Older and hopefully wiser
by Peter Tan. Posted on August 11, 2013, Sunday
AGE is not just a number. Each is a marker of our journey through life. For good or for bad, therein lies the stories about us. My age went up a notch a few days ago. I turned 47. The day was spent in quiet contemplation of the year that was.
It is said that people mellow with age. I can attest to that. As I look back, I realise I was brash as a teenager. I carried that temperament into my adulthood. Fortunately, over the years, age has tempered the fire within and the imprudence has been supplanted by patience and perseverance.
Although life is less exciting like that, I know very well how impetuousness can result in fatal consequences. I have a family now and there are responsibilities that go with it. I can no longer be happy-go-lucky and live without a care for the world and the people around me.
When my mother was alive, she would colour a tray of hard-boiled eggs red and cook birthday noodles to commemorate the anniversaries of my birth. These small celebrations were very symbolic in nature.
Cracking the shell and peeling it off the hard-boiled egg signified renewal and growth, in emulation of the moulting process in nature. The long strands of the birthday noodles represented longevity. I always enjoyed waking up to these on the morning of my birthdays. This tradition ended after she passed on.
I do not even celebrate my birthdays any more. Every day that I am alive now is a celebration in itself. I am grateful for the time to spend with loved ones. I am fortunate to be able to do the things that I love and the things that matter.
I had not expected to survive this long after the accident. People with spinal cord injury have a shorter than average life expectancy. This is due to the increased risks and complications from renal failure, septicaemia and pneumonia.
The fact that I am still around 29 years after the injury, albeit living with Stage 4 renal failure, is somewhat short of amazing. A few of my friends in similar condition have succumbed to one complication or another in less than two decades.
Nonetheless, I must say that 46 was a good age for me. The missing pieces of the jigsaw puzzle of my life came falling into place one by one. This is due in no small part to friends who have unreservedly supported me along the way.
My friends are my greatest asset. They add colour to my otherwise monotonous days. They open doors of opportunity for me. Most importantly, they believe in me in spite of my shortcomings. Indeed, friends are happiness multiplied. And to these friends, I thank you from the bottom of my heart for your generosity.
This birthday, I was reminded of a quote that I read in the Reader’s Digest a long time ago. It went roughly like this: “To be happy, one must have someone to love, something to do and something to look forward to.” I have every reason to be happy because all three converged during the 46th year of my existence.
I have someone to love, very deeply if I may add. Wuan and I are into the sixth year of our marital bliss. We are still as lovey-dovey now as we were when we first fell in love with each other. She inspires me. She gives me hope. We cherish each and every moment that we get to spend together.
I have something to do. In fact, I have been kept busy by a couple of things. Since last year, I have begun facilitating workshops on Disability Equality Training (DET) on a regular basis all over the country.
The other is writing. I have been blogging on disability issues for the past 10 years. I started writing this weekly column in The Borneo Post in February and count it as my biggest achievement to date as a disability rights advocate. The reach of my articles has become as wide as the circulation of the newspaper and its online edition.
The best of all is that what I am doing now is changing my own life and that of other disabled persons for the better. I could not have asked for better things to do.
I have something to look forward to. I am currently working on upgrading my skills to become a trainer of trainers of DET. There is a need to nurture more trainers to carry on the work in educating society on the causes of disability and encourage proactive actions to make the environment inclusive.
With so many good things happening at the same time, it is difficult not to be joyful. Truly, life is great considering the circumstances.
When I first became severely paralysed, it was as if the world had collapsed on me. I believed then that I could never amount to anything. My accomplishments, especially in the past year, are testaments that given opportunities, and with self-determination, a disabled person can become productive again.
Human beings are resilient creatures. History has proven time and again that we are adept at adapting, adopting and improvising. We have learnt to live in regions with harsh climates and even in the outer space. Likewise, disabled persons should draw on these inherent traits to move on and make something out of their lives.
My success, if I can call it that, did not come overnight. I slogged at it for years. I failed more than once. There were times when I felt like giving up. I am glad I did not. Instead, I learnt from the failures and built on the successes. If I can make it, I am sure other disabled persons can, too.
So, I am one year older now, and hopefully a little wiser than I was before. I am still coming to terms with the reality that I am starting to build a career only at this late stage in my life. I am not complaining though. This is what I prayed for and this is what God has granted. I am blessed.
