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Fighting the taboo of disability in the Arab world

December 3, 2016 at 12:28 pm

To those familiar with Arab culture, it is no secret that the topic of disability remains a taboo. When speaking about disability in the Arab world, generally, the topic is either met with silence, ignorance, or able bodied people expressing their sympathy. This does nothing short of continuing the stigma and perpetuating ignorance surrounding disability. What’s worse is that it silences the very debates that are crucial to bring an end to discrimination against disabled people in the region and the rest of the world.

British-Iraqi Raya Al-Jadir knows only too well the struggles of those with disability. Born with the degenerative muscle wasting condition Ullrich congenital muscular dystrophy, Raya has used a wheelchair for the majority of her life. In an effort to raise awareness of the plight of those living with disability and to give them a platform to share their experiences she helped launch the Arabic language version of Disability Horizon, a UK-based disability lifestyle publication.

“I joined Disability Horizons nearly three years ago as a writer, but it wasn’t until early this year that I found it also existed in Spanish and Italian, so I asked the founder if an Arabic version could be set up,” she says.

“Considering the large demographic in the Middle East, the founder saw potential for an opportunity to gain an Arabic speaking readership, so he agreed to take on the project but only if I ran the website. I was stuck; I had to take it on.”

“Initially I found this scary and I was reluctant but I wanted to rise up to the challenge because I couldn’t imagine anyone else would do it with my vision.”

While researching her new endeavour, Raya came across two websites which claimed to offer exactly what she was hoping to create however upon inspection she noticed that they either “exploited disability for political purposes” or centred around the experiences of one person. Raya wanted the magazine to be about the entire disabled community; discussing their issues, struggles and achievements rather than just writing about their “success”.Born in Mosul, Iraq, Raya started Disability Horizons Arabic as a personal project. During her time in Iraq she found accessibility significantly difficult and used a tricycle instead of a wheelchair to get around and had a nanny to assist her at school. Growing up, her disability was considered a taboo with a large portion of society holding ignorant attitudes towards her and other disabled people. This not only affected how people treated her, but also meant little was done to ensure those with disability were able to access services in the city.

Raya in Mosul, Iraq, where she used a tricycle to get around

Raya in Mosul, Iraq, where she used a tricycle to get around

While things are beginning to improve slowly, there still remains an overt stigma around the topic of disability and mental health in the Middle East. To a large extent, it isn’t the fact that the topic itself isn’t spoken about, but the way it is addressed is heavily policed by social norms and conducts.

Discussions on the topic are increasing, however only in a paradigm that increasingly praises disabled people for breaking boundaries and making landmark achievements, Raya explains.

While she acknowledges the need to raise awareness of the accomplishments of the disabled community, especially to create role models for disabled children, Raya believes that the way the accomplishments are presented in the mainstream media can be counterproductive and patronising.“It’s not our job to inspire people and make them feel better about their lives, nor do we need to prove our worth or justify our existence by being inspirational,” she explains. Her opinion remains a controversial one; the counter-argument that it is in fact positive to place immense focus on the achievements of individuals in the disabled community holds dominance in the Arabic media.This is why rather than sensationalising the concept of disability, or just building a website defining and explaining the many forms of disabilities that exist, Disability Horizons Arabic seeks to be a lifestyle publication, that is apolitical and gives the many opinions within the disabled community a voice to discuss, debate and educate. This automatically becomes a platform for able-bodied Arabic speakers to educate themselves and bring forward change. Despite the fact that Disability Horizons Arabic is apolitical and caters for everyone regardless of their age, gender, health, race and religion, current affairs in the Arab world is still discussed, but to the context of its effects on those with a disability and those who are care for them.

“Many still believe that criticising the social structure that suppresses the rights of disabled people is unpatriotic and fear that speaking out means criticising the country,” Raya says. “‎We need to generate an honest conversation led by disabled people into how we can progress and be equal members of society. The problem I have with many organisations and charities in the Middle East is that most of them are not user led and instead of challenging the obstacles, they encourage disabled people to adapt or work within them.”The website also addresses debates surrounding the disabled community in the Arab world. One example is that of Egyptian couple Mahmoud Safwat Abdel-Bari and Dina Tarek Saad who both have Down’s syndrome. Their decision to marry opened up a number of discussions on the public platform of the website. Many branded the marriage “immoral” because it will “continue the spread of the gene” should they have children.

Such attitudes are also often expressed by family members of disabled people, while others would not consider marrying someone with any form of disability.

“I have heard of many people hiding their daughter or son’s condition in case it stops them or their siblings getting married,” Raya explains. “We need to change social attitudes first and foremost then target the bigger challenges such as infrastructure, the ‎right to work, education, medical health and greater participation in society.”