The Outpost, Issue 2 – Summer 2013
Al-Aqaba, a tiny Palestinian village of 200 souls in the verdant hills of the northern Jordan Valley, almost feels like the end of the world. The road from the city of Jenin, marking the northern-most tip of the West Bank, leads south-east through ever-smaller communities until it reaches Al-Aqaba. From there, a checkpoint guards the road down into the vast depression of the Jordan Valley. Beyond is the playground of the Israeli army, where only Bedouin sheep and goat herders dare to stray.
And yet, despite the military siege, Al-Aqaba is a model of access for the disabled, probably more so than any other Palestinian community in the West Bank. All public spaces, from the mosque and council offices to the small herbal tea factory, guesthouse, and a kindergarten that serves children from much larger neighboring communities, have ramps alongside or instead of stairs.
The reason is to be found in the figure of Al-Aqaba’s mayor, Hajj Sami Sadeq. He has been using a wheelchair since the age of 14, when a bullet from an Israeli soldier lodged in his spine, paralyzing him from the waist down. Sadeq has not only ensured that all public buildings are wheelchair friendly but has given the village a stature way beyond its size. Through friendships forged with the political leadership in Ramallah, and alliances with an array of international organizations, he has fortified his village against Israel’s ethnic cleansing policies in this part of the West Bank. His latest project is to build homes – in defiance of Israeli military orders – to foster a “right of return” for hundreds of families forced out of the village by the army. For Al-Aqaba’s mayor, self-empowerment and communal empowerment have gone hand-in-hand.
Forced into invisibility
The case of Sadeq is a useful counterpoint to the oft-repeated criticism of Arab societies that they force disabled people into invisibility, denying them access to the public sphere and, because of the shame often felt by their families, stripping them of self-confidence and self-esteem. Sadeq’s case is far from the norm in Arab societies. He typifies the especially ambiguous aura around disability among Palestinians. But he also illustrates that cultural attitudes towards disability are far from fixed and could change rapidly with a greater emphasis on education and awareness-raising.
The view of disability shifted among Palestinians during the two intifadas (uprisings), when tens of thousands of men, women and children were left with permanent injuries from Israeli military operations. Cultural attitudes that had tended to associate disability with a curse or genetic failing began to erode.
“Because these disabilities were connected to resistance efforts against the occupation, disability came to be seen almost as the mark of a hero,” says Rima Canawati, a director of the Bethlehem-based Arab Society for Rehabilitation, a national center for the treatment of disabled people.
That perception was evident in a public event held in Gaza City in February when large crowds came out to celebrate a mass wedding for more than 100 disabled couples, many of them victims of Israeli attacks on the coastal strip. It was no coincidence that the wedding was staged in the Square of the Unknown Soldier. The strength of the disability movement among Palestinians has also grown with an influx of both donor funds and advisers from overseas. And yet, Canawati says, despite greater acceptance, the situation for Palestinians with disabilities has hardly progressed in terms of a much-needed paradigm shift.
Not just a medical problem
Like elsewhere in the region, disability is treated chiefly as a medical problem to be fixed with the provision of basic services – wheelchairs, hearing aids, screen readers, and so on – rather than recognizing the rights of disabled people to be included as equals within their societies. That requires a dramatic change in societal attitudes and political priorities. A wheelchair is a minimum requirement for someone paralyzed, says Canawati, but it won’t liberate them and integrate them into society if the public sphere is not accessible to them and prejudices persist among teachers, employers and officials. Both the education system and employers need to make the necessary adaptations so that disabled people can fully participate.
One sign of the depth of official denial in Arab states is the failure to record even the most basic information of all: the number of disabled people. While in Europe and the United States reported disability levels range from 10 to 15 percent of the population, most Arab countries say no more than five percent are disabled. Disability organizations accuse the Arab governments of mirroring the invisibility imposed on disabled people by the wider society.
