Demystifying Disability – Breaking Barriers – The Borneo Post – 15 February, 2015

Demystifying disability
by Peter Tan. Posted on February 15, 2015, Sunday

Participants with their certificates at the conclusion of the course.
Participants with their certificates at the conclusion of the course.

WHAT are the causes of disability?

This is a question that even disabled people will give contradicting answers to.
It was the same question 17 participants from six countries including Malaysia, repeatedly pondered over at a two-week Disability Equality Training (DET) course held in Kuala Lumpur recently.

The course also saw four trainers returning for their senior trainer’s certification, and another four persons, including myself, undergoing our final assignment to become trainer of TOT (Training of Trainers). Essentially, it was three intensive courses running simultaneously.

Most of the participants found it tough going as it stretched their beliefs and analytical capacities to the hilt. By the end of each day, they were mentally and physically drained.

They discovered that their ideas about disability were profoundly different from what was being presented. It was a confusing time for them as they dissected the new paradigm, trying to make sense of the paradox of what they have accepted all their lives with what they had just learnt.

The participants also took up leadership roles as facilitators during group exercises, and picked up presentation and delivery skills that are necessary for conducting workshops more effectively.

It was not easy for the trainers too as the participants’ learning was our responsibility. If they did not gain sufficient knowledge and skills at the end of the course, it would be our failure.

Despite the strenuous demands placed upon them, the transformation of the participants as the course progressed was noticeable. Those who were quiet in the beginning became more confident in sharing their opinions.

Confidence is a crucial attribute for trainers. Those who speak without conviction will very quickly lose the attention of their audience. Even more important is the understanding of disability and the ability to make participants of DET workshops discover the causes of disability and take proactive actions to remove them.
That was why the course was structured to give each and every participant ample opportunities to build their confidence and seriously reflect on the relationship between the difficulties they face in society and themselves.

“I gained a lot of knowledge and I feel that I have grown as a person,” Siriporn Praserdchat shared about how she had benefited from the course. She is the logistics officer at the Asia-Pacific Development Center on Disability based in Bangkok.

Kiran Shilpakar, president of the National Association of Physically Disabled-Nepal, was in Malaysia in 2010 to attend DET. He was here again to become a senior trainer. He said, “This senior trainer course enhanced my understanding of the Social Model of Disability, which will greatly help me in my future workshops.”

Fellow trainer of TOT Fariz Abdul Rani from Sabah and I have been working together on DET since 2013. We frequently discuss how we could make the workshops we conduct more effective.

When I asked for his thoughts about the course, this was what he had to say: “I am glad that finally the four of us are officially trainer of TOT. It was not easy to go through what we went through to reach this level. We are currently the only four trainers who can conduct such courses.

“I am excitedly waiting for the DET Forum webpage to be set up so that all the trainers from various parts of the world can share, discuss and support each other.”

The DET Forum is registered as a non-profit organisation in Japan. Membership is also open to DET trainers from other countries. The website is developed and managed by participants of DET TOT to exchange resources, information and experience about DET in their respective countries.

Our journey to become trainer of TOT took two years. The first year was spent preparing to conduct the course through a series of online sessions with Dr Kenji Kuno. He is the senior advisor on Social Welfare with the Japan International Cooperation Agency (Jica) headquarters in Tokyo. He developed the training modules that we are using now.

Personally, this course has empowered me in more ways than I can count. As I observed the participants struggling to take in more information than their minds could possibly absorb, I am reminded of the time when I first joined the course a decade ago.

I had zero knowledge about disability and no inkling of what I could do to make the world more conducive and less prejudiced against disabled people. DET opened my mind to the possibilities. Ten years on, I have made it a lifelong mission to use the skills and knowledge I gained from DET to break barriers and make society more inclusive. If there is one course that disabled people want to take to empower themselves, I unreservedly recommend TOT of DET course. Incidentally, the just concluded course was the last under the Department of Social Welfare and Jica Project.

The good news is that from next year, the Welfare Department will continue to support the project. At the same time, we will still be working very closely with Dr Kuno to further develop the training modules and continue to promote DET to the Asia Pacific, Latin America, Africa and beyond.

To date, 247 participants from 34 countries have become DET trainers through courses organised in collaboration with Jica since 2005. The numbers will expand further as Dr Kuno together with senior trainers and trainers of TOT will continue to conduct more training courses.

So, back to the question: What are the causes of disability?

Barriers in the environment and the lack of support services restrict disabled people from realising full participation in society. That in turn causes disability. If the surroundings are built without barriers and support services are provided in the name of equality then disability becomes non-existent. At the end of the course, the participants were unanimous that disability is man-made.

