Death of young PWD advocate won’t obstruct vision of accessible Philippines

In the face of seemingly endless odds, Alexander Michael Bautista had risen and persevered.

His story could have ended when he was just 2 years old—when he was diagnosed with spinal muscular atrophy, a rare neuromuscular disease that has no known cure.

Instead, Miggy, as he was fondly called, chose to live, with the conscious decision to spend every single day toward serving others.

A passionate advocate of disability rights in the country, Miggy died on Aug. 13 due to complications from his illness. He was 22.

His remains were buried in Haven of Rest Memorial Park in Tanay town, Rizal province, on Sunday.

His friends, family and colleagues attest to how he had tirelessly worked for a vision he had for the Philippines, where persons with disabilities (PWDs) like him would be accorded equal opportunities and live with independence and dignity that they deserve.

Talk of the Town

Miggy’s incredible journey first appeared on Inquirer’s now-defunct Talk of the Town section on Sept. 13, 2015. Published as an abridged version of this reporter’s undergraduate journalism thesis on the admission and accessibility of the University of the Philippines Diliman for PWDs, his story shed light on the challenges faced by students with disabilities in a university marred with barriers to their learning.

Along with his parents, Gabriel and Soledad, Miggy established a routine that they would adhere to in the next four years. With physical infrastructure still barring his independence, they would leave their Tanay home before dawn every day.

His parents would wheel the young student to all his classes, meetings and events. Most of the time, this involved the arduous task of carrying him and his wheelchair up and down multiple flights of stairs, with security guards and utility personnel extending their help whenever necessary.

But Miggy did not let himself be defined by his disability.

First to say hello

Classmates, who poured in tributes on the news of his passing, remember a diligent student who was always the first to say hello, who never hesitated to share his insights, and who fearlessly took the lead in school activities and extracurricular projects, including a financial literacy talk for PWDs in Cainta town, Rizal.

“As the semester went on, I would realize that, unlike most of his classmates, Miggy already knew how to live a so-called purpose-driven life,” said Oscar Serquina Jr., his professor in communications class. “That is, a life dedicated to raising awareness about differently abled people like himself, to spreading hope and goodwill to many, and to instilling in others the value of persistence despite and maybe because of the odds.”

BA degree, cum laude

The Bautista family’s sacrifices paid off: In June 2018, Miggy obtained his business administration (BA) degree, cum laude—another win in the face of adversity.

As it turned out, Miggy was just gathering momentum.

In July, a conversation with Ady Castueras, a graduate of UP Los Baños who has Duchenne muscular dystrophy and was then living in Singapore, gave birth to an idea that—while he may not have foreseen it then—would soon become Miggy’s lasting legacy.

Castueras, who also uses a wheelchair, asked him how he gets around. In Singapore, he said, public trains and buses were accessible to him and other PWDs. How was it like in the Philippines?

AccessiWheels

“For me, equality for PWDs is not just about the mind-set; it is also about physical means and infrastructure,” Miggy said in his last interview with this reporter two years ago. “Without ramps, without elevators, this is discrimination in the shadows.”

He found his allies in Castueras, classmate Kenneth Fontela and longtime PWD advocate Eva Parreño. Through several boot camps, fellowships and trainings that Miggy all personally attended, with his parents always at his side, AccessiWheels soon took off.

Innovator

AccessiWheels is a social enterprise that connects people with mobility problems and those from the vulnerable sector to trained drivers with accessible vehicles to ensure that PWDs would travel safely and conveniently. He served as founder and chief executive officer of the enterprise.

Bringing his project even further, he attended the University of Connecticut for six weeks last year as an academic fellow under the Young Southeast Asian Leaders Initiative of the US government.

“He was a born innovator who always had a ‘what-can-I-improve and how-can-I-do-it’ attitude,” said TQ Antiqueno of Benilde’s Hub of Innovation for Inclusion, who mentored Miggy in one of its boot camps, in a written tribute. “He believed that good design is design for everyone.”

During the lockdown due to the COVID-19 pandemic, AccessiWheels found a bigger purpose. It offered services to dialysis and chemotherapy patients who had difficulty visiting the hospitals due to travel restrictions.

In just a few months, its service ferried more than 1,000 patients from home to medical facilities, with 33 volunteer drivers, including PWDs themselves.

Even when complications of his illness began to take its grip in July, Miggy continued to be active in his project, ensuring that peoples’ lives are uplifted, just as people around him have uplifted him through the years.

“He was a true changemaker,” Parreño said. “It would have been great if Miggy would see his vision come to fruition.”

Full life

But for Gabriel and Soledad, their eldest son had already lived a full life. “We didn’t realize the impact of Miggy’s work on other people, even if we were with him every day,” his mother said.

Perhaps, Miggy did not need to know. He knew how to serve the best he can.

“I hope that more PWDs will be able to find their voice, not just to help themselves, but society as well,” he said in 2018.

“I think us PWDs, we are the ones who often receive help. I believe our end goal is that we will be the ones to help others.”