Low levels of disability are all the harder to accept given the specific social, cultural and economic problems in many Arab countries that can be expected to increase the numbers significantly. One is the continuing cultural prevalence of marriage between close relatives. Consanguinity is known to increase the risk factor for a range of genetic diseases, leading most commonly to mental health problems and to diseases that cause visual or audial impairment.
Another is the lack of physical infrastructure in many poorer Arab countries, whether unpaved or badly maintained roads, a lack of sidewalks, lax enforcement of traffic laws or safety regulations in public places, the failure to provide play areas, forcing children into dangerous public spaces, and so on. As a result, the number of accidents is assumed to be much higher than in Western countries.
Poor medical services in many regions, weak or non-existent health education campaigns, and the difficulty of providing clean drinking water to some areas also increase the danger of crippling disease, especially among the very young. And finally, many Arab states are or have been the sites of violent conflicts that have led to large numbers of injuries. The recent Arab revolutions, as well as the ongoing civil war in Syria, have generated their own additional casualties.
Re-educating the old guard
Ola Abu Alghaib, Handicap International’s Middle East disability rights coordinator, says the Arab world is not unusual. It’s simply that rapid changes that took place in Western societies in the last couple of decades, aided by plentiful resources and strong education systems, have been replicated in Arab societies at a much slower pace.
Much of the problem, she says, can be attributed to an old guard of doctors, therapists and social workers who have a vested interest in maintaining a view of disability as an exclusively medical problem. She says the continuing strong hierarchical political and social structures of Arab society have tended to concentrate power in the hands of a small number of “experts” resistant to change.
However, she adds, there are reasons for optimism, though she believes change will continue to be gradual. First, 14 of the 22 Arab states have so far ratified the recent UN Convention on the Rights of Persons with Disabilities, committing them over the next few years to the kind of fundamental changes Canawati outlines.
This success followed increased efforts by the UN to raise awareness of disability in the region: in 2003, Hissa Al-Thani of Qatar was appointed the special rapporteur on disability, a post she held until 2009; and in 2004 the UN launched the Arab Decade of Disabled Persons.
Al-Thani raised the pressure on Arab governments, accusing them of inertia. Many states have drafted laws on disabilities, but their provisions are rarely enforced. Armed conflicts in places like Lebanon, Palestine, Iraq, Syria and Sudan have increased rates of disability, she says, but at the same time giving governments an excuse to postpone reform while other issues are prioritized.
Meanwhile, in the oil-rich Gulf states, where resources are aplenty, the governments have tended to adopt an approach that buys off disability organizations with money for services without addressing the larger issues of rights and accessibility. “Disability groups have so far failed to establish their independence from government,” Canawati says. In the still-patriarchal Arab societies, she adds, disabled women pay the highest price. “Women with disabilities do not stand a chance of rehabilitation, education, accessibility or any number of services available to men with disabilities. They are not considered marriageable and often their nondisabled siblings are also overlooked in marriage by reason of association.”
Second, the Arab revolutions, notes Abu Alghaib, had an impact on the popular imagination, especially in Egypt, where disabled people took an active part in the Tahrir Square protests. “The revolutions gave people with disabilities, as well as people more generally, a tangible sense that for the first time they could effect change through their own collective actions.” Uncertainty about where the revolutions are ultimately headed, plus political instability, has slowed progress, however, meaning that deeper reform still looks far off.
One of the potential strengths of the disabled movements in many Arab countries, paradoxically, are the large numbers they represent. In Lebanon, for example, the many casualties from the long years of civil war led to a strong disability movement that at certain times has managed to become a political force, particularly in the peace movement.
According to Nawaf Kabbara, the Beirut-based head of the Arab Organization of Disabled People, which has branches in 15 Arab countries: “Disabled people are not passive. They are very active, and they can be politically very important in the decision-making.”
However, Abu Alghaib warns that even in Lebanon a lack of unity among disability groups and the complex sectarian terrain of the political landscape meant there have been few achievements so far for the disabled at the policy-making level.
