Budget 2015 a big let-down to disabled people – Breaking Barriers – The Borneo Post – 18 October, 2014

Budget 2015 a big let-down to disabled people
by Peter Tan. Posted on October 18, 2014, Saturday

BUDGET 2015 is a disappointment where allocations for the betterment of disabled people are concerned.

The monthly allowance for employed disabled people will go up to RM350 from RM300. Unemployed disabled people will see the assistance increase from RM150 to RM200.

Only those earning a salary of less than RM1,200 are entitled to the allowance. Eligibility is based on the fulfilment of set criteria and evaluation by welfare officers. Likewise, the unemployed assistance is given out on a case-by-case basis.

A total of 110,000 disabled people out of the around 500,000 who are registered with the Welfare Department will benefit from the RM66 million allocated for this scheme.

In a nutshell, the RM50 increment is a small gain for the recipients. But looking at the big picture, we have gotten nothing as a community. The problems that we have to contend with every day remain unresolved.

The irony of these two financial aid schemes is that disabled people who are unemployed are getting less than those who are employed. Logic dictates that people who have no income will need more financial assistance but this is not the case with the current scheme.

How can anyone survive on RM200 a month? Without any other source of income, they will have to depend on the family or even resort to begging for subsistence. There is an urgent need to review the quantum of assistance rendered to reflect the reality of the situation.

The Prime Minister also announced the increase of tax relief for each disabled child from RM5,000 to RM6,000. The tax relief for the purchase of basic supporting equipment for taxpayer, spouse, children and parents who are disabled has been raised from RM5,000 to RM6,000.

For those of us who earn just a little above the threshold that disqualifies us from receiving the working allowance, the increased tax relief is meaningless as we will not be able to enjoy the deduction.

I was hoping against hope that the Prime Minister would make meaningful allocations to improve the lives of disabled people when I penned my Budget 2015 wish list in August. Unfortunately, nothing was apportioned to make the built environment, public transport system and mainstream education accessible.

The problems we faced last year and the years prior to that are still there. Is it because there is no political will to make society accessible and inclusive or is the Prime Minister ill-advised on matters regarding disability?

What is most perplexing is the increase in the annual grant for the National Council for Persons with Disabilities from RM500,000 to RM1 million in the Budget.

The Council was established under the Persons with Disabilities Act in August 2008 and tasked with 14 functions. Its responsibilities include overseeing, coordinating, monitoring and reviewing the implementation of the national policy and national plan of action related to disabled people.

Truth be told, six years after it was set up, I have absolutely no idea what the council has done for the development of disabled people in the country. I still have to struggle with the same problems of inaccessibility, an issue that has plagued disabled people for the longest time. How long more do we have to wait to see any significant change?

One of the issues that I felt the council had glaringly failed to address was the issuance of parking stickers. This responsibility was entrusted to the Road Transport Department (JPJ). The imposition of overly-stringent conditions made it tedious for applicants.

To add insult to injury, the stickers are only issued to vehicles with disabled drivers and not disabled passengers. This is effectively saying that the latter are not entitled to use accessible parking spaces. This is discriminatory.
There should not be a segregation of facilities in the spirit of justice and equality. To date, the council and JPJ have not made any concerted effort to reverse this ruling.

Therefore, I want to know the justification for the twofold increase in allocation. What does the council, which is mandated to meet at least three times a year, need so much money for since it has done a poor job in sorting out simple issues faced by disabled people?

To be fair, the government has made available a host of benefits for disabled people registered with the Welfare Department. Medical treatment is free of charge at all government hospitals. There are various types of financial aid business grants, assistive devices aid and educational allowances for students.

The list of these benefits can be obtained from the Welfare Department website. For the record, my disabled peers and I are grateful for the support. It has helped us tremendously.

Nevertheless, the fundamental issues of accessibility in the built environment and public transport system must be thoroughly dealt with in a comprehensive and holistic manner. This is the core of the problem that is preventing us from realising full participation.