Comments can reach the writer via email@example.com.
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The bane of man-made barriers
by Peter Tan. Posted on August 3, 2013, Saturday
MY teenage years in the Boy Scout troop were full of adventures. We hiked across jungle trails to camp at secluded beaches. Two of the more strenuous activities that I enjoyed were cycling around the island of Penang and abseiling down a rock face several storeys high.
At that time, it seemed like nothing could stop me. I was imbued with extreme youthful bravado. There was no hill too high to climb and no place too far to explore. Obstacles were simply challenges with an open invitation to be conquered. I never knew what defeat was until I sustained my spinal cord injury.
Barriers of all shapes and sizes waited for me at every turn of the corner after that. I was stuck at home in a wheelchair most of the time. It was too much hassle to go out. There was nothing I could do to change the situation. I accepted that the limitations I faced were due to my paralysis. I was finally beaten by my own body.
It took me a very long time to realise that there was no causal linkage between not being able to walk and not being able to achieve meaningful participation in society. The entire system is simply chock-full of barriers that are man-made. That realisation shifted my paradigm from just naively accepting my fate to becoming an agent of change by pushing for the elimination of barriers in society.
In the built environment and public transport system, barriers are the physical obstacles that restrict independence and hinder mobility. These obstacles cause a cascading effect with far-reaching consequences.
The activities of persons with impairments are affected in every aspect by these barriers. We cannot get an education because buses and schools are inaccessible. We cannot become gainfully employed because we lack qualifications from not being able to go to school. In the end, we become financially deficient and socially marginalised not of our own doing. It is the barriers that have made us into ‘disabled persons’.
Misconceptions, assumptions and prejudices are attitudinal barriers. They prevent meaningful interaction between non-disabled and disabled persons. We face discrimination because we are thought to have less abilities or even no abilities, deserving pity and in need of charity. In reality, all we need are equal opportunities.
In some communities, impairments are seen as a form of punishment for sins of a past life. In others, disabled persons are hero worshipped for overcoming barriers that were ironically built without consideration of the inconveniences they would cause in the first place.
Another common perception is that rehabilitation can put paraplegics and tetraplegics back on their feet again. Those who are unable to walk after that process are judged to have no determination and be lazy. Not being able to walk is not the issue here. The diversity of humankind should be accepted and respected. The attitude of expecting everyone to conform to the norm is the real problem.
Disabled persons are perceived to be incapable of sexual intercourse. This is one question we have been asked once too often and one we have become weary of answering. When we explain that it is a myth, we are discouraged from starting a family because we might produce offspring with similar impairments, which is also another myth.
Legislative barriers are exclusive policies and practices that lead to institutionalised discrimination. Segregation of disabled students in the education system is an example. They are evaluated based on what they cannot do instead of the skills and potentials they possess. Thus, they are denied the opportunity to develop like other non-disabled students in mainstream schools.
The lack of support services is seldom considered a barrier. They are crucial nonetheless. Personal assistants and sign language interpreters enable disabled persons to function more effectively. The importance in support services cannot be overstated, especially for persons with severe impairment who otherwise cannot practice independent living without the support of personal assistants.
The scarcity of resources in Braille and other accessible formats is an issue that has not been properly addressed. Braille printers are expensive but when they are available they are often underutilised due to the lack of expertise in using them. Students with visual impairments have no choice but to depend on volunteer readers to provide support in reading printed materials.
The list of barriers here is not exhaustive. What is a barrier to some may not be a barrier to others. However, it is a common denominator that all disabled persons are fighting against. Barriers, be they physical, attitudinal or legislative, must be removed without reservation.
Barriers are the causes of accessibility issues. Accessibility issues in turn can no longer be regarded solely as a problem of disabled persons. According to the United Nations, Malaysia will become an ageing nation when 15 per cent of the population will be aged 60 and above by the year 2030. We all know that ageing can lead to chronic mobility impairments and diseases.
If the policymakers in the government do not start to address the problems now, they may just find themselves in a quandary when they become old and frail and in dire need of accessible facilities and a caring society. The cliche: “If we fail to plan, then we plan to fail” is a warning we should all heed. It is still not too late. Let us break the barriers now, for a better future for ourselves and those who come after us.
Comments can reach the writer via firstname.lastname@example.org.
