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Problems abound in implementation of PWD benefits

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LGBT community remembers those who died of HIV

LGBT community remembers those who died of HIV

By PATRICK KING PASCUAL

“DENVER” (not his real name) is HIV-positive. He has been an outpatient at one of the HIV/AIDS treatment hubs in Manila for seven years already. And he just learned recently that he can avail some benefits and privileges from the government.

“I cannot blame them for not orienting us, the patients, that we can apply for a PWD ID, because they’re attending to a lot of patients already. We just hope that our government improves the dissemination of important information to the public,” Denver said.

Problems like that of Denver have been encountered by sick people whose disabilities are not physically obvious. It’s not just inadequacy in information dissemination but more on the issue of what is “chronic illness.”

Republic Act 7277, the Magna Carta for Disabled Persons defines Disabled Persons as those “suffering from restriction or different abilities as a result of a mental, physical, or sensory impairment, to perform an activity in the manner or within the range considered normal for a human being.”

R.A. 7277 was amended by Republic ACT 9422 granting additional privileges and incentive to Persons with Disabilities (PWD).

It states that “Identification Cards shall be issued to any bonafide PWD with permanent disabilities due to any one or more of the following conditions: psychosocial, chronic illness, learning, mental, visual, and orthopedic, speech and hearing conditions.”

Chronic means a condition or disease that is persistent or otherwise long-lasting in its effects. HIV is one example of chronic illness which also includes asthma, diabetes, cancer lupus, and many more.

Problems arose when many persons suffering from a chronic disease but did not look physically ill were denied discounts by drugstores and other establishments.

Denver, in fact, said when heard some of his fellow PLHIVs (people living with HIV) tried to inquire and request for necessary papers needed for the PWD ID application, one attending nurse remarked, “‘hindi naman talaga kayo PWD, mas marami pang ibang naka-admit dito na mas kailangan ng PWD membership.

In a Nov. 22, 2011 memo to a City Social Welfare Office in Alabang, Social Welfare Undersecretary Alicia R. Bala laid down the policy on 20 percent discount for persons with “chronic illness.”

Bala said, “It should be disability resulting from chronic illness that should be included in the ID.”

“For persons with skin allergy or asthma, although it is under chronic illness yet it is not included as disability whereas for diabetic person, if such illness results to a partial or total blindness, then a person can be considered PWDs because it affects his/her vision,” Bala further said.

Paz, a 40-year-old PWD who’s currently dealing with scoliosis, also expressed her frustration towards the government for not having enough facilities to accommodate them.

“People line up for hours to catch the MRT, taxi stands, and in bus stops, I don’t understand why the government is not doing anything for us,” she complained.

Carmen Zubiaga

Carmen Zubiaga

Carmen Reyes Zubiaga, director of the National Council on Disability Affairs, said “the LRT and MRT are implementing a special coach for PWDs, senior citizens, and pregnant women – they have to be in the priority lane. All they have to do is to show their PWD IDs.”

The Accessibility Law or the Batas Pambansa Blg. 344 t mandates certain buildings, institutions, establishments, and public utilities to install facilities and other devices that can help accommodate PWDs.

“Although some institutions and establishment have implemented the necessary changes for PWDs, it’s [still] very sad to say that after more than 30 years of being a law, it’s only now that government agencies and even the private entities are really cramming to catch up with the implementation of the Accessibility Law,” Zubiaga said.

Penalty for violation or none implementation of the Accessibility Law provisions includes imprisonment of not less than one month but not more than one year, or a fine of P2,000 to P5,000, or both.

“Even though we have a law that protects us, it’s very vague in terms of penalties and sanctions for those who do not comply. We are now coming up with amendments to it. We are now developing the National Comprehensive Accessibility Law, which does not only cover physical environment, but also information and communication technology that will cater to our blind and deaf members,” Zubiaga said.

Despite the setbacks, Zubiaga is still positive because Filipino PWDs are becoming more aware of their rights and are asserting for their implementation. “We also educate the parents, so they can instill in their children with disabilities that like any other children, they have the same set of rights.”


3 ways to live normal and productive life even with lupus

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By MARILYN MANA-AY ROBLES

They are persons with lupus.

They are persons with lupus.

ROCHELLE, a young lupus patient of 8 years, received a text message from the president of the Lupus Foundation reminding her of their regular 1st Saturday of the month meeting.

She responded, “Gustong gusto ko umattend kaya lang mahina pa ako. Minsan ba nakaramdam ka ng para kang nawewengdang (I would very much like to attend but I am still weak. Have there been times when you felt like you were going crazy)?”

The president, herself a lupie of 20 years replied, “Ay, naku, oo naman. Hindi mo maintindihan kung anong mali sa yo. Pero lilipas din yan (But of course, I have. You can’t understand what is wrong with you. But that will pass).”

Ah, lupus. Such an arrogant sounding disease! It is complex. It devours a patient’s physical well-being and causes them to be emotionally battered. Sometimes, a patient even looses her/his grasp of reality.

The Lupus Foundation of American describes lupus as a cruel mystery as it is hidden from view and undefined, has a range of symptoms, strikes without warning and has no known cases and no known cure. Its health effects range from a skin rash to a heart attack. Lupus is debilitating and destructive. It can be fatal.

There are four kinds of lupus. They are neonatal lupus, discoid lupus or lupus of the skin, drug induced lupus and systemic lupus erythematosus (SLE). When people speak of lupus they usually refer to SLE. Systemic lupus erythematosus is difficult to diagnose because its signs and symptoms mimic those of other ailments. The most distinctive sign of lupus however is a facial rash that resembles the wings of a butterfly which unfolds across both cheeks. This occurs in many patients but not in all cases of lupus.

No two lupus patients manifest the same symptoms. Each patient is distinct from the other.

Some people are born with a tendency toward lupus which maybe triggered by infection, certain drugs or even sunlight.

While there is no cure for lupus, treatments can help control symptoms. Immunosuppressive drugs are predominantly used. In 2011, after 50 years of research, the Food and Drug Association of America approved the first drug for lupus: Belimubab.

Worldwide, there are five million individuals with lupus. At least 70 percent of those diagnosed are afflicted with systemic lupus erythematosus or SLE.

Lupus affects people of African, Asian and Native American descent three times as often as it affect whites. Nine out of 10 people with lupus are women.

In the Philippines, there are over 2,000 lupus patients nationwide. The most famous lupus patient in the Philippines was the late President Ferdinand E. Marcos.

Lupus is a lifelong disorder. To enhance understanding and appreciation of the disease among patients and their caregivers, various lupus support groups have been formed throughout the country. They are found in Iloilo, Bacolod, Cebu, Davao, Baguio, SocSarGen, Manila and South Luzon.

It is imperative that a lupus patient is well informed of the disease to enable her/him to carry on a meaningful and productive life despite the profound physical and emotional demands imposed by lupus.

Here are three suggested coping mechanisms addressed to individuals with lupus to make their lives worth living still.

  1. Brace yourself for the unexpected. Lupus can affect just about any organ of your body. Your defense mechanism is weak. You cannot predict your physical well being. You can feel tired one moment and be energetic the next minute. Keep calm. Relax. Think beautiful thoughts. Such is lupus.
  1. Brace yourself for the worst. Lupus can cause havoc in your body. You may need to have a blood transfusion not only once but maybe eight times. You may have to sleep while seated because as your back muscles ache badly thus preventing you to lie down. You eyes may need surgery because of cataract or glaucoma. You may be required to take massive doses of prednisone to keep a bad flare at bay. Worse, these things can happen all at the same time. Keep calm. Relax. The worse is yet to come. Such is lupus.
  1. Brace yourself for the inevitable. When your whole body is ravaged by lupus and you can no longer master enough strength to bear the pain, pray. Pray that your loved ones be spared of further financial burden because of lupus. Pray fervently that God will take pity on you and finally allow you to suffer no more. Keep calm. Relax. Let go. Such is lupus.

In the end, it is accepting the existence of lupus in one’s life that spells the difference.

A PWD in love in ‘The Trial’

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By PABLO A. TARIMAN

John Lloyd Cruz

John Lloyd Cruz

FOR a change, actor John Lloyd Cruz departs from his ‘kilig’ movies to offer something different for Filipino moviegoers.

He figures in a new Chito Roño film called “The Trial” and it is about a young man with mental disability  who finds himself in trouble in a world dominated by so-called normal people.

As it turned out, the role was out-of-this world and the character exploration took another route which he finds unforgettable.

“Just when you least expected it, you get a role totally opposite of what you do and another director comes in to give you another way of exploring the role. This is a dream come true for me. Not that I disliked the romantic parts I am identified with. But once in your acting life, you also aim to accomplish something different,” he says.

The project took some time taking off with scriptwriter Enrico Santos initially brainstorming with his co-writer on what they could do for the network’s anniversary.

Over bottles of beer along Tomas Morato, the storytellers picked their brain.

Chito Roño

Chito Roño

Santos recalls: “The way it looked, the network has done everything from horror to comedy and we figured we need a different family drama to balance the usual menu for moviegoers. And so we came up with an unlikely character who loved with all his heart but is often ignored because of his limited mental capacity. We worked on how it should do well in the box office but at the same time giving our moviegoers a chance to meet new characters unexplored in previous family drama offerings. We figured only Direk Chito (Roño) can give it a different look and appeal.”

Roño admits he is not fond of doing tried-and-tested Filipino dramas. “I tend to avoid dramas because on the whole, they tend to be so similar. Of course Filipinos love dramas and it is the culture of our cinema. But I don’t like the way we over dramatize everything. But I am more excited on how so-called ‘dysfunctional’ persons live and love. When the role fell on John Lloyd’s (Cruz’s) lap, I communicated what I want. I told him study the role very well. I don’t want another stereotyped characterization of  people with disabilities. I want an actor who can explore the heart and mind of the character and he delivered. The long nights of shooting and the fatigue that went with it were all worth it. The actors gave me what I wanted.”

While the film has several court scenes, Roño pointed out his latest output is not a comment on the country’s justice system. “My assignment is family drama so there was no time to even think about that. Definitely it is something I want to do with the right project.”

The Trial posterHow does one explain the Filipinos’ penchant for family dramas?

The director offers an explanation: “I think Filipino audiences see their lives in the movies and in the teleseryes. Our families are close and they are always together watching movies or watching soap operas in the living room. They like drama about families because they can easily relate. They can see themselves in the story and it is here where they easily pick up emotions. They like the happy moments but they also relate to the sense of despair the families go through. In the process, you see dramas involving families going through trials in their own lives. In these scenarios, they can easily relate.”

Meanwhile, Cruz shares an insight into the character he played: “Midway into the last two shooting days, I finally saw what my character is made of and what he went through in this film. What I learned doing this part is that a person with disability  or not, people love the same way the so-called normal people do. Social barriers no longer count when you fall in love. My character gave me a memorable portrait of a person with disability falling in love and was ready to fight for it. I would say this role was a very profound experience and Direk Chito helped me discover new ways of exploring the character.”

“The |Trial” opens in all theaters Oct. 15.

Teaching in silence

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Michelle Gabisan, seen here with the writer, attends the oath taking ceremony for new teachers in 2012. Photo by JOHN PAUL ECARMA MAUNES

Michelle Gabisan, seen here with the writer, attends the oath taking ceremony for new teachers in 2012. Photo by JOHN PAUL ECARMA MAUNES

By JOHN PAUL ECARMA MAUNES

CEBU CITY— It is a typical morning rush in a community public school in Barangay Bulacao, Pardo in Cebu City. Students lugging heavy schoolbags head towards their classrooms in a hurry, some with parents in tow.

In one particular classroom, the scene is even more chaotic: 15 students, aged 14 years and below, speak animatedly with one another, frantically waving their hands around, some teasing their classmates and others running around tables and chairs.

In the center of it all, the teacher, not much taller than her students, looks unperturbed. She is busy preparing for the day, arranging her things on a table in front of the class. Behind her, a poster of illustrated alphabet hands hangs above the blackboard.

The clock turns 8, the school bell rings. No one in class hears the bell. The students go about their animated conversations, oblivious of the shrill ring of the bell.

It is a typical scene at the Bulacao Community SPED Center, where Michelle Gabisan, 30, teaches a multi-grade class of Deaf students.  Like all her students, Michelle is also Deaf.

The first child of a bartender father and a stay-at-home mother, Michelle was not born deaf. But when she was four years old, she contracted meningitis and an over dosage of antibiotics cost her her sense of hearing.

When Michelle started school, her parents sent her to a mainstream private school, not knowing she could no longer hear.  Her parents and her four siblings thought she was amang, a Cebuano term for mute.  As a result, Michelle completed her entire elementary education in a hearing class where she was the only Deaf person.

It was not easy.  Michelle had to learn her lessons through lip reading. “Reading the lips of my teachers, it was really difficult for me to get what they were trying to say whenever they cover their mouth or during lectures,” Michelle said using Filipino sign language or FSL.

When the teachers spoke and turned their backs to write on the blackboard, for example, Michelle felt shut out from the class.

Though she struggled, Michelle did well. “I can still remember my classmates in elementary copying my notes and asking for answers every time we have a quiz in class.”

When she reached high school, she transferred to the First High School for the Hearing Impaired, a public high school in Basak, Cebu City. For the first few days, she felt disoriented because the school used a different language. There was no talking, just hand gestures and facial and body expressions to communicate.

With neither knowledge nor experience in sign language, Michelle felt lost. “I was afraid and confused during my first few days in the Deaf school. I really didn’t know yet about sign language and my Deaf cultural identity,” she said.

As days passed, she learned to use sign language, and slowly understood that she was Deaf, a person who belongs to a different culture and language apart from those who can hear.

This realization was a breakthrough for Michelle and her family, who until then, was in denial that she was different.

Graduating one of the top students in her high school, she decided to enroll at the University of Southern Philippines (USP) in Cebu for her tertiary education because of its programs for Deaf students wanting to become teachers.

A scholarship and financial assistance from a Deaf friend got her through a difficult period and she managed to graduate in 2006 with a degree in Elementary Education, major in English.

“I did not allow poverty, money or any other reason to be a barrier to stop me from finishing college,” Michelle said. “Even when I was still in elementary, I considered myself equal to my hearing classmates. There was never a time that I had self-pity because I was Deaf.”

In 2009, Michelle took the Licensure Examination for Teachers (LET) but failed. She tried again three years later and passed. She was the only Deaf to pass the exam in 2012.

Relating her experience, she said it is not easy for Deaf examinees to pass the LET. For one, there is no examination matrix tailored for them and no sign language interpreter during review class for LET.

During the examination itself, sign language interpreters are not allowed to accompany and assist the Deaf examinees, who are left out every time instructions are given.

Michelle Gabisan with her students. Photo by JOHN PAUL ECARMA MAUNES

Michelle Gabisan with her students. Photo by JOHN PAUL ECARMA MAUNES

“We struggled with the jargon,” Michelle said. “We felt discriminated against and felt that the entire system wanted us to fail. I felt sorry for my other deaf batch mates and it breaks my heart knowing that it is their dream to teach and help other deaf students.”

Now Michelle serves as a volunteer teacher in Bulacao. She does not draw a salary, though she was promised that she would eventually be hired when the Cebu City Division of the Department of Education opens a new job item or when someone retires.

Unfortunately, she has to compete with other teacher aspirants, even though she has a unique set of skills valuable to Deaf students.

As a Deaf teacher who knows FSL, Michelle is able to naturally connect with her Deaf pupils, who respond actively to her, which is not the case for a class under a hearing teacher who constantly asks students for confirmation that she is being understood.

According to Michelle, most teachers in charge of Deaf kids do not know sign language well, causing a gap between them and their students who then become either inattentive or bored. They end up performing poorly in class under a hearing teacher.

Compared to other countries, the Philippines has no system in place or curriculum for teaching the Deaf. It is among only a few countries in the world that do not recognize the natural language of the Deaf, failing to integrate it in the educational system.

Michelle knows the struggles of a Deaf student; she was one, after all.  And she is determined to be personally involved in providing new approaches to the old practice and system of teaching. “We don’t want the Deaf children to encounter the bad experiences we had when we were students.”

Even though she does not get a single centavo for her efforts and even has to spend from her own pocket just to be able to teach, Michelle is determined to press ahead. “I’d rather volunteer in this school and not have anything in return than get a paying job somewhere else but knowing that the Deaf kids are left with no quality education.”

Learning about Down Syndrome from Celina

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Text and photos by OFELIA EMPIAN

Celina Sakiwat learns basic life skills like doing household chores in school.

