2005: A Fulfilling Year In Review

2005 will go down in memory as the year of many pleasant surprises and one that many wonderful friendships were forged. The manifestation of the power of prayers was evident. It also heralded the beginning of many more long journeys ahead. The foundation has been laid, the first steps taken. My life will never be the same again, ever.

I did not realise that blogging could change my social life. It did. I got more than I bargained for when I went to my very first blog meet, and the next and the next. All in, I have made friends with more than one hundred bloggers this year alone, more friends than I have made in the last two decades. Thank you, my fellow bloggers, for having touched me in more ways than one with your kind words and your generous friendship.

The health of my kidneys took a dramatic turn for the worse this year. Perhaps they have been gradually deteriorating over the years. Intermittent catheterisation and medication did help but could not prevent the damage already done to them. I have since come to accept that it will progressively fail to a stage where I will need some form of dialysis. Life has become even more precious now – each day to be savoured and spent meaningfully and productively with loved ones.

How I went for a blood test and discover my failing kidneys deserves special mention. One night, I dreamt of Mum telling me that I would never survive beyond two years if I did not look after myself. I got worried and had a blood test that revealed unusual levels of creatinine, indicating impaired renal function. Was that a figment of my imagination or did Mum really came back to forewarn me? Whatever it was, it prevented my already failing kidneys from declining even further by constant monitoring, medication, intermittent catheterisation and a low-protein low-salt diet.

Earthquake and Bloggers Are Morons, two entries posted after the an extremely strong and extended tremor in March were picked up by many notable blogs worldwide, namely Instapundit, BuzzMachine, MSNBC, Global Voices Online, Screenshots and Brand New Malaysian. That event also fired up my will to get the developer of my apartment to come out with an evacuation plan. Together with Mack Zulkifli’s support and many bloggers who adopted his yellow banner demanding for a systematic evacuation plan, I have been writing letters to the developer and government agencies to plead with them to draw up a contingency plan for the mobility impaired living in high-rise buildings. Unfortunately, the response has been less than lukewarm.

On my trip to Kuala Lumpur in May, my wheelchair came out from the cargo hold severely damaged. I filed a complaint at Malaysia Airlines’ Lost and Found Office. Instead of providing me with another wheelchair for me to continue on my journey, the counter staff refused to do anything else except to take a report. I was not satisfied with the response and wrote a complaint to Malaysia Airlines.

Jeff Ooi took up the case and got fellow bloggers and his readers to flood Malaysian Airlines with mails asking them to be more sensitive to the needs of its passengers, especially people with disabilities travelling with them. In his second entry he published two emails to Malaysia Airlines complaining about my damaged wheelchair and the staff who refuse to help. The emails were from Kimberly Low and Ashok Kandiah, among others.

This is an interesting excerpt from his third entry on that issue:

I wish to thank a foreign correspondent for taking the trouble to contact the PR officer at Malaysia Airlines over Peter Tan’s plight. The journalist has also alerted his colleagues at the world news headquarters to see if they are interested in doing a feature on the problems faced by disabled travellers.

Screenshots: MAS: Mana Ada Sayang?…( 3 )

Malaysia Airlines paid for a new wheelchair. This is the unity of bloggers at work. I am glad that I am part of this socially responsible community. I hope Malaysia Airlines have also educated their staff, especially from the frontline and cargo handlers, to be more cautious and sensitive. Now, each time I travel with them, I will remind the check-in staff to handle my wheelchair carefully to prevent another similar incident. Yes, I have become paranoid.

Twice this year, together with a few other bloggers, I put my blog to good use by raising funds for the Penang Hospice-At-Home Programme. The first was initiated by Suanie where she enlisted Minishorts, Kenny Sia, Paul Tan, ShaolinTiger and me to participate in the Blogathon 2005 on August 6 at www.bloggersaremorons.com. We managed to raise USD1356.98 from 81 sponsors. That is equivalent to approximately RM5085.72 at that time.

The other fund raiser was a dream that had been simmering in my mind for two years. I pledged to shave the hair that I had been keeping for forty two months off my head for the sum of RM5,000 in the campaign called Hair For Hospice. The amount, again, was for the Penang Hospice-At-Home Programme. Five other bloggers joined me in that endeavour by pledging to shave their heads, too. Jason Tee, Sharizal, Bryan, Devyne and Jason Lioh, I salute you for helping make my dream come true. That was in memory of Mum and my way of saying thank you to the Hospice for helping us at the most critical time. More than RM5,000 was donated and the donations are still coming in. Thank you all for your generosity. Know in your hearts that the money you contributed have been put to good use in helping those who are taking the final walk of their lives.

Issues with usable accessible toilets featured very prominently in my blog this year. A barrier-free environment, including accessible toilets, plays an important role in allowing people with disabilities to go out and enjoy life, work and generally enable us to do most things that non-disabled people do. Recently, I used one of the accessible toilets at Mid Valley Megamall. The door was locked. The cleaner said that she had no choice but to lock it because some people tend to smoke in there. At Ikano Power Centre, I discovered this notice on one accessible toilet door. If I could squat on the toilet seat, I would not be using a wheelchair. On second thoughts, it must have been a notice to plead with the “occasional” non-disabled who does not know how use a toilet correctly from damaging it. Oh, and beware of the sweet talking t-shirt peddler who turned the other way when called upon to exercise his social responsibility.

2006 turned out to be the year of answered prayers – mine and of those who had lifted me up to Him. Since my baptism, I have constantly prayed for a direction on life. This year, it has been falling on my lap, one by one, the markers that indisputably pointed me to the one path that I should take. It all began at a meeting with Kuan Aw and Christine who got me into the Independent Living Workshop jointly organised by the Jabatan Kebajikan Masyarakat Malaysia (JKMM) and Japan International Cooperation Agency (JICA).

