Kementerian Pembangunan Wanita Keluarga dan Masyarakat – Peter Tan

True survivors – Breaking Barriers – The Borneo Post – 18 January, 2015

True survivors
by Peter Tan. Posted on January 18, 2015, Sunday

THE next time you cross paths with disabled people and have the strongest urge to stare and think what a pitiful sight they are, stop and look at their faces. Behind those facades of normality are pain, struggles and uncertainty no one else can truly comprehend.

For every story of disabled people who have overcome great difficulties to make something out of their lives, there are many others who are still grappling to come to terms with their conditions and also others who are fighting hard to be included and accepted in society.

There are also others who simply gave up on life after they became physically impaired. They were unable to accept what they considered a cruel fate that life dealt them. In the time before I became actively involved in disability-related training, I provided peer support to a few of them. I regret not doing enough to convince them that life could still go on meaningfully in spite of the impairments and difficulties they had to live with.

Theirs are stories I seldom share not because they are unworthy tales but because the emotional turmoil within them were ugly and frightening. After our accidents, we all go through that same struggle of being extremely optimistic of walking again one day and totally giving up hope and wishing for a quick end another day.

The one case I remember most was of a young man who was barely in his 20s. The late Diana Khoo, a social worker with many years of experience in the field of community rehabilitation, had invited me to go with her to provide peer support to him. The son of her acquaintance, he had spinal cord injury from a motorcycle accident and had become paralysed from the waist down.

The journey took us one hour by road and another 20 minutes through unpaved tracks deep inside a village in the rural outskirts of Penang island. The single-storey house was on the fringe of a jungle and appeared to have been recently built.

An elderly woman next door let us in. She told us she was the young man’s grandmother. The interior was sparsely furnished. He was resting in his bedroom. We exchanged pleasantries but it was obvious from his abrupt responses our presence was not exactly welcomed.

His mother had sought Diana’s help because she saw that he was demotivated after his discharge from hospital. He had refused to listen to her, refused to go for treatments and therapies, and refused to do anything for himself. She was at her wits’ end to help him get back on his feet again.

“Your mother told us you are able to stand. Can you show us?” Diana asked, trying to get him to open up.
He was keen to show us what he could do. With the walking frame positioned beside his bed, he struggled a little and pulled himself into an upright position.

“You are in a better shape than me,” I told him. “You can stand like this. I cannot. Why not go for occupational therapy so you can become even more independent?”
He sat back down and ignored my suggestion.

Then we talked about how his mother was doing as much as she could despite the circumstances. She had to work and at the same time worried about him. That was when he unexpectedly exploded in a tirade of rage.

“You are not me. You will never understand. Have you ever been poor? I had this accident. I cannot walk. My father left us. The previous house we lived in got burnt down. I cannot do the things I want to do now.”

We listened in silence as he went on and on about how unfortunate he was and that it would have been better if he had died in the accident. There was so much anger in him that we found surprising. That emotion must have been festering inside him for some time already. In order not to antagonise him further, we made some small talk and took our leave.

I never went back to see him again after that. He rebuffed further efforts to reach out to him. When I asked Diana about him a couple of years later, she told me he had passed on due to complications related to his paralysis. He could not get over the fact that he had to live with paraplegia for the rest of his life and refused to take proper care of himself.

There is only so much family members and friends can do to help in situations like these. Ultimately, the person must want to move on in life in the face of surmounting challenges. Apart from dealing with the emotional roller coaster caused by the sudden loss of limb and other bodily functions, there are also misconceptions and prejudices of society to deal with, and not forgetting the obstacles in the built environment.

It is not easy to overcome these trials and tribulations but not impossible either. The disabled people you see out and about in public places have done it or could still be struggling with some of these issues. What is important is that they have not allowed their impairments to stop them from leading a meaningful life. They put in effort to break personal and societal barriers and never gave up hope. They still found satisfaction in living.

So when you see disabled people in the street, instead of gawking, try to picture the long journey of determination and courage they had taken to get to where they are now. They are fighters. They are the people who never surrendered. They are the true survivors of the toughest challenge life can dish out.

Comments can reach the writer via columnists@theborneopost.com.

Regional Asia Pacific TOST and TOT Disability Equality Training Workshop 2013

The Japan International Cooperation Agency (JICA) and the Department of Social Welfare Malaysia organised a 2-week workshop on Disability Equality Training from 8th to 19th January. This workshop, facilitated by Dr. Kenji Kuno, Senior Advisor on Social Security and Disability for JICA, was the 2nd Regional Asia Pacific Training of Senior Trainers (TOST) and 3rd Regional Asia Pacific Training of Trainers (TOT) to be held in Malaysia.

