Breaking barriers to a hearing world

AMMAN — Those with hearing disabilities in Jordan struggle to make their voices heard by the Ministry of Health and other relevant authorities. Their complaints and demands focus on two basic needs: cochlear implants and fair education. But will there be meaningful change? Navigating day-to-day life in the Kingdom can be difficult for people with disabilities, and accommodations for the Deaf community are not as commonly available. People with hearing disabilities in Jordan most often communicate using Levantine Sign Language (LSL), the official sign language of Jordan, Palestine, Syria, and Lebanon. However, the Kingdom is filled with sounds — from honking car horns to conversations and calls from sidewalk vendors — and one small, practical intervention could make the difference between waking up every morning to a silent reality or the hearing world. A cochlear implant — a small electronic device that offers the sense of sound to those who are profoundly Deaf or hard of hearing — can make navigating daily life easier, but getting and maintaining the implant in Jordan has proven difficult and costly.  ‘Some families have given up’According to the president and founder of the National Association of Cochlear Implants in Jordan, Ahmad Al-Sawafta, there are no official figures for the number of Deaf people in Jordan. However, through statistics he gathered himself, he estimates that approximately 2,500 people across Jordan need cochlear implants to hear, Al-Ghad News reported. In the Kingdom, however, monthly costs for those with cochlear implants reach more than JD500, covering speech therapy classes and maintenance costs for the finely tuned devices, which require battery changes every two to three days.  In the Kingdom… monthly costs for those with cochlear implants reach more than JD500.Jordanians suffering from hearing disabilities are all too familiar with the hefty bill that comes with living in a world of sound. Ahmad Hamdan Al-Jubour has three children with hearing disabilities. He experiences great financial difficulties in providing care for his children and is mired in accumulating debts — in the range of JD22,000 — borrowed for routine maintenance on his children’s cochlear implants.  His situation, he said, is no different from that of other families with a member who has a cochlear implant. Many of the ones he knows, he explained, have become indebted to various companies that provide maintenance for the devices. Every three days, Jubour needs new batteries and wires for all three of his children’s implants; wires can cost between JD50 to JD180 for a single one. That is not to mention periodic device maintenance, which could reach up to JD4,000.  “Some families have given up,” he said, “after experiencing the difficulties of trying (to help their children hear).”  These families have resorted to sign language instead of cochlear implants as a dramatically less-expensive option. This most often occurs when the children with hearing disabilities are not insured or the families are not able to bear the financial burden of cochlear implant upkeep.  Jubour appealed to the relevant authorities to “take responsibility and thoroughly implement the law”.  A question of implementationWhat is the law in Jordan regarding people with hearing disabilities? Article 25 of the UN Convention on the Rights of Persons with Disabilities, which Jordan ratified in 2008, states that “persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability”.   In terms of education, Article 24 of the convention stipulates the universal right to education. Jordan has also ratified the International Covenant on Economic, Social, and Cultural Rights, which contains a clause requiring the provision of free primary and secondary education for all students. “Some families have given up,” he said, “after experiencing the difficulties of trying to (help their children hear).”However, the Ministry of Health has “dragged its feet” when it comes to including hearing-disability-related costs under comprehensive health insurance. The same goes for guaranteeing that deaf persons receive treatment and care, as families with Deaf children claim that the ministry “has not provided any free healthcare to their children”, according to Al-Ghad.   Riyadh Sobh, an independent human rights advisor in Jordan and the region, said that the Health Ministry "must meet all health-related needs, including providing personal equipment and devices and health and logistical services”.  Sobh pointed to “inaction and a lack of sufficient attention on the part of the government — specifically the Ministry of Health — in terms of providing these services and addressing the problem”. He said that the government should replace old cochlear implants with updated, fully functional ones, and that this service should be free-of-charge to empower those needing hearing assistance.  Meanwhile, Sawafta stressed the need to incorporate hearing and speech therapy centers into insurance coverage plans or provide practical solutions for those needing hearing support within school environments.  The education gapAccording to the Ministry of Education’s Director of Programs for Students with Disabilities Dr Muhammad Rahamneh, Jordan has 12 specialized schools accessible for students with hearing disabilities — 10 public and two private.  At these schools, 851 students with hearing disabilities receive education, 189 of whom have cochlear implants.  However, according to Sobh, the state of education for those with disabilities in the Kingdom is “very poor”.  