PWDs invisible even to human rights advocates

By Carlo Figueroa, VERA Files

CAN one marginalized group be more marginalized than the others?

Yes, say persons with disabilities (PWDs) who live with this assumption every day. Indeed, a report by the Coalition on the U.N. Convention on the Rights of Persons with Disabilities (PhilCoalitionCRPD) says that among vulnerable groups—women, youth, gays and lesbians, and indigenous peoples—PWDs get the least attention from government and sadly, even from human rights campaigners.

Leslie Lomongo, a person with cerebral palsy,
sits in his wheelchair waiting for his ride home.
Photo by Mario.

"Throughout the years, persons with disabilities have remained largely invisible because of discrimination," said PhilCoalitionCRPD in its report submitted to the United Nations Human Rights Council (UNHRC).

The document is part of the joint civil society report submitted for the UNHRC's Universal Periodic Review (UPR) conducted every four years to look at the human rights situations of the U.N. member countries. The Philippines will undergo its review in May.

"Unfortunately, there was no discussion on persons with disabilities in the Philippines' state report for the UPR in 2008," Dr. Liza Martinez, director of the Philippine Deaf Resource Center and a member of the PhilCoalition CPRD said in a recent briefing held in Makati City in preparation for the UPR.

"When will this veil be lifted?" she asked, referring to the lack of attention given to PWD issues even within international discussions on human rights. "The fact that there is no mention of any disability rights, nor any participation by the sector in the first UPR is clearly evidence of this," the coalition's statement added.

Martinez and her group are hoping that the response to her question would come sooner through their recommendations given to the UNHRC.

The coalition is recommending that the Philippines ratify the Optional Protocol to the U.N. Convention on the Rights of Persons with Disabilities (UNCRPD). Though the Philippines signed the convention in 2007, it has yet to ratify the optional protocol.

The convention is an international treaty that obliges signatory states to promote and protect the rights of PWDs. It also establishes a special committee in the U.N. to monitor the implementation of the agreement. The optional protocol meanwhile sets procedures to carry out the provisions of the convention including mechanisms on how to file charges and complaints of violations before the committee, and giving the committee the authority to organize inquiries to investigate allegations.

The second recommendation is for the government to do a comprehensive review of policies that may be discriminatory "on the basis of disability." The coalition's report said that there has been no effort to harmonize local laws with the UNCRPD.

The report identified policies that do not recognize PWDs as legally competent: In several articles of the Civil Code, in the Rules of Court, and policies concerning guardianship, and the appropriation for programs and activities for PWDs.

"Exclusion and discriminatory practices have been so rampant and have existed for such a long time that it has covered the entire sector with a shroud of invisibility which has to date been very difficult to overcome," the report admitted.

To be fair, the coalition also named social protection mechanisms for PWDs: Disability benefits, PhilHealth insurance, and a 20 percent discount on medicine, transportation, and medical services. But the group pointed out that these are insufficient and actually unfair. Only PWDs who are employed enjoy disability benefits, and since a majority of them are unemployed, they are not eligible for these benefits.

"Since many of them are also poor, they would not even have the minimum capacity to purchase medicine, medical services, etc. in the first place so that they can avail of the 20 percent discount. This 20 percent discount is not available in areas where there are no establishments mandated to provide such discounts. Also, labor market programs for persons with disabilities have not been systematic enough to have a significant impact," the report said.

The absence of updated data that provides basic information such as the latest statistics of PWDs is also problematic. "There is a dire lack of documentation for even the most fundamental information about Filipinos with disabilities," the report said.

The last available report made by the National Statistics Office in 2005 was based on the national census conducted five years earlier in 2000. Based on the results of that census, there were more than 942,000 people with disabilities or about 1.23 percent of the country's total population at that time.

Blindness, deafness, paralysis, and mental retardation or mental illness were the four most common impairments. This lack of recent statistics poses a challenge as policymakers rely on these numbers to justify appropriations for programs and services for what is considered a vulnerable sector.

