Tag Archives: Cerebral Palsy

Accessibility and more

Local government units (LGUs) in the Philippines have been doing what they can for persons with disabilities (PWDs) in the country.

In Antique, for instance, the Provincial Disability Affairs Office (PDAO) in Antique has held an accessibility audit in the establishments and schools in the city. It was headed by Paolo Castillo who visited the Eagles Hotel, Land Bank of the Philippines, Special Education and Development Antique Integrated School, Antique Christian Center Incorporated, and Advance Central College together with the Association of the Municipal Engineers of Antique, Department of Public Works and Highways (DPWH), Department of Interior and Local Government (DILG).

In Marikina City, on the other hand, Vice Mayor Jose Cadiz has worked on a software so that PWDs can be picked up from specific points in the locality.

It also launched a PWD-friendly tricycle–a first of its kind in the Philippines—which is inspired by the units in Tokyo and Hong Kong. The tricycle has a larger space that can accommodate a passenger in a wheelchair and three persons more. It also has a ramp and straps to easily draw the passenger into the vehicle while securing the wheelchair on board.

The city government has one unit only, though. It was hoping the private sector will contribute in producing more units. The so-called PWD-friendly tricycle will cost P10,000 more than a regular tricycle but there will be no terminal membership fee of P50,000 anymore since the units do not have to be parked in a terminal.

“We are not fighting for pity. What we are asking is for them to respect our rights regardless of our disabilities. Because, in a way, we are all equal.” ~ Charito Manglapus

Video taken from the YouTube Channel of Rappler

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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

Cerebral Palsy

Cerebral palsy (CP) is a broad term used to describe a group of chronic “palsies” that impairs control of movement due to damage to the developing brain. It is nonprogressive but the symptoms brought about by the damage may get better or worse over time.

Between 35% and 50% of children with this chronic childhood disability experiences seizure, mental retardation, learning disabilities, and vision, speech, hearing, or language problems. Infections, birth injuries, and poor oxygen supply to the brain before, during, and immediately after birth are its common factors. Assistive Technology (AT) would therefore allow accessibility to CP patients regardless of their abilities on a daily basis.

For those who cannot speak because of muscle spasms in their mouth, throat and tongue, there are the augmentative alternative communication (AAC) devices such as signs, letters, pictures, and even a voice. The Bright Hub Education, a content site that focuses on education, suggests the use of large markers or paint brushes for those with spastic CP. The Steady Write Writing Instrument, on the other hand, can help in controlling shaky handwriting.

Since CP may cause tightness in the muscles of hips and legs, wheelchairs could lessen difficulty in walking. One of the variety of wheelchairs manufactured by Convaid is a chair with 30-fixed tilt, headrest, and h-harness that can support those with weak trunk muscles. Adaptive tricycles are also now available since it has been found that therapeutic cycling can improve respiration, head and trunk control, strength of the anti-gravity muscles, coordination of the eyes and hands, and self-esteem.

Stool scooters can promote stability. Stair glides and elevators can let individuals with CP travel up and down the stairs with independence, safety and ease.  Mechanical lifts can also transport the latter into a bathtub, wheelchair or bed.

John of Leyte would use an orthesis to be able to use his hands and correct his positioning. Tyler Schwab would have a computer at hand to speak and do his coursework.

“We know that equality of individual ability has never existed and never will, but we do insist that equality of opportunity still must be sought.” ~Franklin D. Roosevelt

Video taken from the YouTube Channel of the Cerebral Palsy Alliance

John, Jansen, and Hannah Mae: Typhoon Survivors

John is a 15-year old boy. His hands are deformed and, because of the spasms, he cannot hold anything in them.

Jansen is five. He spent most of his days lying in bed because it is difficult for him to sit upright.

Hannah Mae is 11. She weighs nine kilos and lives in a two-room house with a thin sheet of metal as roof.

They are just three of the children who have battled the typhoon Yolanda (international name: Haiyan) on this day last year. What sets them apart, though, is that they did so amidst their debilitating physical condition: cerebral palsy.

John has lost his house, which is nearby a beach in Tacloban. Along with it is his family’s income that had been necessary for his medical care.

Jansen was placed at the door of their fridge together with his two brothers as waters rushed into their home. His mother had to hold onto it while clinging onto the wall of an outhouse. Eventually, the waters subsided, leaving Jansen greatly traumatized.

Hannah Mae, on the other hand, was faced with the stress of the disaster helplessly. She wasn’t able to move around even as winds smashed through their windows and ripped of their sheet metal roofs.

It is really necessary for the Philippines to work on its disaster risk reduction for people with disabilities (PWDs) now. It is lying astride the typhoon belt, in the “Pacific Ring of Fire,” and in between the Pacific and Eurasian tectonic plates. Not doing so can worsen the plight of the estimated 10 million PWDs in that country who, as a conference on disaster risk reduction in Cagayan De Oro two years ago concluded, “…are more vulnerable to disasters than others.”

“Decisions and policies to reduce disaster risks must reflect the needs of persons living with disabilities.” ~United Nations Office for Disaster Risk Reduction

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

Photos by Maud Bellon & Molly Feltner of Handicap International