What being independent means to the disabled

JOHARI Jamali has been president of United Voice, the first self-advocacy society in the country for people with learning disabilities, since its formation in 2004.

I often refer to him as the CEO, and his down-to-earth and humble approach in leading endears him to all who know him.

He recognises that “gaining independence” from Dignity and Services, the parent advocacy movement that spun off UV some seven years ago, was a big step forward, but there is much work to be done.

As we celebrate our 54th Merdeka Day this Wednesday, I am reminded that independence means different things to different people.

For Johari and members of UV, the freedom to be able to speak out for themselves and to chart their own destiny is truly empowering.

Said Johari: “I would like to see the Malaysian education system encourage students, with and without learning disabilities, to be more outspoken about their future.

“People with learning disabilities should be more confident when speaking out at public forums, preparing for job interviews and fighting for their rights.”

This is what their Merdeka is about. Now they can mind their own bank accounts, conduct their own elections and even call their own press conferences. The “non-disabled” friends of UV keep a healthy distance and never intervene.

I have seen Johari grown in confidence and stature through the years. He not only understands the issues that affect people with learning disabilities, but is also able to look beyond his immediate niche group.

In a way, he reminds me that freedom for oneself is meaningless if we do not also see how that freedom affects others.

Consider, for example, why disabled groups had to stage a protest last week to remind the authorities that aerobridges are necessary at the new low-cost carrier terminal at the KL International Airport or KLIA2.

When I asked Johari about his thoughts for Merdeka Day, his remarks were forthright: “I want to see more changes among Malaysians so they won't stick with one race. I want the Government to consider our race as Malaysian, not Malay, Chinese, Indian, Eurasian, etc.”

If you have attended any of the UV activities, you can understand why. The members suffer from disabilities such as Global Developmental Delay, Down's Syndrome, autism, attention deficit hyperactivity disorder and cerebral palsy, but they are together as one.

The only time I hear race mentioned is when they are doing an obstacle race, one of the many fun activities they have when they gather to encourage and learn from one another.

Although he has experienced some form of independence, which many of us often take for granted, Johari also has his dreams to go further. “I wish I could further my studies and get a job that will also allow me to gain overseas exposure as well. Now I am a receptionist at an audit company but I want to do more than just answer calls.”

In his role as president of UV, Johari has been to numerous conferences overseas where he not only talks about the Malaysian situation but learns what other countries have done to fully include the disabled into society.

Having just attended one such conference in Geelong, Australia, Johari hopes that all Malaysians with learning disabilities would one day be able to further their education in vocational training centres and universities.

And that Corporate Malaysia will also do more to hire them. Real independence, after all, is not about charity, but getting a real salary so that they can pursue their own dreams.