VERA Files is put out by veteran journalists taking a deeper look at current issues. VERA is Latin for true. Via Yahoo News.

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ASP is a member of the Philippine Coalition of UNCRPD.

Be an Autism Angel. Donate generously to Autism Society Philippines. Donations can be deposited to Metrobank Kamias Branch 047-3-04751874-2. Email us at autismphils@gmail.com or call 7-903-5496 for more information.

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Posted in: government

World Autism Hero Goes Online For Filipinos

By Dang U. Koe, ASP Chair Emeritus

Dr. Temple Grandin

Temple Grandin is listed in the 2010 Time 100 list of the 100 most influential people in the world in the category “Heroes.”

As a person with high functioning autism, Temple is an autism icon worldwide, noted for her work in autism advocacy who invented the squeeze machine designed to calm hypersensitive people.

Grandin is also a doctor of animal science and professor at Colorado State University, bestselling author, and consultant to the livestock industry on animal behavior.

Temple Grandin will be gracing, via an interactive online presentation, Autism Society Philippines’ 12th National and 2nd Southeast Asian Autism Conference on April 28-29. It will be the first time for Temple Grandin to face, albeit via online, a Philippine conference.

Maria Angela "Yanna" Aragon

n August last year, HBO Asia showed the Emmy-award winning biopic “Temple Grandin”. Angels Talk looked for a “Pinay Temple Grandin” for a movie review. We found Maria Angela “Yanna” Aragon, 21, currently working as a subcontractor coordinator at IBM Global Process Services.

For this week’s Angels Talk, we asked Yanna to interview Temple Grandin online, while sharing her own story.

*****

I’ve watched your biopic Temple Grandin and read your book ‘Thinking in Pictures’, and— as you, your mother, and your aunt are the only individuals in your family given focus — I’ve always wondered how was your relationship with your father or siblings, if you have any?

I had three siblings. Having an older weird sister in the same school was difficult for my sister who was close to my age.

When my family found out I was special, initially it came as a surprise. Dad wanted to stop working and just take up Special Studies at UP so he can better assist. Mom practically blamed herself. She thought that maybe she didn’t take care of me while I was still in her tummy. How did your family react when they found out about your being autistic, especially after you were diagnosed?

My father had difficulty accepting an autistic child. Mother was my supporter and protector. I get along really well with my siblings and see them every Christmas. We live at opposite ends of the country.

They say most persons with autism are averse to physical affection. My mom said when my sister and I were still young, we were both very close to our yaya (nanny). It was hard to take us away from her. Every chance my parents get, they would carry me.

Eventually, I began to get used to, even like, the feeling of being hugged, kissed, etc--thanks to family and most of my friends. However, there were times that I’d still feel uncomfortable with giving and receiving physical contact (e.g. when coming from people who are too touchy-feely, from strangers) How were you able to display affection towards members of your family?

Temple: All the answers to this question are in my book “Thinking in Pictures”.

I usually explain to people that children with autism are special. They are affectionate in their own way but they need a greater degree of understanding and patience.

How can autism be explained to children, in a way that doesn’t lead to bullying or negative impressions?

Autism is a broad spectrum ranging from geniuses such as Einstein to very severe. Mozart probably had mild autism.

My parents said we didn’t have to explain autism much to our relatives. They knew I was special. But whenever I exhibited inappropriate behavior, my parents had to call my attention and later explain it to me a bit about behavioral issues. How did your parents explain autism to any young relatives you have?

She explained that I had a brain handicap that was not visible like a wheelchair.

What can you advise to families of those with autism, especially to those who either rely too much on institutions, or on themselves, in order to get them to work together to help the member with autism?

Families need to get together to support each other and create local support groups. Parents need to support and counsel other parents.

This article first appeared in the print and online versions of the Manila Bulletin.

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Aside from Temple Grandin, another autism self-advocate, Dr. Stephen Shore, will be online for the 12th National and 2nd Southeast Asian Conference on Autism, April 28-29, at Crowne Plaza. The conference, titled “Living with Autism (Hope@Home)” will also feature local autism experts like Dr. Alexis Reyes, and actual experiences of Filipino families. For more details, please email aspnc2012@gmail.com or follow us on Facebook.