The barriers prevent us from going to school and getting an education. Without academic qualifications, we have difficulty finding work. Without work, we have to depend on charity. Even if we can get work, we still have to deal with the formidable barriers. This is the story of our lives.

I am disappointed with the budget. I hope the Prime Minister will take us more seriously in the budgets that follow. The problems that trouble us cannot be solved by just giving us a token sum. He should give ear to alternative voices from the grassroots. Only then can he get a clearer picture and understand what needs to be done.

Read more: http://www.theborneopost.com/2014/10/18/budget-2015-a-big-let-down-to-disabled-people/#ixzz3LCKS36Pf

I’ve survived 30 years! – Breaking Barriers – The Borneo Post – 11 October, 2014

I’ve survived 30 years!
by Peter Tan. Posted on October 11, 2014, Saturday

COME Wednesday (Oct 15), I would have lived with tetraplegia for 30 years. It has been so long that I can hardly remember how it felt to stand up and walk under my own strength. I can imagine but that does not even come close to the sensation of actually doing it.

Memories, how they decay like old photographs, gradually losing their brilliance and fading into pale shades of sepia. Whatever is left, time has diluted and eaten away, leaving gaps that can never be filled. In that sense, my recollections of the past are now devoid of the experience of walking and everything else the spinal cord injury took away from me.

In all honesty, I cannot remember the last time I buttoned my own shirt effortlessly or snapped my fingers to the rhythm of a catchy tune. Somewhere along the way, the physical and physiological limitations got assimilated to become a part of me. It is as if I have been like this all my life.

I no longer mourn the loss of the ability to use my limbs and the extra effort required to complete most routine tasks. I have stopped comparing myself with other people. This is who I am now. I have managed to adapt and appreciate the little I have left. Life becomes simpler this way. There are less anguish and disappointment.

The dreams I have, uncannily tell of how much I have embraced the reality of the situation at subconscious levels. Long after becoming paralysed, I could still walk and run with gusto in my dreams but not of late. Short of appearing in a wheelchair, I am as physically paralysed in my dreams as I am in real life.

The same acceptance cannot be said of my friends who have hopes of me walking again one day. They regularly share news and videos of the latest advancements in medical treatments and assistive devices they come across. I know they mean well and I appreciate their concern. However, I want to impress upon them that walking is not the priority in my life.

Walking for people with spinal cord injury is not as simple as wearing a bionic exoskeleton or undergoing stem cell therapy and voila! Both cost a tremendous amount of money that I can ill afford and a commitment to go through the rigours of hard physical training that my body neither has strength nor stamina to endure. And there is no guarantee I will be better off than I am now, so there!

It is not that I have given up. I made a choice to move on to do the things I can do better.

The mindset that walking, among others, can solve the problems faced by disabled people must be changed. What happens to the people with impairments that cannot be cured? Do we leave them behind, or what? In reality, the underlying causes of disablement that need fixing are systemic barriers that have been mentioned countless times in this column previously.
But I have digressed.

The 30th anniversary of the greatest tragedy in my life is approaching. After all these years, there are not many things that can scare me any more. I thought I could not survive beyond a certain time based on statistics and the lifespan of peers who passed on before me. The years have come and gone. I am still around.

A routine medical review on Wednesday showed that the function of my kidneys have declined to 18 per cent of normal capacity. Dialysis is a certainty in the near future. I am bracing myself for that day. Could it be the eventual end of me? I try not to think of it too much. There is nothing much I can do to reverse the situation anyway.

It has been an eventful journey of many ups and even more downs. The first few years were difficult. The last few years have been wonderful. I have had a good run. I hope there might be many more. I am doing things that I have never envisioned doing. My life is as fulfilled as it possibly can be.

If there is anything I have learnt after all these years, it is to never give up. Bad times, and good times, do not last. Good things come to those who wait and persevere. I have hung in there for three decades. If I am allowed to blow my own trumpet, I would proudly proclaim that I have made it. The struggle was worth the effort no matter how difficult and uncertain it was.

What more can I ask for? More time for me to spend with my wife Wuan, who has been my pillar of strength and the staunchest supporter of the things I do. Another 30 years maybe? Who knows? Nothing is certain. Nothing is cast in stone. I leave all in God’s hands.