Celina Sakiwat learns basic life skills like doing household chores in school.

LA TRINIDAD, Benguet—She whirls around the room with her apron on. She wipes the table clean,then stacks the yellow plastic plates, and forks and spoons in the basket.

Her teacher beams and praises her student: “Very good!”

Celina Sakiwat smiles, sits and waits for her sister to fetch her from school.

It’s a routine Sakiwat, 17, and born with Down Syndrome, has been doing for the past five years.

“She is one of the most diligent students we’ve had here,” said Violeta Santos, adviser of the Vocational Class at the Benguet Special Education (SPED) Center here where Sakiwat is enrolled.

In their class, Sakiwat is among the oldest and the only one with Down Syndrome. In a country where one in 800 children is born with the genetic condition every year, the awareness of the disability remains low. For Sakiwat’s parents, it took years before they knew what their daughter had, and many more years before they could send her to a proper special education school.

February is National Down Syndrome Consciousness Month, a time to raise awareness about the condition and promote rights of people with the disability to special care, education and services that will allow them to live decent and productive lives.

Sakiwat is the fourth child of six. Her parents are vegetable farmers in Bauko, Mountain Province who spend whatever income they get for their children’s education. At least two have graduated from college, both scholars.

It was only when Sakiwat was brought to a special school that her family found out about her exact medical condition. She had been born in their home, and when brought to the hospital, the doctors simply said Sakiwat had “inborn” abnormality.

“They never told us that she had Down syndrome and what we should do about it,” her mother Marjorie said.

Because of her delayed development, Sakiwat was able to attend school when she was already 10. For a year and a half, her teachers said while they found her to be “diligent,”she was lagging behind in class.

On top of that, Mrs. Sakiwat said: “She was bullied in school and often came home crying.” After the second grade, she quit school. For two years she stayed home, helping her parents with chores in their vegetable farm.

But, her father Sotero said, “we had to send her to school because we realized it’s not good for her not to be educated.”

Celina, 17, copes well in class and is known for her dance moves.

Celina, 17, copes well in class and is known for her dance moves.

It was through a neighbor that the family learned of a SPED school. So in 2009, at age 12, Sakiwat went back to school. Her brother brings her to school and her sister fetches her from class. But by next school year, Sakiwat might have to stop school in La Trinidad because of her siblings’ busy schedule.

“Sakiwat might go home to Bauko with our parents,” her sister Chona said.

Teaching special kids

The Benguet Special Education Center allows children like Sakiwat to decide whether to stay in school. “Until she likes attending our class we will accommodate her, maybe until she’s 25 years old?” Santos said.

The school has nearly 100 students and nine SPED teachers.

In the vocational class, Santos teaches basic life skills like doing chores and caring for household items. Students are taught to read road signs, danger signs in appliances, and poison warning labels.

The classes also cover skills enhancement so Sakiwat and special students like her can land a job in the future. The school will eventually recommend them to other vocational institutions for higher learning such as institutions accredited by the Technical Education and Skills Development Authority (TESDA).

A teacher since 1999, Santos said teaching students with special needs is challenging yet fulfilling. “You have to repeat what you’re teaching again and again, with patience.”

Special education teachers like her need more training programs, she said, as these would help them deal with their students’ various special needs.

“That’s why we (also)need the parents to help us care for their children,” Santos said.

The school conducts seminars for parents with special children and those with Down Syndrome, who are not physically as active.

Parents need to create an environment to make them more of a homebody, Santos added. They can also learn crafts making, baking and sewing.

Sakiwat, for example, can wash the dishes and sweep the floor. “I haven’t tested if she can care for a baby yet,” her teacher said.

Santos said children with Down Syndrome can have mood swings, an aspect of their condition that needs to be closely monitored. This and other factors could affect how they can be functional.

Although her students with the condition have never landed a regular job, Santos said SPED does help their students find work based on their ability to handle a certain jobs. “It’s good if they are employed by their own relatives who have businesses,” she said, fully aware of the intellectual barriers children like Sakiwat face.

Santos said she hopes a training center will be built someday to accommodate children with special needs until they become adults. The center will further boost their skills for their possible employment in the future.

Caring for children with disabilities

For now, when children like Sakiwat leave school, teachers won’t be able to track their progress, as there is no proper monitoring mechanism in place.

In La Trinidad, the Municipal Social Welfare and Development Office (MSWDO) said it employs “roving day care workers” who visit families with children with special needs. Of the 346 persons with disabilities (PWDs), 166 are children and 39 of them are classified with intellectual disabilities.

When Sakiwat goes home to Bauko, a four-hour drive away from here, the services will be limited. She will be counted among the 212 PWDs in her hometown, 27 of them with intellectual disabilities.

The SPED school in La Trinidad looks after special children like Celina who are allowed to stay until they are ready for higher training.

The SPED school in La Trinidad looks after special children like Celina who are allowed to stay until they are ready for higher training.

Barangay health worker Elias Bangloy said he and his colleagues monitor PWDs but the government can address only their immediate needs.

Iyong simple lang na house visit ang ginagawa ko kung di sila makapunta sa clinic (I conduct house visits if they could not go to the barangay clinic),” he said. The barangay can provide PWDs multivitamins for common colds, vaccines for anti-flu and pneumonia and drugs to ease blood pressure problems.

Marichu Cominga of the MSWDO in Bauko also said it can only give “medical assistance and referral for assistive devices to other agencies,” due to its limited capacities to aid PWDs.

As for children with intellectual disabilities, she said the office advocates that they be sent to the SPED schools. But it is tough for the parents who can’t afford the costs, Cominga said. Besides, she added, the schools are far from their homes.

Sakiwat’s eldest sister, Charmy, however, has high hopes for her sibling. “For me, I hope she can become a dance instructor teaching kids with special needs because she’s a very good dancer.”

Charmy also described Sakiwat to be the baby in the family, obedient and loving. “If I would have my own family, I would love Sakiwat to take care of my kids,” she said. “I can picture her also taking care of my other siblings’ children.”

While it’s not yet clear what Sakiwat’s future might be, she focuses well on the present. In class, as she waited for her sister to come get her, Sakiwat opened a box of beads. Slowly, one bead at a time, she threaded them together with nylon.She was so careful, aiming for precision, that she failed to notice her sister arriving.

“Celina, enta et sumaa (let’s go home),” her sister prodded her in Kankana-ey. And like the Girl Scout that she is, the beaming Sakiwat rushed to her sister but not before putting every bead and box back to their proper places.

Wanted: PWD-friendly public facilities

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Text and photos by JAKE SORIANO

The Philippines until now has no accessible public transport for persons with disabilities (PWDs).

Advocates lament this sad fact, and are calling for a more PWD-friendly and inclusive system for the sector. After all, PWDs travel too. (See Public transport still not PWD-friendly – advocates)

As signatory to the United Nations Convention on the Rights of Persons with Disabilities, the country has a commitment to ensure the access of PWDs to public transportation, they point out.

“Many establishments (are now) complying with the accessibility law,” says National Council on Disability Affairs (NCDA) acting executive director Carmen Zubiaga.

To a certain extent, that is. “Except the transport sector,” she adds.

What then does a PWD-accessible public transport system look like? What features make it friendly to the sector? What about the other public facilities?

These photos, taken from five different cities overseas, offer a glimpse of how PWDs can be assisted and can guide public and private sector planners on how to build PWD-friendly facilities.

Munich Airport, which ranks among the best in the world, provides mobility assistance services for passengers.

Munich Airport, which ranks among the best in the world, provides mobility assistance services for passengers.

Barcelona’s El Prat Airport does not only have restrooms for PWDs, but these restrooms also have signs in Braille.

Barcelona’s El Prat Airport does not only have restrooms for PWDs, but these restrooms also have signs in Braille.

Although relatively small and less busy compared to other airports in Germany, Berlin’s Tegel Airport has seats reserved for PWDs.

Although relatively small and less busy compared to other airports in Germany, Berlin’s Tegel Airport has seats reserved for PWDs.

Trains in Zurich are easy for persons using wheelchairs to get in and out of because there are no gaps between platforms and carriages.

Trains in Zurich are easy for persons using wheelchairs to get in and out of because there are no gaps between platforms and carriages.

Zurich Airport, also one of the world’s best, displays prominent directions to special assistance desks.

Zurich Airport, also one of the world’s best, displays prominent directions to special assistance desks.

Barcelona metro trains have areas reserved and designed for PWDs, providing enough space for wheelchairs and even seat belts.

Barcelona metro trains have areas reserved and designed for PWDs, providing enough space for wheelchairs and even seat belts.

Ramps for wheelchairs on Barcelona roads are wide enough and are prominently marked.

Ramps for wheelchairs on Barcelona roads are wide enough and are prominently marked.

Not only does the famous Louvre Museum in Paris have lifts, but it also provides free admission for PWD visitors and one assistor.

Not only does the famous Louvre Museum in Paris have lifts, but it also provides free admission for PWD visitors and one assistor.

Paris Charles de Gaulle Airport provides different forms of assistance to passengers with disabilities.

Paris Charles de Gaulle Airport provides different forms of assistance to passengers with disabilities.

The good news is NAIA’s restrooms are now being constructed, although elevators remain a problem.

The good news is NAIA’s restrooms are now being constructed, although elevators remain a problem.

Deaf triathlete helps next generation of deaf athletes

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Lester Lagos shares his story with deaf student athletes at the  Cebu City Sports Complex. Photo by JOHN PAUL ECARMA MAUNES

Lester Lagos shares his story with deaf student athletes at the Cebu City Sports Complex. Photo by JOHN PAUL ECARMA MAUNES

By JOHN PAUL ECARMA MAUNES and JAKE SORIANO

CEBU CITY – Deaf triathlete Lester Lagos remembers that afternoon in Cebu very well.

Visiting a training session of deaf student athletes after taking part in an international triathlon competition in Cebu, he was deeply disheartened to see them practice barefoot, and without the proper sports gear or even a coach to provide mentorship.

An accomplished athlete, the 31-year-old Lagos was convinced the young runners had immense potential but were hindered by inadequate facilities and lack of institutional support.

So he quickly gathered the students with hearing disability and gave them advice about proper running form and techniques.

“Just be you and do what you want to do,” he told them.

“Never think of yourself as inferior or as a disabled person.”

Lagos shared his own story to the student athletes that afternoon. He was five years old when he got sick, he told them. What started as high fever eventually led to his deafness.

“As a deaf person, I am blessed,” he tells VERA Files. He recognizes that not everyone had the same family support that he had growing up.

This family support is what he credits for his being an accomplished athlete, and having an impressive academic record as well.

Without needing a sign language interpreter, Lagos finished secondary mainstream college at the Assumption English School in Singapore.

After this, he took three more courses, first in multimedia arts, then in culinary arts and finally in anti-gravity yoga, a type of fitness exercise that combines yoga and aerial acrobatics.

He became the first-ever internationally certified deaf anti-gravity yoga instructor in the world, counting among his clients local actress Judy Ann Santos.

But it was in sports that Lagos truly made his mark, both as an athlete and later as an advocate for giving support to athletes with disabilities.

Lester Lagos is the only deaf triathlete to participate in the prestigious international event Iron Man 70.3 in Cebu and in Subic Bay. Photo from IRON MAN 70.3

Lester Lagos is the only deaf triathlete to participate in the prestigious international event Iron Man 70.3 in Cebu and in Subic Bay. Photo from IRON MAN 70.3

He has been a competitive swimmer for 20 years both locally and internationally, and was part of the Philippine Swim League coached by former Olympian Susan Papa.

He also excels in triathlon, and is in fact the only deaf triathlete to participate in the prestigious international event Iron Man 70.3 in Cebu and in Subic Bay.

Because of his achievements, Lagos was awarded in 2013 Most Outstanding PWD by the government of Makati City, where he now resides.

Not content with those accomplishments, he founded in January 2014 his own non-profit, the Philippine Aquatic Sports Federation, to properly train deaf children in swimming and running by providing them with access to much needed training equipment, among others.

On top of this, he also gives free training to impoverished deaf children in special education (SPED) centers in Manila.

In doing all these, Lagos says he hopes to help the next generation of athletes who are hindered not so much by their disabilities but by the lack of financial and institutional support.

In 2012, VERA Files reported that the Filipino Paralympians who participated in the games in London had to scrounge for monetary support after receiving only P2 million from the government. (Read No medals for Ph Paralympians)

In a forum last January, Sen. Sonny Angara said that he would push for sufficient government funding for the country’s paralympics athletes.

Kaso ang problema, iyong regular na atleta, hindi nakakakuha ng suporta. Pano pa kaya iyong mga atletang may kapansanan (But the problem is that even athletes without disabilities do not get enough support; what more athletes with disabilities),” the senator said.

Also earlier this year, athletes participating in the Special Olympics in July sought help for their roundtrip air tickets to Los Angeles. In previous years, financial woes had led to athletes dropping out of the competition. (Read LA-bound ‘special’ Olympians seek help for airfares)

For deaf athletes meanwhile, besides financial worries is the problem of being excluded and not being able to compete at all in national sports events as the Palarong Pambansa.

That afternoon Lagos spent with the deaf athletes from Cebu ended with high fives and warm hugs.

Along with other advocates, he submitted a proposal to the Cebu City government to fund swimming trainings for deaf students. He says he has yet to hear back from local officials.

Lagos says that he simply cannot bear to see young athletes with so much potential left to train all by themselves.

“This situation is adding insult to injury,” he says.

“Setting the disability aside, you will see athletes with full potentials.”

From handmade Braille teaching aids to rooms on the second floor at Manila’s biggest SPED high school

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rmhs

Text and photos by MARIA FEONA IMPERIAL and YVETTE B. MORALES

WHEN she walked into her first day of teaching back in 2007, Leah Reyes was rendered speechless. It was not because all eyes were on her as the new substitute teacher. Rather, not all of the students in the classroom could see.

Reyes had been assigned to teach mathematics at the Ramon Magsaysay High School Manila (RMHS), which integrates students with disabilities in regular classes where most students have none. Fresh from college, she had not been trained to teach highly visual subjects like geometry and trigonometry to students who are blind or with low vision.

“I did not know anything,”she said.

“I thought the letter ‘A’was written as is. Turns out, there is only one dot,”she added, recalling her struggle in comprehending Braille handwritings.

To adapt to her new job, one of her first adjustments was relying on senses other than sight to get her lessons across.

“I just made my voice loud enough as I read what was written on the board,”she said.

SPED teacher Leah Reyes

SPED teacher Leah Reyes

In eight years, Reyes, now 29, would become a multi-awarded special education (SPED) implementer, fulfilling her “calling”on that day in 2007.

But those years were filled with more demanding adjustments. To accommodate the needs of her students, she had had to improvise teaching materials on her own, sometimes using her personal funds because of limited resources from the school.

She would have to do more of the same as another school year begins. Her story, and more broadly the sad state of special education in RMHS, carries special significance for all students with disabilities in the country.

The nation’s capital Manila has only three high schools for SPED learners. RMHS, which last school year had 49 students with special needs, is the biggest of the three.

If there are five of them, then you have to make five distinct copies

Educational and assistive materials for students with disabilities are adequately funded, according to the Department of Education (DepEd).

The department funds, for example, the publishing house of nonprofit Resources for the Blind (RBI), said Arsenio Manalo, Quality Assurance Division supervisor of DepEd National Capital Region (NCR).

RBI gives free Braille books upon the request of schools, he said.

Yet when Reyes first started teaching, she was able to work with only a few available teaching materials for her students with disabilities.

Every school day afternoon, her students would visit her at the SPED resource room for a follow-up session. These sessions are designed so students would further understand what was taught in class. From their questions, Reyes was to create instructional materials to clarify lessons that were still unclear.

“If there are five of them, then you have to make five distinct copies,”she said. RMHS had 15 students with visual disabilities last school year. Sharing of materials was not possible because students who are blind and those with low vision have different needs. Modifications in color and font sizes might thus be required.

Resourcefulness, Reyes said, was often her only option. She improvised a thermometer, converters, trigonometry guides and even the periodic table of elements in Braille.

Using corrugated scrapbook materials, textured recycled items and cheap supplies from Divisoria, she also came up with her own geometric models in neon color, as well as illustrations of the parts of flower, plant and animal cells.

These adjustments, she said, were necessary in giving life to a SPED resource room that had not updated its equipment in years.

