Rolling the wheels
Can disability efforts in Egypt overcome the obstacles on the way? Hala Sakr
seeks some answers
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Whether in the streets, work places or modes of transportation, people with disability still struggle on a daily basis
Following my friend into the kitchen, little blue caps were stacked up on the table, spotlessly clean. "Is this a new collection frenzy that caught you or what?" I asked with eyes wide open. Yet it appeared she was working for a good cause. "I collect plastic bottle caps for a friend, who sends them to a non-governmental organisation (NGO) in Italy for recycling and in return someone with disability gets a wheelchair," said Sherine Razzouk, a young Egyptian entrepreneur, "you can join if you wish."
She learned about that ambitious project when she was in Europe a couple of years ago. Friends of hers were collecting plastic bottle caps for NGOs undertaking this wheelchair initiative. "Unfortunately it only materialised for one Egyptian young boy with disability living in Sharm El-Sheikh through those European NGOs," she explained. "I wish we could do the same here [in Egypt] -- such a simple and brilliant idea. Can you imagine the amounts we can collect for the benefit of people with disability."
Such puny individual efforts or larger efforts by Egyptian NGOs is what dominates the work in the field of disability today. Alaa Sebeh, disability expert and consultant with Save the Children UK, emphasised that despite the many endeavours undertaken by different parties working in the field of disability and rehabilitation in Egypt, these efforts remain scattered and fragmented. "There is a dire need for coordination, better management and ultimately sitting together to develop a unified national strategy or policy for disability and rehabilitation," he told Al-Ahram Weekly.
In fact, last month the National Conference on Community Based Rehabilitation (CBR) brought together major stakeholders including representatives of the ministries of social solidarity, health, education, the National Council of Childhood and Motherhood (NCCM) as well as civil society and representatives of people with disability (PWD) to discuss those particular issues.
The conference was inaugurated by Minister of Social Solidarity Ali El-Meselhi, who stated that there was no option other than community-based efforts relying on close collaboration between the government, civil society, NGOs and the private sector including international donors. "Joining efforts with [international donors] however does not mean the mere importation of global experience. What is important is to build national capacities based on international experiences while taking into account local considerations and culture," he asserted.
Although the main focus of the conference was the joint five-year CBR programme undertaken by the attending partners which came to an end this year, different issues such as sustainability, coordination and networking as well the complex aspects of integration and equalisation of opportunities for PWD were intensely discussed. Four workshops were organised on CBR as a strategy for promotion of community participation, the rights and protection of people with disability especially children, empowerment of people with disability and the inclusion of people with disability in the development and implementation of policies.
According to the World Health Organisation (WHO), an estimated 10 per cent of the world's population -- approximately 650 million people, of which 200 million are children -- experience some form of disability. About 80 per cent live in low-income countries and these numbers are on the rise. It is interesting to note that, according to the UN, "many, if not most people, will acquire a disability at some time in their life due to physical injury, disease or ageing." What is more worrisome is that these people suffer social and economic difficulties in addition to denial of their rights.
For Egypt there is no one figure that has earned consensus. According to Sebeh, the reasons are related to problematic issues concerning the methodologies used in the surveys and the lack of a consensus over the definitions used. "However, it is generally agreed that the estimated average is around seven per cent of the population," he said.
According to the 2006 national census, the number of disabled in Egypt constitute 0.62 per cent of the 73 million Egyptian living in Egypt. However, as announced by Abu Bakr El-Guindi, head of the Central Agency for Public Mobilisation and Statistics, at the launch of the results of the census in 2006, the number is not accurate, because people hardly disclosed information regarding any disabled member in their family.
This would add up to millions of people whose lives are greatly affected by the way in which their communities and societies perceive disability or react to it. The environment in which people with disability live and the attitudes with which they are confronted can render their lives either more difficult or much easier.
Salma, a 17-year-old high school student with physical disability, wishes that people around her would stop giving her those pitiful stares. "It is too painful especially when I am striving to overcome the physical obstacles around me and lead an active life. It is very hard to merely move from one place to another, get into buildings, etc. Neither the streets nor the people are really prepared to receive us [people with disability]," she told the Weekly.
In an attempt to draw a framework for the realisation of the rights of people with disability, the UN General Assembly adopted the International Convention on the Rights of Persons with Disabilities on 13 December 2006. The convention is described as a landmark due to different reasons including being the first human rights treaty to be adopted in the 21st century and the most rapidly negotiated human rights treaty in the history of international law. Mustafa Kamal, deputy coordinator of the disability programme of the NCCM and himself a person living with blindness, sees that one of the strengths of this treaty is that people with disability were actively engaged in its development, elaboration and finalisation. "Moreover, it adopts a rights-based approach, not one that is based on mere sympathy. It is a major step on the way," he told the Weekly. "This treaty ushers in a new understanding of disability as a human rights issue, which recognises the societal obstacles and prejudices that accentuate it [disability]."
"The convention notes," says the UN, " that disability results from the interaction between a person's impairment and obstacles such as physical barriers and prevailing attitudes that prevent their participation in society. The more obstacles there are the more disabled a person becomes."
Once a country signs and ratifies the treaty, national laws will have to be adopted in a way that will have an impact on the lives of people with disabilities. Egypt signed the convention on 4 April 2007 and the ratification is in process.
According to Sebeh, "conforming with the convention entails that people with disabilities enjoy equality in human rights in all aspects of life including education, employment, housing, transportation, access to health services, etc. It should facilitate their integration into their societies at a faster and easier pace."
