On hudud and disability – Breaking Barriers – The Borneo Post – 3 May, 2014

On hudud and disability
by Peter Tan. Posted on May 3, 2014, Saturday

SINCE the announcement by the Kelantan government on its intention to implement hudud in the state, it has been one slugfest after another between politicians from both sides of the divide either supporting or rebuffing the law.

In spite of all the exchanges in the mass media, there is practically no information on the mechanisms and technicalities on the implementation of the Islamic penal law in a language that the man in the street can understand for Muslims and non-Muslims alike.

Repeated assurances that non-Muslims will not be affected may not be wholly accurate. My concern in this matter is purely from the perspective of disability and the implications to the psychosocial aspects resulting from amputations should the law come into force.

Amputation is a permanent, lifelong condition. The Persons with Disabilities Act 2008 defines persons with disabilities as to “include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society”.

The registration guidelines issued by the Welfare Department recognises that the loss of a limb resulting in the person being unable to perform basic activities is a condition accepted under the physical disability category.

Persons becoming impaired under this circumstance should, in principle, enjoy the rights, entitlements and benefits as promulgated in the Act and welfare policies. There should not be discrimination on how the impairments were acquired. After all, the dues for the crimes committed were already fully paid in the eyes of the law.

New amputees require a host of support from medical treatments to psychological and physical rehabilitation. Further down the road, a prosthetic hand or foot would be essential in improving their functionality and independence to effectively pave their return to mainstream society.

There is a price to all these therapies and assistive devices. A rehabilitation equipment supplier I spoke to indicated that the cost of a prosthetic hand is between RM3,500 and RM4,500 depending on the complexities of the mechanical functions required.

As yet, there has been no mention on the source of funding for post-amputation outlay for such cases. In the current state of affairs, resources and facilities for persons with disabilities in Malaysia are severely wanting due to the low priority accorded by the government and even the private sector in resolving outstanding problems.

Unless there is a radical revamp of the support system to upgrade services and resource distribution, the increase in number of amputees could put an extra strain on the system. With the limited resources spread even thinner, the larger community of people with disability issues requiring support will be further affected, irrespective of their faith and ethnicity.

Prejudices, misconceptions and myths about disability are still widespread. Among others, some communities believe that being disabled is a form of punishment for purported sins committed past or present.

There was an incident in Parliament some years back. During a heated debate, Datuk Badruddin Amiruldin told the late Karpal Singh that he is sitting in a wheelchair because it was a punishment from God. Badruddin later apologised for that offensive remark after an uproar from the disabled community. The apology notwithstanding, it was a clear reflection of how some segments of society view disability.

The truth is that living is full of risks. Some impairments are congenital in nature. Others are acquired through diseases, accidents or old age. That is life. Punitive limb amputations will undeniably reinforce the mistaken belief that being disabled is a punishment regardless whether one was convicted or is law-abiding citizen. Disability rights advocates then will have to work doubly hard in debunking these prejudices.

Further to that, people losing limbs in incidents unrelated to crime will be unwittingly stigmatised as criminals as well. Humans being humans, there is a tendency to tar all with similar impairments with the same broad stroke.

Employment opportunities for persons with disabilities are hard to come by due to negative perceptions and environmental barriers as it is. Amputees will find it even more difficult to be gainfully employed because of the stigma although they may be God-fearing people who have not broken any law.

Nevertheless, it is also important to ensure that people having served their punishments are able to make an honest living so that they do not return to a life of crime. Seeing how hard it has been for persons with disabilities to find work presently, there is a need for more effective policies and incentives to encourage potential employers to accept them.

Prime Minister Datuk Seri Najib Tun Razak was correct in stating that there are many issues that need to be solved before hudud can be implemented.

People are scared of what they do not know. The dearth of official information has given rise to misunderstandings and speculation as to how it will be carried out. The parties pushing for its implementation should be more forthcoming with the details and convincingly address the issues arising to allay those fears.

Having said all that, I personally would not wish impairment on anyone. It is a life full of needless challenges only those who are living it will understand.

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

Read more: http://www.theborneopost.com/2014/05/03/on-hudud-and-disability/#ixzz361NDxl7e

The day I fell – Breaking Barriers – The Borneo Post – 26 April, 2014

The day I fell
by Peter Tan. Posted on April 26, 2014, Saturday

I FELL while transferring from a plastic chair to my wheelchair in the bathroom several days ago. A lapse in concentration saw me missing the seat of the wheelchair by a few inches. I pondered over my predicament as I half-sat and half-leaned on the wet floor. Being paralysed from the chest down, I have very little trunk control to enable me to sit up unassisted, and insufficient strength in my upper limbs to pull myself back onto the wheelchair without help.

