Breaking the stigma on Filipino children with disabilities

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There are around five million disabled children in the country and the issues that they contend with are far too many. UNICEF Philippines representative Lotta Sylwander talks about how the organization has been developing programs to bring awareness to their plight and address their needs. Photo by JL JAVIER

Manila (CNN Philippines Life) — “The Filipino child today is not what you would expect of a middle income country,” explains Lotta Sylwander, the UNICEF Representative to the Philippines, when asked to paint a situation of what it’s like to be a child in the Philippines today. A lot of issues beset the Filipino child — the general poverty rate, constant natural disasters, armed conflict, displacement, violence, and sexual abuse. And these are precisely the issues that UNICEF is dealing with to make lives a little bit easier. But going into more detail, Sylwander explains that there are children who are more disadvantaged than the average child — disabled children.

“They're not just poor, they're not just living in the armed conflict area [...] So they are double or triple, four times as vulnerable as any other child because they are usually not recognized by society at large. They're discriminated, meaning it's difficult for them to go to school, because people say, ‘No, you can't go to school here.’ That adheres both to indigenous children and to disabled children. ‘We don't know how to teach you.’”

Access to primary care is also difficult for children with disabilities (CWDs).

“Health services are too far away, or [these institutions] do not have the services that disabled children need,” says Sylwander. “For example, [they] cannot give a diagnosis to parents of what's wrong with their child, cannot provide any therapy for them. So often, disabled children never, ever go to school and just sit at home — they're basically locked up at home. And also, there's a lot of stigma around disabled children, and indigenous children as well. They're looked at as dirty, as stupid, as all of those things.”

UNICEF has been collecting data and information on CWDs in the country, an effort that has been paid particular attention since Sylwander joined the Philippine office in 2014. Prior to being assigned to the Philippines, she served as the UNICEF representative in Vietnam, where a generation of children was born disabled due to the toxic effects of Agent Orange, a chemical used during the Vietnam War as a herbicide and defoliant in jungles.

“That really opened my eyes for all the stigma around it, but also the awful situations that these children were in, they were locked up ... Especially with poor families, the mother and father had to go to work, and the only way they could do that is to basically lock the child in a dark room and leave them there. That was awful and that sort of woke me up to how many disabled children there are. Then when I came here, I started asking, and no one really knew.”

"A little help and assistance and understanding of the child's disability can go a long way to make life for that child a lot easier. They can actually do things," says Lotta Sylwander. Today, there are many ways for disabled children to be integrated into society, such as the use of certain aids or devices. Photo by JL JAVIER

Sylwander admits there is still a lot of work to be done in terms of addressing the needs of CWDs in the Philippines — she says there are roughly five million in the Philippines, if not more — but UNICEF has been making efforts to make them heard and seen.

“The difficulty here with data is that, because the diagnostics of the children, or of adults for that matter, are not being made. It's very vague in terms of, ‘My daughter doesn't go to school because she's disabled.’ But what disabilities does she have? [They don’t know]. So we don't know if it's an intellectual, a physical, or something else. That makes it a bit blurry in terms of what's exactly the numbers. But we do know for example that a lot of disabilities in children come from the fact that they were born at home or without the help of a trained midwife or a doctor. And so, there were something that happened around the labor situation that affects the child. That for example is one thing that we need to address and need to continue working on, because, again, for a middle income country, far too many children are born at home far away from any kind of healthcare providers and trained staff and so on.”

“This is, I think, a hidden disgrace in the Philippines, that disabled children are just hidden away from society,” continues Sylwander. “And that they don't get the support that they need, and that they're not recognized as citizens who should be counted and should also be listened to. They are human beings like anyone else, and just because you are disabled in some fields, [it] doesn't mean you're disabled in everything. All people have abilities, even disabled people. We need to recognize that, and society needs to recognize that. The government needs to recognize that.”

On March 4, UNICEF and LAJ Philippines-LEGO are putting together the first UNICEF Children’s Ball to help raise funds for the creation of the National Centers for Children with Disabilities — a hub that puts all the essential services for CWDs all in one place — something that is nonexistent in the country until now. The first hub is now underway at the Philippine General Hospital.

The event, which will be held at the Peninsula Manila, will gather guests and feature a four-course meal created by Asia’s Best Female Chefs awardees: Bo Songvisava of Thailand, Lanshu Chen of Taiwan, Vicky Lau of Hong Kong, and the Philippines’ own Margarita Forés.

“What we're hoping to do with the money that we're getting from this charity ball is to get the ball rolling by establishing at least four one-stop shops for disabled children,” says Sylwander. “Meaning, a parent — with or without Philhealth — can go to this center and there will be a doctor, there will be a psychiatrist, there will be a social worker, there will be some kind of therapist, and so on. Everything that the child needs to get a diagnosis, to start the correct treatment, to get a device, a hearing device or a limb, or something else, they can get there. They don't have to run around different hospitals and different doctors an different specialists.”

CNN Philippines Life talked to Sylwander about the fundraising event, the efforts and studies the UNICEF is developing to address the needs of CWDs, and what the ball can do to advance the efforts for CWDs. Below are edited excerpts from the interview.

Lotta Sylwander joined the UNICEF Philippine office in 2014. Prior to being assigned to the country, she served as the UNICEF representative in Vietnam, where she helped children who were disabled due to the toxic residues of the Vietnam War. Photo by JL JAVIER

Why do you think disabled children are hidden away from society? Is it because of the stigma?