All Reyes had when she took the post of SPED teacher in RMHS were Braillers, a Braille printer, and old Braille books and teaching manuals. These were acquired during the time of her predecessor, Evelyn Caja.

Caja was a tough act to follow. She had been with the school’s SPED program since 1984. Further, her numerous awards had led to her elevation in DepEd’s SPED Hall of Fame.

But Caja saw Reyes’potential and her keenness in handling students with visual disabilities. Before teachers can transfer to SPED, they have to earn at least 18 units of special education courses or pursue a master’s degree and complete a required number of hours of training.

It was Caja herself when she was about to retire, along with former RMHS principal Cristina Reyes, who encouraged Reyes to pursue higher studies. She is now halfway through her master’s in SPED at the Far Eastern University.

The combined efforts of Reyes and the now-retired Caja provide signs of hope for inclusive education in the country. Still, their efforts are not enough if other teachers are not willing to make adjustments in mainstreaming students with disabilities.

Usually, we are not allowed to join

Sisters Czarinah and Camille Mercado, alumnae of RMHS, both have visual disabilities. Both also experienced exclusion and discrimination during their high school years.

Czarinah, who graduated in 2011, said she was discouraged by a teacher to take the qualifying exam for the special science program. This, despite satisfying the grade requirements when she enrolled in 2007.

The special science program entails additional Math and Science subjects in compliance with the Engineering and Science Education Program (ESEP) of DepEd. It is usually undertaken by students from the top two sections.

Only one blind student managed to graduate under the special science class: Roselle Ambubuyog, who was RMHS class valedictorian in 1997. Ambubuyog later graduated summa cum laude in Mathematics, minor in Actuarial Science at the Ateneo de Manila University in 2001.

“I heard (the teachers) had to go through the needle’s eye in order to maintain (Ambubuyog) in the special section,”Czarinah said.

But for Arsenio Manalo of DepEd, RMHS cannot be blamed for discouraging students to take the special science examinations. The school might not be ready to meet the needs of a students with disabilities should they pass the qualifying exam, he said.

“It would be hard for the school to hire an additional teacher if there’s only one (SPED student in the program),”he said.

But admission to the special science program was not the only challenge Czarinah, and later her younger sister, Camille, had to deal with.

Throughout their four years in RMHS, they had teachers exclude them from participating in regular class activities.

In science classes, for instance, they often remained in their seats because teachers did not allow them to join even in the most basic experiments.

“When they use fire (in experiments), usually we are not allowed to join,”said Camille, who graduated in 2014.

Given the chance, the sisters said they would have wanted to participate.

“We have nothing to lose. Except when the experiment includes chemicals, which are dangerous,”Czarinah said.

When they were not allowed to perform class experiments, they listened carefully to the teacher’s explanation to visualize what their classmates were doing. But Camille said a hands-on experience would have been much preferred.

“It depends on the teacher. You’ll end up sitting through activities if the teachers already judged or labeled you,”Czarinah said.

Discrimination extended beyond academics.

Czarinah recalled how she was barred from doing the one thing she always wanted to do: sing.

“I auditioned for the choir. I wasn’t accepted. They said the need for some choreography might give me a hard time,”she said.

Her rejection led the younger students to form a group of their own, the RMHS Violin Ensemble, composed of a violinist and the SPED choir.

According to DepEd, responsibility rests on the teacher in such instances of discrimination.

“What we need is to know the issues and the root cause why the teachers are not allowing the students (to participate) in those kinds of activities,”said Manalo.

He added that when such things happen, both the concerned teacher and the principal would have to undergo a task and skills analysis training.

Participation of SPED learners in extracurricular activities such as arts and crafts, quiz bees, chorale reading and interpretation is concrete proof of the dedication of teachers to transform the skills and abilities of their students, Manalo said.

But it’s not just the teachers, he said, as some parents might also be discouraging their children from participating in school activities.

Czarina and Camille both lament the unfair treatment they have experienced in school.

“Some (teachers) could not accept that sometimes, students with disabilities perform better than those who are sighted and without disability,”Czarinah said.

Still, the sisters take comfort in remembering the many times they were treated fairly. In Physical Education classes for example, they were made to do curl-ups and push-ups. They were also reprimanded whenever they failed to bring uniforms.

All in all, more teachers allowed them to fully participate in class activities than those who did not, Camille said.

Government institutions are the No. 1 violators of Accessibility Law

Discrimination is not the only challenge students with disabilities face at RMHS. The inaccessible environment also poses dangers to their physical safety.

Because the school has adopted a “mainstreamed,”that is, integrated setup, students with visual disabilities also have to transfer rooms and sometimes even floors to get to their next classes.

They are usually guided by sighted students through the school corridors, but not all remember to help.

“One time, our classmates did not fetch us. But since I was familiar with the location of the next classroom, I tried to go there on my own,”Czarinah said.

To accommodate its more than 6,100 students, RMHS observes multiple shifts in class schedules.

Afternoons are busiest, when everyone is already in. The school grounds and lobbies become overcrowded. When the bell rings, students rush to get to their next classes, often aggressively pushing one another so they can pass through.

“One time along the corridors, a student bumped into me and even cursed me. I wasn’t sure if he knew I was blind,”Camille said.

But despite the risks in this setup, the sisters still want to be allowed to be independent. Overprotective teachers have hindered them from doing even the simplest things, they said.

They remember, for example, being assisted immediately back to their rooms when seen walking around the campus unaccompanied by sighted classmates.

An official at the National Council on Disability Affairs (NCDA) agreed with their sentiment. Being inclusive, said Bing Baquir of NCDA Sub-Committee on Built Environment, is not only about mainstreaming students to regular sections.

“When you say full inclusion, it means the student should also be independent,”she said.

RMHS SPEd center for visually impairedThis is easier said than done at RMHS, where even the most basic facilities such as handrails, which are supposed to guide students through corridors on their own, are rendered unusable because they are broken or dirty.

Broken, dirty handrailSome handrails have lost their wooden covering so she would rather not hold on to them anymore, Camille said.

Perhaps most ironic is the SPED resource room itself, which is on the second floor of an RMHS building. It would remain there in the near future because students had already gotten used to its location.

Manalo said one other consideration for keeping the room in the second floor is the school’s susceptibility to flooding. Situated along Espana Boulevard, the surroundings of RMHS are easily flooded even during light to moderate rains.

But the law is very clear on accessibility requirements for persons with disabilities (PWDs).

Republic Act 7277, or the Magna Carta for Persons with Disabilities, requires government institutions to comply with reasonable accommodation of those with disabilities. This includes proper modification of facilities and equipment.

Batas Pambansa 344 or the Accessibility Law, meanwhile, requires schools to install barrier-free facilities and features such as stairs, walkways, doors and entrance, washrooms and toilets, handrails, parking areas, floor finishes, ramps and seating accommodations, among others.

Clearly, RMHS fails to meet the standards set by these laws. And it is not alone in this regard.

Government offices and institutions, instead of being models of accessibility, are even the top violators of BP 344, said Baquir of the NCDA.

“Despite all the information dissemination (and) the advocacy, people are still unaware of what BP 344 is and why it is needed,”she said.

But oversight is not an acceptable reason for the noncompliance with the law, Baquir said.

“That excuse has already been used a lot of times. If you go through the law, can you still say you have ‘overlooked’ it?” she said. “Unless we change our mindset and take PWDs into consideration, nothing will happen because they will always be left out.”

Accessibility features can even be installed through the use of indigenous materials, she said. For example, in NCDA’s non-handicapping environment project in New Lucena, Iloilo, coco lumber was used for ramps and bamboo for handrails.

More than a year ago, RMHS made an attempt at providing accessible facilities through the installation of a ramp, low door knobs and wide corridors in the school’s new building, which was intended for the Home Economics department. Yet the old accessibility challenges remain.

As another school year begins, the job of adjusting and accommodating students with disabilities again falls squarely on the shoulders of teachers like Reyes. And in the absence of accessible facilities, she is not the only one doing the adjusting.

“We also teach the students to adjust,”she said, “because we cannot always provide the best for them.”

(The authors are journalism majors of the University of the Philippines-Diliman. They submitted this story for the journalism seminar class “Reporting on Persons with Disabilities” under VERA Files trustee Yvonne T. Chua.)


Kinds of sign language in the Philippines

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By MARIA FEONA IMPERIAL

IN the Philippines, one spoken word can have several variations in meaning. The Tagalog word for “bird”, for instance, is the same as the Kapampangan for “egg.” Indeed, one must be very careful in telling the classic story of which came first.

There are 182 living languages used across the archipelago, which change from one town to another. Though some words such as “sun,” “rain,” “rice” and most counting numbers share common roots, each language maintains a distinct key feature in terms of syntax, accent, grammar, among others.

Hence, when people from the north and south of the country meet for the first time, communication becomes possible – with difficulty sometimes – through Filipino, the national spoken language,

But for the Deaf community, there is no universal sign language to bind its members together. Interestingly, even if they sign differently from each other, the Deaf can converse through pictures rather than words.

It would not be surprising at all that “deaf Japanese and deaf Filipinos understand each other more easily than their hearing counterparts do,” said Dr. Marie Therese Angeline Bustos, sign language interpreter and special education professor at the University of the Philippines in Diliman.

Contrary to what most people know, there are in fact two major categories of sign language used in the Philippines.

The first is “Sign Language” such as the Filipino Sign Language (FSL) or the American Sign Language (ASL), which is “naturally emanating from the Deaf,” Bustos said. The other one is “Artificial Signing System (ASS),” which follows certain grammar rules.

“The FSL has nothing to do with spoken Filipino. It basically refers to sign language used by the Deaf community in the Philippines,” Bustos said.


How to do sign language in the Philippines from the Philippine Deaf Resource Center (PDRC)

According to the Department of Education (DepEd) K to 12 curriculum guide for mother tongue, sign languages, such as FSL, are visual-spatial while spoken languages, such as spoken Filipino, are auditory-vocal languages.

In sign language, information is conveyed through the shape, placement, movement and orientation of the hands as well as movement of the face and the body. Meanwhile, linguistic information is received through the eyes, the guide said.

“It is visual in a sense that it is non-spoken,” Bustos said. “So, even if there is variation in an archipelago, sign language is easily understood because it is highly visual,” she added.

For instance, while there may be variations in demonstrating a “tricycle” through sign language in Visayas and Manila, it will most likely be signed in a similar way.

According to the DepEd guide, FSL is rule-governed, having its own linguistic structure – phonology, morphology, syntax, and discourse.

It is highly influenced by the ASL, which was brought to the Philippines in the 1900s by the American teachers who were instrumental in establishing the Philippine School for the Deaf (PSD), Bustos said.

“Like FSL, ASL is simply a sign language used in [North America] and is not to be confused with English,” Bustos said.

In 1974, the resurgence of the Peace Corps brought American volunteers that settled in Visayas, which may explain why most of ASL users in the Philippines are in Region VI, she said.

Meanwhile, most ASL users also belong to the older age brackets because of direct language contact with the Americans, said Liwanag Caldito, one of the founding members of the Philippine National Association of Sign Language Interpreters (PNASLI).

ASL, however, is not equivalent to FSL due to varying hand orientations and facial expressions.

Caldito said in fact while ASL and FSL both make use of the alphabet, the letter “T” is signed differently due to cultural differences.

In addition, Filipinos sign in a more animated and expressive way compared to Americans, especially when using interjections that denote feelings of surprise, she said.

For this reason, FSL, she said, is more a “picturesque” kind of sign language. “It is able to capture the idiosyncrasies like how Filipinos would talk.”

“When asking questions, for example, typically, the indicator would be raising one of his or her eyebrows or wrinkle his forehead. These facial expressions indicate questions such as what, when and why,” Bustos said.

There are also regional languages that reflect cultural differences and the geographic situation of the Philippines, Caldito said.

However, she estimates that 70 percent of the Filipino Deaf community, mostly from urban areas, uses FSL.

“It depends on how far they are from the center of civilization,” she said.

Moves to make FSL the national sign language in the Philippines only came much later. “We’re not a strong personality to insist on having a local sign language,” Caldito said.

Meanwhile, ASS, the second major category of sign language used in the Philippines highly depends on the alphabet and proper syntax. Signing in Exact English (SEE), which is still used in some schools for the Deaf such as the Miriam College, is an example.

SEE, which can be referred to as simultaneous signing or simply, sign and speak, depends largely on the use of hands.

In contrast to Sign Language, which makes use of non-manual signals such as raising of the eyebrows, tilting of the head or closing of the lips, the ASS has core language signs following the word order, according to Bustos.

“In SEE, every word has a corresponding sign,” Caldito said.

For instance, when signing “how are you” in SEE, every word must be expressed compared in Sign Language, where it can be easily interpreted as “how you.”

The problem with SEE arises when there are too many signs, so at the end of the whole sentence, there are words that tend to be missed or left out, Caldito said.

Sign Language and ASS are both standardized forms of sign language, which are familiar mostly to the Deaf who have attended formal schooling.

“Typically, when you have deaf parents, a typical deaf child will not sign similarly to other children. The child attends school for standardization,” Bustos said.

Deaf people who were unable to attend school sign in a highly gestural manner, according to Bustos. Unfortunately, because of their situation, these people are typically the victims of abuse, she said.

But there must be a way of getting their messages across, Bustos argued, and this should be the responsibility of the sign language interpreter.

She said interpreters have to interpret depending on their audience. Speaking in front of jeepney drivers would need a different level of language compared to appearing before senators in Congress.

“When we have to go to court, there must be deaf-relay interpreters, or people who are deaf who are familiar with both standardized and gestural [sign language],” she said.

The deaf-relay interpreter then relays to a hearing interpreter what the victim has said in a standardized form.

FSL, as with all other sign languages in the world, does not have a written form. People who are deaf do not read and write in sign language, rather they become literate in a second language, according to the K to 12 guide.

This is why broken grammar is common to the Deaf when expressing themselves in written form.

“The deaf person writes the word following the grammar of SL, but SL has no written form of spoken language,” Bustos said. “For instance, in Sign Language, ‘I am Therese’ becomes ‘Therese Me’.

For Bustos, Sign Language is highly “three-dimensional.”

However, the command of the language still depends on personal background and circumstances.

“Normally, smarter deaf kids would have a better command of the language, depending of course on the resources, tutors, and parents who take time,” she said.

While the diversity of sign language used in the Philippines enables every person who is deaf to communicate and engage in discussion regardless of the kind he subscribes to, Bustos said it is very important to have a national sign language to facilitate education and negotiate regional variations.

(The author is a University of the Philippines student writing for VERA Files as part of her internship.)

PWD-owned startup aims to put more PWDs on the road

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JAJEV Industry’s founders (from left) Juanito Mingarine, Efren Fernandez and Joseph Asoque. Photo by Danica Uy

JAJEV Industry’s founders (from left) Juanito Mingarine, Efren Fernandez and Joseph Asoque. Photo by Danica Uy

By VJ BACUNGAN and DANICA UY

A BEVY of red tricycles hurtle down Bonifacio Avenue, a four-lane national highway cutting through Cainta town in Rizal, their buzzy two-stroke engines leaving plumes of blue smoke in their wake. They overtake another tricycle which, even from afar, stands out from the rest.

At six feet tall, this tricycle towers over all its three-wheeled counterparts on the road. What is more odd is that its sidecar isn’t ferrying people but an empty wheelchair.

The driver turns right and drives up to the Cainta Municipal Government complex. He pulls over under a tree at a small parking lot. He then seats himself onto the wheelchair and rolls off the ramp that forms the back of the sidecar.

The driver is Juanito Mingarine, a multi-awarded athlete who lost the use of his feet after contracting the polio virus at eight months old. He is soon joined by Elfren Fernandez, an electrical engineer who uses crutches, having been born without a right leg and with a disfigured right hand; and Joseph Asoque, a draftsman who uses a prosthetic left leg.

Meet three of the five brains behind the adapted tricycle that they see as one of the answers to wheelchair users’ need for mobility—and for speed.

The other two are Alvin Lagonoy, a freelance building contractor who also runs a computer business, and Violeta Sapalit, who teaches technology courses over the Internet. Like Mingarine, Lagonoy and Sapalit had polio as children, which impaired their ability to walk. They, too, use wheelchairs.

From laundry soap to adapted tricycles

With P75,000 in initial capital, the five started up JAJEV Industry—the name is an amalgam of the first letter of their first names—in 2013. The company has gone beyond producing laundry detergents to providing mobility options for persons with disabilities (PWD), ranging from solar-charged wheelchairs to full vehicular conversions.

