Talk about children and youth with disabilities (CYWDs), and insights—from the positive to the negative—come rushing. It is often said that having one in the family is a blessing. In medicine the condition is at times explained as something that happens when the mother goes through her pregnancy undernourished. Superstition points to roaming spirits that had, perhaps, “pushed its luck” on the child. Indeed, opinions on the cause of the disability vary, but one thing is sure: We cannot skirt this issue on the pretext that it is a condition predestined by fate. We must recognize it, to look at it and address it with conviction.
The number of persons with disabilities (PWDs) is growing at an unprecedented rate. This is according to Edgardo F. Garcia of Deafblind Support Philippines. In 2000, he said, out of the estimated population of 76 million Filipinos,1.23 percent or 935 million had disabilities; in 2010, the PWD population in the Philippines constituted 1.57 percent or 1.4 million of the estimated 92.1 million Filipinos. The growth rate may seem minimal on a yearly basis, but there is no denying that the scope of care and intervention needed by this vulnerable sector of our societyis gargantuan.
We cannot help, therefore, but ask if the national government has definite plans for CYWDs, especially at their later ages or when “embattled.” Are their privileges enough so they could live with a sense of independence or belongingness or security? Could the law meddle to extend help or champion oppressive cases?
Take the case of a parent whose eight-year-old daughter decided to stop regular schooling because she could no longer endure the name-calling and being the butt of jokes in school. When the mother was pressed to push for a case, her reply was hazy. Which showed that awareness of the relevant, applicable laws on PWDs is generally lacking even among parents. And so, we are left with no option that would integrate children and youth with disabilities into mainstream society. Even family members are not sure, much less confident, if they could truly care for their own on a long and sustained basis. Another concern is: Can siblings in their adult life truly take care of a CYWD sibling with impairment? Or can guardians of CYWDs love them as much as their mothers do?
I know of two wealthy families who have prepared long-term financial provisions for their CYWDs. And yet, they remain at sea about their children’s future. This, the mothers have honestly admitted in tones of despair.
Our president and chair, Angela Maria Pangan, of Norfil Foundation (an organization that champions the cause and welfare of children, youth, women and families in need) once recalled seeing unattended children treated like beasts. And she remembers a 12-year-old boy tied to a post of a dwelling, fed like an animal then “gunned” with a water hose for routine bathing. The boy was mentally challenged.
In another instance, she saw an eight-year-old boy alone in a wooden cart. He was dirty and looked hungry and unfed. Pity could be anyone’s immediate reaction, she said, but her heart had a different sense—special interventions are needed to reach the CYWDs.
Have you ever wondered how a CYWD could secure him/her person on his/her own during a violent typhoon? And what about the old people with them? Are they equipped with any means with which they could signal for the help they need?
There is no overstating the need for a community-based rehabilitation program for children and youth with disabilities, and this necessarily should involve their respective families and other people significant and crucial to the setup. We should as well tap able kids as advocates to understanding what disability is. (I heard of one organization like this in Cebu City,“Listong Paslit.”)
“Community-based” is not about the institution. It is not taking the child away from his/her parents or parents bringing their child to the city for check-ups. It is about wholistic, rights- and family-based and multidisciplinary approaches and tools that need not be grandly structured. Like parents forming an association to serve as each other’s support system. Like Akapin, an association of parents, with chapters now in Oriental Mindoro, Batangas and Cebu. Akapin’s membership is big enough to influence legislation.
“Community-based” must be animated by the driving principle of inclusiveness.
Maria Congee S. Gomez is communication and resource mobilization officer at Norfil Foundation Inc.