City Weekend

Why this Hong Kong lawmaker who fights for the disadvantaged wishes he had been a better father

Social welfare sector representative Fernando Cheung reflects on raising a child with special needs

PUBLISHED : Saturday, 13 January, 2018, 5:31pm
UPDATED : Saturday, 13 January, 2018, 5:31pm

From fighting for the rights of ethnic minorities to helping the disadvantaged, Fernando Cheung Chiu-hung is proud of the recognition he has won for his contributions to the social welfare sector. But the 60-year-old lawmaker has one lingering regret: he wishes he had been a better father.

Life is understandably difficult for him as a parent raising a 26-year-old daughter with a severe intellectual disability. Cheung, however, wants to tell other families with special-needs children that it is all right to seek help from others.

Before he gave up his US citizenship to run for the Legislative Council in 2004 and winning a seat that year, Cheung decided to move back to Hong Kong with his family thinking they could benefit from a stronger family network to help share their burden of taking care of their second child. She is unable to take care of herself and has trouble speaking and walking.

“Everything seemed to be perfect at first when I was working and living in the US,” Cheung recalls. “I thought I had a bright future there. I knew what to do next in my career. But eventually I had no choice but to come back so that my other family members could help take care of my eldest daughter.”

Cheung, father of a son and two daughters who are all in their 20s, expresses a sense of guilt for devoting almost all his time to his second child, thinking he has somehow neglected the other two.

“I know there’s no way I could ever compensate them,” he says. “But I hope they can find their purpose in life. And as for me and my wife, I hope we can continue to take care of our elder daughter while we still can.”

What is it like having to juggle between being a lawmaker and a father of three?

It’s really hard. I sacrificed a lot of my time with my family. I spent less time talking to my wife and my three children. Whenever they have something to share or problems they want me to solve, they just can’t reach out to me immediately. I spend most of the day at work, and at night when I return home, there is not much time for us to chat. As a father I don’t feel like I am ‘in sync’ with them.

I wish I could learn more about my children, almost everything about them. When they were little, I wanted to know more about what their interests were, their strengths and their character, so that I could help them by connecting them with the people I knew who could give them more advice. Now, as they are older I want to know if they are dating.

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When did you realise your eldest daughter was intellectually disabled?

We didn’t know until she was born. My wife was very healthy when she was pregnant with her. And there was no genetic problem. After my daughter was born, the doctors noticed that she had some physical features of the intellectually disabled, such as folded ears, thick skin around her neck and weak muscles. She also suffered from a ventricular septal defect (a hole in the wall separating the two lower chambers of the heart). The doctors at the time warned that she might have some kind of developmental delay and told us to monitor her situation. Normal babies should be able to roll over when they are three months old, and by six months, they should be able to sit firmly by themselves. But these were all delayed in our daughter’s case. So, by six months, we were certain that something was wrong.

What was your initial reaction when the doctor told you about your daughter’s condition?

I was very sad and worried. My wife cried for a day when she got home from the hospital. We spent lots of time trying to figure out what went wrong. We kept asking ourselves: “Why us?” But this was our self-pride. There was no such thing as perfect or not perfect. To us, our daughter is adorable no matter what. It didn’t take us long to realise that we should get over the sadness and face reality. We knew there would be a lot of challenges ahead and we must go through them together.

Do you remember the moment you saw her walk for the first time?

She was nine years old. We were at home. I was overjoyed when I saw her take the first steps. She was wearing leg braces at the time because her feet turned outwards and couldn’t support her body properly. She was also very skinny. I remember she was walking kind of like a robot. I have my wife to thank because she was the one who trained her intensively. When she was growing up I was like the “good cop”, playing good daddy, spoiling my daughter every chance I got. And if she said she was too tired to walk, I wouldn’t force her.

How did you benefit from the health care system in the US where your daughter was born?

When my daughter was born, the case management system in the US was immediately notified of her condition. Later, we met up with a case manager, who worked under an NGO called the Regional Center of the East Bay and was responsible for identifying our needs. The manager was not a direct service provider but only managed our case. At first, we were in and out of hospital. But after an assessment, the manager decided that the hospital’s services were not enough for our daughter. So, an occupational therapist was subsequently arranged.

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When my daughter was growing up, the case manager arranged a special child care centre for her. When she was around five years old and it was time for her to go to primary school, the case manager put us in touch with one of the mainstream schools in our area. We had a conference with the case manager and school staff before she started her primary education to make sure they knew our needs and our daughter’s condition.

She was put in a special class, with courses tailor-made for children with mental challenges. The class environment was very pleasant. And because the physical condition of every pupil was different, the school schedule was rather flexible, allowing students to come in later or leave earlier if necessary. Their academic performance was not the top priority.

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The case manager also noticed that since we were so busy taking care of our daughter, we barely had time to ourselves such as going out to watch a film. This case manager and his NGO tried to hire a babysitter for us so that my wife and I could have some alone time. But we ended up asking our neighbour to help and the NGO paid for her service.

How is support for people with mental challenges in the US different from what’s offered in Hong Kong?

The main advantage of the US system is that the case manager’s authority is not bound by any government department. When I needed to find a school for my daughter, the case manager would deal with the education sector directly. When I looked for health care support, the case manager would go to the medical sector. The case manager could mobilise resources across different departments and take care of the needs of the whole family, not just the patient. Once assigned a case, the case manager will follow the patient for the rest of their life.

The main function of case management is to be able to break down departmental barriers
Fernando Cheung, lawmaker

The main problem in Hong Kong is that every department seems to act on their own free will. There is a lack of coordination across the board. We do have two case management systems here – one for those with mental illness and another for mental wellness – but they can only mobilise resources within their own organisation or department. To me that’s a contradictory approach because the main function of case management is to be able to break down departmental barriers.

Why did you and your wife decide to have a third child after what had happened to your second one?

The third child was actually planned although we were pretty concerned when my wife was pregnant. But we had consulted doctors who reassured us there were no genetic problems, and the odds of having another intellectually disabled child would not be any higher than usual.

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We planned our third child because we didn’t want our son to bear the sole responsibility of taking care of his mentally challenged sister. We wanted someone in the family to share his burden. Also, we wanted to give him a playmate when he was little. But I am not totally sure it was fair to our youngest child.

Now that your children are grown, what are your concerns?

I am already 60 years old. I am worried about what will happen to my older daughter when I am too old to take care of her. Even worse, let’s say 10 years from now, what if I am gone, then who’s going to look after her? That scenario is very worrying.

What do you and your family usually do in your free time?

We like staying and chilling where we live, the southern district of Hong Kong. We especially like going to Stanley and Repulse Bay. I like how spacious the district is, and it reminds me of the US.

Which was the last movie you watched with your wife?

The Greatest Showman. My daughter and I both like watching musicals.

Who is your favourite singer?

Canto-pop singer George Lam Chi-cheung. He has his own style and character in his music. He really is being himself when he is singing.

Was being a social worker a dream job when you were a child?

Yes. I wanted to be a social worker since I was a secondary school student. I was mostly involved in volunteer work back then, which I found very fulfilling. People also recognise this kind of profession. I feel very satisfied when I am able to help other people. Not to mention I can also get paid for it.

What is your favourite cuisine?

I like eating Western food, such as pasta and cheese. Italian and Indian are my favourite.

Who inspired you the most in your career?

I read a lot about existentialism (a philosophy that emphasises individual existence, freedom and choice). And I really admire two French philosophers, Albert Camus and Jean Paul Sartre. Indian activist Mahatma Gandhi influenced me a lot too.