Originally published in Herword.com on November 2, 2010
I write this in honor of a person with autism, Alphonse Cuaycong, who is sixteen this November.
Every year, on the third week of January, autism awareness comes to forefront in the nation’s priorities as we celebrate Autism Consciousness Week. World Autism Awareness Day, celebrated on April 2 of each year in perpetuity, furthers this cause by linking nations in efforts to bring awareness to a condition that breaches global barriers, race, gender, religion, and social status.
Autism awareness in the country has grown by leaps and bounds, thanks largely to the untiring and continuing hard work of Autism Society Philippines. They knock on doors previously closed to all our children. They create buzz for activities meant to highlight our children’s contributions to society. They work on information and education and early diagnosis. They do all that and more, motivated solely by altruistic concerns and a genuine love for our children.
And yet, despite their unending efforts to get heard, be seen, be known, be taken seriously, there remains a real disparity between awareness and action, between theoretical ideas and words and what exists out there in the real world. Let me state for the record that I hold the society in highest esteem and I do not mean to belittle their successes. The truth is, without Autism Society Philippines, the agenda of autism in the country would have remained in the back burners forever. Autism would just be another dirty little secret, hidden behind closed doors, locked away in dark attics, whispered but never seriously discussed. It is to their credit that autism has broken down some walls in our society — some, but not all. And this is where the gap begins.
With the uncertain prospects of the economic downturn, many countries with state- or nationally-funded programs for autism and other disabilities have been drastically cutting back on costs, shortening the lives of essential programs, or discontinuing them altogether. I have seen and heard how parents continue to fight for their children’s rights and while I am deeply sympathetic to their plight, I do not fully comprehend the depth of their loss or their anguish. In my country, we all live with the certainty that integral programs for the education of children with disabilities will long remain a pipe dream
We do not lack laws that protect and promote the rights of our children; on the contrary, we have some of the best ones. There’s RA 232, called the Education Act of 1982 which was enacted on September 11, 1982. The law mandates that “the State shall promote the right of every individual to relevant quality education, regardless of sex, age, creed, socio-economic status, physical and mental conditions, racial or ethnic origin, political or other affiliation. The State shall therefore promote and maintain equality of access to education as well as the enjoyment of the benefits of education by all its citizens.”
Even without it, however, our Constitution and Bill of Rights guarantee this very same right, that “the State shall protect and promote the rights of all citizens to quality education at all levels and shall take appropriate steps to make such education accessible to all” and that “the State shall provide adult citizens, the disabled, the out-of-school-youth with training in civics, vocational efficiency and other skills.” Furthermore, the Constitution states that “the State shall adopt an integrated and comprehensive approach to health development which shall endeavor to make essential goods, health and other social services available to all people at affordable costs. There shall be priority for the needs of the underprivileged sick, elderly, disabled, women and children.”
We also have the Magna Carta for Disabled Persons or RA 7277, signed into law on March 24, 1992 by then President Corazon Aquino. In itself, it is a beautiful law, one that sought to provide persons with disabilities the same rights enjoyed by their able counterparts — education, employment, health and social services. Making it even more significant, this was later amended by RA 9442 in April of 2007, and by virtue of this amendment, provisions of the original law were expanded to include fully realizable economic privileges such as discount for food and medicines, health care, transportation and education. These are meant to provide economic respite to many parents who support their children with disabilities without any state or local government funding.
But the reality is this: public education in the Philippines, while well-meaning and well-intentioned, is a mendicant policy, a victim of poor prioritization in a budget inflated with pork barrel and ridden with corruption. There are not enough classrooms for all the children. There are not enough books, and if there were, their quality is poor. There are not enough good teachers and certainly not enough teacher training to ensure that someone like comedian Melissa Cantiveros of PBB fame, a teacher in her home town, is proficient in the subject she has been chosen to teach (in her case, English).
If public education as a governmental policy is already ranked low in the state’s priorities, then consider how low special education is regarded in the very same totem pole. Most local governments have little or no funding for special programs. The laws are there, alright, but the money isn’t. There are no early intervention classrooms for children diagnosed early, except a few in private schools or institutions. Public special education teachers in the country work against lack of money for materials, lack of a good classrooms to integrate smooth working spaces for the children, and lack of manpower and help. If these classes survive at all, it is because of the guts and determination of these individuals — these heroes — who have put a stake in our children’s education and wellbeing.
Private special education, on the other hand, costs an arm and a leg and is usually out of the reach of the common people. The quality of education and programs offered also vastly differ from one school to another, from one program to another. Some are good, some are bad; all need lots of money. Moreover, private special schools, as our own experience has taught us, may turn your child away, something that we once thought was impossible in the setting of special education. Low-functioning kids are also at a disadvantage as private programs for adolescents favor those with higher-functioning skills.
Money, or the lack of it, remains only part of the problem. Political will is another. The Magna Carta for Disabled Persons provides this sector with financial help in the form of discounts, and even with the law, sometimes, these discounts are difficult to obtain (especially when it comes to medicines). The Implementing Rules and Regulations took their sweet time in coming, and even with the touted reforms in the way disability is viewed and treated in the country, this has yet to be fully translated into real life. The good news is that spurred by the National Council on Disability Affairs, many local governments have taken their own initiatives in making this law bear fruit. In our city, Alphonse has received his purchase booklet for basic goods and services, along with his National Council on Disability Affairs identification card.
And there are still dreams that will need more time to come to complete fruition: a year after the first sensory-friendly movie in September, what we have still are token showings on special occasions, and not the kind of inclusive, sensory-friendly and regular screenings we always dreamt of.
Still, I remain positive and hopeful that one day soon, children like Alphonse will finally get a fair shake in this society. Fourteen and a half years after diagnosis, my son has yet to fully experience the benefits of the laws set to safeguard his rights. Then again, perhaps the change may not even come within his time. Yet as long as we start to take the little steps to correcting these, as long as we remain vigilant and persistent, as long as we continue to fight for the rights of the more than half a million Filipinos with autism, hand in hand with Autism Society Philippines, perhaps that day may not be too long in coming.
I have great hope.