“We cater to PWDs who miss driving and even first-time PWD drivers,” said Mingarine, showcasing his adapted tricycle.

The vehicle consists of a 125cc underbone Honda motorcycle and a special sidecar that allows him to ride his wheelchair on and off it.

Another unique feature is a handle welded to the pedals of the semiautomatic transmission, allowing him to change gear with his left hand.

Mingarine said a sidecar conversion like his costs from P10,000 to P11,000, excluding the cost of the motorcycle.

But conversion prices may vary since the company custom-designs each vehicle to suit the driver’s disability.

For riders who don’t need a sidecar to accommodate a wheelchair, but have trouble balancing on a standard motorcycle, Mingarine said JAJEV Industry can also provide a solution.

“We turn a standard motorcycle into a three-wheeler,” he said. “This costs a bit more, from P16,000 to P20,000 (excluding the motorcycle), since we have to alter the rear axle to handle two wheels.”

For those who prefer driving ‘stick’

Fernandez said JAJEV Industry can also modify cars for anywhere from P5,000 to P30,000 and that customers can choose from a range of adapted hand and foot controls.

“We don’t paralyze the original functions of the car,” he said. “The devices can be removed, so that regular people could drive it, too.”

Unlike many conversion kits that work only with automatic-transmission vehicles, Fernandez said the company can also adapt manual-transmission vehicles for around P50,000.

“An electro-pneumatic device is attached to the clutch pedal, in which sensors detect how much input there is on the accelerator. The vehicle effectively has an automated clutch,” he said.

Fernandez said if the driver lifts off the gas pedal to change gear or to brake, the device pushes the clutch pedal down automatically. Once the driver presses the gas pedal again, the device pulls it back up.

Foreign influences

Mingarine said their devices were inspired by designs from abroad, where PWD drivers are more common.

In fact, the U.S. National Highway Traffic Safety Administration, the agency in charge of enforcing federal vehicle safety laws, has guidelines for PWD vehicle conversions and driver testing. And although the European Union doesn’t have overall guidelines, member states are taking the initiative to provide mobility for PWDs.

Skoda UK motabilityOne such program is the U.K. Motability program. Here, a PWD may choose to use his or her government subsidy to lease a new car, scooter or powered wheelchair. The scheme also provides detailed guidelines for conversions and driver testing. A notable aspect is that car manufacturers are partners in the program, providing incentives for PWD drivers.

Mingarine said no such scheme exists in the Philippines, although JAJEV Industry would be glad to tie up with local car manufacturers to develop and manufacture adapted vehicles on a larger scale.

He also said JAJEV Industry follows its own design and safety standards because the government has not issued any guidelines for adapted vehicles.

This issue doesn’t surprise Robby Consunji, legal columnist for popular motoring magazine Top Gear Philippines, who said PWD drivers are not a priority for the Land Transportation Office (LTO).

“It’s kanya, kanya (each to his or her own). PWDs really must resort to self-invention to drive a vehicle and likewise have to justify their designs to the LTO,” he said.

LTO ‘not competent’ for the job

Consunji said the problem stems from vague standards and poor implementation of the law, compounded by the fact that the LTO does not have the expertise or the equipment to properly evaluate the drivers and the vehicles.

Section 26 of Republic Act 7277 or the 1992 Magna Carta for Persons with Disabilities grants PWDs the privilege of driving motor vehicles, subject to LTO regulations. Two years later, the agency issued Memorandum Circular 94-188 to comply with the enabling law.

The circular only allows the following PWDs to obtain nonprofessional driver’s licenses: (1) an orthopedically impaired person with an amputated left or right leg or amputated left or right arm, (2) persons who had polio with one paralyzed leg, (3) persons with visual impairment in either the left or right eye, and (4) persons with speech and hearing impairment who must use hearing aids. It doesn’t allow blind people, deaf people and double amputees to drive.

“It’s really subjective, though. There is no clear pass or fail. It’s a matter of wooing the doctor and the LTO examiner to let you drive,” said Consunji.

Guidelines in the works

Miranda: Stricter standards for PWD drivers and adapted vehicles are still in the works. Photo by Danica Uy

Miranda: Stricter standards for PWD drivers and adapted vehicles are still in the works. Photo by Danica Uy

Louie Miranda, a dentist at the LTO Central Office on East Avenue who serves as chairman of the LTO Accredited Physicians and is a member of the Department of Transportation and Communications Task Force on Accessibility, concedes that there are no set standards yet for PWD drivers and vehicular conversions.

He said the standards are still being formulated.

“Right now, it’s on a case-to-case basis,” Miranda said. “When a PWD registers his or her adapted vehicle, the motor vehicle inspector checks to see if it is a viable and safe design.”

However, he said the LTO issued a circular in 2013 to address the concerns of PWD drivers who want to get driver’s licenses.

Memorandum Circular VPT-2013-1803 reiterates earlier LTO circulars that require, among others, PWDs applying for or renewing their licenses to get their medical certificates from specialized physicians.

Mingarine said that although JAJEV Industry prioritizes ease of use and total customization, it is willing to comply with stricter government safety standards should these be issued.

Big demand, big money

In light of all these, one big question remains: Just how big is the demand for adapted vehicles?

“There’s actually a lot of money to be made here,” Fernandez said.

According to data from AMPI-Mega, the private company that prints driver’s license cards for the LTO, the LTO issued nearly 193,000 driver’s licenses to PWDs in 2008.

Around 95 percent were for license Condition A or drivers who must wear eyeglasses while driving. The remaining 5 percent (around 9,500 licenses) were issued to drivers with more serious impairments.

Of the latter group, nearly two in three were for Condition D drivers, who have visual impairments and are only allowed to drive from 6 a.m. to 6 p.m. Nearly a quarter were for Condition C drivers, who require special equipment for their lower limbs.

Eight percent of the licenses, on the other hand, were issued to Condition B drivers, who require special equipment for their upper limbs, while the remaining 4 percent were obtained by Condition E drivers, who have hearing impairments and must use hearing aids.

Driving means freedom for PWDs

Driving is a form of self-reliance for PWDs. Photo by Danica UyBing Baquir, head of the National Council for Disability Affairs’ subcommittee on Accessibility and Transportation, said driving is more than just a convenient way of getting around for PWDs.

“For persons with disabilities, it’s a priority for them to drive because it means independent living. They want to be self-reliant,” she said.

Fernandez said personal mobility is certainly important to PWDs, especially since public transportation is still not a viable option for them to get around.

He said JAJEV Industry has done 15 conversions so far and is looking to expand production. However, he said it is in dire need of more investors and equipment.

“We have been using our friends’ machine shops just to make the parts. The proof of concept is already here. We just need help from willing partners,” he said.

But aside from helping PWDs become more mobile, Fernandez said the ultimate goal of JAJEV Industry is to create sustainable employment for PWDs.

“It’s hard for a PWD to find work in this country,” he said. “Our vision is to create a business that would help PWDs have employment with a high-paying salary.”

For inquiries on JAJEV Industry’s products, contact Elfren Fernandez at 0919-9938988, 0915-1868050 or  elfren143@yahoo.com.ph

(The authors are journalism majors of the University of the Philippines-Diliman. They submitted this story for the journalism seminar class “Reporting on Persons with Disabilities” under VERA Files trustee Yvonne T. Chua.)

 

 

Deafening silence: Private TV stations opt against using sign language insets

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By RONN BAUTISTA and KRIXIA SUBINGSUBING

(First of two parts)

SUPPERTIME in the Philippines is often accompanied by the start of local primetime newscasts in Filipino homes.

At 6:30 p.m., media networks ABS-CBN, GMA-7 and TV-5 begin broadcasting their flagship news programs.

While the rest of the country follows the rundown of the day’s newsworthy events, a significant part of the population will not understand a single thing that anchormen will say: the Deaf community.

Despite laws and international conventions encouraging them to do so, most private TV networks continue to deny information to Deaf persons by opting not to include regular sign language insets during their daily newscasts over logistical and aesthetic concerns.

Republic Act 7277 or the Magna Carta for Persons with Disabilities (PWDs) states that “television stations (are) encouraged to provide a sign language inset in at least one newscast program a day.”

This is in line with the United Nations Convention on Rights of Persons with Disabilities (UNCRPWD), which the country is a signatory of, that acknowledges the right of PWDs to “receive and impart information and ideas on an equal basis with others.”

At least 500,000 Filipinos are deaf or have difficulty hearing, according to the De La Salle-College of Saint Benilde School of Deaf Education and Applied Studies (DLS-CSB SDEAS).

“(Deaf persons) need valuable information to make informed decisions. Every bit of information has the potential to be life-changing for them,” said DLS-CSB SDEAS Dean Veronica Templo-Perez.

Despite recognizing the merit of such measures, media giants ABS-CBN and GMA-7 opt not to implement provisions in the Magna Carta for PWDs and the UNCRPWD on accessibility to deaf persons as insets have yet to be prioritized in the newsroom agenda.

assessment

Assessment of top 3 PH broadcasting stations. Sign language insets are a staple feature in special coverages, but have yet to become a regular part of newscast programs for ABS-CBN and GMA-7.

“(GMA) has yet to make sign language insets a priority because usually if it’s an urgent need, you would hear from the sectors. We are studying how to make it a regular part of our programming,” said Howie Severino, GMA-7’s Vice President for Professional Development, in Filipino.

Severino added that making insets regular additions to news programs would also entail large changes in the newsroom such as hiring sign language interpreters and finding additional space in the studio for them.

Arlan Alfonso, head of ABS-CBN News Engineering, echoed the same sentiment, saying that adding sign language insets in newscasts would require several aesthetic adjustments to avoid screen clutter.

“(Insets) would definitely eat up the video. We have a running news crawl, we have graphics, we have a logo—when you put a deaf interpreter inset, you have to adjust our boxes to give way to other elements of the screen, and that could distract from the information we are trying to provide,” Alfonso said.

Even resolving aesthetic concerns, the needs of the station’s wider and primary audience have to be considered as well, said Francis Toral, head of ABS-CBN Breaking News and Live Events.

“We can and we are considering the needs of the Deaf community, (but) we are not yet implementing sign language because our wider audience has no need for it,” she said.

As of April this year, both networks enjoy the bulk of Philippine viewership with an average audience share of 42 percent for ABS-CBN and 37 percent for GMA-7, according to Kantar Media.

Hesitation to use insets means failing to hear out the Deaf community’s need for information, Templo-Perez said.

“How about the actual need to provide information to an audience who cannot get accurate and important in any other way than a sign language inset in a news program?” she asked.

Last February, Sen. Paolo “Bam” Aquino filed Senate Bill 2117 which seeks to amend the original Magna Carta and require all free-to-air TV stations to include sign language insets in at least one newscast a day.

“The term ‘encouraged’ (in the original Magna Carta) is very weak compared to actually requiring networks (to include insets),” said Randy Calsena, officer of the National Council on Disability Affairs subcommittee on laws and policymaking.

So far, only TV-5, the youngest of the three major broadcasting networks in the Philippines, includes insets in their newscasts.

In partnership with the Philippine National Association of Sign Language Interpreters since 2011, TV-5 provides insets in two of its flagship national news programs, Aksyon sa Tanghali and Aksyon Prime, which airs weeknights at 6:15 p.m.

“We recognize that there is a need for wider access to our newscast programs, especially for the PWD sector. (It’s) not a question of cost, it’s a question of how willing you are to (provide for insets),” Patrick Paez, production head of TV-5, said.

Although TV-5 follows the Magna Carta, the station may still need to make its sign language insets more accessible, Templo-Perez said.

The network’s inset takes up less than one-forty-eighth of the screen.

size

Acceptable sign language insets specs. Following the standard aspect ratio (4:3) for newscast programs in the Philippines, if a four-by-three grid is drawn across a television screen, an accessible inset should take up one-ninth, or roughly 1 by 0.33 squares, according to DLS-CSB SDEAS. In the United Kingdom, where most channels are in 16:9, insets must occupy one-sixth of the screen, or roughly 4.50 by 5.33 squares.

The DLS-CSB SDEAS estimated that insets should take up at least one-ninth of the screen for deaf audiences to clearly comprehend the sign language interpreter’s actions.

International standards, such as the United Kingdom Independent Television Commission’s guidelines, set an even higher bar at one-sixth of the screen allotted for the inset. As for SB 2118, the Senate has yet to discuss the standards for the insets.

“Let us remember that providing sign language insets are for the benefit of the Deaf community, not for the viability of TV stations,” Templo-Perez said.

SB 2118 has been pending at the Senate Committee on Public Information for more than a year.

The House of Representatives passed its counterpart, House Bill 1214, in February last year.

Should the bills become law, both ABS-CBN and GMA-7 said they will comply when given enough time.

“Needless to say, if required by law, we will abide,” Toral said.

However, such vow and recognition of the importance of accessibility seemed ironic for Templo-Perez given the two station’s continued lack of sign language insets.

“How sad that it takes a law to get them to comply,” she said.

Conclusion: Deafening silence: Budget woes hamper state TV accessibility to deaf persons

(The authors are journalism majors of the University of the Philippines-Diliman. They submitted this story for the journalism seminar class “Reporting on Persons with Disabilities” under VERA Files trustee Yvonne T. Chua. This series of stories coincides with the celebration of the country’s National Disability Prevention and Rehabilitation Week.)

Deafening silence: Budget woes hamper state TV accessibility to deaf persons

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By RONN BAUTISTA and KRIXIA SUBINGSUBING

(Conclusion)

IN the Philippines, sign language insets in free-to-air television channels are almost unheard of.

Out of Metro Manila’s 18 channels, only one features a sign language interpreter alongside its news programs. Citing logistical and aesthetic concerns, most private TV networks hesitate to include insets in their newscasts despite Republic Act 7277 or the Magna Carta for Persons with Disabilities (PWDs) encouraging them to do so.

“Because (private) networks still do not perceive the need (to cater to deaf audiences), the government’s own TV station should lead as an example to the industry,” said Randy Calsena, officer of the National Council for Disability Affairs’ subcommittee on laws and policymaking.

However, state-owned People’s Television (PTV-4) has also failed to implement its operator’s own laws. From declining government subsidy to unstable revenues, budget woes hinder PTV-4 from making its broadcasts fully accessible to the Deaf community as well.

Since its establishment during the Marcos regime, the PTV-4 charter requires the station to “maintain a broadcast industry system that serves as a vital link for participative democracy and effective government information dissemination through developmental communication.”

As a state-owned station, PTV-4 is bound by both the country’s Magna Carta and the United Nations Convention on the Rights of PWDs (UNCRPD) to ensure information is usable and accessible to Deaf persons.

Section 9 of the UNCRPWD declares that state parties “shall take appropriate measures to ensure access (for PWDs), on an equal basis with others, to information and communications.”

“Sign language insets are important because Deaf persons cannot access information in a verbal manner. PWDs have as much right to that as everyone else,” Calsena said.

Yet, since the 1990s, PTV-4 has never included sign language insets during any of its programs except for one instance during the preparation of President Benigno Aquino III’s State of the Nation Address in 2012.

“That was part of the former news division head’s conceptualization of news programs, but it was never followed up because he had to leave,” PTV-4 News Division Head Ramon Nunez said in Filipino.

Now that Nunez holds that position, the news head said he has been consulting his department about the feasibility of regular sign language insets. During informal consultations, one of his colleagues raised concern over the funding for such an addition to the newsroom.

When PTV-4 hired an interpreter in 2012, it cost the station P2,500. To make it a regular addition to PTV-4’s broadcasts in line with the Magna Carta for PWDs, Nunez said the network would have to hire at least two interpreters a day.

“To cut costs, we would hire interpreters as contractuals with no benefits like GSIS and PAG-IBIG (coverage),” Nunez said in Filipino.

Although the station management will decide the length of contract and final salaries of each interpreter, entry-level contractual employees in PTV-4 receive around P12,000 monthly.

“(Adding regular sign language insets) requires hiring new employees which entails additional budget,” Nunez said.

On top of the subsidy it receives from the national government, Section 19 of the PTV-4 charter states that “the Network (may) generate funds from advertising and airtime sales for its operations and capital expenditure program.”

ptv4 budget

Figure 1: Budget and expenses breakdown. Before President Benigno Aquino III’s term, state subsidy to PTV-4 dramatically decreased while the station tried to cut down its expenses from 2008 to 2010.