A report issued in 2019… showed that 79.5 percent of persons with disabilities of school age in Jordan “have never entered a school”.A report issued in 2019 by the Higher Council for Persons with Disabilities, prepared in cooperation with the Education Ministry, showed that 79.5 percent of persons with disabilities of school age in Jordan “have never entered a school”. “This explains the huge gap in education (for those with hearing disabilities) and reveals systematic discrimination,” Sobh said. He attributed the low school attendance rate to “a lack of necessary logistical provisions and reasonable accommodations for this segment of society”. He also called for “establishing sufficient, actual budgets to make schools inclusive”. The Education Ministry, however, insists that the level of satisfaction regarding the preparedness of schools to accommodate students with cochlear implants is “high”, with specialized schools readily accepting students with hearing disabilities “without any restrictions” and based only on the decisions of their guardians to enroll them.  The ministry also has plans to train administrative and educational staff on accommodating students with disabilities and integrating them into classrooms. It equips schools with educational materials, tools, and games specifically for students with hearing disabilities, it said. It also provides students with hearing aids, ensuring that speech and language therapists are available at specialized schools. In addition, the ministry trains administrative and educational staff in academic sign language “to create bridges of communication with students with hearing disabilities”. Aladdin Al-Smadi is a father to two children with hearing disabilities, aged nine and 14, who received cochlear implants through the Royal Court and a donor. Smadi said his only request is that his children, who are studying at a public school, be taught to read and write. He asked “for nothing else”. Whose responsibility?It was only recently that those with hearing disabilities were included among persons with disabilities, but laws in this regard have not been applied, according to Sawafta. “Practically speaking, the empowerment of persons with disabilities in Jordan is very weak in terms of providing an inclusive work environment and transportation or even equipping buildings,” said Sobh, the human rights advisor.  “If the government decides that providing financial support is a form of empowerment, then it must provide this support to all.”Jordan’s Law on the Rights of Persons with Disabilities is “ambitious and excellent”, Sobh said, “but the main obstacles to its implementation are the failures of institutions and ministries to set aside the necessary budgets to provide reasonable accommodation services, technical and medical assistance, and social empowerment in general, which come with financial costs.”  The Higher Council for Persons with Disabilities, he said, is responsible for establishing policies concerning issues affecting persons with disabilities and monitoring the situation. However, it is not an executive body, meaning it is not responsible for allocating budgets or implementing laws. Instead, he said, “the problem lies with the concerned ministries, which must assume their responsibility in implementing the Law on the Rights of Persons with Disabilities”.  The higher council declined to comment on the issue of persons with hearing disabilities for this article. 'Less than 10%' receive financial support No official support from any government agency is earmarked specifically for those in need of cochlear implants in Jordan, according to Sawafta. However, people who have received implants through the Hearing Without Borders initiative receive six packets of batteries annually and wires every six months from the initiative. The official spokesman of the National Aid Fund, NajehSawalha, said that the fund does provide financial support to those suffering from severe hearing and neurological impairments — not specifically those in need of cochlear implants. Beneficiaries of this support total 230 families, considered humanitarian cases. This support falls under the fund’s physical rehabilitation program, which includes the possibility of cochlear maintenance under the item “maintenance of medical aids”, Sawalha said. Sobh pointed out that the international Convention on Persons with Disabilities does not refer to providing financial aid, but rather, stipulates creating an inclusive environment for people with disabilities in terms of education, work, healthcare, and other categories. If the National Aid Fund figures for beneficiary families are assumed to be correct, this indicates “a massive gap”, suggesting that less than 10 percent of those with hearing disabilities receive government support, he said. “If the government decides that providing financial support is a form of empowerment, then it must provide this support to all.” Demands for a hearing lifeAccording to Sawafta, the key demands of people needing cochlear implants are that the government include audio devices such as cochlear implants within comprehensive health insurance coverage, including maintenance, spare parts, batteries, and replacements.  The Deaf community also demands an inclusive educational environment that allows those with hearing disabilities to receive a fair education. All those with hearing disabilities should also benefit from the National Aid Fund, they say. This report was prepared in cooperation with the Center for Defending Freedom of Journalists. 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