The one thing I carry religiously with me when I am home alone is the mobile phone for unexpected moments like this. I called my wife Wuan in the office. There was no reply. It was lunch time. With nothing more that I could do except to wait for her to call back, I took a photo of the wheelchair from my position on the floor and uploaded it unto Facebook.

For someone who has been using a wheelchair for the past 29 years, there is a very high possibility that I already have osteoporosis of the lower extremities. This loss of bone mineral density is caused by a lack of weight loading on the bones, a common occurrence for people with paraplegia and tetraplegia. There is always a risk of breaking a bone when I fall.

As the minutes ticked by, my buttocks began to ache. The bony protuberances of my posterior were pressing against the unyielding hardness of the floor tiles. My legs, crossed at the knee, were getting numb. So were my shoulders, tired from propping up my body.

When Wuan finally called back, I told her as calmly as I could that I was sitting on the floor instead of falling off the chair. Telling her how it happened would not have changed the situation anyway. On her side, I could sense an alarm in her voice although she tried to sound composed as well.

“I will come back immediately,” she said and hung up.

It was raining heavily outside. The trains were slower than usual. On normal days, it takes her one hour to reach home. I wondered how long it would take in that inclement weather.

My main concern was whether the pain on my buttocks and ankles would result in pressure sores. That is a perennial problem that people with mobility impairments have to face all the time. These sores can develop from something as innocuous as sitting without a proper cushion. I did not fancy going through the pain and discomfort of suffering from one, having experienced a rather stubborn sore on the tailbone that took nearly one year and thousands of ringgit in medication to heal.

While waiting for Wuan to come back and rescue me, friends were posting messages on Facebook asking if I was all right and if I needed help. Answering their questions kept me occupied and entertained at the same time, especially the humorous messages. It is heartwarming to know that there are acquaintances, some I have never met in real life before, who could be so concerned with my well-being.

As I waited and continued to ponder over the situation I was in, I was overcome by a sense of vulnerability and helplessness. While I have always strived to be independent in my activities of daily living, I have accepted that there are tasks that are beyond my capabilities.

However, being down and out like that was a scary notion. I have come to realise how crucial the wheelchair has been to my mobility and independence. Without it, I was literally a sitting duck, unable to do anything to save myself even in the face of impending danger.

In the midst of all those thoughts swirling in my mind, came the sounds of the door being unlocked and opened. Wuan finally got home, and in record time too, despite the pouring rain.

“Are you all right?” That was the first thing she asked when she stepped into the bathroom.

I assured her that I was unhurt.

She spent the next five minutes helping me. I transferred from a lower stool to a higher one and finally back to the wheelchair. There were some minor wounds on my buttocks, most probably sustained when I repeatedly dragged myself on the floor to get into a more comfortable and upright position. Thankfully, I did not suffer any broken bone.

Falling is a risk I have to contend with each time I transfer. This was not the first time I had fallen and I am sure it will not be my last. I have fallen going up steep ramps. I fell when the front wheel of my wheelchair got caught in the crevice on the sidewalk. Some incidences could have been avoided while others not.

This is one of the many trials and tribulations that I am confronted with day in, day out, and something that I take in my stride. After all, everybody falls every now and then. The only difference is that I need a little more help in getting back up. With a loving wife and caring friends, the experience becomes less traumatic as was proven that day.

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

Read more: http://www.theborneopost.com/2014/04/26/the-day-i-fell/#ixzz361MOunpf

A rising star in disability rights movement – Breaking Barriers – The Borneo Post – 19 April, 2014

A rising star in disability rights movement
by Peter Tan. Posted on April 19, 2014, Saturday

Lidwina and her parents
Lidwina and her parents

AT the tender age of twenty, Lidwina Isidore Andilah from Tuaran, Sabah, is already a seasoned advocate on disability rights. She has travelled to Bangkok, Jakarta, Nairobi and Bali representing Young Voices Malaysia, of which she is currently the chairperson, for regional and global meetings.