On the other hand, Essam Francise, head of CBR at SETI Centre, Caritas Egypt, believes that even after its ratification, unless the convention is converted into real action, it would be meaningless. Yet, practically speaking, it remains difficult to apply that in day-to-day life, especially seeing that WHO estimates that services are only provided to only five per cent of persons with disabilities in this country. This gap between needs and services is further widening not only due to population growth but also due to the shortage in well- trained professionals and because most services are centre- based and are concentrated in the big cities, leaving the vastly more needy majority in deprivation and isolation.
To Francise, community-based rehabilitation is "a genius solution that offers a maximum range of rehabilitation services based on community resources including families and mothers of people with disability." Within the context of CBR, disability is perceived as a social rather than an individual issue. Hence health is placed into a human developmental perspective focussing on functionality, productivity and social participation. "In short, CBR is a comprehensive rights-based strategy aiming at the full inclusion of PWD in all aspects of life and in the development of their communities. In fact, CBR is an essential vehicle to put the articles of the UN convention into effect especially for the less privileged," explained Sebeh.
However, Hatem Abdel-Rahman, dean of the Institute of the Neuromotor System, who represented the minister of health at the conference, believes that integration of PWD into their communities, which is of utmost importance, should be coupled with the disabled's own empowerment to enable them to become active contributors to their society.
The NCCM is one party that is active in the field, since it adopts a rights-based approach. Besides the awareness and advocacy activities, "we extend support to NGOs working with children at risk including monitoring and evaluation of joint efforts. Capacity building for cadres working in disability and rehabilitation is also a main concern," said Kamal, who also explained that a draft for a new law on disability and rehabilitation is also in preparation to update the current Law 39/1975.
While striving to institutionalise and streamline CBR into different developmental programmes, one needs to take heed of the existing realities. "Our approaches should be realistically doable within existing conditions and circumstances. We should take one step at a time," contemplated Francise. "Once we succeed we go for the next and so forth. This is the only way to mobilise the community and bring people on board. Otherwise they can easily become frustrated if we fail to achieve the big dreams, and we would be taking them to nowhere."
Nevertheless, although disability is a crosscutting issue interfacing with different aspects of life and development, "its share in development polices and programmes in Egypt do not commensurate with the estimated seven per cent proportion of the population. Streamlining of rehabilitation in all these programmes is crucial," Sebeh pointed out.
To Francise, part of the problem is the prevailing dependence on donors which poses a serious threat to the sustainability of different efforts. "It is the state's obligation to support people with disability and allocate ongoing resources for them from its treasury. Donors can only be complementary; they cannot be the main providers. This would be utterly ridiculous," he explained.
Tharwat Badr, former head of the General Directorate of Rehabilitation in the Ministry of Health and Population, agreed that sustainability has always been an issue. "This problem occurs partly due to inconsistent funding or at times due to the personal whims of people at the decision-making level."
This can only be overcome through networking and coordination among the different stakeholders and players in the field, otherwise little can be achieved. "The role of the civil society is crucial in instilling new concepts and imposing the right approaches through advocacy and lobbying," insisted Sebeh. To that effect, he recalls the successful efforts of civil society during the run up to the finalisation of the new child law, when they worked together and exerted pressure based on scientifically generated evidence. "Nothing will change unless we learn how to work collectively towards a common goal and advocate and lobby for what we need. We should create a movement," he emphasised.
Within this context, he highlights the importance of empowering people with disability and their families in order to play the role they should in monitoring accessibility, equalisation of opportunities and the implementation of the disability codes in different aspects of life.
Abdel-Rahman, of the Neuromotor System Institute, agrees that no success is possible without team work and shared ownership and responsibility to defeat any impediments.
Several initiatives were undertaken in this respect. In the early 1960s, President Gamal Abdel-Nasser issued a decree establishing the Higher Council for Rehabilitation to be headed by the minister of social solidarity. "It is a pity that since then this council only met twice. Its activation would help a lot in coordination of the scattered efforts at the national level and give additional momentum to our cause," said Sebeh. However, during the National Conference, the Social Solidarity Ministry representative disclosed that the council is to convene shortly this year.
Francise also recalls that some years back, an endeavour was coordinated by UNICEF to draw a national strategy for CBR in Egypt. A task force was formed of the Egyptian Committee for Prevention of Disability of the Ministry of Health, the Ministry of Social Solidarity, the Ministry of Education and a number of major NGOs. The strategy was drawn and endorsed and was sent to the Ministry of Finance for budgeting. "But alas, less than one per cent of what was needed for implementation was allocated. It died before it saw actual light," lamented Francise.
Many shortcomings were there. According to Francise, even NGO members of the task force were not authorised by other organisations to represent them based on a common vision. He argued that the process should start from the grassroots level and proceed upwards and not the other way round. "There were no representatives of PWD or their families -- the real stakeholders," he added.
Badr added that there was no committee or person designated to oversee and follow up its implementation with the budget available. If the first step was taken, the wheels would roll.
Hence today, Kamal, as a person with disability, says that accessibility is still an issue in Egypt. "I wish the disability codes for buildings, streets, transportation and all infrastructure would be implemented to make life easier." He also wishes that more should be done to raise the awareness of the community to promote inclusion of people with disability. "The role of the media is very important in this. They should take up the cause of disability constantly and not only seasonally whenever there is an event."
Sebeh further stressed that the media is one of the most important fields where streamlining of the cause of disability should take place without pretentiousness. "People with disability should be portrayed as they are in reality; active members of their communities who contribute to their development and share with us the life we live every day."
The NCCM has also established a hotline (0800 888 6666) as a free service directing people to appropriate service providers, providing medical advice and at times some assistive devices.