Tag Archives: PWD Profiles

Godfrey Esperanzate Taberna: the club-footed cyclist

Like any other kid in Nueva Vizcaya in the 80s, Godfrey Taberna has wished to be a part of the province’s rich history in cycling.

“Natuto ako sa sarili kong sikap kasi nahihiya na rin ako magpahawak kasi malaki na ako noon. Sa umpisa, balancing muna. Saka naman sa pagpepedal,” shared Godfrey in an interview via Facebook.

But unlike any other kid in the town, Godfrey is club-footed. His father said it was because Godfrey’s mother used to crave for ginger when the latter was pregnant. The doctor believed, however, that it could be because of a medicine her mother should not have taken. Godfrey did not blame them, though. He believes—till now—that God has a plan for him.

Clubfoot, medically labeled as congenital talipes equinovarus (CTEV), is a general term used to describe a range of unusual positions of the foot. The foot could be pointing downwards; the foot could be pointing upwards. The foot’s heel could be smaller than normal or, in Godfrey’s case; the foot’s toe could be rotated toward the other.

“Hindi ako sumuko kahit lagi ako sumesemplang hanggang sa natututo na at maayos na ang pagba-bike. Hinihiram ko ang bike ng aking mga pinsan—yun maliit, parang semi-mountain bike lang para kapag hindi ko ma-balance, matutukod ko ang paa ko kapag tumumba.”

Early on

Godfrey was born around the time there was an ongoing war in Mindanao. His father, a soldier, had been assigned in Jolo, Sulu so his mother, a housewife, joined in the barracks.

After sometime, his father was reassigned in Luzon and Godfrey had four siblings more. Godfrey was also able to continue his studies even after his father retired. He could recount, however, how he was treated by the other children then.

“Maraming kumukutya sa akin lalo na kaparehong bata sa edad ko noon. Tiniis ko lahat ‘pag naririnig ko pangungutya. Nilalabas ko na lang sa kabilang tenga.”

That was only when Godfrey got to ask God why was he born club-footed.

When Godfrey turned high school, they moved back to Mindanao. His parents have to live within the farm given them, which was farther from where Godfrey and his three sisters live. They either have to walk around a mountain for 10 kilometres or swim in a brook for four kilometres when getting their allowances. So Godfrey strove to learn how to use a bicycle. His father eventually bought him one upon seeing him able to do so.

“Tuwang-tuwa ako kasi may sarili na akong bike. Kahit saan ako mapunta na gusto ko, mapupuntahan ko na. Hindi na rin ako mahihirapan sa pagpunta sa bukid. Malaking bagay rin ang makatipid sa pamasahe.”

Godfrey learned how to bike when he was already in college. He has also come to overcome his self-doubt amidst the rebuke he would often hear. He gained friends and learned his rights as a person, a citizen of his country, and a person with disability. He started to join in various sports such as basketball and volleyball.

Unfortunately, though, when it would be time for the important competitions, Godfrey would be excluded because of his condition.

“May konting galit sa puso ko at pagsisi sa kalagayan ko. Lahat yun ay kinimkim ko na lang at di ko na lang inilalabas. Inaamin ko, naiinggit ako sa kanila. Kung wala akong kapansanan, sana naglalaro ako ngayon. Naipapakita ko ang aking husay, napapanood ako ng maraming tao at napapalakpakan.”

But Godfrey persevered. He continued building his dream to be a cyclist that those watching in TV or reading the newspapers would know about.

“Sa una kong kompetisyon sa bayan namin, nanalo ako. Nagulat sila sa pinakita ko hanggang marami na akong naging kaibigan. Pagkatapos ko ng pag aaral ay nag-bisikleta muna ako kasi dito ako naging masaya. Nag-training kami sa Baguio, Aurora, Manila, Ilocos at at iba pa. Maraming humanga sa akin hanggang sa nagugol lahat sa pag-bibisekleta ang buhay ko.”

Godfrey Taberna (1)

He also met his wife around this time. She supported Godfrey but eventually got fed up when they have nothing anymore to sustain themselves. The situation compelled Godfrey to stop biking. He became an insurance agent, waiter, executive secretary, project manager, and encoder.