Young Voices is a movement of over 1,200 young disabled people from 21 countries campaigning for the rights of disabled people worldwide. This movement is supported by Leonard Cheshire Disability, an organisation based in the United Kingdom with more than 65 years history in supporting disabled people.

“In 1999 when I was five years old, I slipped and fell while playing at my aunt’s house, which was just next door,” Lidwina recounted. “I ran back home and told my mother that my stomach really hurt and I had problem urinating.”

Her parents took her to the hospital immediately, but her condition turned for the worse when she began to vomit persistently.

“The doctor asked me to stand up by holding on to the stretcher. I tried, but immediately fell. I could not feel my legs. There was no sensation at all. From that moment on, the hospital became my second home.”

She was put through a series of diagnostic procedures as the doctor attempted to find out the cause of the paralysis. In the end, the diagnosis was transverse myelitis, which is a neurological condition caused by inflammation of the spinal cord.

“The doctors told me and my family that I was going to be paralysed for the rest of my life. It did not sink in to me then, maybe because I was too young at that time to understand the meaning of paralysis and the challenges that I was going to face.”

Her schooling years were fraught with difficulties made easier by kindness of the people around her.

“I had to be carried to school wearing my ankle-foot orthosis. The students gawked at me. Some said that I was using robot shoes. Although those words did not make me feel sad, they made me feel awkward.

“For three years during primary school, my classroom was located on the first floor. My parents had to carry me up every morning. My classmates will then carry me down after school. The music class was on the third floor. I did not mind if I could not join in because I did not want to trouble my classmates, but they were willing to carry me all the way up too.”

The same thing happened during her secondary school years. The music class was on the first floor and her classmates were ever willing to help her get to the classroom. This went on for three years.

“There were some places in the school that were inaccessible, but ramps were eventually put up to make it easier for me. Although the school was still not completely accessible, they made me feel appreciated at the very least.”

The one major problem that Lidwina faced throughout her years in school was that she could not get into the toilet in her wheelchair.

“I sometimes skipped my catheterisation or just did it once or twice a day. Because of that, I suffered bladder stone that required surgery to remove.”

(People with severe spinal cord disorder usually lose function of the bladder and bowel apart from the limbs. The bladder needs to be completely emptied with a catheter every few hourly to prevent urinary tract infection, reflux of urine back to the kidneys, and stones from forming in the bladder or kidneys.)

As fate would have it, she came down with a bout of urinary tract infection just one day before she was to sit for the SPM. She was determined to take the exam in the hospital even though she was unwell.

“I was so weak at that time. I tried my best. I thought I was going to fail in all the subjects. Thank God my results turned out to be quite good, but I did not pass my mathematics paper because I was overcome by high fever on that particular day.”

After that, Lidwina enrolled in a pre-university course, which she completed last year. She is now waiting for responses to her applications to further her studies at the tertiary level.

“I want to be a psychologist, but I also want to be an interpreter. I want to dabble in music too. I have lots of ambitions to achieve but my priority is to work on disability issues. Since I joined Young Voices and got involved with advocacy activities, I have decided I want to work with disabled people and issues related to disability.”

To Lidwina, her family is her pillar of strength. “They are the reason I never gave up on myself and my studies no matter how many times I felt like quitting. I would not be where I am today without them. They have sacrificed a lot and fought society’s negative perception towards me. I could not have asked for a more supportive family.”

She also credits her former classmates for helping her “survive” the schooling years. They provided her with opportunities and trust in taking up leadership roles, and did not see her as a burden when they had to carry her up and down to classes. As for Young Voices, the members gave her new perspectives in looking at disability and unreservedly shared with her about the intricacies of advocacy and campaigning. And she is now leading them to even greater heights.

On her philosophy in life, this is what she has to share: “I used to remind myself that if I want to achieve something in life, I have to do something that I have never done before. I believe that in order for me to achieve my goals in my life, I have to go through gale and storms. If there is a moment where I fail, I will keep trying because at the end of the day, I trust that all my hard work will pay off.”

With her steely resolve, there is without a doubt that Lidwina can accomplish whatever goal that she sets her sights on.

The road to advocating for disability rights may be long but age is on her side. Hers, and especially herself, is the new generation that will bring greater changes to make society more inclusive than ever, not only in Malaysia, but the world over.

Comments can reach the writer via columnist@theborneopost.com

Read more: http://www.theborneopost.com/2014/04/19/nationa-rising-star-in-disability-rights-movement/#ixzz361KFBiy2