The workshop was conducted by Hiroko Akiyama and Aiko Tsutsumi from Japan. They shared with us what we can do to achieve total independence in our lives, irrespective of the severity of our impairments. It was an eyeopener and one that will revolutionise the lies of people with disabilities here. The sixteen of us who attended the workshop have made a commitment to set up an Independent Living Centre in Malaysia to better the lives of our peers. I will be going to Japan with two other for further training in Tokyo from January 14 to 31 next year.

I have never travelled further than Kuala Lumpur since becoming disabled. This trip will allow me to see how far I can go where my independence is concerned. I have my hesitations too. This is going to cast me a long distance from my comfort zone in Penang and Kuala Lumpur. I have to adapt to life in a foreign land. I will have to overcome the severity of the coldest month in Japan. This is all frightening and exciting at the same time. I am sure I will be having the time of my life there. The new sights, new sounds and new tastes will be a once-in-a-lifetime experience. I am sure that the three of us will bring back knowledge to share and empower many people with disabilities in Malaysia to become independent and lead a more fulfilling life.

2005 is coming to a close in a few hours. This has been one thrilling year. Many exciting things have happened, many I have never anticipated. Again an again, the unconditional friendship from bloggers come to mind. To my fellow bloggers and blog readers whom I met at the Bloggers Meets at 1 Utama, Pelita Nasi Kandar, Coffee Bean Gurney Plaza, Starbucks E-Gate, Food Junction and Oasis Food Court at Mid Valley Megamall, PPS Bash at Charlie’s, KY’s house and the various places in Penang and Kuala Lumpur, thank you for your friendship and your support during some difficult times and many many good times. You all have made my life richer. God bless you all.

With great friends nothing is impossible. There have been many firsts, too. Thanks to William, Cynthia and Wuan, I had the opportunity to do two of the things that I have always wanted to do for a long time. First was the ride on the Genting Skyway, courtesy of Dinz and the second was watching King Kong in a cinema. I pray these small steps in reclaiming the life that I lost twenty one years ago will be the beginning of many more. My life will never be the same again. Thank you all for believing in me, for giving me the opportunity to grow and the opportunity to be the best that I can be. Lets give toast to great friendships and a fulfilling 2005. May 2006 be even more fruitful not only for me but for all of you.

I Am Going To Tokyo

JICA Office at Menara Citibank
JICA Office at Menara Citibank.

The wheels are in motion. I attended a briefing at the JICA Office at Menara Citibank on Wednesday for Counterpart Training for Independent Living Programme for People with Disabilities together with Siew Chin and Harry of the Beautiful Gate foundation for the Disabled, and two Personal Assistants (PAs).

Visa application form for Tokyo trip
The application form for visa to Japan.

The three of us trainees are using wheelchairs. We filled in the form for visa application and the applied to be members of the JICA Alumni Society of Malaysia. We were then briefed on the visa application, arrival procedure, allowances provisions, etc. After the briefing, we collected our plane tickets from the JAL office in the same building. I had requested for a low-protein low-salt/no salt added meal.

JICA Trainee Guide Book and plane ticket from JAL

(Clockwise from bottom left) Audio tape and phrase book for simple
conversations in Japanese, Copy of the the letter to the
Jabatan Kebajikan Masyarakat Malaysia from JICA
confirming my nomination for the Counterpart Training for
Independent Living Programme for people with Disabilities,
plane ticket from JAL and the JICA Trainee Guide Book.

Now I need to get the appropriate clothes, especially when January is the coldest month in Japan with the average temperature hovering around freezing point. The extreme cold will be a problem. I tend to get spasms in low temperatures. I wonder how many layers of clothes I need to wear.

First Step To Japan

The Penang Immigration Department at Beach Street
Photo : The Penang Immigration Department at Beach Street.

The Jabatan Imigresen Malaysia has become very efficient as compared to the last time when I renewed my passport in 1995. I applied to renew that long expired passport yesterday and was told to go back today to collect the new one. The Jabatan Imigresen at Beach Street was a hive of activity on both days I was there. Although there were many people, application forms were processed quickly and waiting time was approximately 30 minutes. Perhaps that was due to the fact that there was a counter specially for people with disabilities, the elderly and children.

My passport
Photo : My passport.

The passport is for my two-week trip to Tokyo for training on Independent Living in January next year. This training is funded by Japan International Cooperation Agency (JICA) as a follow up to the Independent Living Workshop that I attended in September. Two others were selected along with me for this trip. Two Personal Assistants (PAs) will be accompanying us. Wuan was supposed to be my PA but she had to pull out because of work commitments.

To renew the passport, I had to pay RM1 for the form, fill it up, provide 2 copies of colour photographs, a photocopy of my identity card and the old passport. As a person with disability holding the Kad Kenal Diri Orang Kurang Upaya, I was exempted from paying the RM300 fee. I got a Welfare Officer from the Head Office of the Jabatan Kebajikan Masyarakat Malaysia to provide me with a letter for good measure for the RM300 exemption when I attended the Disability Equality Training in Kuala Lumpur recently.

The back entrance with a ramp at the Penang Immigration Department
Photo : The back entrance with a ramp at the Penang Immigration Department at Beach Street.

While I was impressed by the efficiency of the Jabatan Imigresen, its accessibility for wheelchairs is sorely lacking. The front entrance was totally inaccessible. The ramp at the back was too steep and dangerous. Peter was supposed to work today but took leave to accompany me to collect the passport as he was worried that Elaine would not be able to push me up that ramp. Although the building is old, a little more effort in designing a proper ramp would have made a difference not only to people on wheelchairs but the elderly and people with mobility problems too.