A dream coming true
September 5, 2015, Saturday Peter Tan, firstname.lastname@example.org
I AM excited and there is a good reason for it.
The vision I have been harbouring for the past 10 years is finally coming to fruition. Readers of this column may recall my journey into disability rights advocacy began when I attended the first Independent Living (IL) Workshop in 2005.
The objective was to equip participants with the skills to eventually set up Independent Living Centres (ILCs) in the country. On my part, there have been several attempts to set up an organisation to run an ILC. That, somehow, failed to materialise for one reason or another. I eventually moved on to become a facilitator on disability equality. Nevertheless, the implementation of IL in Malaysia has always been close to my heart.
ILCs provide services for disabled people, regardless of their impairments to live in the community with the support of personal assistants.It allows us the liberty to make decisions by ourselves and direct personal assistants to help us in tasks we wish to perform. Personal assistants will only act on our instructions. They are not supposed to act on their own accord on our behalf.
Such kind of support system may seem unusual but being able to make decisions autonomously is one thing many severely disabled people who have to depend on family members as carers seldom get to exercise. IL provides
that avenue of self-determination which most non-disabled people take for granted.
These are the four key concepts that clearly spell out what IL is all about:
1. Disabled people should live in the community instead of in institutions.
2. Disabled people are not patients to be cared for, children to be protected or Gods to be worshipped.
3. Disabled people can identify the necessary assistance required and manage it.
4. Disabled people are victims of prejudice rather than victims of their own impairments.
As disabled people, we have the right to live a dignified life of our own choosing just like everyone else. ILCs strive to support that aspiration by offering peer counselling, independent living skills trainings and consultations. These are designed to prepare us in regaining our self-confidence, managing our own personal affairs more efficiently and forging meaningful relationships with the people around us.
In May this year, Prime Minister Datuk Seri Najib Tun Razak announced the government will work with the private sector to support the establishment of 7 ILCs to serve 11,000 disabled people in the 11th Malaysian Plan.
I was initially sceptical if these centres would be run true to the spirit of IL or that they may turn out to be massive institutions to house disabled people because there were no detail on how it would be implemented.
Little did I know I would be directly involved. I am one of the two local resource persons roped in to play an advisory role and have been privy to witness from inception of what, in all probability, is the greatest initiative the country has ever undertaken to enhance the welfare of disabled people, especially those with severe impairments, hence my excitement, and also trepidation.
The more involved I got, the more anxious I became. Although this project involves various government agencies, foreign technical experts and the private sector, coordinating the trainings and setting up of 7 ILCs simultaneously to serve 11,000 people is a gargantuan task by any measure.
My concerns aside, when fully operational, these ILCs will bring immeasurable benefit to disabled people like me who are dependent on the support of others for our activities of daily living.
Take my case, for example. I can only go out on weekends when my wife is not working. I need her to help me dress up, assist me into the car and store my wheelchair in the boot. With the support of personal assistants, I will be able to go out on weekdays too which will increase the frequency I can conduct trainings and run errands.
This will improve my life in many ways as I will be able to do many more things without having to depend on my wife all the time. In turn, she will have more time to herself instead of having to spend all her off days tending to my needs without respite.
The Department for the Development of Persons with Disabilities (JPOKU) is the lead in this project and will be working closely working with the Japan International Cooperation Agency (JICA) and the Human Care Association of Japan to put into operation a plan to train selected candidates in setting up and managing the ILCs.
JICA collaborated with the Department of Social Welfare to organise three workshops on IL and peer counselling from 2005 to 2007. Human Care Association was the main partner that dispatched resource persons to conduct the workshops in Malaysia and hosted trainees when they were sent for further trainings in Tokyo.
This project will probably take up most of my time from now on as it is slated to run from 2016 to 2020. I want to concentrate my time and effort in providing as much support as I possibly can in ensuring that it will lead to the birth to even more ILCs after that. Ideally, each district should have at least one ILC.
I can foresee there is a lot of work to be done for everyone of us involved. But I am not going to fret too much because this is what I was initially trained for and this is what I am going to do since the opportunity to put my skills to good use has come knocking so providentially.