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Privileges and rights
by Peter Tan. Posted on July 27, 2013, Saturday
SATURDAYS are grocery shopping days for my wife Wuan and me. We usually spend a few hours at the supermarket in a shopping mall to stock up on fresh food that we need for the following week such as fish, vegetables and fruits.
We frequent this one particular mall because of the ample accessible facilities. The other reasons being to escape from the heat and humidity, and because we can practically buy everything we need under one roof.
While our grocery shopping has always been fuss-free, queuing up to pay can be a long wait, especially nearing festive seasons and during school holidays. There would be long lines of shoppers with trolleys laden with festive goodies and whatnots waiting to check out at the cashier lanes.
Previously, there was a priority cashier lane at this supermarket specifically for senior citizens, pregnant women and disabled persons. A big signboard indicating this hung from the ceiling. I would queue there most of the time together with other shoppers who were neither senior citizens nor pregnant women. I had to wait for my turn just like everyone else.
The initiative to provide a priority cashier lane is laudable but the implementation left much to be desired. I complained to the management telling them that if they were not going to honour the purpose of allocating the priority cashier lane, they should remove the signboard because it was misleading. The signboard was removed a few weeks later.
Government departments on the other hand have been efficient in dealing with disabled clients. From the Immigration Department to the Road Transport Department, applying for a passport or renewing a driving licence has been a painless and quick affair for me as disabled persons are really accorded priority service.
Having said that, I am not too concerned about not getting such priority services as they are privileges and not rights. If I can spend two hours shopping, there is no reason why I cannot spend another 20 minutes waiting in line to pay just like everyone else. I would be more upset if my rights were violated.
It all boils down to the issue of equality. As a disabled person and an advocate, I have learnt to be very clear with what I want. There is a distinction between privileges and rights of which equality is part of. Both cannot coexist in the same sphere.
As an example, it would be unreasonable of me to demand for the privilege of discounted bus fares on the basis of my impairment and at the same time assert my right to accessible public transport as provided for under the law. If I want an acceptable level of service and facility, I must be ready to pay the full fare.
However, if the bus company chooses to charge discounted fares voluntarily, that is their prerogative. In fact, a number of government-linked companies such as Telekom Malaysia and Malaysia Airlines provide discounts on their services and fares for disabled persons. I have no argument with that but I personally would not lobby for these privileges.
Privileges are benefits granted to a select group of people that can be withdrawn at the discretion of the giver. Rights are principles granted by law, treaties and on the basis of our being members of civil society and citizens of the state. Rights, on the contrary, cannot be revoked at the whim of the government or any other party.
The demand for rights and equality must be tempered with responsibility on both sides. That is why the Independent Living Movement practises the concept of consumer-centrism in the employment of personal assistants to support disabled persons.
Personal assistants are paid salaries that are commensurate with market rates. This appropriate compensation is to ensure that there is a commitment to provide a level of service that is expected of them. It would be difficult to demand the same commitment from volunteers and people who are paid a token for the same amount of work.
In recent years, with the enactment of the Persons with Disabilities Act 2008 and the ratification of the United Nations Convention on the Rights of Persons with Disabilities, the provision of accessible facilities in Malaysia has improved although there is still much room for improvement.
With this development, the meaning of equality is lost in translation to some activists as they unilaterally move in to restrict the use of these limited facilities such as community lift van service and parking spaces. They pigeonhole disabled persons into those who are entitled and those who are not.
This act effectively segregates disabled persons into classes just like how disabled persons are segregated in society. It obliterates the spirit of equality that many disabled activists and advocates who have at one time or another fought hard to achieve.
Instead of restricting and claiming entitlement over the limited accessible facilities, all disabled persons should come together and advocate for more of such facilities. Therefore, I cannot emphasise enough to disabled activists the importance of understanding the meaning of equality and respecting its spirit.
This brings to mind the following line I read in the book ‘Training for Transformation – Book 1’ by Anne Hope and Sally Timmel: “As oppressed people, moving into freedom and opportunity, we can either become selfish and oppressive ourselves, or move into relations of solidarity with others, sharing and caring for one another, and marching together towards a new society in which our full humanity is assured.”
It succinctly sums up what we should and should not do in our continuous thrust for rights and equality, not only for disabled persons but all communities that are facing discrimination, oppression and segregation.
Comments can reach the writer via email@example.com.