From 2011 onward, the station’s sales revenue can only fund as much as half of PTV-4’s annual expenses

Excluding funding from the national government, PTV-4 has been incurring hundreds of millions of pesos in losses from 2008 to 2013.

ptv4 losses

Figure 2: Insufficient revenues. After 2010, PTV-4 needed an average state subsidy of P140 million annually to augment its sales revenues.

When including erratic state subsidy, the station’s finances has only begun levelling out in 2012.

 

ptv4 net income

Figure 3: Breaking even. PTV-4’s finances crashed to as much as P139 million in losses in 2010 and only began stabilizing in 2012.

Such financial situation has seen the station’s budget for personal services, or employee salaries, to gradually decrease from P181 million to P118 million in 2013.

“If we hire interpreters again, we cannot rely on our programs’ advertisements alone. We create programs to serve the people, not only to raise revenue,” Nunez said.

A solution to PTV-4’s budget woes may now lie in a Senate bill filed last February which sought to require all free-to-air TV networks, including state television, to include sign language insets during newscasts.

Section 14 of Sen. Paolo “Bam” Aquino’s Senate Bill 2118 states that additional costs that the government may incur, such as PTV-4s’ budget for interpreters, will be sourced from the 1 percent appropriation earmarked for PWD welfare in the national budget.

“It’s important that the government incorporates a budget in every agency, not just PTV, for making services accessible to PWDs because access to information is one way of empowering the people,” Calsena said.

Given different sources of funding, Nunez said he has yet to recommend and present the feasibility of sign language insets during newscasts, but promised to raise it “as soon as possible.”

“It’s about time we do something about this. Kasi kapag hindi namin ginawa ‘yun, parang iniiwan na rin namin ang mga PWDs. Sama-sama dapat sa pag-unlad (If we don’t do anything, it would be a disservice to PWDs. We need to achieve progress together),” Nunez said.

First part: Deafening silence: Private TV stations opt against using sign language insets 

(The authors are journalism majors of the University of the Philippines-Diliman. They submitted this story for the journalism seminar class “Reporting on Persons with Disabilities” under VERA Files trustee Yvonne T. Chua. This series of stories coincides with the celebration of the country’s National Disability Prevention and Rehabilitation Week.)

Deaf advocates push for more inclusive education system

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Text and video by GRAZIELLE CHUA and VERLIE RETULIN

AS a Deaf student, Ana Kristina Arce had to transfer from one school to another, trying to find the best one to accommodate her needs—a costly undertaking that consumed both her time and effort.

Now a professor at the De La Salle-College of Saint Benilde (DLS-CSB)’s School of Deaf Education and Applied Studies (SDEAS), she joins other members of the Deaf community in advocating for the declaration of the Filipino Sign Language (FSL) as the national sign language for the Filipino Deaf, recognizing it as the language of their identity and that which will allow them greater access to education.

“There is a struggle for language development here in the Philippines. Having a national language for the deaf, and using this in the K to 12 would be such a big help in learning. I really think it is best that the national sign language for the deaf is FSL,” Arce said.

The appropriate medium of instruction to be used in educating deaf students, however, is not the only concern posed by Deaf advocates. The problem with deaf education in the country also has to do with the availability of instructional materials, teacher preparedness and environmental accessibility. All these factors require attention in the long run, especially to ensure that education is inclusive.

Arce cited the lack of interpreters, insufficient training of teachers, and the exclusion of deaf students from the mainstream—with outright disregard for their needs—as some of the barriers that had hindered her access to a proper education.

As a kid, she was enrolled in several oral schools in an effort to make her speak. She admits, however, that she was a slow learner in oralism. She was not picking up her lessons nor was she learning to speak well.

So her parents decided to transfer her to a mainstream setup, where she got to interact with hearing students. The school, however, lacked an interpreter to facilitate her learning. “The teacher would just be speaking, and I would not understand what was going on,” she said.

Ana Kristina Arce of SDEAS

Ana Kristina Arce of SDEAS

Arce then moved to another public school where total communication (speaking and signing done simultaneously) was the means of communication used from primary to secondary level. However, she said there were times when the teacher would speak too fast and the interpreter—who was using Signed Exact English (SEE)—would fail to catch up. They were not provided with note takers, either.

Then in her third year, she realized that the same lessons were being taught. Oftentimes, these only required memorization and failed to hone her other skills—reading, in particular.

John Baliza, also a professor at SDEAS, said most of the Deaf students he has taught were falling behind in terms of learning and blames this on the practice of teachers making them just copy notes from the blackboard back in elementary and high school. Ultimately, he said, they survived basic education by memorizing facts.

“The challenge is how to help them unlearn the wrong facts they learned in elementary and high school, and how we can fit in four years…new learnings that they should have (already) learned,” he explains.

Arce said she also experienced exclusion and discrimination in group activities and even from school teachers and officials.

“Everyone in that school did not know how to sign. We would have to bring paper and pen to communicate, to write to each other. There is no access. There were barriers to learning,” she said.

Enshrined in the United Nations Convention on the Rights of Persons with Disabilities (UNCPRD) is a mandate to all State Parties, including the Philippines, to ensure an inclusive education system for PWDs at all levels. Specifically, it mandates State Parties to facilitate the learning of sign language and the promotion of the linguistic identity of the Deaf community.

Therese Bustos, Deaf education specialist from the University of the Philippines Diliman

Therese Bustos, Deaf education specialist from the University of the Philippines Diliman

This provision forms the basis for House Bill 450 or the “The Filipino Sign Language Act of 2012,” which seeks to designate FSL the medium of official communication in all transactions involving the Deaf and the language of instruction of deaf education. It envisions FSL as the medium of instruction in all national and local agencies involved in the education of the deaf.

Alliance of Concerned Teachers party-list Rep. Antonio Tinio said, however, only a few special education (SPED) teachers have been trained to use FSL. Others use the American Sign Language (ASL), SEE, and other sign systems when teaching.

Once enacted into law, the bill will include FSL as a separate subject in the curriculum of training programs for teachers in Deaf education. It will also promote the licensing of Deaf teachers as users of FSL.

“One thing the bill wants to address is to have more deaf teachers educating deaf students,” Tinio said.

To improve the quality of teachers in Deaf education, the bill also proposes periodic trainings and evaluation programs.

“There are a lot of things that we need to change, starting with teacher training and education. Some things need to be reviewed and changed in the teacher training curriculum,” Tinio said.

Therese Bustos, Deaf education specialist from the University of the Philippines Diliman, agrees, saying the sign language to be used as medium of instruction must not only work for the teachers but more so for the deaf students.

Bustos said most deaf educators today are trained using SEE because of their familiarity with the English language, making the sign language easier to learn. Its advantage stems from deaf students’ proficiency with written English.

However, in her 10 years of experience in handling deaf kids, Bustos said a student’s ability to write well in English does not depend only in SEE, but also on their learning environment.

English words in FSL

English words in FSL

She said most students who write well in English had tutors, parents who checked their homework, and teachers who took their teaching responsibilities seriously.

“What we are seeing now is that it does not matter whether FSL or SEE was used. What matters was being part of the environment where education is important,” Bustos said.

Republic Act 7277 or the Magna Carta for Persons with Disabilities, which was amended by Republic Act 10524, requires the State to consider the special requirements of PWDs in formulating education policies and program, and encourages learning institutions to take into account the special needs of PWDs such as the use of school facilities, class schedules and physical education requirements.

At present, the K to 12 program of the Department of Education recognizes FSL as the medium of instruction to be used in educating deaf students in the mother-tongue-based multilingual education (MTB-MLE) from kindergarten to Grade 3.

Bustos, who is also a member of the Deaf Education Council (DEC) tasked by DepEd to look into issues in deaf education, said inclusion on FSL in the mother tongue curriculum shows that DepEd recognizes the language used by the Deaf community in accordance with the UNCRPD. It will also raise awareness among teachers that sign language is also a language that should be used as a medium of instruction, she said.

“We are thankful for DepEd because…the mere act of incorporating that single page into the curriculum took a lot of work,” Bustos said.

But she said the road map toward multi-literacy among deaf students is still a work in progress.

“How do we transition from what is mandated by the law and declared in the curriculum to get to a point wherein it’s true on paper and true on reality? Our (next) task is to map that out,” Bustos said.

Deaf advocates push for more inclusive education system video script

 (The authors are journalism majors of the University of the Philippines-Diliman. They submitted this story for the journalism seminar class “Reporting on Persons with Disabilities” under VERA Files trustee Yvonne T. Chua.)

Fairest of them all

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Czarinah Mercado in her festival costume during the awarding ceremony of Miss Philippines on Wheels, Signs and Vision 2013.

Czarinah Mercado in her festival costume during the awarding ceremony of Miss Philippines on Wheels, Signs and Vision 2013.

By YVETTE B. MORALES

CZARINAH Mercado was nervous. It was her first time to stand before a huge crowd. Clad in a persimmon dress made by a famous Filipino designer, she knew all eyes were on her.

Only she couldn’t see them.

Guided by a white cane, Mercado confidently strutted down the runway to show off not only her dress but also her advocacy.

Modelling in the prestigious Philippine Fashion Week (PhFW) in May 2014 was a dream come true for Mercado. She and Arjhessa Espiritu became the first two models with visual disability to join the biannual event that showcases the works of famous Filipino designers.

Mercado was born with microphthalmia, a condition where one or both eyeballs are smaller than the regular. In some cases, children with microphthalmia can have limited sight. Mercado was partially blind as a child and now has weakened vision.

The 2000 census identified low vision as the most common disability in the country, accounting for 37 percent of about 942,000 persons with disabilities. This was followed by partial blindness at 8 percent.

Mercado is lucky to have seen every color; her favorite shades are hues of pink and purple. But with weakened vision, she said, “I can recognize bright colors better.”

Like most people her age, she grew up being glued to the television. The shows did not only entertain her, they also made her dream of modelling dresses and joining beauty pageants.

“I imagined myself standing on the stage, surrounded by a huge audience (performing, and then answering judges’ questions). I like that feeling,” she said.

Before the PhFW last year, Mercado was an active member of Ambassadors of Light, a choir composed mostly of persons with visual disability. Even as a singer, Mercado would always pray for opportunities in other areas not only for herself, but for fellow PWDs as well.

A framed online news article and photo of Mercado's Philippine Fashion Week 2014 appearance is displayed in their home.

A framed online news article and photo of Mercado’s Philippine Fashion Week 2014 appearance is displayed in their home.

“Usually, music is the only opportunity not only for blind people but also for other PWDs,” she said.

The United Nations Convention on the Rights of PWDs, to which the Philippines is a signatory, aims to “ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability.” This includes the right to participation to cultural life, recreation, leisure and sport.

Indeed, Mercado’s was an answered prayer.

In November 2013, she placed second in the first Miss Philippines on Wheels, Signs and Vision organized by Tahanang Walang Hagdan and Women with Disabilities Leap to Social and Economic Progress, advocacy organizations aiming to enhance the lives of PWDs, focusing on people with orthopaedic disability and women with disabilities, respectively.

The pageant, unlike the traditional beauty contests, does not only look for the most beautiful and talented PWD, but also one who can best represent the sectors and showcase her talents to people without disabilities.

Despite the special awards she took home, Mercado said the preparations did not go as planned. The human props who were supposed to enact Taylor Swift’s “Speak Now” had an emergency.

“I just looked for people who can replace them, and we only rehearsed the night before (the pageant). I never expected to win Best in Talent that time,” she said.

In addition to being her winning piece, the song is one of her favorites as, she said, it reflects her personality.

“I picture out a world where everyone tells the truth, or aren’t afraid of what they’re doing, as long as it’s right. I think it would be a better place,” she said.

“Speak Now” tells the story of a woman who decided to take her possibly last chance at true love by objecting in a wedding. Eventually, the groom ran away with her after she told him her feelings, thus giving the song a happy-ever-after ending.

Mercado also bagged two more special awards in that pageant: Best in Festival Costume and Miss Personality in Visions.

But her answered prayers did not stop with the pageant. Through the collaboration of Nationwide Organization of Visually Impaired Empowered Ladies (NOVEL), Philippine Blind Union and PhFW organizer Runway Productions, Mercado landed in the catwalk of the prestigious event with Espiritu, who placed first in the same pageant she joined.

NOVEL is a young organization that aims to empower women with visual impairments while the PBU is a national federation of people with visual disabilities.

“It was an overwhelming responsibility. We focused our minds on the fact that we’re doing it for the PWD community, to show people that we are not limited by our disabilities,” Mercado said.

Contrary to stereotypical models, there were neither diet tricks nor skin enhancements for Mercado.

“We’re just on our best. We took the confidence and the lessons we got from the pageant,” she said.

Mercado said she did not even have the chance to try the runway except a day before the show.

“We asked if we could roam around the place just so we can estimate how big it is,” she said.

On May 31, 2014, she confidently conquered the catwalk in an orange belted dress designed by Audie Espino and Lyle Ibanez. Although she did not get the chance to talk to her co-models, their unspoken encouragements lifted her spirits.

Mercado laughs while sharing her experience in the Philippine Fashion Week 2014.

Mercado laughs while sharing her experience in the Philippine Fashion Week 2014.

“I didn’t know what was going on their minds. But before and after the show, someone said their (co-models) faces say, ‘You can do it,’” she said.

A year after the exhilarating experience, Mercado conquered another stage. Instead of a dress or a gown, this time she wore a black toga as she marched to get her undergraduate diploma on Business Management in STI Fairview. She nows works as a telemarketer at a software company in Quezon City.

Despite seeming to be poles apart, Mercado’s chosen professional path and her past as a model coincide in terms of interacting with other people: something the self-proclaimed extrovert has always loved.

Regardless of her exposure to the world measured by physical attributes and style preferences, Mercado said what others see does not really matter.

“When you’re sighted, it’s easy to judge. You neglect people when they don’t meet your standards. That’s the reason why people miss out on the things we can still discover: only by judging, and expecting something far from reality,” she said.

Instead of being a disability, Mercado claimed visual impairment could actually be an advantage.

“We get to know (people) without judgment: We don’t care whether they have dirty nails, a dark complexion, or are fat. We focus on their character, not by what they can give us.”

Having said that, Mercado proudly introduced the most beautiful woman for her.

“The prettiest woman is me. You don’t have the right to ask others to believe in you when you yourself doubt it,” she said.

(The author is a journalism major of the University of the Philippines-Diliman. She submitted this story for the journalism seminar class “Reporting on Persons with Disabilities” under VERA Files trustee Yvonne T. Chua.)

Village of PWD dreams

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Wheelchair user Sofronio Floro is one of the homeowners in Davao City’s ADAP Village, a community of PWDs that provides livelihood opportunities for members through cooperativism. Photo by JOHN FRANCES C. FUENTES

Wheelchair user Sofronio Floro is one of the homeowners in Davao City’s ADAP Village, a community of PWDs that provides livelihood opportunities for members through cooperativism. Photo by JOHN FRANCES C. FUENTES

Text and photos by JOHN FRANCES C. FUENTES

DAVAO CITY — Wheelchair user Sofronio Floro, 54, has carefully assembled an armchair, one of the hundreds he and his fellow workers with disabilities have made the past couple of days.

The armchairs and desks will be shipped hundreds of miles away from the city — to the Department of Education (DepEd) Central Office in Manila, and will be distributed to public schools.

The tables and chairs will be used by students who probably will never know that they were handcrafted by people with disabilities (PWDs) living in a village in Davao.

Located 14 kilometers from downtown Davao is the Association of Differently-Abled Persons (ADAP) Village, a community of PWDs that provides livelihood opportunities for members through cooperativism.

Built around a 9,601-square-meter lot in Indangan, Buhangin, the community was set up with the support of the Lions Club and Habitat for Humanity. PWD members of ADAP also helped in the construction of the 40 housing units in the village.

Through the famed “bayanihan” spirit, the PWDs lined up and passed concrete blocks to one another going to the construction site.

“It was what we call as our sweat equity,” said Alicia M. Fabiaña, manager of ADAP Multi-purpose Cooperative, whose members include the residents of ADAP Village.

Fabiaña, a person with post-polio syndrome, said 75 members of the cooperative qualified for the housing project but only 40 houses have so far been built. The rest of the members have yet to construct their houses on the 70- to 80- square-meter lot allotted per unit, she explained, adding that the residents pay P180 to P250 per month for 25 years as their monthly amortization.

ADAP members who have no houses of their own, especially those who are married, were given priority in the housing project. They have sought the help of the National Housing Authority for the purchase of the land.

