The Sin Chew Daily, through its Wishing Tree Programme, is organising two half-day seminars on Independent Living for People with Disabilities. The seminars will be held in Penang and Kuala Lumpur respectively. The four topics that will be covered are:

1. Introduction to Independent Living
2. Practice of Independent Living in other countries
3. Effect of Independent Living on Disabled Persons and their families
4. Independent Living in the Malaysian context

The main target audience are disabled persons, especially those who are severely disabled, and family members who are acting as carers for disabled persons. The practice of Independent Living empowers disabled persons to take charge of their own lives. At the same time, it would lift the burden off the carer and family.

The Independent Living Movement has long taken root in the USA. The first Centre for Independent Living (CIL) was established in Berkeley in 1972. In the Asia-Pacific region, the first CIL, named the Human Care Association, was set up in Tokyo in 1986. From Japan, it has spread to South Korea, Philippines, Thailand, Pakistan, and now to Malaysia.

It is still in its infancy stages here. My goal, which is also the common goal of all my colleagues in the Society for Independent Living in Penang, is to set up a CIL to support severely disabled persons desiring to practice Independent Living. This seminar and the ongoing courses that I have been conducting in Penang will one of several steps that we are taking to promote our vision.

Here, I would like to extend an invitation to everyone who is interested to learn what Independent Living is all about to the seminar in Penang. We would like to work with the community to dispel misconceptions about disabled persons and work towards a goal that is mutually beneficial for all.

Seminar on Independent Living for People with Disabilities
Date: August 19, 2006 (Saturday)
Time: 2.00-5.00 pm
Venue: Sin Chew Media Corporation’s Hall
67, Jalan Macalister, 10400 Penang (Opposite UMNO Building)
Tel: 04-2226666
Language: English and Hokkien with Mandarin translation

Details of the seminar in Kuala Lumpur on August 27 will be published later in this blog and in the Centre for Independent Living Penang Forum. For further information on the seminars, I can be contacted at 013-340 3728.

Photo by Wuan.

Andrew Hee and I were Resource Persons for the follow-up training on Peer Counseling at Institut Latihan Majlis Kebajikan dan Pembangunan Masyarakat Kebangsaan, Bandar Baru Sentul today. Eight Peer Counselors participated in the one-day event funded by the Japan International Cooperation Agency. Kenji Kuno, the JICA Expert/Advisor for this project was with us throughout the entire day. I covered two topics – History of Peer Counseling and The Promises of Peer Counseling. It was a good learning experience, not only for the participants, but for me as the questions posed allowed me to understand Peer Counseling on a deeper level. The next training will be on September.

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.)