Dwarfism: Challenges, how Govt can help
Published on: Sunday, March 17, 2024
By: Lorena Binisol
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Man Mohammad struggles to feed his family. He does odd jobs like selling fruits outside supermarkets (left pic). Emy uses a standing stool provided by her employer to get things done at her workplace (right pic).
Emy and Simon hoped people in similar predicaments would be able to live with their heads held high, as physical appearances do not limit what they can achieve despite societal barriers.
Emy, 35, of Kg Inuman, Beaufort, stands at 98cm and weighs 26kg. A qualified accountant attached with UMS Investment Holdings Sdn Bhd (UMS subsidiary company) since 2021, Emy said nothing could stop her from achieving her dreams.
“Although I was born this way, it didn’t deprive me of continuing my studies.
“Our intellectual capability is the same as the average people. We have dreams and desires, too,” she said.
Emy is financially-independent and owns a vehicle which was modified to suit her needs.
She lamented the lack of accessible facilities in public. With her minute size, she is almost “invisible” in the crowds and most of the time needed assistance from her friends.
“There are a lot of facilities not meant for people like me. For example, the elevator was designed for people with normal height. So, I can’t use the elevator, as I cannot reach the buttons,” she said.
While studying at UMS, she was fortunate that certain privileges were given such as her accommodation was on the ground floor and transportation was provided to and fro campus and her accommodation.
At her workplace, she was fortunate to have an accommodative employer who provided facilities for people with special needs.
“When I need to take files, I just use a portable stool so I can reach the items.
“When I need to take drinking water, there is a lower level water dispensing area, especially designed for me,” she said.
The main entrance to her office was designed with two sets of “press” buttons, with the lower level created for her.
Meanwhile, she expressed regret over lack of facilities for people with special needs in public spaces.
She said the relevant authorities should consider the plight of people like her.
“The meaning of an inclusive society will be even more realistic when all people including the minorities are able to enjoy the facilities prepared by the government,” she said.
Noney Gondolos, 54, of Kg Rangalau, Kota Belud, had a traumatic experience growing up as someone with special needs.
The stigma was implanted in her as a kid. However, over the years, she learned that she needed to “fight” for herself by building her own self-confidence.
The 91.44cm songstress was determined to improve her skills in singing and facial makeup services.
She is married and blessed with two sons, Hassander, 21, and Hallysander, 18. She delivered them through c-section and they were born normal.
Noney uses her singing skills to make a living (left pic). Simon recently opened a workshop with the help of his family.
Noney and her sons Hassander and Hallysander.
“After some time, I got used to the ‘bullying’ sentiment. To me it was part of growing up. Most importantly, I didn’t give up and strive to better myself each day.”
Simon Voo, 49, from Papar stands at 140cm, and like Emy, was the only one with the disability among four siblings.
With the help of family members, he opened a workshop in Petronas station, Petronas Auto Service Centre, in 2021.
“My father was a mechanic and I learned the skills from him. I worked for others before and it gave me a good work experience and confidence, hence, we opened our own workshop.
Emy and Simon
“Of course, the starting point was the most difficult. I felt the need to build trust with the customers,” he said, adding that being skilful in his work helped build customers’ confidence.
“We are thankful our business is picking up. There were social influencers as well as media folk from RTM who interviewed us.”
He advised that whatever skills one has, it is the perseverance and patience that would make one stay longer in the business.
“Anything you do, if you put your heart into it, don’t worry about what others say, just go on and do it. One day you will achieve your dream,” he said, adding that a positive mindset could help overcome any challenges.
However, not evreyone with the dwarfism condition is as fortunate. Man Mohammad, 50, is struggling to feed his seven children. He is doing odd jobs including selling fruits to get by.
He lives in Kg Sinulihan, Inanam, with his wife of normal stature and children. He was originally from Lahad Datu.
Teresa Alberto, a qualified trainer and motivator, opined that small people, just like everyone else, could develop their skills and excel in any fields of their choice to earn a living.