After four years, though, Godfrey stumbled across an ad from the Philippine Sports Association for the Differently Abled (PHILSPADA) looking for cyclists like him.

“Parang nabuhay ulit yun dugo ko sa sports. Nagpunta ako sa Manila, nag-present ako ng mga requirements sa PHILSPADA at naghintay ng approval ng Philippine Sports Commission. Magandang balita at natupad din ang pangarap ko na mapabilang sa mga national athletes!”

Godfrey’s first competition was in the 1st Asian Para Games held in Guangzhou, China last October 2014. He won fourth place then. It was followed by competitions in Malaysia, India, and Korea where he won silver and bronze medals. He had struggled against able-bodied athletes in the Ironman 70.3.

“Mahirap lang maging athlete lalo na sa amin na may kapansanan. Hindi pantay ang benefits sa mga able-bodied. Naghihintay rin lang ng laro para magka-allowance.”

He was also greatly challenged when his father died—not from the vehicular accident the latter was caught in but from blood loss.

“Mahirap maka-move on lalo sa isang katulad ng aking ama na siyang nagpadama ng suporta sa aking gusto. Proud na proud siya sa akin at proud na proud din ako sa kanya.”

At present, Godfrey is lobbying for a bike lane to be regulated. He believes ‘bawat nagbibisekleta ay may karapatan na hindi matakot sa daan’. He is also working in a private company in Greenhills when there are no competitions to support his wife and three children.

“Hindi ako sumuko.” ~ Godfrey Taberna

Video taken from the YouTube Channel of the GMA News and Public Affairs

Photo provided by Mr. Taberna

Shaun Webster: the believer

Persons with disabilities (PWDs) are neither scroungers nor superheroes, a 43-year-old man in Rotherham, South Yorkshire maintains.

His name is Shaun Webster, the international project worker of Change, a human rights organization led by PWDs. He has visited the Czech Republic, Bulgaria, and Moldova to train health- and social care professionals on ‘de-institutionalisation’, community living, and community-based care.

With a learning disability himself, Webster has called for the closure of long-stay institutions for young people with learning disabilities through Lumos, a children’s charity founded by JK Rowling.

“They’re doing it faster in Europe, building small group homes and getting people into the community, here they’re dragging their feet, still putting money into care homes. Other countries are less scared, ready to work with people with learning disabilities,” Webster was quoted in a report.

Webster also believes that PWDs, which number about to 1.4 in the United Kingdom, should be more visible in communities ‘to challenge the status quo’. Politicians must be engaged, and a political party of PWDs ‘might be an idea to get our voice across to government because we’re the experts in real life.’

To date, Webster would champion ‘the fact that people with learning disabilities can, should, and do have the same “real life” as everyone else, with a job, home and family life’. He had three children with his childhood sweetheart before they separated. He is now a grandfather of two toddlers and lives in a community-based supported housing.

“It’s starting,” he says, “but we need to make it louder … people want to have proper jobs, to live in the community and not be vulnerable or patronised.” ~ Shaun Webster

Video posted with permission from lumoscharity

Murray Feingold: the doctor-hero

In his death, Dr. Murray Feingold was remembered for his compassion, good humor and visionary approach to health care.

Feingold was a pediatrician who specialized in genetic disorders. He had been the chief of the division of ambulatory services and chief of genetics and birth defects at Boston Floating Hospital for Children, as well as the director of genetics at Franciscan Children’s Hospital and Rehabilitation Center. He also had served as a faculty member of the Tufts University School of Medicine, Harvard Medical School, and Boston University School of Medicine.

But it was not these accomplishments that gained him fame in the medical community. He was the one who discovered the Feingold syndrome, a rare genetic disorder often characterized by abnormalities of the fingers and toes and gastrointestinal blockage.

It was also Feingold who founded the Genesis Foundation for Children (originally named the Genesis Fund) in 1982. It started to provide funding then for the diagnosis, clinical care, education, and enrichment services of children born with genetic disorders and disabilities through The Feingold Center for Children.