The ADAP Village is probably what the framers of the Magna Carta for Persons with Disabilities had in mind when they penned its Section 39, which says, “The National Government shall take into consideration in its shelter program the special housing requirement of disabled persons.”

Alicia M. Fabiaña, manager of ADAP Multi-purpose Cooperative, whose members include the residents of ADAP Village. Photo by JOHN FRANCES C. FUENTES

Alicia M. Fabiaña, manager of ADAP Multi-purpose Cooperative, whose members include the residents of ADAP Village. Photo by JOHN FRANCES C. FUENTES

Sections 40 and 41 also talk about the role of local government, national agencies and nongovernment organizations in providing livelihood opportunities and vocational rehabilitation measures for PWDs.

Executive Order No. 105 which mandates putting up of housing programs intended for poor older persons and PWDs was signed on May 16, 2002 by former President Gloria Arroyo.

“We saw the need of our fellow PWDs to have a house of their own. It’s a dream come true for us that we finally have a place of our own,” Fabiaña said.

The residents are thankful to have a house of their own while working at the same place. “We don’t have to go far just to report to work. We are saving our time and our money for daily commute.”

Livelihood opportunities within the village

Aside from helping provide housing to its members, the cooperative also offers livelihood opportunities.

The ADAP MPC Rotary Centro ng Pangkabuhayan operates a workshop inside the village where PWD members who are skilled in carpentry and welding can earn from making armchairs, desks and other furniture and fixtures.

“I’m used to this kind of work (carpentry). It’s not that difficult,” said Floro, from New Bataan in Compostela Valley province.

A person with post-polio syndrome since he was nine months old, it was only in 1991 that Floro was able to use a wheelchair. He used to earn a living by transporting coconut lumber. He did this by dragging the wood with the help of his carabao from interior areas to the poblacion.

Enrique Rollon, 44, has been working for the ADAP Multi-purpose cooperative for two years. A farmer in Maragusan also in Compostela Valley, the father of four lost his left leg in a vehicular accident in 1993. He now relies on his prosthetic leg so to move around without the aid of crutches while doing his work as welder and carpenter.

Floro and Rollon were once trained in carpentry and welding at the Our Lady of Victory Training Center when it was still operating in Sasa, Davao City. But when it was transferred to Babak, Island Garden City of Samal, which would require the two men to take a ferry boat ride and a habal-habal ride to reach, they decided to stay in Davao and find means to support their families.

Workers like Floro and Rollon earn at least P8,000 a month for making the armchairs and desks.

Enrique Rollon relies on his prosthetic leg to move around without the aid of crutches while doing his work as welder and carpenter in ADAP Village. Photo by JOHN FRANCES C. FUENTES

Enrique Rollon relies on his prosthetic leg to move around without the aid of crutches while doing his work as welder and carpenter in ADAP Village. Photo by JOHN FRANCES C. FUENTES

There are also residents who earn a living from other skills like repairing appliances.

A person with post-polio syndrome, Bernardo Dela Cruz, 47, makes ends meet for his wife and only son through his income earned from repairing appliances of his neighbors and other households.

His 47-year-old wife, Josephine, also a person with post-polio syndrome, runs a small sari-sari store.

To help people like the Dela Cruz couple improve their livelihood, ADAP MPC is planning to revive a small loans scheme that members can tap for emergency or use as capital to start a small business.

Aside from money lending, the board members of ADAP MPC are looking into the possibility of putting up a bakery and a rice distribution store where they can sell bread and rice for members and non-members alike.

“We want to be productive and develop our entrepreneurial side. This will help us to change the notion that PWDs only earn a living through charity and dole-outs,” Fabiaña said.

She explained that there are also PWD residents who continue to work in the downtown area like in the Davao City Hall and in the government-owned Southern Philippines Medical Center.

“At first, we found it hard to commute from Indangan to the downtown area but we have learned to appreciate the distance. At least, when we go home, we can have our rest in this area far from the hustle and bustle of the city,” Fabiaña said.

The Dela Cruz couple, both with post-polio syndrome, lives in the village. Bernardo repairs appliances while Josephine runs a small sari-sari store. Photo by JOHN FRANCES C. FUENTES

The Dela Cruz couple, both with post-polio syndrome, lives in the village. Bernardo repairs appliances while Josephine runs a small sari-sari store. Photo by JOHN FRANCES C. FUENTES

The DepEd Central Office is ADAP MPC’s major partner, the official said, adding that the cooperative is a recipient of a grant to manufacture and supply their products to public schools. But she said they are also partnering with different private and public institutions to help ensure continuing job orders.

The cooperative, Fabiaña explained, is also using social media to promote their products and inform netizens about their village. There have been visitors from different PWD groups in the country who came to ADAP Village after seeing their online posts.

The ADAP Village is not the first in the country, but it is in Mindanao. A 2009 report by the Disability Rights Promotion International says three major housing projects for PWDs have been launched in 1983, 1987 and 1988, years before the enactment of RA 7277 and EO 105.

These are the Munting Pamayanan in Escopa, Project 4 built in 1983 through the partnership of the Department of Social Welfare and Development (DSWD), National Housing Authority (NHA) and Christoffel Blinden Mission (CBM), a nongovernment organization.

Four years later, the same organizations built the Karangalan Village Shelters in Pasig City. In 1988, the DSWD and NHA, this time with a different NGO, Epitaph Foundation, built the Padilla Housing Village in Antipolo City.

More than just working

While working in the workshop and in the downtown area is the routine on weekdays, some of the members of ADAP Village have formed a choral group and they sing every Sunday in the nearby Our Lady of Miraculous Medal Parish.

“When we were still starting as a group, some of us found it hard to attend the mass, feeling that we are ridiculed by the people because of our handicaps but I explained to my fellow members that people are just afraid to relate to them the same way that the PWDs are also afraid to befriend the other mass-goers who are not differently-abled,” Fabiaña said.

After reaching out to other mass-goers and bonding with other choir groups and servers in the parish, she said, the PWD choir members slowly gained confidence.

“PWDs like me should not lose hope. We must always do our best and continue praying. I understand that the challenge for PWDs to become productive is big but we should not give in to self-pity and shame. We are just like the others; normal beings who also have their own struggles,” she said.


Championing PWD rights

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  • In order to move freely about, Charito Manglapus, who has spastic cerebral palsy, uses a motorized wheelchair donated by the National Council on Disability Affairs (NCDA).
  • Manglapus grasps the motorized wheelchair’s stick with great ease. She says the convenience was incomparable to using mechanical wheelchairs, which requires her to grip the wheels.
  • Manglapus answers a call without much difficulty, fingers comfortably moving across the keypad, which she has ingeniously encased in protective plastic.
  • At 84, Chato’s adoptive mother, Aurora Manglapus, shows no sign of slowing down as she watches over her daughter.
  • Shy and timid, Manglapus prefers to spend the day sitting behind her desk, saying this is the only place she is able to paint or write freely.
  • A year after stepping down from CPAP’s presidency, Manglapus’ desk remains an extensive array of organizational miscellany: photocopies of laws and policies relating to the PWD sector, old Palace letters spanning two administrations, old books and files—all neatly stacked in recycled tetra pack boxes.
  • In a stylistic handwriting, Manglapus signs her own name, laughingly dispelling notions that persons with cerebral palsy write with their mouths.
  • In an essay she wrote by hand years ago, “Ninoy Aquino, RP’s Ignition to Awareness,” Manglapus, who studied creative writing, narrates the fervent nationalism that sparked EDSA I, and the recognition that as a PWD, she must take part in history as well.
  • Since joining CPAP, Manglapus, alongside the organization, has consistently pushed for the full implementation of the provisions of Republic Act 7277, or the Magna Carta for Persons with Disabilities, as it promotes the integration of PWDs into the mainstream of society.
  • An old Palace memorandum celebrates the 9th Cerebral Palsy Week, which Manglapus proudly recalls as one of CPAP’s biggest contribution to awareness-building for persons with cerebral palsy and PWDs alike. “Sana magtuloy-tuloy pa,” she smiles.
  • While it is true that there are numerous existing laws and policies concerning PWDs, Manglapus laments their poor implementation among local governments.
  • If there is one thing Manglapus has learned, it is that government should protect PWD rights because it is theirs to begin with, not because they are to be pitied—they are, in fact, capable of contributing to society.

Text and photos by KRIXIA SUBINGSUBING

VOICES echoed across the Senate conference room as senators and representatives of various persons with disabilities organizations across the nation discussed the creation of PWD Affairs Offices (PDAOs) at the local government level in 2008.

Charito “Chato” Manglapus, then president of Cerebral Palsied Association of the Philippines (CPAP), listened intently, but otherwise sat quietly in her wheelchair—until then National Council on Disability Affairs (NCDA) chair Rosie Romulo made the mistake of overgeneralizing: “…mentally challenged such as persons with cerebral palsy…”

In a high-pitched, almost child-like voice, Manglapus nervously but decisively challenged the assumption. “With all due respect, ma’am, hindi lahat ng may cerebral palsy ay mentally challenged (Not all persons with cerebral palsy are mentally challenged),” she said.

In what she fondly recalls as a defining moment in her lifelong advocacy for PWD rights, Manglapus would then become one of the most prominent voices in raising PWD awareness across the country as she became actively involved in policymaking and creation of civic programs for the sector.

Born in 1964 with severe spastic cerebral palsy, Manglapus, 61, was told by her adoptive parents that her biological mother tried to hide her pregnancy by using a girdle, which she claims may have caused the abnormal development of her spine.

Cerebral palsy is a group of movement disorders caused by an abnormal development in the part of the brain that affects mobility and coordination, as was Manglapus’ case.

Noong bata ako, nakakalipat-lipat pa ako ng upuan mag-isa. Pero n’ung 10 years old na ako, (napansin) na nila mama, hirap na ‘ko tumayo (When I was younger, I used to be able to transfer chairs by myself. But when I reached 10 years old, my parents noticed it had become increasingly difficult for me),” she said.

Her adoptive mother, Aurora, laments that doctors had very little knowledge of cerebral palsy back then. In fact, she said, it took the late National Scientist Fe del Mundo to correctly diagnose Manglapus, then three years old, and refer them to what is now the Philippine Cerebral Palsy Inc. (PCPI).

Though she was never able to fully walk and has to move around in a wheelchair, Manglapus learned to do regular daily activities such as eating and writing—albeit at a sluggish pace—by herself, through the help of physical and occupational therapy.

Ayoko rin nagbibigay ng burden sa mga taong nakapaligid sa’kin. Hangga’t kaya kong gawin mag-isa, gagawin ko (I don’t want to be a burden to everyone around me. As long as I can do it on my own, I will do it),” she said.

She finished elementary in Hacienda San Francisco Public High School, a regular school in Isabela. However, midway in her first year in high school, Manglapus, who was sickly and frail as a child, decided to undergo home tutoring rather than pursue secondary education.

Instead, she studied creative writing and oil painting, showing extraordinary skill in the latter.

As a child with cerebral palsy, she said she was fortunate enough to have been surrounded by friends and relatives who understood her condition, if not at least showed sympathy. But the shy, timid Manglapus would later on find real confidence in her life’s one true passion: advocacy work.

Manglapus is one of the first members of CPAP, a nonstock, nonprofit organization formed by persons with cerebral palsy who are actively engaged in civic work and policymaking regarding PWDs. It aims to promote awareness of as well as protect the rights of persons with cerebral palsy, and to encourage them to participate in nation-building despite their disability.

Encouraged by doctors from PCPI to form their own organization, CPAP was founded by fellow spastic cerebral palsy quadriplegic and close friend Rodrigo “Peewee” Kapunan in 1993, who also invited her on the organizational board.

Reluctantly assuming presidency in 2003, Manglapus sheepishly recalls avoiding board meetings during her first year as president, partly due to her embarrassment at her underdeveloped voice and her perceived lack of skill in handling the organization.

Eventually, fellow PWD Lauro Forcil gently chastised her, saying in order to lift society’s negative perception of their sector, she herself must work at the helm of all the organization’s efforts.

Nahiya ako sa sarili ko n’un (I was ashamed of myself),” she smiled, shaking her head.

Since then, Manglapus assumed full command of the organization. Whatever she failed to learn in school, she learned during the course of her 10-year term: a firm grasp on laws and policies concerning the sector, and the ability to dialogue not only with authority but with her fellow PWDs.

Under her administration, CPAP, along with The Asia Foundation, launched its first project, the CPAP Awareness Project Seminar on Causes, Prevention, and Management series, which was held across the country, at the invitation of several local government units such as Cebu, Iloilo and Davao.

With the help of several resource speakers from the sector itself, they were able to visit schools and educate students and parents alike on the experiences and rights as a PWD. The awareness campaign specifically targeted to educate parents about cerebral palsy, so that they will not hide their children.

In line with this, Manglapus, alongside CPAP’s current president Dennis Ilagan, successfully lobbied in 2004 for the implementation of Presidential Proclamation 588, or the Cerebral Palsy Awareness and Protection (CPAP) Week, held annually during Sept. 16-22.

This, she said, is to encourage persons with cerebral palsy to participate in programs and activities specifically geared towards their skill and personality development.

It was under Manglapus’ leadership that CPAP, in partnership with The Asia Foundation, Australian Aid and the Commission on Elections, took a significant step in PWD suffrage through their Voters’ Education Campaign in 2012, which aimed to increase electoral participation among PWDs.

In accordance with Republic Act 7277 or the Magna Carta for PWDs, which recognizes the right of PWDs to suffrage, the organization conducted seminars in different towns where PWDs can validate or update their voter’s registrations in preparation for the 2013 elections.

A staunch advocate for PWD suffrage, Manglapus believes that elections must and should be an arena to voice out their sector’s concerns, concerns which are just as pressing, if not more than, as any as the rest of the nation’s.

N’ung una akong bumoto, d’un ko talaga naramdaman na, ay, Filipino pala ako (When I first voted, that was when I realized I am a Filipino),” she said, laughing. “‘Yun ‘yung gusto kong maramdaman ng kapwa ko PWD, na karapatan nilang bumoto (That is what I want my fellow PWDs to feel, to recognize that it is their right to vote).”

While she has stepped down from presidency of CPAP, Manglapus acknowledges that there is still a lot to be done for her fellow PWDs, especially those with cerebral palsy.

For example, she said, CPAP, now under Ilagan’s leadership, is lobbying to include households with PWDs as automatic beneficiaries of the Pantawid Pamilyang Pilipino (4Ps) Program, as they are more likely to be pushed into poverty by higher out-of-pocket expenses for medicine, education and transportation.

Manglapus said she wishes that qualified PWDs with exceptional voice talents may be employed and trained in dubbing and broadcasting by radio and television networks—so that PWDs have a voice in media, literally.

While championing for an inclusive Philippines remains a difficult challenge, Manglapus hopes that one day, PWDs become empowered to assert their place in society—a place which is rightfully theirs in the first place.

Dapat ang mga karapatan natin, binibigay sa’tin dahil sa atin ‘yun, hindi dahil kinakaawaan tayo (Our rights are not a privilege nor given out of sympathy, it is ours),” she said.

Capability, not disability

 

By KRIXIA SUBINGSUBING

 

VIBRANT, colorful paintings of green landscapes, waterfalls, flora and fauna—all worthy of an art exhibit—adorn the Manglapus house, from the foyer to the dining room.

 

In contrast, their painter, moving around in a wheelchair, simply passes them by. In her mind, she thinks of something else entirely: her work as a figure in the promotion of persons with disabilities’ (PWD) rights.

 

Before Charito “Chato” Manglapus, 61 and with cerebral palsy, assumed the presidency of the Cerebral Palsied Association of the Philippines (CPAP) 10 years ago, she was an artist, bringing postcard images into life on canvass.

 

Under the tutelage of fellow PWD Virgilia Soriano, a nun who was hard of hearing, Manglapus learned the art of oil painting, eventually venturing from simple flora and fauna, into full-blown paintings of vast landscapes.

 

  • When Manglapus first began in the art of oil painting, her first subjects were flora and fauna, finding a great deal of comfort in nature as a subject.
  • When Manglapus first began in the art of oil painting, her first subjects were flora and fauna, finding a great deal of comfort in nature as a subject.
  • Now hanging in the family dining room, Manglapus’ 1996 painting, “The Last Supper,” was her last venture into the craft before she immersed herself in advocacy work.
  • Captured in this old photo is Manglapus and one of her earliest paintings, which later on, she said, had been washed out by rain.
  • Photo 5: A lover of Nature, Manglapus paints by the riverside.

