Story of a PWD | Young man loses leg, but not hope

A young PWD appreciates the help he gets from people.

By CHARIS MAE RIVERA
Bulatlat

“PWDs are not part of the government’s plans.”

So said Alex Mendoza of the Quezon City Federation of Persons with Disability (PWD). He was one of the speakers at the forum, “State of the People’s Health under President Duterte,” held on July 5 at the Philippine General Hospital (PGH). It was led by the Health Alliance for Democracy and Coalition for People’s Right to Health (CPRH).

“Mas bingi pa ang mga kasama sa pamahalaan kesa sa mga kasama naming mga bingi (People in government are even worse of hearing than our deaf colleagues),” Mendoza stated.

It was a strong statement that made me question if it was true. So, I did my research, and this is what I found out.

According to the Philippine Statistics Authority, PWDs in the Philippines are around 1.5 million which is 1.5 percent of the total population of the country. In the 2013 elections, there were 365, 000 registered PWD voters.

Last December 2016, Social Welfare Secretary Judy Taguiwalo signed the implementing rules and regulations of Republic Act No. 10754 or An Act Expanding the Benefits and Privileges of Persons with Disability (PWDs) which exempts PWDs from the 12 percent VAT on their purchases. There is also Republic Act no. 7277 or Magna Carta for Disabled Persons that give PWD rights as part of the society and must be treated as equals.

But despite these laws, many PWDs find difficulty fitting in with society because of the lack of PWD-friendly places. In the 2013 elections, only 80,000 plus in 365,000 registered PWD voters were able to cast their votes. There are some establishments that, until now, are not considerate of their needs and a lot of people still look down on them. PWDs are part of a marginalized sector that are discriminated for their disability. This information made me question if the problem is with the government or with the people in our society.

It started with a bump on the leg

Which brought me to thinking about the case of Jasper Alere, whom I met last year. He was born of Filipino parents in Saudi Arabia and lived there until he was five years old. He is now 22 years old and lives in Paranaque with his parents, his older brother and younger sister.

Everything was fine until August 2014. At that time, he was studying BS Information Technology at AMA when he felt cramps in his right leg. In the hospital, the doctor suspected that he has a tumor so a CT scan was recommended. But his father thought about the high cost of CT Scan and opted to get a second opinion. But this too was delayed.

During a sporting event in school, Jasper suddenly felt weak. He felt as if he was hit by a car. The next day his father noticed the way he walked and rushed him to the hospital. In the hospital, they performed an MRI on his leg and saw a big lump on his leg. The doctors suggested that he should undergo open biopsy, but his dad thought it unnecessary.

One day, when he visited his best friend’s home, they noticed that he couldn’t walk properly anymore and there is a protruding lump on his leg. His best friend took him to a well-known orthopedic doctor, who advised the same thing to him: get a biopsy. Eventually, his dad gave in, and on August 20, he underwent open biopsy at the PGH. After a week, the results that they have been avoiding for a long time came out.

It was confirmed that he had a malignant tumor on his right leg, that it was active and was already spreading. After two operations – one for the open biopsy and another to remove the tumor – the doctors told him that he should get chemotherapy immediately. On September 1, 2014 they started his first session.

“My chemotherapy was eight sessions and the first four really hurt. You know, when we talk about chemotherapy it is like, we’re just talking about it, but when you experience it, extremely painful,” he said.

At that time, he and his family requested the medicine for his chemotherapy from the Philippine Charity Sweepstakes Office (PCSO), but such aid was limited, and they asked for help from other families with chemotherapy patients, who in turn assisted them.

On March 2015, they ended his chemotherapy and he was getting better. After months and months of CT scans and check-ups, this became his daily routine to keep the cancer at bay. But in 2016, his oncologist suggested that he should undergo chemotherapy again. His family has limited resources and he hesitated about putting them under pressure again. Since he was of legal age, he made the decision that he will forego the chemotherapy. For a while, he tried drinking natural medicine that his mom suggested and still continued his check-ups.

By end of April 2016, he received news that devastated him. The doctors told him that his tumor grew back and it was worse than before. They told him that it was best to amputate his right leg before it got worse and even though initially he refused, the doctors said it would happen eventually. Jasper knew he had no choice but to undergo the procedure, held on May 1, 2016, which became one of the saddest days of his life.

After the operation, the doctors assured him that he is cured and his body is completely cleaned of cancer cells. From then on up to this year, he raised funds from friends and family to enable himself to buy a prosthetic leg. A generous friend shouldered half of the price to help him get back on his feet.

“You know those people who got their heart broken? The ones who are so sad that they lose all hope, I’m not like that. Ever since I was a child, I’m always positive. After everything that happened, you just have to smile,” Jasper said.

Staying positive

The main speaker for the abovementioned July 5 forum, Dr. Edelina dela Paz, convenor of the Coalition for the People’s Right to Health, said that after Duterte’s first year, they have seen no significant change in health services. Up to now, seven out of 10 Filipinos still die without medical attention because of poverty, and the lack of health workers and health care facilities.

QC PWD Federation President Mendoza said one of the main reasons that there are many PWDs is because of poverty. Many are like Jasper, who could not afford to get a CT scan, or the extended cost of a chemotherapy, which could have prevented a disability.

But it’s all under the bridge now, and Jasper chooses to see the brighter side of things.

It has been a year since his leg was amputated and he did not have a hard time availing of services, and he appreciates that there are benefits for people like him.

The only problem that he has is when he asks somebody to buy food or a product from establishments, like fast food chains, which require a letter of approval from the PWD to prove that they are buying for a PWD. Sometimes, a letter from him and his PWD identification card do not suffice because the store management refuses to believe that the purchase is for a PWD, unless they see him in person. He only has one leg and he is already having a hard time and he finds some stores unreasonable and insensitive of his situation.

What he noticed is that most people are eager to help PWDs. No matter if you are in a hospital or anywhere else, someone will be there to accommodate you. But sometimes, that is not the case. Some people will just look at you and not care despite the predicament that you are in.

“Minsan sa tao talaga siya, wala siya sa politics, government or anything,” he said.

I couldn’t agree more to what he said. There are a lot to be desired, not just for the PWDs, but for our whole country also. Our government is far from perfect and they can only do so much for the people and we should do our share for our fellow Filipinos. It is time to learn more about the needs of PWDs and to disabuse ourselves of the mentality that they are different from us. It is time to learn how to treat everyone as equals and do what is right, then maybe, just maybe, change will come.

Related: What are the rights of PWDs?