Aside from these, Feingold was able to “throw on a clown nose,” “whip out a deck of playing cards,” and “bring a smile to the faces of his tiny patients.” He had hosted “Medical Minute,” a daily medical feature aired on the WBZ-AM.

“He was just one of the nicest, best people that you would ever know. When you talk about Murray, he was never one of those doctors who waved his medical degree in front of your face. He’d always stop to take your questions if you had an ache or pain. You knew he was interested in whatever was bothering you.” ~ Dan Rea

Video taken from the YouTube Channel of the Genesis Foundation

Swarnalatha J: the mother

Proactive, Swarnalatha J set up the Swarga Foundation.

It was an organization she had launched with her husband, Guruprasad T S, where the couple teaches kids and ladies to grow their own food. In this way, the latter would not just be able to ‘become more passionate and kind towards the nature’ but also get trained in healthy eating and holistic living.

Swarnalatha J had thought of this while she was still at a hospital, battling with primary progressive multiple sclerosis. She didn’t have the disease until October 26, 2009—the day before her sixth wedding anniversary. She fainted then because of a sudden fever.

“I thought I was close to death. I was weeping continually looking at my two-year old son. My condition was way beyond the comprehension of the local doctors. I was shifted to Fortis. The next day, on my wedding anniversary, all the tests were done. During my 6-day stay at the hospital, doctors failed to confirm the diagnosis,” she recounted in a report.

In the hospital, however, Swarnalatha J has been able to “[empathize] with nature and began to see divinity in everything.” She has been a ‘different personality’ when she returned home.

“And when I returned home, after 100 days, I was a different personality, looking at life with a different perspective. I had lost of weight, looked younger, and most importantly, felt at peace with myself. I had stopped taking guilt trips and started appreciating gifts of nature. I made myself clear that multiple sclerosis has crept into my brain, I will not let it into my mind,” she had added.

To date, Swarnalatha J still spends three to four months in a hospital every year. She actually would not do anything that is not related to the Swarga Foundation to save her physical energy.

“Only the magnitude varied and that I have to learn to face the problems bravely, because this was the only option left. I read works of Eckhart Tolle, Paulo Coelho, Louise Hay, Anita Moorjani, Sri M, and many more, practiced meditation, yoga, pranayama, Sudarshan Kriya, all amidst the nature, on the banks of River Periyar. And everything was pointing in the same direction—‘To Be’ and ‘To Be Me.’” ~ Swarnalatha J

Video taken from the YouTube Channel of Swarnalatha J

Tatyana McFadden: the wheelchair muse

Her mother had enrolled her in various sports activities at 6. Her mother had encouraged her to “try anything.” Her mother had wanted her to be with all of her friends because, she was told, ‘it is only through falling down that one learns to get up.’

Unfortunately, Tatyana McFadden was turned away and sequestered to a corner seat while the other children like her run, swim and climb ropes.” Her school principal and playmates also treated her warily “when all [I] really wanted was to be included.”

Tatyana was born with spina bifida. She spent the first six years of her life in an orphanage without any medical assistance. She couldn’t stand up on her own, much less walk on her feet.

But Tatyana could swim. She could climb a rope faster than most. She could walk on her hands, prompted by an American family who adopted her when she was six years old.

“Throughout my first years the one thing I was often heard saying was ‘ya sama, which, in Russian, literally means, ‘I, myself.’ It was my declaration of independence. It was my battle cry — to try, to do and, as I have found, to succeed,” Tatyana had recounted in the report.

So Tatyana continued to live in Champaign. She is a University of Illinois alumna and has won 11 Paralympic medals, 14 in World Major marathons, and broken 15 world championship titles.

Recently, though, Tatyana has been barred to participate in the Red Bull’s Wings for Life World Run. Its new rules stipulate that participants cannot use racing chairs and must be accompanied by a “support person.”

“However, this change is inadvertently reinforcing the idea that those of us with existing spinal cord injuries are somehow less than whole persons. My injury is permanent. It has resulted in atrophied legs that I will never be able to walk on. That is the reality of how my body works. I accept this. But it does not define who I am. In the course of my life, I have discovered my own talents and abilities within the body that I have been given. I dislike the term disability, it infers I do not have ability or my abilities are somehow less than that of others. On the contrary, I have abilities others don’t,” Tatyana added in the report.