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

Read more: http://www.theborneopost.com/2014/10/11/ive-survived-30-years/#ixzz3LCJGKVcY

A talk to remember – Breaking Barriers – The Borneo Post – 4 October, 2014

A talk to remember
by Peter Tan. Posted on October 4, 2014, Saturday

IN all the years that I have been a trainer, I have never had to give a talk about myself as a disabled person. Sure, I have written about my life countless times in my blog and in this column but never before a live audience, and certainly never before an audience of medical students.

So there I was with my wife, whizzing through the maze of corridors leading to the lecture hall at the University Malaya Medical Centre, anxiously hoping that I was not late. I had spent quite a bit of time looking for an accessible car park as those nearer to the elevators were all taken up.

Associate Professor Dr Nazirah Hasnan, who is the head of the Department of Medical Rehabilitation, had invited me to give the short talk as part of her lecture when I was at the hospital for my routine check-up and then a meeting with her to organise a Disability Equality Training workshop for the staff in her department.

I first consulted her in 2006 when a friend introduced her. I needed a medical report to certify my fitness to drive a car. The report was a prerequisite by the Road Transport Department for the approval of a hand control attachment to the car and later for the learner’s driving licence application.

I had allowed the licence I got before the accident to lapse because I never thought I could drive again. An appeal to the Road Transport Department to have it renewed was rejected. I had to sit for all the tests again without exemption.
Up to that point in time, I had never heard of rehabilitation medicine as a speciality to manage the conditions and complications arising from disabling injuries and diseases. All I learnt about caring for my own health then was mostly through trial and error and from friends in similar situations.

When we got into the lecture hall, Dr Nazirah was in the midst of the lecture on accessibility for disabled people. The students who were listening intently to her unexpectedly burst into applause. I was a little embarrassed by the warm welcome — one that I am going to remember for a long time.

As I followed her lecture on the various aspects of accessibility, I thought it was indeed a good idea to expose these first-year medical students to relevant and important issues that have hindered the full participation of disabled people in the country for so long.

When Dr Nazirah passed the microphone to me, I began by giving a brief introduction of how I sustained spinal cord injury and how I was dependent on my mother for most of my activities of daily living.

I shared with them on one matter I had never spoken about, and something that I am not proud of. My mother helped me with everything because of her love for me. It was also because of love that she spoilt me and I took advantage of that.

She did for me the things I could not do and also those that I actually could. It was because of that that I was not as independent as I should be. That went on until she became seriously ill. Apart from having to look after myself, I had to care for her as well.

All the years of complacency finally caught up with me. That was arguably the most difficult period of my life, more difficult than having to cope with the diagnosis that I could never walk again. I look back with a tinge of regret for not being more diligent in my own rehabilitation and for putting more burden on my mother than I should have.

The story about my life cannot be complete without recounting my wonderful two-week experience in Tokyo. I related how liberated I felt the entire time I was there because I could practically go everywhere and anywhere in a wheelchair, including taking trains, monorails and buses.

In contrast, I felt extremely constrained the day after I got back to Malaysia. I could not move around safely and independently. There were simply too many obstacles every step of the way, even in the central business district of Kuala Lumpur.

At the conclusion, I posed a question for the students to ponder over. Are the problems that disabled people face in society caused by our impairments or are they due to other causes? I guess the trainer in me could not resist slipping in some elements from the workshops I conduct into the talk.

Overall, I am happy with how the session turned out. While it was not as difficult to talk about myself as I had anticipated, the process of sharing the challenging episodes of my life stirred up some emotional memories I thought had long been subdued.

I am grateful to Dr Nazirah for giving me such a valuable opportunity to share my experience and evoke some critical thinking in her students on disability issues. And I am heartened to know that they are being sensitised to issued faced by disabled people. This will certainly make my work in advocating easier.

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

Read more: http://www.theborneopost.com/2014/10/04/a-talk-to-remember/#ixzz3LCHySy00