Uniquely abled children

This is what Jerelle, 18, says of his situation: “I have accepted my condition, but that is not enough. We must stand up to the challenges so others will treat us equally and with respect.”

Jerelle was one of the 200-strong delegation to the Philippine National Children’s Conference (PNCC) held last May. He traveled all the way from Nueva Ecija—not an easy ride, he says with a hint of frustration, given that there are not many facilities for persons with disabilities (PWDs), “not even a ramp, in public transport stations in Manila.”

But from his wheelchair at the 38th-floor conference room, he looks in awe at the towering Ortigas Center skyline.

Jerelle, who says nothing has ever hindered him from dreaming big, has high hopes for his future. While still a university junior, he has a job offer waiting for him as an IT specialist.

Across the city, in a quiet neighborhood in usually manic Cubao in Quezon City, children living with disabilities (CWDs) are only starting to get the hang of socializing. “Alana,” 10, is visually impaired, and “Lawrence,” 17, has cerebral palsy. Along with other CWDs, they attend the nearby Special Education school, all seemingly unfazed by the chaotic traffic that runs just outside their classrooms.

Alana has mastered her braille, and eagerly reads a children’s story aloud to her friends and teacher. “I also like to run!” she exclaims when asked about her other hobbies apart from reading. She then urges her mother to join her for a run around the school grounds, and off they go.

Lawrence spends much of his time selling sampaguita (jasmine) garlands and peanuts on Cubao’s side streets. His speech is slurred, but it has not deterred him from his entrepreneurial spirit despite the risk of abuse or exploitation.

Teacher Ellen is proud of her students’ zest for life. “They are very talented, very active, and driven to perform in class. Sometimes their parents can’t keep up with their energy,” she says.

Dr. Carmen Zubiaga, acting executive director of the National Council on Disability Affairs, says: “I am always proud of these CWDs who excel in their chosen fields, and I encourage the parents or guardians who supported them to grow with confidence and be the best. Family love and support are very important for CWDs, to make them feel a full person, with any form of disability being just a small part of their uniqueness.”

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Most disabilities, such as intellectual, hearing, vision and behavioral conditions, are usually detected at ages three to nine. A 2010 census puts the number of people living with physical or mental disabilities in the Philippines at 1.57 percent of the population; 30.5 percent of this figure are made up of children and teenagers aged 0-19.

To advocates, this may be an unrealistically low peg. According to Zubiaga, if a family is poor and has no access to regular health checks, its members may not be aware that their children have disabilities. If the disability is visible, parents do not see the need to report it, especially if they think they can manage early intervention. Others take long to move on from the denial stage, which contributes to the family’s perspective on disabilities.

The lack of data combined with low level of acceptance heightens government agencies’ inability to properly address the issue with funding and legislation. This also means that insurance policies, especially the public PhilHealth system, struggle to define the scope and coverage for CWDs, especially in poor rural communities.

While Republic Act No. 7277 (Magna Carta for PWDs) has been in place along with solid laws to rehabilitate and integrate PWDs through self-development and self-reliance, The Asia Foundation cited a 2011 and 2013 Social Weather Stations survey showing that more than half of the PWDs themselves are not aware of these laws and mandates protecting them.

Beyond simply providing facilities like ramps and lifts in buildings, advocates have repeatedly called for increasing equitable PWD/CWD access to services nationwide. More than that, there is a need for the general public to be made aware of the needs and abilities of PWDs, especially children.

The Department of Health, with Unicef’s health and nutrition section, is working on a PhilHealth benefit package for CWDs and developing a service delivery network and regional rehabilitation center for them, in partnership with Physicians for Peace. Unicef is also working with the ECCD Council to develop a system for early detection, prevention, referral and intervention for development disorders. And along with the Department of Social Welfare and Development, Unicef is piloting a disability grant for families with CWDs.

“We have seen progress in expanding the PhilHealth scope to different groups of children, but we must also continue our work for the CWDs in the country who need as much attention,” says Dr. Will Zeck, Unicef chief of health and nutrition. “This is an equity issue both for the UN and the Philippine government, so we will not stop working on a stronger collaboration with the DOH and PhilHealth.”

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Jerelle likes his basketball games, and can play with his non-CWD/PWD friends. He has far better reflexes than many of them, considering the maneuvers he needs to do on his wheelchair. He also has just entered his third year in university, majoring in IT, on a scholarship.

For those three days at the PNCC, Jerelle became the voice for CWDs to join the PWD community and advocates in calling for an increase in public investment, providing PWD-friendly facilities in public spaces, and slowly changing social norms and attitudes toward PWDs. He is hopeful that other CWDs will stand up with the same dignity as he has shown.

“I am used to interacting with people, but it saddens me that many CWDs have faltered. That is what I really want to change most,” he says with conviction.

Such conviction is mirrored in the lives of Alana and Lawrence, who braved their childhood with an added layer of challenges, from which they have come out more positive than many non-PWDs in their neighborhood. They are three of the strongest young persons one will ever meet.

For now, Jerelle is vocal on what the new administration should continue doing: “I hope it will provide more equitable services and PWD-friendly facilities. Other countries have fully-equipped PWD access points. I also hope there will be more awareness of PWDs in schools, so people will be more open and accepting of and sensitive about our situation, without the unnecessary judgments and stigma.”

Says Dr. Zubiaga: “The awareness of family members and communities changes the social norms of discrimination and perspective on disability. Service providers and project planners should also be given sensitivity training to come up with responsive programs for CWDs.”

She herself has braved life—and blazed a successful career—from her wheelchair.

Mike Saycon is communication officer of Unicef Philippines, supporting public advocacy and policy agenda for its programs in child protection.