There is a stigma. There are perceptions that it is a punishment. But I also think it's a lot of, “We can't afford to help this child, it's better we hide them away.” It's kind of a shame on the family thing. But it happens to anyone, and what I think many parents don't realize [is] that if they get their child to a facility, if there is one that can provide help and diagnosis of the disability, that if they get their child to a facility, if there is one that can provide help and diagnosis of the disability that they might suspect that the child has. They can actually do something about it, and the earlier you do something about it, the more likely it is that either the disability can be removed or healed somehow, or the child will learn better to live with that disability.

Let's say, a hearing impaired child, for example, can learn sign language early, and thereby communicate with his or her environment, and also then be able to say what they want or not want. But a child that never learns that will find it very difficult to [communicate].

A little help and assistance and understanding of the child's disability can go a long way to make life for that child a lot easier, a lot more painless. They can actually do things. Just because you can't hear, for example, doesn't mean that you're done. It means that you can't hear. But you have your thoughts, you can still express yourself, you can learn how to read and write. You can do everything, except [talk]. But today, there are so many other ways. You can write on a computer, on [a] phone. You can be part of society just like any other child.

[It’s about] really giving the insight to both parents and others in society that it's the ability of the child that we need to focus on, not the disability. And at that, it really is society around the child that is disabling the child. Because if we were able to provide what they need, they wouldn't be disabled anymore. It's turning around the perception of disability that we need to really address.

Why do you think children with disabilities have been sidelined in terms of getting proper attention in terms of healthcare?

Because, I think, the healthcare system here is very specialized. Everyone knows their little niche. And general practitioners generally know little about disabilities, especially if you're poor, as there are few places where you can actually refer a disabled child to that a poor family can afford, which is doable within distances and all of those things.

Imagine, if you live in Mindanao, and you have a disabled child, and you have five other kids as well, are you really gonna carry that child down the mountain and take a five-hour motorcycle ride to a hospital that would be closed by the time you get there and then, sleep overnight ... The whole thing. It just kind of perpetuates itself.

[We’re] hoping that health services will improve its outreach programs. [And] that those who work within the health system will be more attuned to disability issues and be able to assist parents who actually want to do something, to come to different places where some kind of assistance could be given to that child.

Disabled children are hidden away from society because of the stigma, says Sylwander. "There are perceptions that it is a punishment. But I also think [...] it's kind of a shame on the family thing. But it happens to anyone." Photo by JL JAVIER

So these initiatives by the UNICEF are kind of like a signal to the Philippine government?

[They are]. Since a long time back, I've been very open to, for example, signing the convention of the rights of people living with disabilities ... So there is a willingness, and there's even a legal basis to support disabled children. But, for example, there is also a law on inclusive education that disabled children should go to normal schools, and not specialized. We have [special education] schools here and there, and especially for deaf and blind children, but mostly if one were to bring a disabled child to school, teachers would say, "No, we don't have the capacity to take that child here. Please go to spec ed." And of course, we all know that spec ed schools are far away, far between, and also, not necessarily what the child needs.

There is a teacher-training program to ensure that inclusive education can actually happen and that, disabled children can, in one way or the other, be integrated in the way that is possible. Also, that schools are accessible to those children who have physical disabilities, but also that there are devices that can help children with other disabilities like hearing aids and Braille machines for those who are blind and so on.

There's a lot that can be done in the education system as well, and a lot around the perceptions of teachers who think that they cannot integrate disabled children in their classroom.

On the regular, you would notice that there are ramps and buildings, and discounts for persons with disabilities ... So there's actually a law in place for these things, but is it really a matter of an enforcement and a bit of prodding?

Yeah. And I think also different LGUs have different ordinances around it. I think a city like Makati probably has fairly good ordinances around that. But then there are others that completely don't have anything. And of course, it depends on the resources that they have. And again, I think probably, national government giving certain financial support to different LGUs should consider also putting some measures in terms of what they provide for disabled people or children in that LGU, so that they can provide the funding and also look at the results that they get for their funding in that particular LGU.

UNICEF has been kind of lowkey when they do activities and initiatives, so why put together this ball now?

Because we're supported by LEGO-LAJ, which is a Filipino company but LEGO globally supports UNICEF. It's a combination of soliciting funds from those who come to buy tables or [seats] at the ball, but also during the ball, informing them more about disability issues or disabled children's situations and trying to engage them in our advocacy around the issues of disabled children.

It's both a fundraising advocacy and an information sharing situation which we hope will create a sort of rings-on-the-water situation where more people would get pulled in by those who are present at that night.

And of course, we're going to use our goodwill ambassadors, Gary V. and Anne Curtis, and Daphne Oseña-Paez, to really be there as well to advocate and to get people's activity action. Not only their money, but also their action, because some of the people who are coming are powerful people, people with a voice, people who can change things within their companies or in their environment, or also influence politicians.

UNICEF and LAJ Philippines-LEGO are putting together the first UNICEF Children’s Ball to help raise funds for the creation of the National Centers for Children with Disabilities. The first is now underway at the Philippine General Hospital. Photo by JL JAVIER

After the ball, what's going to happen with your initiatives?

Hopefully we will be able to raise money for four centers. Then we have to start negotiating basically with different provincial hospitals or regional hospitals. We have the Philippine General Hospital of course, but one more in Luzon somewhere, one in Visayas, and one in Mindanao. Exactly where ... It really depends on the hospital if they're willing to, if they have the capacity and so on.

The good thing with having it in and already established [in] the institutions [is] that we don't have to start from scratch. And having an enthusiastic hospital direct it, for example, will make all the difference. But it basically has to be in the big city where enough medical and social workers are present. But again, I hope it will be a sort of knock-on effect, that these four pilots will show that this is possible, it's cost effective, and really makes a difference for disabled children.


To find out how to help children with disabilities, visit UNICEF’s website. To donate to the National Centers for Children with Disabilities, visit the webpage for the UNICEF Children’s Ball.