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Posted in: angels-talk,nac

Living with autism amidst disaster

Autism Society Philippines (ASP) will hold its 12th National Conference and 2nd Southeast Asian Conference on Autism on April 28 and 29, 2012 with theme “LIVING WITH AUTISM: Hope@Home” at Crowne Plaza Manila Galleria, Ortigas Ave. corner ADB Avenue, Quezon City. One of our panelists in “When Disaster Strikes Home” is Mr. Alejandro Cabason, Jr, ASP Marikina Valley Chapter President and a father to Vinz, a 13 y/o boy with autism.

Below is the experience of Alex and the rest of his family during super typhoon Ondoy:

"We were a bit lucky that Typhoon Ondoy struck and hit our area at Provident Village around 11AM, unlike in Cagayan and Iligan Cities. But speaking of typhoons and flooding, this calamity is no longer new to me in the first place. Our province (Southern Leyte) often experiences typhoons particularly during "ber" months. In addition, I also had an encounter with flooding while I was on vacation in Butuan City in the early 60's and in Sta Mesa, Manila in the 70's.

"Back to Ondoy, when mudded water entered our garage, I knew that something worst is about to happen. For the past 20 years we were at Provident, flooding never reached our garage area. And if there would be flooding, it was purely from rain water and it was always outside our elevated bungalow house.

"It was September 26, a Saturday, and I instinctively gave instructions to all my children to pack their most important belongings and transfer to my brother-in-law's two storey house, just beside our house. My three children started packing important things hastily except our youngest son, with autism, Vinz. His innocence-filled eyes just stared with what his siblings were doing. Unlike all of us, he just walk ed very casually albeit carefully without bringing anything except his slippers. As the flood was fast rising, all of us silently kept our fear but never saw that in Vinz.

The Cabason and Martin families during the Typhoon
Ondoy (Photo by Philippine Daily Inquirer)

"We also had our share of anguish when the water already reached the second floor of my brother-in-law 's house. But again Vinz was a picture of calmness and serenity. When we decided to transfer to our roof's house via the branches of a mango tree between our houses (so we can be seen by rescuers that never came), Vinz simply followed with us every step of the way. Even when the water leveled at 14 feet, Vinz just stared at the water, and oftentimes asking "his way" of the flooding.

"While we adults were preparing for something that we could cling to and help us afloat, Vinz accompanied his siblings praying and reciting the holy rosary. But unlike his siblings, Vinz never had a fear and anxiety in him. In short, he perfected the art often portrayed among believers, he simply knew that God will bail all of us from this natural wrath.

"When we decided to go back to spend the evening at my Bro-in-law's attic, Vinz never had a problem peeing unlike us. He just went straight to the window and did his thing. When all us were already uncomfortable because we were all wet including our underwear, Vinz was so relaxed wearing only his uncle's big shirt.

"Throughout the ordeal, Vinz never complained and worried. Having autism must be an advantage to most children with autism and with special needs during calamities."

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Register now to the 12th National Conference on Autism to find out how you can prepare the strike of typhoon. You can email us at aspnc2012@gmail.com or call us at 7-903-5496 to register. For more details on the 12th National Conference on Autism, click here.

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Posted in: nac,pers

Autism Early Detection & Intervention Made Available in Quezon City

By Tiffany Tan, ASP Board Secretary

News headlines across the autism community read today (March 30, 2012) “Autism now 1:88 in American children!” Last year, South Korea reported 2.64% of their nation’s school children or about 1:38 have autism. In Europe, North America and Asia, an estimated 1% reported prevalence.

With close to a million families dealing with autism in the Philippines, government agencies are starting to realize that there is hope despite the increase in numbers.