“In addition, by creating one rule for all disabled people Red Bull is perpetuating a stereotype that people with disabilities are all the same and all need assistance — and, by themselves, are not capable of doing something like racing. Instead it should be a person’s right on how they choose to race, be it with a guide runner, prosthetic leg, everyday wheelchair or a racing wheelchair.”

The Red Bull’s Wings for Life World Run aims to “bring focus on disabilities” and “donate 100 percent of the entry fees to spinal cord research.” Tatyana believes that all of us have disabilities. Some are just more visible and debilitating.

“I believe, however, we all have the ability to achieve greatness in our lives — greatness that often comes out of the crucible of adversity. All it takes is strength, stamina, imagination and the support of the people and the society around us.”

“Living with a disability does not limit one’s ability to excel in life. Let’s not let our society, or some element within it, clip our wings.” ~Tatyana McFadden

Video taken from the YouTube Channel of the BPTeamUSA

Sisters of Invention: the challenged pop group

To change the ‘normal’ people’s perception on persons with disabilities (PWDs), five women with learning disabilities formed the first pop girl group in Adelaide.

Aimee, 28, has Williams syndrome. Jackie, 25, has fetal alcohol spectrum disorder. Annika, 28, is blind with a mild intellectual disability. Both Michelle, 24, and Caroline, 29, have cerebral palsy and, like Annika, a mild intellectual disability.

Every track in the 10-song alternative pop album is the girls’ own story. Chaos And Serenity, for one, is about the “mixed messages” Annika would hear at school: her parents believe she could succeed while her principal won’t. Another track, Tsunami Of Kites, is about Jackie’s cousin who committed suicide.

The Sisters of Invention first performed in 2010 after the singers met through the Tutti Arts, a South Australian organization that supports disabled artists. Michelle said the band’s name was derived from the members’ treatment to each other and their mission ‘to change people’s view of people with disabilities.’

“And that’s where The Sisters of Invention differ from what your average listener or viewer might expect of a ‘disabled band’: this is no parade of trite ~inspirational anthems~. Rather, they are top notch pop songs that, like any other artist, deal with the emotional truths of life; it just happens that for these women, that involves living with disabilities (and living with people’s prejudices about those disabilities),” Clem Bastow, broadcaster and music critic currently based in Melbourne, Australia, wrote in her column for the Daily Life.

The Sisters of Invention would perform 20-30 paid gigs every year. The band’s producer, Michael Ross, has been working with them ever since “to get them to the point where their natural musical talents have created broadcast standard records.” Together, they are already preparing for the Sisters of Invention’s upcoming album. The second video, in fact, is already underway and would be shot at the Luna Park in Sydney.

All of members were influenced by Stella Young, a comedian, journalist and disability advocate in Australia. Her humor was the one that spurred them to change their own thinking about disability and in turn to attempt to do the same for their listeners.

“We’re here to challenge people … and just to get the music out there and where we should be.” ~Aimee Crathern

Video permitted to be posted by the ABC News

Apolinario Mabini: the sublime paralytic

Apolinario Mabini was a Batangueno. He was poor, too. He had to support himself all throughout his school years to be able to study at the Colegio de San Juan de Letran-Manila and at the University of Santo Tomas. Later, he established a private school in Manila and did legal work despite of his infantile paralysis.

He was regarded the “brains of the revolution.” As the President of the Council of Secretaries as well as the Secretary of the Exterior, he was the one who advised then-president Emilio Aguinaldo on the latter’s decrees and proclamations. He was the one who drafted the rules that government municipalities and provinces should observed in his time.

He just resigned in March 1899 and was arrested by the American forces. After he was freed, though, Mabini resumed writing about his criticisms of the government. Eventually, he was captured again and exiled in Guam. He died of cholera after 15 days of liberty.

“To tell a man to be quiet when a necessity not fulfilled is shaking all the fibers of his being is tantamount to asking a hungry man to be filled before taking the food which he needs.” ~Apolinario Mabini

Video taken from the YouTube Channel of the Audiopedia