Creating awareness about physical disability, one at a time
Diagnosed with muscular dystrophy at 19, she wants to educate S'poreans on what wheelchair users go through
This National Day, we celebrate with 16 stories of people who overcame adversity to give back to society. Read their stories and watch the videos at tnp.sg/ndp2016
As a child, Miss Xu Shumin walked on tiptoes.
"Nobody thought much of it or that it was strange," the 34-year-old assistant support officersaid.
But when she was 13, her legs started getting weaker.
"My parents took me to several doctors, but they could not give us an accurate diagnosis as to why my legs were wobbly and weak," she said.
Attempting the stairs became increasingly difficult.
"I remember how, while taking the public bus one day, I was slow in boarding and the driver told me harshly that I should take a taxi instead. It was upsetting," Miss Xu said.
She was eventually diagnosed with muscular dystrophy at 19.
An aunt had introduced her to a specialist at the National Neuroscience Institute. There, they did several tests and performed a muscle biopsy.
Muscular dystrophy causes progressive weakness and loss of muscle mass because the abnormal genes interfere with the production of proteins needed to form healthy muscle. Although there is no cure, medication and therapy can help manage the symptoms and slow the disease's progress.
"My parents were in denial. They had never heard of muscular dystrophy and wanted to seek a second opinion and alternative treatment," said Miss Xu, who was angry and sad at the news.
'GET ON WITH IT'
"The doctors told me that I would continue to weaken. In my mind I was thinking, 'How can that be? I have my whole life ahead of me'," she recalled.
"The next day, I realised that it was another day. I had to go on with my life. I could not let this stop me from living. That was when I picked myself up, dusted myself off and told myself to 'get on with it'."
She started relying on a wheelchair when she turned 25.
"My legs had become so weak that I could no longer stand. My arms had also weakened," she said.
Refusing to give up her independence, Miss Xu, with aid from the SPD (formerly known as the Society for the Physically Disabled) and Tote Board, was determined to work - first at a bank, and when she became weaker, at an accounting solution company, working from home providing first level support for software issues.
Her boss, Mr C.K. Wong, called her a "can-do person".
"Whatever assignment we dished out to her, she would do her best and the results were never disappointing," he said.
Realising that not everyone understands what a wheelchair user goes through every day, Miss Xu invites her able-bodied friends to join her whenever she goes to the Muscular Dystrophy Association Singapore to volunteer.
"It all started when I went for a meal with a classmate. We had to wait for half an hour for the lift because no one wanted to step out to allow my wheelchair in," she said.
"Having been through that first-hand with me, my friend will now step out to allow a disabled person into the lift."
At a recent flag day, Miss Xu took her niece along.
"I tell myself that people stare or point because they do not understand, but if I were to help educate them one at a time, soon the community would be mindful of the physically disabled and be more considerate," she said.
TNP SPIRIT OF 16 GIVINGBACK
The beneficiary is Muscular Dystrophy Association (Singapore)
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