Keynote Speech of Unilab Foundation Executive Director Rhodora Palomar-Fresnedi at the 2014 Epilepsy Exemplar Awards on September 2 at the Crowne Plaza Hotel, Philippines
Marilyn Ortiz, MD, Jean Marie Ahorro, MD, Generaldo Maylem, MD, To the past and present officers of the Philippine League Against Epilepsy.
Merza Alejandrino, Reyson Claudio, Anne Rowena Trinidad, Kristine Cruz.
Eduardo Cabacungan, Janine Cabriga, Steven Rhine Carlos, Evan Marish Domalanta, Rainier Gonzales, Elaine Lee.
Doctors, awardees, families, friends, ladies and gentlemen, good evening!
Heroism comes in many forms. Just last night, many Filipinos stayed up to watch the heroics of our own Gilas players’ against the height and might of their opponents, displaying #pusotothemax.
The past few months have been all about heroes, too. We celebrated some iconic personalities in Philippine history - Jose Rizal last June, and Ninoy Aquino last August. They may have lived through different times and struggled against different adversaries, but they shared the same brand of heroism. They both fought courageously for worthy causes – to the point of sacrificing their lives in the process.
But heroism should not be relegated to the past, nor be limited to the grand gesture. Perhaps it’s time to rethink, and expand – our concept of heroism. We need to develop the new capability of recognizing a different form of heroism. This is heroism that is not about a single act of supreme sacrifice but one that is about many daily acts of courage and commitment to a cause.
Tonight in particular, we can look at heroism in an exceptional sector of society – comprised of people who fight through great odds on a daily basis. They are people whose heroism is not marked by their dying for causes, but living for them. We call them persons with disabilities, persons marked by exceptionality. Tonight, we simply call them exemplary. Tonight, we have them in our midst - courageous individuals who have displayed outstanding personal achievements they live with epilepsy.
The Exemplar Award takes its name from the Latin word exemplum, which means “sample, or imitation.” Very apt, considering how each and every one of the nominees and awardees serve as inspiring examples to all. Their stories need to be shared to a much wider audience.
Exemplar speaks nothing of exceptions or exceptionalities. Exceptionality implies a sense of being below average, abnormal, different. This is the mentality that we, in Unilab Foundation, are working to eradicate. We have experienced this firsthand when we hired a PWD, Vico, an adult with autism.. His employment was part of our efforts in Project Inclusion, a program that runs on the thesis that PWDs have something exceptional to offer, beyond their exceptionality. Employing a PWD was an eye-opener for us. We witnessed how Vico has grown into his own, once he was given a supportive environment, conducive to his gifts. We have also experienced how PWD employment can be good for the team, and good for the business.
Our findings, together with 28 other cases of PWD employment nationwide have since been compiled into a study, and will soon be available in a book. Project Inclusion has changed our perspective, in the way that we know it will change others’ perspectives, once they see the possibilities it offers.
Why should we open the conversation for inclusion? Because of the danger of exclusion, the by-product of not bothering to understand the nuances of individuals. The danger in focusing on “defects” is that we fail to see the gifts – what is exceptional or unique about the individual, which is worth exploring, understanding, and even celebrating.
But we need to go beyond celebration. Knowing that this room is full of passionate individuals who stand for saluting the uniqueness of persons, regardless of disparities, diversities or conditions, I would like to present everyone with a challenge: to defy the norm when it comes to epilepsy, and create a new one – a new world order, so to speak.
You see, the NORM isn’t a reality we always have to accept or live with. In fact, I credit our doctor-colleague, Aidz, who says NORM could sometimes mean “Not Often the Right Mindset.” Bingo.
What is the norm these days? Here’s some trivia from the Philippine League Against Epilepsy.
Epilepsy affects around 1% of the global population—probably higher in developing countries like ours.
Of the major chronic medical conditions, epilepsy is among the least understood, despite the fact that one in three adults know someone with the disorder. And living with epilepsy presents challenges affecting many aspects of life. In fact, the leading non-medical problem confronting people with epilepsy is discrimination—in education, employment and social acceptance.
When you consider how many awardees we have here tonight, or how history itself records countless world leaders, master artists, influential writers, mathematicians, scientists, politicians and athletes who lived with epilepsy, and yet achieved great things.
They are testament to the fact that epilepsy does not, and should not, pose a limitation to mental and physical accomplishments.
It is from this mindset that a new norm can emerge – a new normal where heroism thrives, even among PWDs.
PWD heroism may deviate from the traditional concept of heroism, but it is just as – if not more – inspiring.
For one, PWD heroism is about the small but brave struggles against disease and discrimination.
PWD heroism is about the courage required every single day to get up and go facing each day with unbridled optimism.
It is about the commitment to the extra care for and the acceptance of the physical body and its limitations. It is the faithfulness to a regimen - from taking medication regularly, to ensuring enough sleep or avoiding alcohol.
It is about the constant dedication to self-awareness and education about their disorder, always listening to the signals their own bodies send to warn of a seizure.
PWD heroism is about the patient way they educate others about their disease, bravely speaking up, seeking to be understood and accepted.
PWD heroism is also different in that it is about bayanihan. They say it takes a village to raise a child. Well, it also takes bayanihan to bring out the exceptional in exceptionality. There is something extraordinary about the way a PWD can rally people together. After all, there is no bayani without bayanihan.
All Exemplar Awardee here tonight acknowledged that they owe their courage and accomplishments to the people around them.
The interviews with the Exemplar nominees yielded a variation of the same theme: “I wouldn’t have been able to handle this if I didn’t have the support of my family and friends.”
Thus, the Exemplar Awards are not just about celebrating the awardees, but every supportive person around him – doctors, parents, friends, coworkers, PLAE doctors committed to this cause, those who helped with the epilepsy caravan – for their understanding, acceptance and efforts, big and small. The awardees simply could not become examples/exemplar without the loving eeducated the people around them - they all make PWD heroism possible.
The Exemplar Award, then, is truly a triumph that belongs to everyone here, because it represents something bigger than the nominees and the awardees themselves – the materialization of a healthier society, a healthier Philippines. The Exemplar Award boldly declares that there is a future for differently abled persons here in our country. It is testimony that the world is changing – that we are progressing into a society wherein no person, with or without disability, will have to live life unable to contribute his whole self to higher causes.
PWD heroism is everywhere.
Tonight’s heroes are individuals with epilepsy who come from all walks of life, and who all contribute uniquely. But the real victory will come when PWD heroism gives way to mainstream heroism – that is to say, we can’t stop until every person with epilepsy, with disability, can contribute to the world. We’ll know we’ve achieved it when the rest of the world understands that people with epilepsy are more similar to than different from the rest, when they no longer see them as persons with disability – but persons with this ability, with unique skills and contributions. We’ll know we’re there when every person can say, “I am valued. I belong. I make a difference.”
May tonight be the beginning of a new norm, of a continuous celebration of every individual, of a healthier and inclusive Philippines.
Again, to all the exemplar individuals in this room, congratulations!
---
Keynote Speech of Unilab Foundation Executive Director Rhodora Palomar-Fresnedi at the 2014 Epilepsy Exemplar Awards on September 2 at the Crowne Plaza Hotel, Philippines