An important third factor is globalization and social media, which have held out a promise of improvements in technical fixes and communication that can empower disabled people and allow them to learn from others’ experiences, lowering borders between the Arab countries and with the West. This has been particularly evident in the Gulf states, where most households have access to the latest technology.
Abu Alghaib concludes: “We must remain realistic. Change won’t come overnight and demanding too much too soon doesn’t help. If people don’t yet have wheelchairs or medicine, then this has to be the priority for struggle, before we demand greater political participation. Basic needs have to be met first.”
Abbass Abbass: Turning disability into ability
Abbass Abbass has little interest in being the recipient of charity, either in his personal life or as director of a Nazareth-based organization, Al-Manarah (The Lighthouse), promoting the rights of disabled Palestinians inside Israel.
“Empowerment” is his watchword. The 36-year-old lawyer turned self-described “social entrepreneur” has practiced it in his own life and now strives to encourage others – whether disabled or not – to recognize its value.
“In the Arab world, as elsewhere, disabled people are seen too often from a very narrow angle: as people who lack potential, who can’t study, who can’t earn a living or create a family. My life is about becoming a model for my community that says none of that has to be true.”
Abbass, who suffers from a degenerative eye disease that has been making him progressively blind since childhood, says his family had always encouraged him to believe he was capable of any achievement.
He was the only disabled child in a private Nazareth high school where the teachers offered support. He then went on to study law at the Hebrew University in Jerusalem with the assistance of “readers”, people who recorded textbooks on tape for him. But as he stepped out of this privileged environment, the harsh reality of the suffering, marginalization and prejudice faced by most disabled people were revealed to him.
One experience shaped his understanding of the nature of the challenges faced by disabled people. He had specialized in human rights law and applied for an internship with the most prestigious human rights organization in Israel. He had not mentioned his disability in the application. The interviewer was stunned into silence for several moments when Abbass appeared, and then asked him a series of irrelevant questions. “He concluded by telling me: ‘This job wouldn’t be good for a person like you.’ It was such a slap in the face. There I was with all my qualifications and all he could see was my disability – and he was a human rights lawyer!”
It was at that point, says Abbass, that he realized he needed to change the world, to “turn exclusion into inclusion.” He set up Al-Manarah in 2005. “I have a holistic approach that uses advocacy, education, and empowerment to change not only society’s attitudes towards disability, but the self-perception of people with disabilities.”
Social attitudes are the starting point. “This can only be changed through education and the best place to start is with the parents of people with disabilities.”
He notes that the natural response of parents is to go into shock when they have a disabled child. “They focus on the trauma to the family, not on the child’s potential.” Confidence and self-esteem depend on a supportive environment from family, school, and neighbors. “Disability is part of my identity. One has to transform it into ability, into a source of power, innovation, entrepreneurship.”
Abbass is opposed to a strictly medical model of disability. “The problem is not with the disabled person but with the society. Society has to adapt and Al-Manarah’s role is to bring about that transformation.”
Al-Manarah’s staff are themselves disabled, ensuring the organization itself provides a positive, inspirational model to the community. It runs workshops for disabled people to provide professional skills to help with employment and education. It has created a musical band that performs concerts, and a dance project that brings together disabled and non-disabled partners.
The goal is to create a cadre of leaders with disabilities to instigate social change.
Closest to Abbass’ heart is an audio library, one he believes is the most advanced in the Arab world. With few Arabic texts in Braille, Al-Manarah has recorded hundreds of Arabic books, for children and adults, and made them available across the region through a phone app.
Abbass envisions a much grander project run with other Arab partners to expand the library and extend its reach. He is developing ties to like-minded organizations in Jordan, Saudi Arabia and Egypt. “I want to become a bridge, inspiring others and allowing disabled people across the Arab world to use the latest technology to pool our resources.”