People are unnecessarily inconvenienced by how society is designed. Like the other DET trainers before them, these newly-minted trainers have taken up the challenge to make society inclusive with the skills they acquired from the course. And I wish them all the best in that endeavour.

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Disabled people in need of a better peer support system – Breaking Barriers – The Borneo Post – 25 January, 2015

Disabled people in need of a better peer support system
by Peter Tan. Posted on January 25, 2015, Sunday


As disabled people, we have a lot to contend with in the course of trying to make something out of our lives. We have to deal with our own impairments and at the same time struggle to make sense of a world that has largely disregarded us as equals.

On a personal level, it is not unusual for us to experience low self-esteem, lack of self-worth and a sense of hopelessness. We feel that our impairments make us lesser persons. Because of that, we accept our exclusion from society as the norm. We blame ourselves for all the problems we face.

“I cannot go out because I am using a wheelchair” is our common grouse when asked why we stay at home most of the time.

On a societal level, misconceptions and prejudices are aplenty. We are also seen as lesser persons, our impairments the result of karma, divine retribution on our parents or of our own doing. The sight of us somehow evokes pity and charity.

Our sense of hopelessness is further reinforced when we are constantly told that the problems we face are caused by our impairments. In order to be accepted as a part of society, we are expected to strive to be “normal” and “abled-bodied” to conform to mainstream standards.

These notions perpetuate fallacious views that are accepted by both disabled- and non-disabled people as the gospel truth. Non-disabled people want to fix our impairments so we can be “whole”. Disabled people want to be fixed so we can fit into mainstream society.

If we cannot achieve the normality desired by society, we are told that we are lazy and did not try hard enough. A fellow participant from a positive thinking workshop that I attended once told me straight to the face that I could not walk because I did not have a strong determination. If only it was that easy.

It is a vicious cycle but one that can be broken if it can be explained logically that people are disabled more by attitudinal, environmental and institutional barriers rather than by their impairments. In this aspect, there is a need for a better peer support system to edify disabled people.

Peer means person of equal standing with other members in a community or organisation who has relevant life experience and can support other members in similar situations. Disabled people who have undergone training to provide peer support are known as peer counsellors.

Peer support can be done as a group activity or one-to-one. In countries where the independent living movement of disabled people are active, peer counsellors take leadership roles in peer support groups as facilitators in independent living skills training, information sharing, and providing emotional and moral support. These are achieved through discussion, sharing of experiences and role-playing.

In one-to-one peer counselling, the sessions are highly personalised. During these sessions, counsellors help their peers recover from past hurt, discover potentials and gain confidence to make decisions to change for the better. They are role models to show that disabled people have the capabilities to lead a better quality of life.

Nevertheless, this building of self-confidence and establishing self-worth is an arduous process. The negative perceptions that were drummed into our minds are deep-rooted and difficult to shake off. It takes time and many sessions of counselling. Some disabled people take years to achieve this goal.

In providing peer support, there are guidelines that should be adhered to. They include being non-judgemental and not imposing specific values on others. Peer counsellors also must acquire skills to create a conducive atmosphere for discussions, maintain confidentiality, respect differing opinions, listen attentively and ask appropriate questions.

Most importantly, the understanding of disability rights and possessing a Social Model of Disability perspective is compulsory. Otherwise, how can peer counsellors help other disabled people break away from the cycle of self-blame and resist the urge to conform to the unfair demands of society?

(The Social Model of Disability says that people are inconvenienced by how society is structured. It promotes the removal of barriers to enable disabled people live independently and as equals in society.)

In Malaysia, peer support is carried out on an ad hoc basis at personal expenses and time. This is not an issue as it is a voluntary service willingly provided by individuals in the spirit of camaraderie. However, it must be noted that most peers providing support are not trained. It is learnt through trial and error.

An organised peer support system is crucial to the empowerment of disabled people. Empowered disabled people in turn can debunk society’s prejudices and misconceptions with logical arguments, and that what needs fixing are attitudes, environment and discriminatory policies.

It would be better that peers go through basic training at the very least on the techniques of proper peer support in order for them to lead the people they are helping in the right direction and give them the right orientation on disability issues.

There are local resource persons who can conduct peer counselling workshops. If need be, there are experienced and practicing peer counsellors from around the Asia Pacific who will be more than happy to come and train us. This is a matter worth considering since it involves the improvement in the social and emotional wellbeing of disabled people.

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

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

These are the fighters. — Photo by Wuan
These are the fighters. — Photo by Wuan

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.

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