Twenty participants from twelve countries in the Asia Pacific region, including five from Malaysia, underwent training on the understanding of disability and facilitation skills. The countries represented were Vietnam, Laos, Myanmar, Cambodia, Timor Leste, Pakistan, Sri Lanka, China, Philippines, Samoa and Japan. The TOST ran concurrently with two participants from Malaysia who also doubled up as co-facilitators of the workshop. They were Nurul Huda Zainal from the Department of Social Welfare Malaysia and Fariz Abdul Rani from JB Prosthetic and Rehab Supply in Sabah.

Although I was the co-facilitator supporting the learning of senior trainers and trainers, I learnt a lot from the participants and Dr. Kuno as well. The most empowering moment in the entire workshop was seeing the participants rewriting their life according to the Social Model of Disability. They were struck with the realisation that their impairments were not the cause of them being disabled. Rather, the hardships that they faced and marginalisation from society stemmed from attitudinal and environmental barriers.

It was a privilege to be part of the transformation of the participants into DET trainers. Their perspective of disability and themselves as disabled persons will never be the same again. Disability is more than what we see in a wheelchair user or a blind person. It is an issue that involves so many aspects of society and requires the involvement of all levels to resolve. All of them now have the knowledge and skills that they can put into practice to make their own respective societies more inclusive.

To date, the Project to Support Participation of Persons with Disabilities by JICA, which DET is part of, has produced 153 trainers from 18 countries across the Asia Pacific, Africa and Latin America. Even with so few trainers spread across several continents, attitudes towards disabled people have changed. The public and private sectors in these countries have engaged DET trainers to conduct workshops in their organisations to better understand disability issues and work together to resolve them.

Training of Trainer on Disability Equality Training in Malaysia

Group photo after the conclusion of the 3rd Regional Asia Pacific Training of Trainers on Disability Equality Training 2013. Seated between the participants (L-R): Cik Nor Tipah Majin, Senior Principal Assistant Director of Persons with Disabilities Development Department, Dato’ Norani bt Hj Mohd Hashim, Director General of Department of Social Welfare Malaysia and Mr. Kunihiko Sato, Chief Representative of JICA Malaysia.

Training of Senior Trainers on Disability Equality training in Malaysia

2nd Regional Asia Pacific Training of Senior Trainers on Disability Equality Training 2013.
Standing (L-R): Dr. Kenji Kuno (Facilitator) and Nurul Huda Zainal.
Seated: Fariz Abdul Rani and Peter Tan (Co-Facilitator).

International Day of Persons with Disabilities 2012

The United Nations declared December 3 every year as the International Day of Persons with Disabilities. I would prefer to call it the International Day of Disabled Persons but that is another story for another day. Approximately 1 billion people or 15% of the world’s population live with some form of disability. The theme for 2012, “Removing barriers to create an inclusive and accessible society for all” is very apt as many disability-rights advocates have been demanding for the removal of barriers for a long time to enable equal participation of disabled people.

These barriers are not limited only to the built environment but are prevalent in attitudes in the form of prejudice, ignorance and discrimination. I am not proud to say that Malaysia is still a nation where disabled people are marginalised, discriminated against and face countless barriers every day of our lives. Even with legislation, the quality of life of disabled persons have not improved much in contrast to the rest of the population.

The requirements of the Uniform Building By-Law 34A that buildings must be accessible to disabled persons are ignored by the local authorities most of the time. More than fifteen years after it was gazetted by the various state governments, many buildings, including new buildings, are still full of barriers. And as far as I am concerned, the Persons with Disabilities Act 2008 also have not done much to alleviate the situation.

Public transport and the built environment continue to remain inaccessible. These in turn make it difficult for disabled people to gain access to education, employment, medical care and participate in politics and religion. Ours is a government that is reactive. They need to be kicked to get rolling. Otherwise, the rights of disabled people are often ignored and forgotten.

Legislations are only effective when enforced. Sad to say, officials from the ministerial down to the municipal levels entrusted with implementation and enforcement have miserably failed in their duties. Legitimate grouses were swept under the carpet and complaints were ignored. These governments in different manifestations are the biggest stumbling blocks to making society accessible and inclusive as they have the all resources at their disposal to make it happen. Yet they do not bother.

At the same time, NGOs, activists and advocates have to pull their act together. We are weak because we are not united. We do not speak in one voice. We abuse our positions as leaders of the disability movement in Malaysia by squabbling over personal issues. We sacrifice the needs of the many to benefit the personal agendas of the few. We sabotage others’ efforts. We still practice charity-based activities when we should be advocating for our rights. We spend so much resources, time and effort in fighting each other that we have lost sight of the big picture. I strongly believe that much could have been achieved had we worked as one unit. It is still not too late though.

On the whole, Malaysia cannot claim we have arrived as a nation if the rights of minorities and marginalised are not respected. The theme for this year’s International Day of Persons with Disabilities is a timely call for everyone to work together to make society inclusive. The governments have to play their part. Society in general has to play its part. Most importantly, disabled people must come together to speak in unison on issues that affect us as a community. Removing barriers is not that difficult if we each understand our roles. An inclusive and accessible society benefits everyone. Lets make an effort to work towards that.