THE AMMAN COMMUNITY SUPPORT PROJECTS
The SOIR celebration of
Societal, financial constraints
By Suha Maayeh
A mother of six disabled children approached a rehabilitation centre asking for help. But an official told her she should have thought about not conceiving more children after doctors detected genetically linked disabilities in her first child the result of a marriage among first cousins, a common issue in Jordan.
In a nation of 4.5 million people, Jordan has over 130,000 citizens suffering from various forms of disabilities, including mental and physical retardation, according to figures released recently by the Ministry of Social Development
This, doctors and social workers say, is placing huge financial constraints on the country*s limited health, social welfare and education infrastructure, costing it millions of dinars on the treatment of mostly genetically-induced disabilities.
Social workers blame the relatively higher figures of disabled Jordanians on poverty, social ignorance, accidents and consanguineous marriages, a widespread traditional practice in Jordan.
A 1982 population-based study of consanguineous marriages in Jordan, which surveyed 2,000 households, found that 32.03% of marriages were among first cousins, 6.8% among second cousins, 10.5% among distant relations, and 50% among no relation.
The study, conducted by Sami Khoury a specialist in community medicine at the University of Jordan, and Diana Massad, a research teaching assistant in community medicine at the University of Jordan, showed a correlation between education and consanguinity.
Dr. Khoury told the Jordan Times that marriage between first cousins increased the risk of infant mortality and congenital malformation, though this was not a general rule.
"Malformations are produced whenever there is a gene in the family which carries malformation," he said in an interview.
He said congenital malformations and familial diseases included cardiac septal defect cleft lips and palates, imperforate anus, hypospadias, congenital dislocation of the hip, blindness, limb, ear or breast anomalies, asthma and diabetes.
His Royal Highness Crown Prince RaŽd, who over the years has emerged as Jordan*s main advocate for the disabled, underlined the need for couples to conduct genetic tests before they tie the knot to help avoid further disabilities through early detection of such possibilities.
The National Council for the Welfare of the Disabled Persons (NCWDP), which among other things is trying hard to promote such pre-marital medical tests, is facing an uphill battle in a society that still shuns such moves.
Doctors have proven that first cousin marriages could cause a host of disabilities which could take up to five decades to detect.
"Conducting premarital tests is a [socially] sensitive issue", Prince RaŽd, head of the NCWPD, told the Jordan Times in a recent interview.
"Though we respect the privacy of citizens, it is our duty to propose the idea of pre-marital tests to help avoid further disabilities."
In 1994, the Ministry of Health made it obligatory for a couple planning to get married to conduct a pre-marital medical exam. But it left it up to the couple to decide if they wanted to pursue their plans if genetically-linked diseases were detected in the tests.
However doctors and religious clergymen have said these tests have been largely ignored.
"Many people tend to believe that what God gives them is what they deserve," one doctor said. "Hence, they do not really care if pre-marital tests show a high chance of disability in their children."
Prince RaŽd, the chief chamberlain, said disabled people in Jordan enjoy the same constitutional rights granted to any other citizen under a 1993 law for the welfare of disabled.
"It is their rights as citizens of Jordan to become part and parcel of the community," be said. "It is important to regard every person with a disability as a citizen of the Hashemite Kingdom of Jordan. He/she should be treated with respect, kindness and a genuine feeling of love."
The law granted disabled people rights in terms of their integration into the general societal life, including education, medical treatment, training and rehabilitation, employment and a suitable environment that allows them freedom of movement.
Prince RaŽd stressed the need to apply the building codes rules issued in a 1997 directive to provide facilities to the disabled when premises are build and new roads are opened.
"Any new building or structure must have all the necessary features such as lifts, parks, signs, bathroom fixtures, telephones and other facilities to ensure the safety of the disabled and ease his/her movement" he said. "Any organisation which does not abide by this specification will be heavily fined.".
Basil Hourani, director of the Jordanian Sport Centre for the Disabled, said a national strategic plan should be developed to help limit disability, including launching public awareness campaigns.
He said Jordan lacks adequate rehabilitation centres to handle the large number of disabled people, especially in remote areas of the country, and faces a shortage in specialised staff.
The Kingdom has 117 institutions for special education tackling various forms of disabilities.
The relatively high cost of buying equipment for the disabled, such as wheelchairs, artificial limbs and hearing aids, are a major hindrance to efforts to improve their lot.
Prince RaŽd urged non-governmental organisations (NGOs) to play a greater role in helping the disabled.
"The past five years have witnessed a great change in terms of awareness among people regarding the capabilities and potential of people with disabilities."
This was largely aided by the activities of the Jordan Sport Federation for the Disabled which for the past 15 years has used sports activities to promote their cause.
Through it many disabled Jordanians have taken part in local, regional and international sports tournaments.
"Winning awards, prizes and medals have brought about a change in the community*s perception and attitude within a very short space of time," Prince Ra*d said.
Conference on integrating disabled into society ends
By Suha Maayeh
At a two-day conference entitled "Changing Disability Services in a Changing Society" ended yesterday by examining means of integrating people with special needs into the community.
Patricia Ericsson, a consultant from the Swedish Organisation for Individual Relief (SOIR), which organised the conference, told the Jordan Times that the seminar was held to mark over 30 years of Swedish work in Jordan.
"The foreign speakers who discussed different aspects of their research focussed on how [disabled] services are changing to meet the demands of the changing society," she said.
"ln all societies there are many cases of mental retardation. The SOIR has decided to leave the institutional approach and integrate people with special needs into society" Ms. Ericsson added.
The SOIR is a private, non-governmental organisation (NGO) founded in Sweden
which aims at helping individuals who cannot obtain relief through other sources. It started its activities in Jordan in 1966 at the request of the Ministry of Social Welfare.
"We have been working with mentally retarded people in several countries in the Middle East;" said Orjan Ekman, SOIR chairman. It*s an important part of our work to provide training for students and staff working in the field."
There are special teachers from the SOIR who are working with community-based rehabilitation projects in eight refugee camps.
"We want to open services close to where people with special needs live and have teachers with them to help them" Mr Ekman added.
He stressed that severely mentally retarded people are neglected in comparison to other groups with disabilities.
"If you take different cases of disability across the world, the mentally retarded receive low priority, and the severely mentally retarded come last," he said.
Wael Masoud, dean of Princess Rahma College for Social Work at Balqa Applied Sciences University, said it is important to integrate people with special needs into society. Dr. Masoud explained that a child with special needs should be offered services from the community, a new trend across the globe.
"It is our role to qualify teachers in terms of teaching methods and acknowledging the special needs and how to deal with them," Dr. Masoud said.
"It is important that schools accept people with special needs as it is difficult for children living in remote areas to obtain their education," he added.
Dr. Masoud highlighted the importance of psychological support for the families and providing them with adequate information because they are an essential part in the process of integrating their children into society.
The conference was organised in conjunction with the Ministry of Social Development and the National Council for the welfare of the Disabled.
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