activities, otherwise the current policy unfortunately limits the access to and exchange of information between scholarly communities. This is contrary to the spirit of the US-Iran nuclear deal. As researchers, we should not be put in the position to fend for our right to conduct academic and scholarly work with both the governments of Iran and the US. As the relationship between these two nations takes a turn for the better, we should open up the academic exchange as well." 14

It is expected that any improvement in political relations between Iran and the USA, especially removing the existing sanctions on Iran, would cause expanding academic collaboration between Iranian disability scholars and their international peers. Mutual activities, such as scholar-exchange programs and holding conferences on disability would be assistive in forming an Iranian disability literature. "Advancing the rights of persons with disabilities: A US-Iran dialogue on law, policy, and advocacy," published in 2011, is an examples of how the scholars of two countries can use their potentials to initiate a dialogue on disability.

Suggestions

As Priestley (2001) notes, international perspectives of disability have rarely been cited in the global literature of disability studies. For instance, Iran was mentioned only twice in the Encyclopedia of Disability 2006), and Persia was completely absent in the chronology (pages C1 to C27 in each volume), as well as the volume on the Ancient World (vol. 5). It is necessary to investigate the status of Iran in the global disability studies to explore the reasons for ignoring this country in the international trend of disability studies.

On the other hand, the West has theoretical influence over the scientific world, a process which Alatas (2003) named the "academic neo-imperialism" or "academic neo-colonialism" in the postcolonial period. Although the nature of disability is global (Goodley, 2011), disability studies has remained mostly confined to the borders of the wealthy nation-states whose scholars seemingly have the least information about disability in developing and under-developed countries (Albrecht and Bury, 2001). Consequently, Western disability scholars have not collaborated with their Iranian corollaries regularly. More research should be carried out to find out other possible reasons for the disconnect between Western disability scholars and their Iranian corollaries (for example, different framings of disability).

Moreover, as Grech (2012) suggests, disability in impoverished situations results in a number of problems that Western disability studies has never mentioned. Global disability studies needs to be more familiar with the local, traditional, cultural, sociological, political and economic characteristics of the societies out of the Western world to be able to address their disability experiences more precisely and include their histories and accounts in the global disability studies. This attempt might also help developing countries like Iran to form a more comprehensive literature of disability.

In September 2013, President Obama and President Rohani had a phone conversation to trigger diplomatic negotiations after 30 years, which is predicted to make positive effects on different aspects of lives of Iranians. More research should be carried out to investigate whether and how the political changes would possibly impact the Iranian disability studies locally and globally.

References

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Copyright (c) 2014 Negin H. Goodrich



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