Photo by Bryan.

My mentor and colleague in the disability movement encouraged me to participate in the Wishing Tree programme organised by Sin Chew Daily in Penang. My wish was to conduct two seminars to introduce the philosophy of Independent Living and how it can better the quality of life for disabled persons. One half of that wish was fulfilled today when I spoke at a seminar on Independent Living to a group of disabled persons together with their families and carers. Kuan Aw acted as my translator from English to Mandarin and Hokkien.

Photo by Bryan.

Ms. Yeoh, the journalist from Sin Chew, organised the seminar at the Sin Chew Media Corporation conference room. More than twenty persons attended the seminar. The guest of honour was YB Goh Kheng Sneah, the State Assemblyman for Batu Uban, the constituency where I am living in here in Penang. He graciously sat through the entire seminar that lasted two hours althugh he had engagements elsewhere too.

Photo by Bryan.

My hope is that this seminar had, one way or another, presented the options available for disabled persons to lead more fulfilling lives. The Independent Living Movement is growing in the Asia-Pacific region, thanks to the Japan International Cooperation Agency and Human Care Association for their unceasing efforts in promoting this way of life for disabled persons here, especially those who are severely impaired.

Photo by Bryan.

This is the first of a series of campaigns that we will be organizing to introduce Independent Living in Penang. We are also in the process of registering an association to best serve and support the needs of those wishing to practice living independently in their community. The seminar that I will be speaking at next is at the Mines ICT in Sri Kembangan on August 27. Details of the seminar will be published in this blog on Monday.

Dare To Dream

“What have you been doing?” An acquaintance whom I have not met for several years asked me when we met last Sunday.

I told him I am involved in Independent Living projects.

“Ah, so you are living by yourself now,” he responded.

But Independent Living is not about rehabilitating people with severely physical impairments to achieve sufficient motor functions and skills to live by ourselves. More than that, it is a holistic approach to resolve many of the challenges that we are facing.

It all began in 1962 when a young man by the name of Ed Roberts enrolled at the University of California, Berkeley. It was an extraordinary milestone for Ed. He was severely disabled by polio and needed a respirator. He was the first such person to be accepted by the university despite his condition.

Subsequently, the university accepted fourteen more quadriplegics. All of them lived in the campus hospital. Through Ed’s effort, the university was awarded a grant called the Physically Disabled Students’ Program (PSDP), the first for a university anywhere in the world.

The PSDP provided a host of support services that was unprecedented during that time. It included attendant referrals, housing referral, benefits counselling and peer support, among others. With those support services, students with severe disabilities could live in the community instead of in the campus hospital.

In 1972, the first Centre for Independent Living opened its doors in Berkeley. It was established to provide services similar to the PDSP. However, its services were available to everyone who needed it as opposed to the PDSP which was mostly for students of the university. Through advocacy by the Centre for Independent Living, Berkeley became the most accessible city in the USA by the mid-80s.

That is a brief account of how the Independent Living Movement began. The most important aspect is that it illustrated how severely disabled persons can work towards self-determination if we put our hearts to it. Independent Living is about having choices and to be responsible for our own needs and decisions.

It certainly is not about living alone, being able to perform household chores or being financially independent. Contrary to that, many severely disabled persons practicing Independent Living have discovered new leases of life with the help of personal assistants. With this kind of support, they did things that they could only dream of previously. Some have even gone on to be gainfully employed.

Personally, I still need some forms of assistance although I can perform most tasks unaided. What is the point of spending three hours cooking when someone can help me accomplish that in thirty minutes? In Penang, I live alone not by choice. There are no support services that I can rely on to assist me. Like many of my severely disabled friends, I dream of the day when I am able to practice independent living in its essence.

Nevertheless, here in Penang, we have set the wheels in motion. I have conducted Independent Living and Peer Counseling courses. This is the foundation upon which we are building our Centre for Independent Living on. There will be a half-day seminar on Independent Living for People with Disabilities this Saturday. Our target groups are severely disabled persons, their families, caregivers and those who are interested to know more about Independent Living. Details of the seminar are here and here.

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 Macaslister, 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.)