Quezon City is one of the first cities in Asia to have an Ordinance establishing a Sustainable Program for Special Children. This ordinance, known as Quezon City Ordinance No. 1915 was signed by then mayor and now House Speaker, Honorable Feliciano "Sonny" Racimo Belmonte, Jr. during the 3rd World Autism Awareness Day.

Another anticipated highlight for the 5th World Autism Awareness Day will be the launching of The Autism Early Detection and Early Intervention Project (EDEIP) in Quezon City. The project is a tri-party collaboration between AKBAYAN Party List, the Quezon City (QC) Government and Autism Society Philippines.

ASP conducts Early Detection and Intervention Programs for social workers, health workers and public school teachers all over the country.

Currently, there are seven satellite ASP Chapters located in Quezon City - Commonwealth, Diliman, Lagro, Muñoz, Novaliches, Proj. 3 and Proj. 4 and Cubao. Beneficiaries of the project will be parents of children with autism, Barangay Health Workers, Day Care Teachers, and Social Workers from these areas.

According to Executive Director, Ranil Sorongon, children with autism need of assistance in terms of diagnosis, therapy and support services, as well as education and intervention programs that will increase their chances to develop into self-sufficient and productive individuals.

He also said that there is an urgent need to promote public awareness of autism and equip the concerned people, especially parents, who are the primary care givers.

As implementers of the project, ASP will provide resource speakers and facilitators for the seminars. Materials like posters and brochures on autism will be distributed to help generate more awareness to the citizens of Quezon City.

ASP QC Chapters will witness the signing of the Memorandum of Agreement between parties on April 1, 2012 at SM City Fairview. ASP looks forward to more partnership and collaboration between government agencies in improving the plights of families dealing with autism.

Be an Autism Angel. Donate generously to ASP’s Early Detection and Early Intervention Project. Donations can be deposited to Metrobank Kamias Branch 047-3-04751874-2. Email us at autismphils@gmail.com or call 7-903-5496 for more information.

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Posted in: best,community,edeip,government

WAAD is needed for Autism?

By JR Tan, Person with Autism

World Autism Awareness Day (or WAAD) was created by a resolution from the United Nations General Assembly last 2008, to celebrate April 2 annually. This celebration is intended to give access to services to people with autism like me. It is also intended to showcase the talents belonging to this disability group and not to look down on them as second-class citizens or as "worthless".

JR Tan during his talk at the 3rd Regional Conference on Autism
held at Cagayan de Oro, hosted by ASP Cagayan de Oro Chapter.

Every year, various people with autism are invited to the AutiSMusical event to sing or play musical instruments. They have a passion for music and want to use them as their gifts to advocate for their disability. In other words, people's perception on people with autism may be changed, although some may not believe it or be convinced at first.

There are also some stalls that sell merchandise made by people with autism - they have crafted those with their hands, with the assistance of their teachers or other mentors. Does this mean that they are lesser a person? They're not! They are just promoting their abilities through their art.

People with autism should be given the proper dignity and respect by not vilifying or exposing them to public ridicule. Being a part of this disability group, I believe that we should be given a bright future to be productive citizens and not confine us to our limitations.

On the other hand, some families of people with autism despair that they do not have adequate resources to send their children to therapy or special schools. Although there are public schools that give special education to people with autism, these are not enough.

For those needing or seeking therapies or other special education needs, these services must be available to all, and not be concentrated only in Metro Manila. However, financial resources are necessary to provide these services.

Autism is growing fast, needing more attention, especially to those who live in far-flung areas. I strongly urge for an affordable and readily-available educational and therapy services for those needing them.

If you are reading this article, register now for the upcoming 12th National Conference on Autism entitled “Living with Autism: Hope at Home” at Crowne Plaza Manila Galleria, Ortigas Avenue corner ADB Avenue, Quezon City. Click here for more information and tell others.

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About the author: JR Tan is 21 years old and a senior taking up BS Accountancy with minor in Biblical Studies at Messiah College Foundation. He dreams of becoming a Certified Public Accountant in the future. JR is passionate about autism rights and is one of ASP's first self-advocate members.

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Posted in: WAAD