First of all, they need to build self-confidence, she said.
They need to adapt to the world and develop their own awareness that they belong to the community, she stressed.
She said it takes two sides to commit – firstly, the public need to be educated that there are “others” in the community who deserve to be in society despite the differences.
Secondly, greater awareness to the small people. The society must view small people as just as important as the rest of society and that they are able to contribute in the workforce.
“They are the minority, but all the same they must build their own self-confidence and self-esteem simply because they too are people, and that no matter what size they are, they have to come out into the community to mix with the ordinary people.
It is because they shy away, they are deprived of many things like current information, which they ought to know so that they are aware of current events.
So, it takes both sides to learn from one another, to accept everyone as they are. Everyone deserves to be in the community together. That’s all it takes.
By allowing that negativity in them, they are permitting the society to be as such, the bullies or looking down on them.
“I understand their challenges and predicament. Even normal people like us get bullied in the workplace or anywhere else.
“Small people, because of their physical state, they have low self-esteem. They’re also often on the receiving end of unfriendly jibes due to their physical appearance.
“So, they need to be out and get necessary help, such as to reach out to the public and tell themselves that they are part of the community, they have same intelligence as normal people and so on.”
Teresa strongly suggested NGOs and authorities to organise more forums, seminars, writing projects to raise awareness on people with disabilities.
“The minorities have to build a sense of belonging and say, ‘I belong to this world, I was born here, just like anyone else’.
“They need to pick up their self-confidence and self-esteem. The public must allow them to excel in whatever they desire to achieve.”
She added that it is for the government to analyse the needs of such people and bring about a more inclusive society by giving the minorities equal opportunities.
“Be compassionate to others, the world needs this at this time”.
Asnah Yusof, President of Sabah Dwarf People Association (PROKESA) which was registered in 2021, hoped more people would register with the association so they could receive assistance.
She said their numbers are relatively small.
It was understood that many of them are still in “hiding” for fear of being looked down on.
“Because of their condition, they have low self-esteem. They need assistance, to get them motivated and face the reality of life. But how do we do that?
“We need to start from our heart, whether we really want to make a difference in their life, whether we really want to help them.
“In order to combat this stigma, we must learn to understand them and continue to raise awareness. We must understand that everyone deserves to part of society,” she said.
Dr Brendon Senagang, a paediatrician, said Achondroplasia (scientific name) is a genetic condition affecting a protein in the body called the fibro-blast growth factor structure.
He said dwarfism is a general term to describe individuals with abnormally short stature for their age.
“This is broad definition. There are a lot of causes and majority is genetic, and other factors are hormonal problems, some children have growth hormone deficiency.
“Certain genetic conditions can also cause Down’s syndrome, Turner’s syndrome and Noonan’s syndrome, among others,” he said.
He said Sabah has one of the highest rates of “short children”. It is mainly due to social, economic or health factors.
From left to right: Dr Brandon, Asnah and Teresa
Achondroplasia is a condition where delay or defect in bone maturation, usually due to genetic mutation in one of the genes – FGFR3.
When these genes become mutated, the child will have delay or defect in growth.
“This gene can be passed from parent to child, however, up to 80pc of the cases can be spontaneous mutation,” said Dr Brandon.
He said it can happen during pregnancy and can be detected through ultrasound.
“So we pick up signs of the disorder during ultrasound scan and follow up the cases from there.
“We don’t have any medication or treatment to cure the disease because it’s genetic.
“Probably in future when gene therapy is available, it will be good news. But today, no even advanced countries have any cure for it.”
He is aware of the stigma and “bullying culture” aimed at people with dwarfism.
There are no studies to say that there is intellectual impairment for people with stunted physical growth.
He said small people are normal adults in terms of thinking and IQ.
He said, however, dwarfism is not well-researched in Malaysia but was delighted that Sabah had formed an association to look after the welfare of small people.
He hoped policymakers could restructure their policies towards a more OKU-friendly society.
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