“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.