Her last obra maestra before she joined CPAP was a replica of the da Vinci classic, “The Last Supper.”

 

Because of the abnormal development of her hands as a result of her disability, Manglapus laughingly recalls people’s disbelief whenever they see her paintings.

 

Dati, palaging napapagkamalan na mouth painting, (pero) hindi naman. Pero para maipwesto ko ‘yung brush, bibig ko ‘yung ginagamit ko (Before my paintings were thought of as mouth paintings, but it’s not true. But I do position the brush in my hand with my mouth),” she said.

 

Despite her excellence in the craft, Manglapus never thought of becoming a painter by trade, preferring, instead, to paint in her leisure time.

 

Even then, she used her paintings to help further PWD goals, once joining five of her paintings in a fundraising by the Tahanang Walang Hagdanan, a rehabilitation and skills training center for people with orthopedic disabilities.

 

Although she stopped painting after joining CPAP to engage herself full-time in civic work, Manglapus went on to show that PWDs are indeed, capable, not only in their chosen crafts but in nation-building as well.

 

Ipapakita namin na ‘yung disability namin, hindi reason para hindi maging productive (Let us show that our disability is not a reason not to be productive),” she said. “Do not focus on your disability, but on your capability.”

 

(The author is a journalism major of the University of the Philippines-Diliman. She submitted this story for the journalism seminar class “Reporting on Persons with Disabilities” under VERA Files trustee Yvonne T. Chua.)

Hotel gets impromptu lessons on how to—and not to—evacuate PWDs during Shake Drill

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Drop, cover, hold

Drop, cover, hold

Text and photos by YVONNE T. CHUA

AT 10:30 a.m., the hotel emergency alarm went off, signaling the start of Thursday’s “Shake Drill” designed to prepare Metro Manilans for a 7.2 magnitude earthquake or the “Big One.”

Many of the 30 or so guests meeting at the hotel’s fifth-floor function room quickly stood up and gathered their belongings. As some headed toward the door, an announcement in English blared over the PA system, reminding them to stay put and to drop, cover and hold.

Most did as told. But it took three guests slightly longer to do so: They were blind and had to be assisted to the floor.

Five others, all of them in wheelchairs, meanwhile, covered their heads with their hands.

In about a minute, the second announcement came: Evacuate the building.

The hotel staff requested everyone who had no disability to leave the room right away.

They would, they assured the group, take care of “extricating” persons with disabilities: the three blind guests, the five wheelchair users, an amputee who uses crutches—and one who passed himself off as a deaf person to test how well equipped the hotel was to evacuate persons with disabilities in case of a disaster.

And that was how Oakwood Premier Hotel in Ortigas, Pasig discovered it wasn’t, not even with the disaster training its staff had undergone just two weeks ago.

The reality check came from no less the leaders of disabled people’s organizations (DPOs) and disability advocates whom The Asia Foundation had gathered for a briefing on the Australian government’s disability strategy.

Had the TAF held the meeting in another hotel, the results would probably have been the same.

Ponce tests the hotel's readiness to assist PWDs during disasters by pretending to be deaf.

Ponce tests the hotel’s readiness to assist PWDs during disasters by pretending to be deaf.

As the guests exited Oakwood’s function room, deaf community advocate Arthur Allan Ponce dashed to the waitstaff and began signing as he pretended to be deaf. When he couldn’t get his message across, he used finger spelling. One of the waiters then led him to the fire escape—and left him there.

Unguided, Ponce made his way down to the ground floor where he approached the hotel’s “fire tenders,” again signing to them that he needed help. Apparently at a loss over how to deal with him, the tenders turned their backs on him.

Meanwhile, he could hear the announcements coming over the PA system or being shouted to guests. He observed the hotel had no lights to guide people with hearing disability had power been cut, and no sign cards with graphic warning to tell them and the other guests where to seek shelter.

“If this had happened at night, I would have been dead,” Ponce, of the Philippine Accessible Deaf Services, said after the half-hour drill.

ATRIEV's Tony Llanes, who is blind, is assisted out of the function room

ATRIEV’s Tony Llanes, who is blind, is assisted out of the function room

Back at Oakwood’s fifth floor, the hotel staff gingerly led the three blind persons one by one out of the function room, down through the fire escape to the ground floor. All of them are from the Adaptive Technology for Rehabilitation, Integration and Empowerment of the Visually Impaired (ATRIEV) who had gone to the meeting with just one companion.

But when they reached a supposedly safe place, “they just left me there,” said Atriev’s Carol Catacutan. “They didn’t endorse me to someone else.”

Evacuating the five wheelchair users from the fifth floor proved the most challenging for the hotel. The five waited patiently outside the function room as hotel personnel discussed among themselves how to carry them down five flights of stairs one at a time. The hotel has a spine board but didn’t use it in the drill.

Two hotel employees are assigned to bring CPAP's Denny Ilagan to "safety"

Two hotel employees are assigned to bring CPAP’s Denny Ilagan to “safety”

Only two employees lifted the hefty Dennis Ilagan, president of the Cerebral Palsied Association of the Philippines, out of his wheelchair and carried him down the fire escape by the armpits and legs. The employees paused at every stair landing to catch their breath and switch positions as they felt the strain in their arms.

They eventually got Ilagan out to the street where a medic took his blood pressure. But hotel employees left his wheelchair on the fifth floor. This was brought down when the other wheelchair users firmly explained why Ilagan needed it.

“When the person gets to an accessible place, he’ll use the wheelchair to wheel himself to safety,” said AKAP-Pinoy’s Abner Manlapaz, who also uses a wheelchair.

"Rescuers" help Grace Ilagan, also of CPAP, back into her wheelchair

“Rescuers” help Grace Ilagan, also of CPAP, back into her wheelchair

Two hotel employees would also later carry Ilagan’s wife, Grace, down and out of the building. But she was apprehensive throughout the rescue.

She could sense the employees’ panic and exhaustion. One of them had muttered, “Pagod na ako (I’m tired).”

Every time their grip on her slackened, Grace feared they would drop her and she might injure her spinal cord. “Please, not a spinal cord injury. I already have cerebral palsy,” she said.

Grace said she was lucky Shelly Thomson of Australia’s Department of Foreign Affairs and Trade was nearby when she was being moved.

Thomson, who was in Manila to give briefings on Australia’s disability strategy and conduct disability training, showed hotel employees the correct way of carrying a PWD like Grace.

Unlike the Ilagans, Manlapaz refused to be bodily carried. He insisted on being brought down in his wheelchair.

His instruction was clear: Four people were needed to carry his wheelchair. The hotel assigned two. As they wended through the narrow fire escape, Manlapaz persuaded two more employees to help.

Out on the street, hotel guests found the first staging area was right under trees and an electricity post in front of the looming luxury hotel, instead of at the open-air parking lot adjoining it which was a safe zone.

In the end, the other two wheelchair users—Charito Manglapus of CPAP and Bianca Lapuz of the Commission on Elections—stayed behind on the fifth floor. Manglapus uses an electric wheelchair and Lapuz a wheelchair scooter.

Manglapus would say later that it would have been not only difficult but also dangerous to carry her down the way hotel staff did with the other wheelchair users because she can’t cross her arms.

Oakwood GM Trevor MacDonald records how the drill went

Oakwood GM Trevor MacDonald records how the drill went

Later in the day, when things quieted down, Oakwood Premier general manager Trevor MacDonald personally thanked the PWDs and disability advocates for the valuable lessons the hotel unexpectedly learned first hand during the drill.

For Thursday’s drill, the hotel staff learned only at 10 a.m.—half an hour before the metrowide drill—that they would also be evacuating PWDs. This after the PWDs at the TAF meeting declared that they were joining the drill which, they said, should be disability inclusive.

Already considered by many disability advocates as PWD-friendly, the hotel was convening a special meeting that afternoon to discuss how it can better respond to disasters, especially for persons with disabilities, MacDonald said.

TAF Deputy Country Representative Maribel Buenaobra and other disability advocatessuggested disability sensitivity training not only for Oakwood but for other hotels, especially for first responders.

The government’s National Council for Disability Affairs runs such courses, including how to extricate people with different disabilities during emergencies.

The courses teach one- to four-person carry for persons with mobility problems, communicating through signing, writing or lip reading for those who are deaf or hard of hearing, and guiding blind people to safety, among other things, said NCDA’s Delfina Baquir.

Disability advocates also stressed the importance of providing instructions in Filipino or the vernacular, and in graphics.

But there’s an equally important thing to bear in mind when rescuing PWDs during disasters. Said Manlapaz: “Ask PWDs how they want to be assisted.”

Earmarking the misheard

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During his free time, Torralba covers events related to PWDs. Photo courtesy of RAPHAEL TORRALBA

During his free time, Torralba covers events related to PWDs. Photo courtesy of RAPHAEL TORRALBA

By CAMILLE AGUINALDO

RAPHAEL Torralba never thought that a fall from the stairs would change his life forever.

The impact of the accident when he was two years old left him with tinnitus, a ringing in the ears. He tried to subdue this unnerving feeling by covering his ears but to no avail. Every time his mother would call him, he did not respond. According to the doctor, the accident partially damaged his hearing.

Since then, the ringing in his ears has never left Torralba.

While growing up, the ringing was a constant reminder of a disability he did not fully understand. He was torn between whether he was deaf, though he does not sign, or hearing, though not fully hearing. And for that, he grew quiet and shy as he pondered over the lack of identity he felt.

“I didn’t have my own identity before. It was like I was lost in the world. Who am I really? Am I really Deaf or hearing? Because of that, I adjusted in the hearing world even though many discriminate,” the 31-year-old Torralba said in Filipino.

Little did the young Torralba know that someday he would lead in creating an organization representing the hard of hearing in the Philippines, which will help people who are hard of hearing like him identify themselves and embrace their disability.

In 2011, the International Federation of the Hard of Hearing People (IFHOH) approached Torralba with the intention to form a hard of hearing organization in the Philippines. The federation also wanted to establish a regional platform for the hard of hearing in Asia and the Pacific. Torralba agreed, saying he would try to gather persons who are hard of hearing.

Walang boses at walang identidad ang hard of hearing sa Pilipinas unlike sa ibang bansa. Sa Europe, sa America, may deaf community, may hard of hearing community (People who are hard of hearing group have no voice and no identity in the Philippines, unlike other countries. In Europe and America, there is a deaf community and a hard of hearing community),” he said.

The term “hard of hearing” is used to define all groups of people with some level of hearing difficulty, including those with mild to profound hearing losses, according to IFHOH.

Most people who are hard of hearing are unaware of the nature of their disability. In Torralba’s case, it was only when he volunteered at the Philippine Federation of the Deaf (PFD) did he fully understand his disability, and its distinction from being deaf.

As things stand, people who are hard of hearing are clustered inside the Deaf community, even though there is a major difference between the two. For example, people who are hard of hearing use lip reading as a mode of communication while the Deaf use sign language.

The dilemma is that they do not hear but they are not deaf, Torralba said. Because of this, most people who are hard of hearing choose the hearing world and adjust. However, some go into the Deaf community.

But now that the hard of hearing are growing in numbers, they are planning to form an association, even a federation of the hard of hearing in the Philippines, Torralba said.

“The Arts in Silence Abilympian Triad” photo and painting exhibit of Torralba and Deaf artists Dennis Balan and Jose Dela Cruz in 2013. Photo courtesy of RAPHAEL TORRALBA

“The Arts in Silence Abilympian Triad” photo and painting exhibit of Torralba and Deaf artists Dennis Balan and Jose Dela Cruz in 2013. Photo courtesy of RAPHAEL TORRALBA

Torralba, who is a foreign service posts coordinator at the Department of Foreign Affairs, is organizing a regional workshop scheduled next year on the formation of a hard of hearing organization.

When IFHOH first contacted him four years ago, Torralba was then working as a writer and photojournalist at Withnews, a nongovernment organization and online news site on Persons with Disabilities based in South Korea.

Writing for Withnews exposed him to the different issues of persons with disabilities in the Philippines. His pieces were mostly on life stories of famous and successful PWDs, like Lauro Purcil, lead convenor in the Philippine Coalition on the United Nations Convention on the Rights of Persons with Disabilities (PCUNCRPD).

When the photojournalist in Withnews resigned, Torralba was assigned as replacement. At the time, he had no experience in photography. But he accepted the job, treating it as a challenge to strive harder.

Kuha lang ako ng kuha. Ganun pa rin. Malabo pa rin yung iba kong pictures. Napagsabihan pa ako ng boss ko. Wala akong alam nun. So yung ginawa ko, nag-self study na lang ako, mga books tapos mga Internet guides sa mga photographers (I just took shot after shot. It stayed the same. Some of my pictures were blurred. My boss even reprimanded. I knew nothing about photography back then. What I did, I self-studied with the use of books and Internet guides on photography),” he said.

It was during his coverage in 2008 of the “Photography with a Difference” project of John Chua, an advertising and commercial photographer,with Canon Philippines that Torralba discovered the power of photography. He found that photography can touch the lives of PWDs, and this was when his advocacy started, which is to raise awareness on the potential of PWDs in the Philippines.

“Take my case. I want accessible communication, so I express it through photography. I would take a picture of a parent and a Deaf child bonding using sign language. I am expressing through picture our communication needs,” he said in Filipino.

Torralba’s big break in the field of photography happened also in 2011 when he competed at the 8th International Abilympics in Seoul. The International Abilympics competitions, “Olympics of Abilities,” are skills competitions for people with disabilities and special needs.

Torralba represented the Philippines in the photography category. He was among the top 10 out of 27 represented countries who excelled in photography.

After his triumph, Torralba, together with Deaf photographer Dennis Balan who was a photography Abilympian in 2003 and Jose Dela Cruz who was a painting contestant at both 2003 and 2011 International Abilympics, held photo and painting exhibits in malls, showcasing the talents of PWD artists and proving that their abilities are worthy of employment. Employers who saw the exhibits sent their calling cards to Torralba, offering PWDs jobs.

The United Nations Convention on the Rights of Persons with Disabilities mandates states to ensure the right of PWDs to the opportunity to gain a living in a work environment that is open, inclusive and accessible to them.

Unfortunately in the Philippines, many PWDs don’t stand a chance of getting work because of their disability. This even as the Magna Carta for Disabled Persons guarantees that “no disabled persons shall be denied access to opportunities for suitable employment.”

Torralba knows what it is like to be a victim of discrimination in school and in the job market.

His classmates and even his teachers bullied him when he was in school. He recalls his elementary teacher shouting at him and throwing his book away while the class was reading a story silently. Most of his classmates were laughing at him while some took pity. When Torralba’s mother learned about the incident, she reported it to the principal. The teacher was dismissed, but the bullying did not stop.

In college, a professor who knew his condition marked him absent after he failed to respond to his roll calls for attendance.

Torralba recalls the struggles he went through being a person who is hard of hearing. Photo by CAMILLE AGUINALDO

Torralba recalls the struggles he went through being a person who is hard of hearing. Photo by CAMILLE AGUINALDO

Having difficulties communicating with people, Torralba practiced lip reading in his youth. And if he still had troubles understanding what the person was saying, he would ask the person to write what he or she wanted to say on a piece of paper.

After graduating from college, Torralba spent two years applying for a job but was repeatedly rejected because of his disability. For example, he applied at a multinational company and passed the exam and interview. But when he underwent medical examination, the doctor turned him down because he is hard of hearing.

Ang tinitignan nila, yung disability ko, hindi yung ability ko (What these companies see is my disability, not my disability),” he said.

Fortunately, he stumbled upon the job opening at Withnews. He applied and got his first job. The rest is history.

Today, Torralba has a stable job and has won international awards for photography. He is channeling his efforts toward create a hard of hearing organization in the Philippines which he hopes will be his legacy. But his advocacy of helping PWDs through his pen and his camera continues to consume him.

Para sa akin, pinakamalaki kong achievement ay naiinspire ko yung mga persons with disabilities. Wala nang replacement(For me, my greatest achievement is when I inspire persons with disabilities. There is no replacement),” he said.

(The author recently graduated with a journalism degree from the University of the Philippines-Diliman. She submitted this story for the journalism seminar class “Reporting on Persons with Disabilities” under VERA Files trustee Yvonne T. Chua.)

