Thoughts On Living Independently

Housework is bogging me down again. Several days ago, as I took a breather after cooking, I pondered over all the chores that I had to perform as a routine. No doubt I could manage most of them but they were also wearing me down physically and mentally. Most evenings, I go to bed totally exhausted.

Many, even disabled persons, have the misconception that to practice Independent Living, the disabled person must be able to live by himself, do everything by himself and at the same time be financially independent. There was also the question of whether securing the services of Personal Assistants in the context of Independent Living will make the person lazy.

Independent Living is a about choices and self-determination. It was initially established to support persons with severe physical disabilities to decide on the kind of life they want to live with the support and involvement of government and society. Among others, this was achieved through the services of Personal Assistants helping the disabled person in his daily activities.

The question of laziness does not arise as severely disabled persons do not possess sufficient motor function to perform tasks unaided. Secondly, disabled persons, either through self-oppression or through the prejudices of society, have been expected to perform at par with the non-disabled. This skewed expectation seldom takes into account the limitations of the environment and the capabilities of disabled persons.

I thought I could live independently without assistance. I did, but at a price. After completing all the chores for the day, I have little time left to do anything else that is meaningful. Essentially, I have been pushing myself over the boundaries of my own abilities. A little assistance would have eased the workload immensely and freed up time for me to work on more significant issues. In short, I was tormenting myself with a jaundiced view of how to living independently should be.

I must recognise and accept my disabilities and its limitations and that there is only so much that I am able to accomplish. While it is commendable for me to attempt to live without assistance, there is a need to draw the line on where I should stop in my attempts to push the limits. There must be a fine balance between ambition and capabilities. The importance of one over the other should not be discounted.

It is imperative that I have the desire to push myself to achieve the seemingly impossible goals. My eagerness to prove that I can make it in spite of my disabilities should not compromise my quality of life. Ultimately, it will boil down to me against myself – my desires against my capabilities. One without the other would make my life less meaningful. On the other hand, too much of one or too little of the other could complicate things.

Having understood the wisdom of that, it is only prudent that I rearrange my priorities. There is a need to get assistance to help me with the chores that are taking too much of my time. I want to be freed from those to enable me to do the things that I love and also work on Independent Living projects. One of my neighbours has been helping me voluntarily with some of the housework.

However, assistance such as this must be sustainable and a service that I can rely on in the long run. Surely I cannot expect my neighbour to do all that for me without any kind of renumeration although time and again she had refused to accept it. What about those who do not have kind neighbours such as mine? This is a learning process and a good case study for me to assess how Independent Living can be initiated and adapted to suit Malaysian culture.

(This entry was written several days before I left for Kuala Lumpur last Saturday.)

Five Fruitful Days

Peer Counseling Seminar and Workshop 2006 group photo
Peer Counseling Seminar and Workshop 2006

Every time I attend training on Independent Living or Peer Counseling, I am awed by the tenacity of the resource persons and participants. Many with less have achieved more especially the resource persons from the Human Care Association in Japan. They constantly visit countries in the Asia-Pacific region to spread the message of Independent Living. Despite battling great odds, they willingly and unconditionally share their knowledge. Their only reward is being able to rejoice in seeing the Independent Living Movement flourish in this region.

It is a humbling experience to be able to learn so much from them considering the fact that I have less physical impairment than most of them. This goes on to prove that the human mind is still the greatest asset we can ever possess. Nevertheless, many disabled persons are still being judged on their physical attributes rather than their capabilities. All things being equal, I am absolute that a disabled person can do a job as good as a non-disabled, if not better. Why the discrimination?

Peer Counseling Seminar and Workshop 2006 - Ms. Emiko Nakahara, Peter Tan and Ms. Hiroko Akiyama
L-R: Ms. Emiko Nakahara, me and Ms. Hiroko Akiyama.

The Peer Counseling Workshop conducted by Ms. Emiko Nakahara and Ms. Hiroko Akiyama was still an eye-opener even though I have attended the Training on Peer Counselors for People with Disabilities in Bangkok recently. It was interesting to see the gradual development of the participants from the first day to the last – from a disoriented look initially to one that showed enlightenment and empowerment at the conclusion.

On my part, I was glad to have been given the opportunity to play a minor role as a resource person. This has helped a lot in my preparation to conduct a seminar on Independent Living in Penang soon. This seminar is going to be organised and funded by a major Chinese daily. The targeted audience are severely disabled persons, their family and carers, and the public who are keen to learn about Independent Living for People with Disabilities.

Related entry:
Peer Counseling Seminar And Workshop 2006

Busy Weekend

Penang Adventist Hospital
Penang Adventist Hospital.

Last weekend was one of the busiest I have had in a long time. On Saturday morning, Vincent picked me up to go meet someone we have met twice before at the Penang Adventist Hospital. He is a paraplegic, suffered spinal cord injury eight months ago in an accident and is currently undergoing rehabilitation at the hospital. He was asleep when we arrived. Vincent and I chatted at the lobby while waiting for him to wake up. However, we left after finding him still sound asleep the second time we went to his room.

Relay for Life
Relay for Life balloons.

I barely had time to catch my breath and catheterise when Dr. Oo picked me up again to attend the appreciation party for the participants of Relay for Life. The Relay for Life is a fund raising cum cancer awareness cum celebration of cancer survivors event that is held simultaneously worldwide. About one hundred guests attended the party at the ruman Hospice at Jalan Ayer Itam.

Relay for Life thank you party
Guests browsing photographs of Relay for Life.

There was a dance presentation by the girls from Island Hospital, a short video clip of the Relay for Life that was held in March at the Taman Perbandaran and certificate presentation. This was followed a tea break and games. I left early with Bryan because I needed to pack my luggage and prepare my presentation for the next day. Bryan is the current webmaster for the yet-to-be officially launched joint Penang Hospice Society and National Cancer Society of Malaysia (Penang Branch) website.

Cathedral of the Holy Spirit Penang preentation
Group photo after the talk at the cathedral.

Early Sunday, Vincent picked me up again to give a presentation to about ten teenagers from the Chinese-speaking cathecism class, their parents and some parishioners at the cathedral. The talk was regarding my life, my faith and how they can contribute to the Independent Living project that I am working on. The gist of my message that morning was that as Christians, we have been called upon to serve God. Assisting disabled persons with needs is one of the ways of serving God.

Penang International Airport

After a quick lunch at home, I finished packing up my luggage, cleared the fridge of the remaining perishable foodstuff and got Peter to drop me off at the airport. I was glad that I got to the airport early. At least I had some time to relax and reflect on the events of the past two days.

Clouds - somewhere between Penang and Kuala Lumpur
In flight somewhere between Penang and Kuala Lumpur.

One of the things that I realised was that I could manage a hectic schedule like that, especially if it is for the Independent Living projects if I could get help for the cooking and other household chores. It would be such a pity and a waste for me to have travelled so far and learnt so much only to be weighted down by the continuous trivialities that had rendered me unproductive in many ways.