Changing Perceptions of Disability and Disability Rights in Iran

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An estimated eleven million Iranians have some form of disability, ranging from hereditary disabilities to those caused by the Iran-Iraq war, state violence, or high levels of air pollution in major cities. Though some laws provide de jure protection to disabled Iranians from discrimination and provide welfare benefits, violations of rights to accessibility, education, employment, and integration are rampant. Attempts to promote the rights of people with disabilities are often grounded in a charity model that undermines the disabled’s own leadership, agency and independence.  Despite the fact that disability is an issue affecting every Iranian family, school and workplace, Iranians – and even civil society leaders – rarely discuss the issue openly, much less organize openly and constructively for change.  Tavaana has tried to galvanize grassroots action toward changing perceptions of disability and broaden respect for disability rights in Iran through a two-pronged combination of 1) scholarly/policy/advocacy focus on disability rights and 2) broad based public education, raising awareness via satellite TV and social media.  Increased and more progressive civic discourse about people with disabilities and disability rights has been one important outcome of our efforts. 

 

Describing the context in Iran, members of the Tavaana community have highlighted the need for initiatives to improve the status of individuals with disabilities and to promote greater awareness and appreciation of their roles as citizens. As one wrote, “Unfortunately, the disabled and elderly aren’t considered part of society in Iran… nothing has been done for their welfare - whether in terms of city planning, train and bus lines, or private toilets.” Another noted, “Before I left Iran, I never knew and was never cognizant of the oppression we subject the disabled community to in Iran… here, they do not install an escalator for pedestrian overpasses but instead install an elevator so that you can gain access with a wheelchair. Buses have designated spaces for the disabled and for those in wheelchairs. It was only when I went abroad that I realized I had never seen anyone in a wheelchair take the bus in Iran.”

 

To bring attention to the status, rights, and needs of people with disabilities – people often not visible in Iranian cities and towns because of the lack of public services and inclusive city planning -- Tavaana developed exclusive civic education resources tailored for the Iranian context.  These fill gaps in education, media coverage and societal understanding with culturally bound, timely approaches that incorporate on the ground civil society organizing, policy and discursive developments in Iran. In August 2014, we provided some live webinars on “Disability Rhetoric,” taught by Saeed Sabzian, a young scholar who has devoted his research focus to the issue while also working from Canada with the disability rights advocacy movement inside the country. In this two-part webinar series, Sabzian engaged Tavaana students to show how the rhetoric of tyranny, intended to foster fear and shame, is parallel to that used for describing disability as a fearful and shameful thing, concluding with a culturally bound argument about disability as a socially and politically constructed identity, rather than merely a medical condition. Building on the success of these two seminars – which were also broadcast to Iranian society en masse via satellite TV as well as social media -- Tavaana offered more webinars examining the representation of disability in cinema and charting a path to move beyond self-congratulatory pity into active engagement and advocacy for and with people with disabilities.  On these, Sabzian worked with Jay Dolmage, a recognized disability studies scholar who has devoted his career to the representation of disability in cultural productions such as film for their capacity to disempower, isolate and simplify the identities, lives and aspirations of people with disabilities. 

 

Given the challenges of overcoming the charity model of disability in Iran and the construction of disability through the Persian language – one fraught with identifiers that connote vulnerability, marginalization and shame – we at Tavaana have been deliberate in the rhetoric we choose to frame our open access educational resources. We have employed a discursive methodology on social media – reaching 43 million users – that consistently replaces demeaning, patronizing and fatalistic descriptions of people with disabilities with first person narratives using hopeful, affirming, realistic vocabulary that nevertheless bring routine attention to the specific needs of people with disabilities from all walks of life and worldviews living throughout the country.  Whenever possible, we amplify the voices of people with disabilities rather than have people without disabilities discuss them as the other.  On a weekly basis, we bring the story of at least one person living with disability to focus.  Often these personal stories are an inspiration to not just others with disabilities but all Iranians.  Rarely do these Iranians feel sorry for themselves. 

 

In the summer of 2016, Tavaana featured a disability-focused lesson in our Minorities and Politics of Culture full-length e-course, situating the disability rights movement in Iran and globally with those for gender and racial equality, exploring the difficulties of defining concepts like “disability” and “normal.”  After completing the e-course, one student commented on having gained “an understanding of the role of public policy in social or cultural problems and the neglect of the disabled.” Another also conveyed a desire to take action: “How painful it is to see the facilities the world provides to the disabled while Iran lags behind with its Koranic law! This is a clear violation of the rights of a person whose disability prevents them from choosing a career they like. The state of the buses and roads is also scandalous. Why don’t the people of Iran together organize a campaign to defend the rights of disabled people?”

 

Our Persian/English library features annotated materials on disability rights and public policy for integration and empowerment of people with disabilities.  These sources include the International Labor Organization and the United Nations, providing hard guidelines for effective employment legislation, examples of successful empowerment of people with disabilities, and language on the rights of people with disabilities to which Iran is already a party. We push these out on social media, though we need in the future to translate more key resources to Persian and also to form partnerships with global disability rights organizations to leverage their curricula and lessons gleaned from pushing for policy change in other countries with severe disregard for the rights of people with disabilities. 