 

Living for the open road

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For Cuya mobility impairment is no barrier to driving. Photo by VJ BACUNGAN

For Cuya mobility impairment is no barrier to driving. Photo by VJ BACUNGAN

By VJ Bacungan

DRIVING a manual can be agonizing for many drivers, especially in the stop-start traffic of the often-gridlocked metro. Anyone who has been on EDSA or C-5 during rush hour knows the strain of constantly pushing and balancing the clutch pedal just to move at a snail’s pace, like a sadistic dance between car and driver that seems to go on and on.

But 58-year-old family driver Roberto Cuya has no trouble handling the footwork, even though his left foot was crushed by a bus as a teenager. That same foot would be fractured nearly 30 years later, permanently damaging it and, thus, requiring him to use crutches to walk.

“A lot of people are surprised when they see me get out of the driver’s seat,” he said.

Although many would think that Cuya only drives an automatic, he more often drives a manual. In fact, he said he can still do the over-nine-hour drive from his home in Quezon City to his province in Bicol with no problems.

Affectionately called “Uncle Boy” by his family, Cuya has been behind the wheel since he got his professional driver’s license in 1980. Interestingly, he said the Land Transportation Office has never raised an issue over his disability every time he renews his license, which likewise doesn’t carry a condition.

The LTO gives the following license conditions for drivers with impairment: A requires wearing eyeglasses, B requires special equipment for the upper limbs, C requires special equipment for the lower limbs, D restricts the driver to daylight driving and E requires the accompaniment of a person with “normal” hearing.

But driving is more than just a job for Uncle Boy. “I am happiest when I’m behind the wheel,” he said. “I don’t know why, but I feel shy when I’m around other people. But when I drive, I don’t feel like I have a disability. I feel like a normal person.”

Born in Project 4, Quezon City, Uncle Boy is the second of 10 children of Jovito, a sari-sari store owner and jeepney operator, and Nonita, a tailor. Shortly after his birth, his family moved back to their province, the municipality of Tiwi in Albay. There, his love affair with cars began.

Uncle Boy recalls his grandfather—a wealthy businessman who operated a bus company, owned a store and managed a rice field—and his collection of American cars: a Chevrolet, a Ford and an International Harvester. “In a small town like ours, a car was really a status symbol,” he said.

Ironically, it was these very objects of affection and status that led to his first encounter with a disability. Fresh out of high school in 1976, Uncle Boy was out with his driver in their 30-passenger Chevrolet Series 30 bus when the tire blew out.

“While I was helping change the tire, the jack slipped and the entire wood body fell on my left foot,” he said. He was able to walk again a year later.

Cuya in his favorite spot Behind the wheel. Photo by VJ BACUNGAN

Cuya in his favorite spot Behind the wheel. Photo by VJ BACUNGAN

Uncle Boy’s love for cars and driving also spilled over to his education and career. After studying to become a seaman at the Philippine Maritime Institute, he studied to become an auto mechanic. After this, he worked as a driver for a bus company in the province and even became a jeepney driver in Manila in the 1980s.

But nearly three decades after being crushed by a bus, Uncle Boy’s left foot was once again injured in 2004 after he accidentally slipped. This time, the damage from the resulting fracture was far more severe. A metal implant had to be surgically placed into his foot at a hospital in Urdaneta, Pangasinan.

However, his foot got infected and he was brought to the University of Santo Tomas Hospital in Manila, where doctors removed the implant and put an antibiotic bridge into the bone. “After a week, the bridge was removed, but I haven’t walked properly since then,” he said.

The injury and the operations eventually disfigured his left foot, making it around four inches shorter than his right foot. Although he doesn’t have much feeling in his foot anymore, Uncle Boy said he needs to use crutches when walking because he is afraid that stepping on it with his body’s weight could cause it to break again.

However, he can still exert enough force to depress the clutch. “I never lost hope in life since I could still drive,” he said. But the damage to his foot meant that therapy was not a viable option anymore. His disability is likewise complicated by diabetes and uric acid problems.

Despite all these, Uncle Boy said he has never been discriminated or made fun of outright. “Although I can’t be sure of what people say behind my back,” he said. He is also given priority in various establishments.

In line with the United Nations Convention on the Rights of Persons with Disabilities, which the Philippines is a signatory of, Republic Act 7277 or the Magna Carta for Disabled Persons upholds the fundamental rights of persons with disabilities, including protection against discrimination and the establishment of priority lanes.

Uncle Boy’s disability also didn’t stop him from working with cars. In 2007, he was hired as the branch manager of his brother-in-law’s Rapide franchise in Tarlac. He was even given an award for his exemplary performance.

He left his job in 2010. Shortly after, his younger brother, Jovito Jr., a doctor in Quezon City, hired him as his family’s live-in driver.

“Uncle Boy doesn’t like hanging around, doing nothing. That’s why my dad took him in to drive for us. He even taught me how to drive,” said 20-year-old Karl Cuya, Uncle Boy’s nephew and a fourth-year medical technology student at Our Lady of Fatima University.

Karl said his family has always been very supportive of Uncle Boy, especially since both his parents are doctors who can provide free medical care for him. “My dad has also been encouraging him to get a PWD ID,” he said.

According to a 2008 Administrative Order of the National Council for Disability Affairs, the government agency in charge of implementing PWD policies, a PWD ID may be obtained at the Office of the Mayor, the Office of the Barangay Captain, the NCDA or its regional counterpart, Department of Social Welfare and Development offices and participating organizations with memoranda of agreement with the Department of Health. Applicants must submit a fully accomplished application form, two 1’x1’ ID pictures and aduly signed clinical abstract by any licensed private, government clinic, or hospital-based physician.

R.A. 9422, which amends R.A. 7277, stipulates the benefits of the ID, including at least 20 percent discount for medicines, medical and dental services, transportation and even in hotels, restaurants and movie houses, among others.

But as much as Uncle Boy appreciates the perks, he said he doesn’t have an ID yet because the process of getting one is too difficult. “The PWD office in my barangay is hard to get to since I have to climb stairs,” he said.

He would really prefer a method of applying for an ID without showing up at the office. In fact, he believes that it would be a better idea to give benefits to PWDs even without showing an ID.

Karl agrees, saying that a less taxing application process, such as through postal mail or online, would be far easier for PWDs.

R.A. 10070, the law that established the NCDA, mandates local government units to put up a Persons with Disability Affairs Office or appoint a PWD Affairs Officer to cater to the needs of PWDs. Additionally, the Marcos-era Batas Pambansa 344 enumerates guidelines that establishments, including government offices, must follow to ensure accessibility for PWDs, such as providing ramps, railings and elevators to aid mobility.

Uncle Boy also criticized how PWDs in the country are not given enough job opportunities, with many wanting to return to the workforce to contribute to society. “I prefer working over begging,” he said.

R.A. 10524, which also amends R.A. 7277, requires at least 1 percent of employees in government offices to be PWDs, with the same percentage being encouraged for private companies that have over 100 employees. This law also gives incentives to private employers that hire PWDs, including a 25 percent tax deduction to their gross income, based on wages to PWD employees, and a 50 percent tax deduction to their net income, based on the cost of PWD-friendly features that are outside those required under B.P. 344.

Between driving duties, Uncle Boy enjoys working on cars. His face lit up when he talked about his pride and joy, a 1987 Nissan Maxima.

“I bought it in Filinvest a few years ago for P40,000. I like its performance since it has a 2.0-liter engine. And it really feels like a luxury car. I’m hoping to restore it to showroom condition one day,” he said.

Uncle Boy’s wife, Saturnina, passed away in 1987. He has two children who support him emotionally and financially. Son Anthony is a physical therapist and daughter Jessica is a nurse in Manila who is qualifying to work in Canada and is planning to bring Uncle Boy with her.

But Uncle Boy has made it very clear to his daughter that he will only live with her abroad when he gets tired of working. “But as long as I have the strength, I’ll keep on driving,” he said.

(The author recently graduated with a journalism degree from the University of the Philippines-Diliman. He submitted this story for the journalism seminar class “Reporting on Persons with Disabilities” under VERA Files trustee Yvonne T. Chua.)

Playing for Pinas: An athlete’s ride to success

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Text and video by GRAZIELLE CHUA

THE multi-awarded athlete holds his right fist to his chest as he recalls the moment the Philippine flag was being raised after he won at the 9th Far East and South Pacific (FESPIC) Games in Kuala Lumpur in 2006. Besting more than 40 countries in the pentathlon wheelchair event by a mere two points, he calls his victory a “miracle.”

Juanito “Speedy” Mingarine brought home the gold medal with a total of 4,447 points from the shotput, javelin, 200-meter, discus throw and 1,500-meter events. He considers this as one of the most memorable wins he has had in all his 25 years of being an athlete.

“I was so happy, I was so proud,” he said. “When they were playing Lupang Hinirang, I was crying and shaking all over.”

Mingarine is one of the athletes with disabilities (AWD) who have brought home multiple awards for the Philippines from international sporting competitions. Since he started competing in 1990, he has brought pride and honor to the country in wheelchair racing, wheelchair basketball and athletics. He also competed in power lifting, canoe kayak and wheelchair ballroom dancing, and plays wheelchair tennis and swimming as a hobby.

What he calls his “only treasures in life” are the awards he gained from these competitions. Among the long list of awards under his belt are a first place win in the male category of wheelchair ballroom dancing in 2008, a Mythical Five Award for wheelchair basketball from the Philippine Sports Association for the Differently Abled (PhilSPADA) Para National Games in 2012, and a bronze medal for wheelchair basketball from the 7th ASEAN Para Games held in Vietnam last year.

This year, as captain ball of the Philippine national team for wheelchair basketball Pilipinas Warriors, he is hoping to bring home another medal for the country in the 8th ASEAN Para Games scheduled in December in Singapore.

Being an AWD has not been an easy ride to success, though, for this 43-year-old athlete.

Mingarine was born third in a family of eight children in Villasis, Pangasinan to Roberto and Antonia Mingarine on March 5, 1972. He got the polio virus when he was 8 months old.

The highly infectious disease is caused by a virus that invades the nervous system and can leave a person totally paralyzed. One in 200 infections is said to lead to irreversible paralysis, while 5 to 10 percent of those paralyzed lead to death when the breathing muscles become immobilized.

Children under 5 years old are most vulnerable to the disease. No cure has been found for polio, but it can be prevented with multiple vaccination.

For Mingarine, the virus led to bone deformations in both of his legs, causing them to shrink and lose strength, affecting his ability to walk. He recalls having to crawl around their house up until he was 6 years old. He was eventually able to walk with the use of crutches when he underwent surgery to straighten his legs at the Philippine Orthopedic Center in 1978.

That same year, his parents sent him to Cainta, Rizal to study at the Marick Elementary School through a scholarship offered by Tahanang Walang Hagdanan, a nonprofit nongovernment organization that offers rehabilitation and skills training for people with orthopedic disability.

During special occasions like its anniversary, Tahanan would organize sporting events for their residents and employees. That was how Mingarine was exposed to sports. Through wheelchair racing, he realized his potential and dreamed of playing professionally in the future.

“I would always win back then. So I said to myself that maybe I can go to other countries with sports. I know no one could beat me,” he said.

Although he was away from his family, he reveled in his new home and his newfound passion for sports.

He had to leave Tahanan, however, to return to Pangasinan to continue his studies at the Amang Perez National High School. The school was a kilometer away and every day, he had to be driven in a bicycle with a sidecar.

Unlike Tahanan, his hometown made him feel different from the people around him that he eventually took his disability with a heavy heart. Looking back, he regrets not being able to go out with friends whenever he wanted, dance at school events, and court his crushes because of his disability.

Athlete Juanito Mingarine shows off his basketball skills on the court in Tahanang Walang Hagdanan. Photo by GRAZIELLE CHUA

Athlete Juanito Mingarine shows off his basketball skills on the court in Tahanang Walang Hagdanan. Photo by GRAZIELLE CHUA

“It came to a point where I would blame my family and God. I even thought about taking my own life. But I couldn’t do it,” he said.

He decided to direct his attention to sports, at the expense of his studies. He would always play basketball, wheeling himself in his sidecar and shooting hoops with friends.

He later struck a deal with his parents, promising to do well in his studies in exchange for a wheelchair. His parents came through with their end of the deal, but Mingarine still found himself focused on basketball such that after his graduation, he went back to Tahanan to pursue sports instead.

“I was not that good in basketball yet, however. The veterans in Tahanan challenged me and made me better,” he said. Mingarine eventually honed his skills and competed in various sporting competitions representing the organization and the country.

Since becoming a part of the national team for wheelchair basketball in 1998, he was given a free dormitory at the PhilSports Arena in Pasig City.

His exposure and participation to sports was not the only thing he had Tahanan to thank for. Mingarine also found a job at the organization. He was assigned to quality assurance and research development of wheelchairs. But more important, the organization also helped him see his disability in a positive light.

“Tahanan has been a great help to me. It was through Tahanan that I accepted who I am. It was as if all the pain and wounds from the past healed,” he said.

The first few years of his sporting career, however, was met with a lot of trials: New equipment, proper coaching and training facilities, as well as lack of support from the government were lacking.

“I trained by myself. I did not depend on the training provided. I persevered to gain strength and trained every day,” he said.

Through sports, Mingarine also learned valuable life lessons. A loss in wheelchair racing in the first Philippine Wheelathon held in 1997 caused him to lose interest in racing. He had trained hard for the event and even bought a new front wheel from abroad for his racing wheelchair, all to no avail. It was because he failed to check the side wheels, which had loose screws. His complacency led to the side wheel falling off during the race, leaving him with an 11th place finish.

“That became a lesson for me. Before, I only relied on my strength and I didn’t care for equipment. I just competed right then and there,” Mingarine said.

In 2002 marital problems led to a split-up with his wife, who took their three children with her. He turned to alcohol to forget his problems. “Every night, I would drink. It was like the whole purpose of my life disappeared,” he said.

Mingarine’s vices caught up with him and took a toll on his health. He developed hypertension, which made it hard for him to play again. He took his condition as a sign to train again and to focus on sports instead. With continuous training, he went back to his old self and eventually climbed to the peak of his athletic career.

His win in the 9th FESPIC Games in 2006 was the start of his international recognition. He was also recognized that year in the San Miguel Corp.-Philippine Sportswriters Association (SMC-PSA) Annual Awards, which featured the best in Philippine sports.

Mingarine felt like a “superstar” as he was honored alongside athletes such as boxing champion Manny Pacquiao, billiards legend Efren “Bata” Reyes, World Pool Champion Ronnie Alcano, basketball star James Yap, and many other athletes who made news in 2006.

“I was so happy and my whole family was there. They didn’t expect that even if I have a disability, I could give pride, not only to my family but to the whole country,” he said.

He dreams of one day being able to coach basketball to give back and share his knowledge and skills to the next generation of athletes.

However, Mingarine resents the fact that despite being a part of the national team, AWDs are still not being supported by the government. He said bigger incentives are given to athletes without disabilities who win in international sporting competitions.

International and local policies uphold the rights of PWDs in sports, as well as other aspects in life. These include equal participation in sport and the availability of state-provided training in sports and physical fitness, as stated in the UN Convention on the Rights of Persons with Disabilities and the Magna Carta for Persons with Disabilities.

Despite these policies, however, AWDs continue to experience discrimination because of the lack of laws protecting their welfare as athletes.

In 2001, Republic Act 9064, or the National Athletes, Coaches and Trainers Benefits and Incentives Act, set aside cash awards for national athletes who will bring home medals from international competitions. The law does not include AWDs in the definition of “national athletes,” making them unable to receive equal cash incentives if they won in international competitions.

Had AWDs been included in the law, Mingarine would have been entitled to P1 million for his first place win in the 2006 FESPIC Games, which is now known as the Asian Games. However, he only received P100,000, a mere 10 percent of the cash award for athletes without disabilities who brought home a gold medal from the international competition.

“We hope one day it (the cash incentive) becomes equal because we represent the same country,” Mingarine said.

Aside from advocating for AWDs, Mingarine is starting up the Philippine Central Axis for Persons with Disabilities, which aims to provide a home and offer jobs to PWDs. He is also co-founder of a start-up company called JAJEV Industry, which manufactures converts vehicles to help PWDs drive a car or tricycle without the use of legs.

His experiences in sports and his life have made Mingarine the person that he is today —humble and thankful for all the blessings that he continues to receive. Life may have been a bumpy ride, but, he said, it is the journey that makes it worth living.

(The author is a journalism major of the University of the Philippines-Diliman. She submitted this story for the journalism seminar class “Reporting on Persons with Disabilities” under VERA Files trustee Yvonne T. Chua.)

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