Meeting the Goodleys – Breaking Barriers – The Borneo Post – 26 April, 2015

Meeting the Goodleys
April 26, 2015, Sunday Peter Tan

The author with Lawthom and Goodley.
The author with Lawthom and Goodley.

IT is not always that I get to meet a distinguished personality from the field of disability studies. So when Professor Dan Goodley asked if we could meet, my response was an enthusiastic “Yes!”

Goodley currently directs and teaches the MA in Psychology and Education at the University of Sheffield in the United Kingdom. We first got in touch in 2008. I was exploring plans to pursue disability studies and was told that he was proposing to introduce the course in Malaysia. Over the years, we communicated through emails occasionally. He has always been very generous in sharing information, answering my queries and providing valuable advice although we had never met in person before.

I was especially keen in meeting him as my notion of disability is shaped by principles established by disability rights organisations and activists in the UK. And what better way to learn than from someone whose research interest is in critical disability studies and is from the UK?

He was in the country again recently as a member of a four-person research team to share about the Big Society Project. This is a study on how people with learning disabilities in the UK are coping at a time when the government is implementing deep cuts in public spending.

As the team had a full programme during the weekdays running workshops, meeting government officials and stakeholders, and making presentations of their research findings, we arranged to meet on a Saturday morning at a hotel in Kuala Lumpur.

When my wife and I got into the lobby hotel, we were greeted warmly by Goodley. He then introduced us to his wife Professor Rebecca Lawthom and his two lovely daughters, Rosa and Ruby. Lawthom teaches Community Psychology at the Manchester Metropolitan University and is also a member of the research team.

Both Goodley and Lawthom are no strangers to this country, having been here on many occasions to share their expertise on disability with government agencies and disabled people’s organisations in Kuala Lumpur, Kuching, Kota Kinabalu and Penang. They were also directly involved in research cooperation with Universiti Malaysia Sarawak.

They presented me with a set of briefing cards which summarises the findings of the Big Society Project and a very useful guidebook giving advice for family members on the employment of adults with a learning disability. (More on the Big Society Project and the briefing cards can be found at

In one of our email exchanges before the meeting, Goodley had said that he was looking forward to talking about disability politics. I wondered if there is any difference between the UK and Malaysia since disabled people everywhere face similar struggles against discrimination and exclusion.

Hearing about the issues shared by Goodley and Lawthom was an eye-opener however. I wish the kind of support in terms of service and benefits available in the UK can be provided here. At the same time, unfortunately, the austerity measures implemented by the present UK government are particularly hard hitting on the well-being of disabled people whose benefits and financial assistance are being cut drastically.

We talked about the enormous influence the Japan International Cooperation Agency (Jica) has in leading Malaysia to become more inclusive. Jica’s three projects on disability that spanned over a period of 10 years have garnered tangible results in the empowerment of disabled people and created more employment opportunities for people with learning disabilities, among others.

We also discussed a host of other issues like Independent Living, the support for disabled people in various communities and the studies they have conducted. Lawthom shared an interesting account of how a group of young Icelandic disability activists mobilised themselves to run an Independent Living programme. One of them even managed to get 24-hour personal assistant support.As we talked further, I gave a run-down on disability issues we are facing here like the lack of access to buildings and public transportation.

After listening patiently, Goodley asked, “What is the way forward then?”

Without hesitation, I replied, “Listening to disabled people.”

I did not give the response much thought until a few days later. Thinking back, it was too cliched an answer. I must thank Goodley for asking me that question. He gave me food for thought which pointed me to the direction I should move on to next.

Yes, it is good if our voices are taken seriously, but they should be rights-based and in the spirit of inclusion. As such, I will be focussing more trainings at the grassroots level so that the common disabled people too can become effective agents of change themselves instead of relying on only a few to speak and decide on their behalf as is happening now.

I truly treasure the fact that Goodley and Lawthom took time off from their busy schedule to meet us. The one hour we spent chatting was as enlightening as it was interesting. Their easygoing disposition made the conversation such a pleasure.

Their insights are valuable in giving me a better understanding of diverse issues faced by disabled people in other countries. I am sure the stakeholders they met when they were here have similarly benefited from the findings they have so openly imparted.

