Wheelchair no stop to Niken's ambitions

Text and photo by Bruce Emond

DEPOK (JP): When she was 22, Niken Arie never gave much thought to the disabled.

It was 1992 and she had other things on her mind. In her sixth semester at the Indonesian Institute of Technology, studying city planning, Niken was also considering a return to the entertainment world.

In her childhood as Niken Basuki, she had co-starred in films with such top adult entertainers of the 1970s as Marini Soerjosoemarno and Dr. Fadli, but she had given it up in her teens to concentrate on her involvement in a marching band.

But at college she started to develop dizziness and a strange heavy feeling in her back, which she at first attributed to over- exerting herself during regular jogging and fitness sessions. After being treated by a neurologist, Niken felt better, but subsequently developed a numbness in her legs.

Indonesian doctors were unable to diagnose the condition and Niken traveled to Amsterdam for treatment.

She was referred to a specialist in Rotterdam and it was there that a small, inoperable growth was found on her spine. Nothing could be done, but one of the doctors advised her to return to Indonesia for alternative therapy.

The efforts -- "we went all over", recollects Niken's father, Basuki S -- were to no avail.

Today, although she retains some feeling in her legs, Niken is unable to walk and uses a wheelchair to get around.

At first, it was difficult for her to accept that she was now among the ranks of the disabled.

"I felt so inferior, so down-hearted. I would look around at other people, especially when they were riding a bicycle, I would think, how come they can ride a bike and I can't, because I had always liked bike riding."

But she had seen in the Netherlands that the disabled were able to carry on with their lives, with specially modified cars, reserved parking spaces and other facilities in public places. She also knew the great difference in the status of the disabled in her homeland and realized she would have to try to earn money.

"My hobby had always been to make something for others, like cards with a poem for a birthday. And I wrote my thesis on waste management, so I decided to try to combine the two. And it turned out that people wanted to buy the cards .... "

She studied how to set up her own business and established C Rie Design. Today, employing a small crew of high school students and unemployed young people from nearby villages in Depok on the outskirts of Jakarta, Niken produces a range of recycled gifts, such as notebooks, stationary, cards, picture frames and boxes.

Niken acknowledged that competition in the recycled paper business was tough and that she continued to rely on her family for assistance in the daily running of the business, such as lying the paper out to dry on the roof of the family home.

The logistics of getting around in a bulky wheelchair are often more than just a headache, although Niken successfully lobbied a South Jakarta mall to provide ramps for the disabled and a walkway. She always has to think first about the facilities available at a site before she decides to make a trip.

"I often have to call people if I'm invited to an event and apologize that I can't come, because there are only stairs at the place. And it's hard to use my wheelchair when the streets are not covered with asphalt, with all the bumps, I just cannot go down narrow lanes, like the ones in this area."

Another problem she has to deal with is the attitude of some people.

"People look at you like you are something out of this world, an alien. It's still difficult for Indonesians, even educated ones, to see handicapped people as anything other than their handicap, that there is more to them ... sometimes my sister will be taking me around the mall and people will stop and stare -- really stare. My sister says, 'What's up with them?' but I just tell her to let it go, there's no point in getting angry .... "

Both Niken ("God just gave me another path in life") and her family say religion helped them deal with the shock of her condition.

"It's traumatic having a child who becomes sick, but then you start to realize that 'perfect' people often don't work optimally, they don't use what they have. But the disabled do the best with what they have," said Basuki, a retired state bank employee.

Niken hopes that able-bodied Indonesians will gradually "open their eyes" to the fact that disabled people are all around them and that they also have needs. But, please, whatever you do, don't stare.

Niken Arie can be contacted at e-mail crie48@indosat.net.id.