Giving power to parents of disabled children

PUBLISHED : Sunday, 31 July, 2011, 12:00am
UPDATED : Sunday, 31 July, 2011, 12:00am
 

Feng Xin, 40, is the executive director of the Guangzhou YangAi Special Children Parents' Club, one of the few non-governmental organisations on the mainland that helps the parents of children with disorders such as Down's syndrome, autism and cerebral palsy. While many other groups focus on the children's special needs, Feng stresses the importance of helping their parents cope with difficulties that can turn into desperation.

When did you start working with Guangzhou YangAi?

I have been with YangAi for more than 14 years, and have been the executive director for 10.

There were few NGOs back in the 1990s. How did you get the job?

I came to Guangdong from Tianjin in 1997 and was looking for work. First I worked for a Hong Kong factory in Dongguan, but I soon quit because of the unfairness there. For example, junior employees had to eat in a different part of the canteen than the executives and had to go a different way into the dining area. In 1998, some friends introduced me to Dr Brian Stratford, who'd founded YangAi a year earlier and was looking for an interpreter. That was the first time I came in contact with YangAi.

What is the goal of YangAi?

Dr Stratford (who died in 2003) specialised in Down's syndrome, and his wife, Maureen, was an expert in educating children with special needs. In fact, one of their daughters was born with Down's and this brought them a lot of pain. They came to Guangzhou in the mid-1990s and, through their work as consultants for the Guangdong Maternity and Children's Hospital, met many parents whose children had Down's, autism and cerebral palsy. Many of the parents felt alone and didn't have the basic information and skills to care for their children. So in May 1997, they set up YangAi with help from the Guangzhou hospital. As an NGO mainly helping the parents of children with special needs, we feel it's very important to let parents know that they are not the only families experiencing the hardship brought on by their children's conditions. Through the network, the parents can attend events and share information about caring for their children, as well as knowledge about effective treatment, and the best hospitals and doctors.

Why is it important to care for the children's parents?

The government and many institutions have given a lot of resources and support to disabled children, but few groups pay attention to the parents, who we think face a tougher time. Many parents, mostly the mothers, have to give up their careers and stay home with their disabled children because the children can't feed themselves or go to the toilet. There's also deep discrimination on the mainland about children with cerebral palsy and autism. Many people, especially those living outside the big cities, don't believe that the conditions the children are born with are natural. They think the parents must have done something wrong to their children. All these factors put an unbearable financial, mental and social pressure on parents. What's worse is that the children may not be able to understand or communicate with their parents. Unfortunately, as far as I know, there are only five clubs, including ours, for parents on the mainland.

Where are these other groups?

The other four are in Xian in Shaanxi province, Guiyang in Guizhou province, Ganzhou in Jiangxi province, and one in Shandong province that is about to open.

Why are there so few?

It's hard to tell, but the China Disabled Persons' Federation takes the position that caring for the parents of disabled children is not its main task. I doubt there is anybody at the federation in charge of this area. One reason, I suspect, is that if the parents grouped together they might complain to officials about poor resources for the disabled and inconvenient public facilities. They would first target the administration system, but then they might turn on the political system, and officials would regard that as a source of instability. On top of that, it's hard to register NGOs on the mainland. And since taking care of the parents of the disabled is not yet a big public issue, society has little interest in it.

What are your plans?

YangAi has about 1,200 members, 80 per cent of them in Guangdong. One-third of them attend our events often, and about 10 to 20 per cent are very active in our work. We believe our activities should be rooted in the local environment, which means that parents living in the same city or neighbouring communities can provide better support to one another. For example, we are helping the mothers of autistic children in Guangzhou's Haizhu district establish a small group. We also want to set up more specific groups based on the children's ages and medical conditions, so the mothers will have more things in common. We believe that parents are the main force behind the activities, and YangAi is just a platform. We want to give them professional advice and support and let them realise gradually that they can do more.

Are there any difficulties running an NGO like YangAi?

Yes, of course. There are always more and more problems to deal with. One of the toughest is that authorities see us as a potential cause of social instability, while sometimes parents complain that we should be stronger in pushing the government to give more support to their children. So we have to try our best to balance forces coming from different directions.

Has a parent ever complained about your organisation?

Yes, this is possibly the hardest part of our job. The parents, of course, want more help for their children, but YangAi is just an NGO. We also need a lot of help from the community and the government. It can be exhausting trying to protect the parents all the time. It's then that you might ask yourself if you can really help them.

What do you feel is your biggest achievement at YangAi?

We have grown from nothing into a big organisation that is becoming known to more and more parents of disabled children. But this is not my biggest accomplishment. If I had not joined YangAi, I might have become a teacher, and I wouldn't have had the chance to see the development of society so closely and clearly. I feel lucky to have the opportunity offered to me by YangAi to have a better understanding of this society.

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