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Weather of misery – Breaking Barriers – The Borneo Post – 19 April, 2015

Weather of misery
April 19, 2015, Sunday Peter Tan

One of the cats sound asleep with the air conditioner on.
One of the cats sound asleep with the air conditioner on.

HERE I am sitting in the living room, lethargic and restless, with the fan blowing at full blast. The cats are all sprawled out on the floor. They too are worn out by the punishing weather even though we just got out from the air-conditioned bedroom an hour ago. Thunder is rumbling in the distance. A slight breeze is blowing in through the gap of the partially-opened door. Even then, the humidity is thick and unpleasant.

It was exceptionally bad the past few weeks. I had to constantly splash water on my face, shoulders and arms to cool myself down. When the water evaporated, I repeated the process again. This I had to do every 20 minutes. Bathing would only provide temporary relief. And I did not fancy taking a shower every hour.

My body suffers from a dysfunctional thermoregulatory system. I have poor sensation and cannot feel hot or cold from my shoulders downwards due to my spinal cord injury. I have also lost the ability to perspire. Because of that I am prone to heat stroke when the mercury rises.

I suffer every time the weather turns hot and humid, which is quite often considering we are located smack in the tropics. You will never catch me out in the blistering sun no matter what the occasion. The heat will make me feel faint within a matter of minutes, and I will then need several hours to recover.

I also tend to drink more than I normally do during such times. One good thing is that the doctor has changed the medicine for my overactive bladder. The previous one caused my eyes, nose and mouth to go dry. When the temperature became too extreme, I could also experience blurred vision. The drying effects of the drug increased my urge to drink even more water and disrupted my daily routine as I had to empty my bladder frequently.

On the same note, I feel uncomfortable when it is too cold. My shivers are exaggerated to the extent my muscles would go into uncontrolled spasms if I am not kept warm. I remember shivering through an entire night when the temperature suddenly dropped and three layers of blankets were not enough. Therefore, I try to minimise my time in an air-conditioned room.

The current hot spell is making me very unproductive. Just like today, my mind was not lucid the entire afternoon. No work got done no matter how hard I tried. I sat before my laptop trying to get started but did practically nothing until I finally conceded defeat, retreated back into the bedroom, turned the air conditioner to 27 degrees Celsius and tried to sleep the day away.

Not wanting to be left out, the cats in their usual imperiousness, demanded to enjoy the cool comfort as well by meowing loudly and scratching the door until they were let in. They got their way as they usually do. Otherwise, I would not be able to get any shuteye. Cats, they own everything in the house including us humans.

The unforgiving weather is not only wearing me down physically. It is chipping away at my emotional and mental well-being. I get depressed and frustrated more easily. As I need to take extended rests, work is piling up and deadlines are looming. It is difficult not to feel hopeless and vulnerable thinking of the situation.

Despite the despondency, there is also optimism that this is only temporary. Seasons come and seasons go. The weather will change for the better. Work will get done one way or another. I have survived the same torment year after year. It should not be any different this year.

It is just that those few hours during the day when my body could not endure the heat and humidity, it felt like it was going to last forever. At times like this, I try to keep my spirits up by reminding myself to be grateful of the small mercies in life. Sometimes it works, most times not.

The rain that followed the thunder has washed away the heat and humidity. The cats have moved back to the bedroom to sleep. They have claimed their own personal spots there. I am not complaining though. Their antics are often welcome distractions. I envy them. They appear carefree. Hot or cold weather, they take it all in their stride.

My spirits are up again, for now. What began as a bad day is turning out to be just fine. It is nearing midnight. My day is going to end in a while. Whingeing about the weather may seem trivial but for my friends and I who have similar conditions, it is a suffering we can do without but cannot avoid. All we can hope for is that the next day will be more bearable.

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Faith manages – Breaking Barriers – The Borneo Post – 12 April, 2015

Faith manages
April 12, 2015, Sunday Peter Tan

The perpetual smile on Harmesh’s face belies the traumatic experiences he went through due to complications from spina bifida.
The perpetual smile on Harmesh’s face belies the traumatic experiences he went through due to complications from spina bifida.
“I WAS born in Teluk Intan. That night when I was just one hour old, my dad drove me all the way to Hospital Kuala Lumpur because there was an opening in my back. The doctors had to do a skin graft to close it back.”