 

We have effectively used satire to bring attention to this issue through our exclusive cartoons by Mana Neyestani.  These often illicit thoughtful, provocative commentary from our community and are shared well beyond the community of human rights activists and others already mobilized toward civic action. We are publishing in November 2016 an exclusive case study on the Deaf President Now! movement at Gallaudet University, in which the deaf community successfully pressed for self-determination, representation, and empowerment .

 

Alongside the regular, accessible focus on disability on our social networks, Tavaana has contributed to intellectual and policy discussions about disability, notably through Sabzian’s Biopower: Discussions on Disability and Social Change in Iran. This full-length, Tavaana exclusive e-book brings home the disability rights movement for Iranian readers, introducing in Persian the history of the disability rights movement in Iran and examining disability as a discursive construction that has resulted in the social repression of individuals with disabilities. Biopower employs philosophical, political, and cultural arguments to analyze the repressive laws, cultural artifacts, and prevalent negative mindsets that have adversely impacted the lives of people with disabilities. In the book, Sabzian calls for a collaborative national endeavor to recognize the individual, social, and political rights of people with disabilities and argues for changes in laws, employment policies, urban planning, transportation systems, public spaces, and education in order to empower all Iranians.

 

Since its publication in May 2015, the text has received prodigious acclaim and has been featured by Radio Farda, Raahak, Shahrvand, and its online edition Shahrgon. On the book's impact, Iranian journalist Ehsan Abedi writes: "Biopower can be counted as one of only a few Persian-language publications to take up the issue of disability from the perspective of human rights and social justice...The beneficial component of Biopower happens to be that it examines the social circumstances of disabled individuals in Iran, seeking out the roots of injustice in urban planning, official rhetoric, hiring and educational laws, and so on. This keeps the book from becoming a mere regurgitation of experiences outside Iran. As a result, we can be sure that Biopower reflects and is pertinent to Iranian society - a society in which over eleven million people are disabled."  Members of the disability rights movement in Iran have taken important excerpts from the ebook and disseminated these in concerted fashion on their Telegram channel. Others from the movement are presently making an audio version of the book voluntarily, to facilitate access for the blind.   

 

Early forays into discussing disability rights on Tavaana’s social media illustrated exactly the patronizing attitudes that must be overcome for the full empowerment of people with disabilities. Users commenting on a Facebook post about children with autism and Down’s syndrome asked whether these births could be prevented. Rather than protesting the value of all human life and neuro-diversity, other users responded that children of such births are “angels” or “harmless.” One user commented regarding the importance of actors with disabilities being hired to portray characters with disabilities, “Then maybe only murder victims should play murder victims! This gentleman’s rationale is very strange.” Signs of change soon began to sprout, however, even on the very same post: another user rejoined that “it would be much better for disabled people to be empowered, rather than us just letting our hearts break for them!” Another wrote that it is strange people feel pity for people because of their disabilities “while they live in a world where their disease is the least of their problems.”

 

A breakthrough occurred in a series of posts on deaf education: users rallied to leading teacher Jabbar Baghtcheban, head of Iran’s first deaf kindergarten, and deaf-blind Baghtcheban student Nazanin, whose joy in communication shines onscreen. After Tavaana featured the story of an impoverished family with only one wheelchair to share between four people, the story went viral and users rallied to support this family and others gain greater freedom of movement and independence through wheelchair donations. Another post amplified the voices of people with disabilities speaking out against hurtful language, leading one user to declare that they were leaving those words behind and apologizing for the harm they had done. Through Tavaana posts, Iranians saw people with disabilities addressing Parliament, working independently in factories, and breaking athletic records, providing a counterbalance to common narratives of disability as limiting or infantilizing.

 

Other Facebook users shared their personal struggles for empowerment and integration of people with disabilities in Iran, taking advantage of the rare safe space created to move others with their testimonies:

“Three months from now, I am going to marry my beloved (who is wheelchair-bound). We have known each other for four years, but my family was initially opposed and looked at our relationship harshly. When they saw, however, that my 28 year old fiancé (who has used a wheelchair for eight years) is a government employee, has his own business, exercises, etc… they slowly realized that the important thing is his emotional health and not his physical ability. Even so, we plan to leave Iran after we get married because conditions in this country are not suitable.”

Another reflected on the structural segregation of children with disabilities, commenting,

“My brother is disabled. The health service won’t give him a wheelchair on the pretext of budget constraints, and the classes and curriculum for him are very remedial. My brother can’t study with the normal kids and hasn’t been able to continue his education because none of the schools are wheelchair accessible - and even if that was fixed, what about our streets and sidewalks?”

 

By formulating disability rights as human rights and disability as a socio-politically constructed identity, then sustaining an online field for open discussion of Iranians’ interaction with and experience of disability, Tavaana has laid the framework for promotion of the human and civil rights of Iranians with disabilities and recognition of their human dignity and agency. While it may take years before tangible, broad-based change – in policies, city planning, education, the workplace, family life and more -- takes place in Iran, Tavaana has planted seeds in the form of newly conscious, empathetic members of society, along with the resources for their continued development toward civic action.   

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What Tavaana Students Have to Say

This is the first time I have taken part in Tavaana’s courses. I am very pleased to have done so, because, along with the class itself being at a relatively high level, all of the subjects are explained very clearly and plainly. That will make it useful to most users.
- Shahla, Advanced Digital Safety course graduate