‘Why take on the extra burden?’: Parents with disabilities tackle misconceptions about raising their own families
SINGAPORE: Gingerly walking across the glossy tiles of a gynaecology clinic, Mdm Margaret See was arriving for her first ultrasound scan.
With her husband trailing just behind, Mdm See, who was diagnosed with polio at the age of one, was using arm crutches to support herself.
Unknown to the then 30-year-old, who was five months pregnant, was some water spilled ahead in her path on the clinic floor.
As her crutches made contact with the liquid, the metal structures immediately went gliding sideways, leaving her falling stomach-first to the ground.
“What could I have done? I just fall,” said Mdm See, recalling the horror in her doctor’s eyes as he witnessed the incident.
This wasn’t the first time Mdm See had fallen, and it wouldn’t be her last either.
“We are prone fallers,” said Mdm See, referring to polio patients. “A little bit of water, the crutches will (slide). Sure one. So many times I fall, fall, fall.”
Now 62, Mdm See has sailed through two pregnancies, countless falls and miraculously, zero miscarriages.
Beaming as the topic of her son and daughter was brought up, Mdm See said it seemed like a lifetime ago when she thought she would never have children.
‘NOT EASY’ - BUT NOT IMPOSSIBLE - TO FIND A PARTNER
Spending her younger years in a home for the disabled, Mdm See said that “only 1 per cent” of her childhood friends eventually got married.
“I was well prepared that I might not have (children). Because getting a partner is considered very lucky in those days,” she said.
“For a girl (like me), to have an abled husband, is not an easy thing.”
But love found its way in Mdm See’s life during a church event when she was 23. “I was in the choir and he was a photographer,” she giggled.
Some of her husband’s family members however were initially unsure on welcoming Mdm See. One relative exclaimed: “Why (her)? The whole world, (there are) so many (other) women!”
Such a reaction is unsurprising, given that around 64 per cent of people in Singapore are willing to share public spaces with people with disabilities - but not willing to interact with them, according to a Lien Foundation report.
In an email to CNA, Disabled People’s Association executive director Dr Marissa Lee Medjeral-Mills said that “there is very little awareness” that those with disabilities have a right to have family and children.
“Ignoring the sexual and reproductive rights of persons with disabilities - especially women - may lead to people missing out on the opportunity to have relationships and children,” she said.
'WHY DO YOU STILL WANT TO GET MARRIED?'
For 54-year-old Philip Ang, who has spinal muscular atrophy, society’s lack of understanding of those with disabilities has also led to some disconcerting questions.
“I’ve been asked: ‘Why do you still want to get married and have children despite … (not being able to) take care of yourself? Why do you still want to take on this extra burden?”
Mr Ang, who has a son and daughter, had simply answered: “The joy (of parenthood) is greater than my challenges.”
“As a disabled person of course it’s much harder to find a partner - and that’s only the first hurdle,” admitted the senior finance executive at SPD.
But it only felt natural to want to have a family and settle down, explained Mr Ang, who met his wife, a therapist, at a home he was residing in.
“Many of them (in the home) hope to find a partner, settle down, get married - but it’s not easy. Not many will have this opportunity.”
Before having children, doctors had told Mr Ang there was a small risk his children could have the gene which carried his disability.
But Mr Ang and his wife decided to take the leap of faith, and in 2009 they had a healthy boy named Elnathan, who was named after the Hebrew phrase 'God has given'.
Five years later came another child. This time, a girl - Eliyanah.
“It means God has given me again,” said Mr Ang with a huge grin.
TYPICAL PARENTING CHALLENGES, BUT WITH ADAPTATION
Some of the myths regarding those with disabilities are that they are not able to give their children the best quality of life or be a good caregiver, noted Dr Medjeral-Mills.
But in fact, parents with disabilities face the same challenges as parents without disabilities.
“Worries about their children’s welfare and health, challenges in navigating parenthood without having all the answers … All parents go through this,” she said.
One such parent is Mdm Neo Geok Cheong.
When Mdm Neo discovered that both of her children were deaf, like her and her husband, she took it in stride. “It didn’t matter that they were deaf,” signed the 69-year-old via interpreters from the Singapore Association of the Deaf.
“I was just worried about their education … I wasn’t sure how to teach them and had to send them to a school (for the deaf) to make sure they received proper education.”
Mdm Neo, who grew up with five other siblings who were also deaf, said her disability never deterred her from her role as a mother.
“I just wanted to look after my kids,” she said simply.
Mdm See and Mr Ang also echo the same sentiments, though they admit they have had to adapt to certain chores.
Step into Mdm See’s house, for example, and there is not much furnishing.
This is because as soon as she reaches home and removes her leg calipers, which is a type of brace, she needs the space to “crawl from one room to another”.
Without the calipers, Mdm See mostly uses her upper body to move around while doing her chores.
“In my house, my children didn’t sleep in a baby cot. Everything is on the floor,” said Mdm See, who describes her house as minimal “Korean-style”.
Mr Ang, who is in a motorised wheelchair, also has to find alternative ways to discipline his children.
“I will just remove their privileges - cannot use iPad, cannot watch YouTube.
Mr Ang’s condition, which is linked to the degeneration of muscles, has caused his limbs to be weakened.
“Especially for my case, I cannot use cane … Sometimes I would tell my son, you should be thankful I cannot spank you,” he laughed.
PEOPLE WITH DISABILITIES DON’T NEED PITY
In her email to CNA, Dr Medjeral-Mills stressed that the disability community does not need or want pity.
“The charity model of disability should be left in the past,” she said. "(This is) especially when we can see examples of persons with disabilities who are thriving because they have access to appropriate accommodations and good support networks."
They should be seen as equal members of a diverse Singapore society, she added.
For Mdm Neo, she has had to hold her head high whenever she received negative comments about her family being deaf.
“There were people making fun of me saying, ‘oh because I’m stupid, my kids will be stupid as well’,” said the housewife.
“It doesn’t matter if people say we are not smart, not good, we don’t do well, it doesn’t matter, because right now, my kids are doing very well,” said Mdm Neo triumphantly.
Mdm See, who is also no stranger to receiving stares, said she has become “immune” to such negativity.
While it might be tempting to look at the able-bodied people around her and become a bitter person, Mdm See is anything but.
She holds on firmly to this philosophy of gratitude: “Don’t look at those above you, but those below you.”
This is why Mdm See - despite all the bruises and pain - has the strength to get up every single time she falls.