That was to be the first of many surgeries Harmesh Singh, who is 37 now, had to endure. He was born with spina bidifa, a condition where the backbone does not develop properly and consequently damages the nervous system. He is totally paralysed from the waist down.

“When I was two years old, I underwent a second operation. Because the cerebrospinal fluid was being pushed up to my head, I had hydrocephalus (an abnormal accumulation of fluid around the brain). A shunt was inserted from the head through the neck and into my abdomen to drain the excess fluid.

“Next was my hip. Both sides were dislocated. The doctor actually used a hammer to knock them back into place.” All those corrective procedures were done before he turned five. There was a great possibility the complications could go from bad to worse the longer the treatments were delayed.

He wore a pair of calipers and used a wheelchair until he was 13. After that, he moved around with a pair of crutches.

Over the years, he was afflicted with other complications like urinary tract infections and meningitis but the one that caused the most problems was the shunt. A few months before he was to sit for the Sijil Pelajaran Malaysia, he went under the scalpel twice to have the shunts replaced because of blockage.

Harmesh and I attended the same training course earlier this year. We caught up with each other again recently for this interview. My deepest impression of him was the perpetual smile on his face. As we talked, it was difficult to imagine a man who had gone through so much trauma could still look so placid. His father is a paediatrician while his mother is a teacher. He is the eldest of three siblings. Throughout his childhood, the family moved around a lot as his father, a medical officer in government service then, was posted to various towns in the peninsula.

“My good fortune is that I was born into a family where my father happens to be a doctor. My condition actually helped him to decide his speciality. Once I was born, he knew that he wanted to go into paediatrics.” I asked if he was ever pampered by his parents because of his condition, Harmesh’s response was a firm “No”.

“They treated me no different from my bothers. If I fell down because I did not see the water puddle, I would be reprimanded all the same.” His parents made sure that he got an education despite the inaccessibility of the schools and education system.

“They would go up to the headmaster, tell him my situation and ask him what he was going to do about it.”

It was through his parent’s persistence and his own effort that Harmesh completed his secondary education and went on to study law. Upon graduation, he was faced with another set of problems. He applied for one job after another for one whole year without success. When he finally landed one as a legal executive with a major insurance company, he did not make it through the six-month probation period as the managers deemed his performance was not up to their expectations.

Not one to give up easily, he continued to submit resumes while helping out at his former college mates’ law firm.

He recounted an especially frustrating job interview for the position of legal executive with an airline.

“After asking all the relevant questions, they asked me if I need to use crutches.”

“I said, ‘Yes’.”

“They then asked if I could walk without crutches because the office is on the second floor and there are no lifts.

“Before I left, I told them to please read the resume properly next time. I had put there in bold and capitalised that I am a disabled person with spina bifida and I use crutches to walk.”

Needless to say, he did not get the job. Harmesh is currently working as an assistant case manager with the Social Security Organisation’s Return To Work Department. His responsibilities include finding jobs for the organisation’s members who are unemployed due to injuries acquired from accidents in the workplace or because of diseases. He has been with the organisation since November 2013, first starting off in a temporary clerical position.

He said his experience as a disabled person makes it easier to understand where his clients are coming from, the frustrations they go through, especially when they go for interviews with potential employers after their rehabilitation and recovery.

When I asked him about his view on disability and disabled people, this was what he had to say: “People need to realise that regardless of disability, whether the person is in a wheelchair or using crutches, he is still a person. So please treat us accordingly like how you want to be treated. That is all we are asking for.”

If there is anything that he does not like, it is to be labelled as an inspiration to others. He cringes every time he is told that.

“I am trying to live from one day to another. I am not a superhero. I have done everything. I have done all the crying. After all that, the spina bifida did not disappear. It is still here. There is nothing inspiring about me.

“The reason I am who I am today is because of my parents. Plain and simple,” he added. Before we parted, he shared with me his philosophy of life.

“There is a saying that my friends gave to me once: ‘Faith manages’.”

That, he told me, was a phrase from ‘Babylon 5’, one of his favourite space television series.

“Have faith in everything. Have faith in yourself. Have faith in God. Whenever I hit a roadblock, I tell myself somehow or other I will manage.” Seeing how far he has come, I cannot but believe, in time, faith will take him to even greater heights.

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