The voice of uniquely abled children
“I have accepted my condition; but that is not enough. We must stand up to the challenges so others treat us equally and with respect,” Jerelle, 18, says of his situation.
He was one of the 200-strong delegation to the Philippine National Children’s Conference in 2016. He traveled all the way from Nueva Ecija — which, he said, was not an easy ride. “There are not many PWD facilities, even a ramp, in public transport stations here in Manila,” he says with a hint of frustration. From his wheel chair at the 38th-floor conference room, he looked in awe at the towering Ortigas Centre skyline.
Jerelle has high hopes for his future, which has already been rewarded: while still a university junior, he has a job offer waiting for him as an IT specialist. He says nothing has ever hindered him from making big dreams.
Across the city, in a quiet neighbourhood of the usually manic Cubao in Quezon City, children living with disabilities (CWDs) are only starting to get the hang of socialising. Alana*, age 10, is visually impaired, and Lawrence*, 17 years old, has cerebral palsy. Along with other CWDs, they attend the nearby Special Education (SPED) school; all seemingly unfazed with the chaos of Metro Manila traffic that runs just outside their classrooms.
Alana has mastered her braille, and eagerly reads out loud a children’s story to her friends and teacher at school. “But I also like to run!” she exclaims, when asked what her other hobbies are apart from reading. She then urges her mother to join her for a run around the school grounds, and off they went. Lawrence, meanwhile, lives much of his adolescent years selling sampaguita (jasmine) garlands and peanuts on Cubao’s side-streets. His speech slurred, this has not deterred him from his entrepreneurial spirit — despite the risks 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 with a smile.
“I am always proud of these CWDs who excel in their chosen fields — and I encourage parents or guardians who supported them to grow with confidence and be the best. Family love and support are very important for children growing with disabilities to make them feel a full person, with any form of disability as being just a small part of their uniqueness,” says Dr Carmen Zubiaga, acting executive director of the National Council on Disability Affairs.
Patching the gaps
Most disabilities, such as intellectual, hearing, vision and behavioural conditions, are usually detected at age 3 to 9. A 2010 census puts the number of people living with physical or mental disabilities in the country at 1.57% of the Philippine population; with about 30.5% of this figure being children aged 0–19.
To advocates, this may be an unrealistically low peg. Dr Zubiaga added that if a family is poor and has no access to regular health checks, they may not be aware 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 to give 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 thelow level of acceptance wedges the gap of government agencies’ ability to properly address the issue with funding and legislation. This also means insurance policies, especially the public PhilHealth system, struggles to define the scope and coverage for CWDs especially in poor rural communities.
While Republic Act 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 2011 and 2013 Social Weather Study (SWS) results showing that more than half of the PWDs themselves are not aware of these existing laws and mandates protecting them.
Beyond simply providing facilities like ramps and lifts in buildings, PWD/CWD advocates have repeatedly called on increasing the equitable access to services for them across the country. There is also a need for the general public to be even more sensitised to 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 centre for CWDs, in partnership with Physicians for Peace. UNICEF also works 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 working on piloting a Disability Grant for families with CWDs.
Never giving up
Jerelle likes his basketball games — and can equally play with his non-CWD/PWD friends. He has a far better reflex than many of them, considering the maneuver he needs to do on his wheel chair.
For those three days at the Philippine National Children’s Conference in 2016, 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 change the social norms and attitudes towards PWDs in the country. More than that, he remains hopeful that CWDs themselves will also stand up with the same dignity as he has proven.
“I am used to interacting with people already, but it saddens me that many CWDs have faltered. That is what I really want to change most,” he says with a rather stern conviction.
Such conviction is mirrored in the lives of Alana and Lawrence who braved through their childhood’s added layer of challenges — but have both come out more positive than many non-PWDs in their neighbourhood. They are three of the strongest young persons one will meet.
For now, Jerelle is vocal on what the new government should continue doing: “I hope they 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 on PWDs in schools — so people are more open and accepting of and sensitive about our situation, without the unnecessary judgments and stigma.”
“Awareness for 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 programmes to children with disabilities,” Dr Zubiaga says. She herself has braved through life — and blazed through her successful career — from her wheelchair.
*Names have been changed to protect the children’s identity.
For more information about UNICEF’s work in the Philippines, visit www.unicef.ph.