PETALING JAYA: When you think of polio, you may imagine a once-deadly virus, a disease of the past.
And you wouldn’t be wrong. The poliovirus that caused one of the world’s most feared diseases, polio, was eradicated in Malaysia and in most parts of the world in the early 20th century thanks to vaccines.
The highly contagious poliovirus would rapidly invade the spinal cord, causing paralysis within hours. It was infants and young children who were most at risk.
Yet World Polio Day is a reminder that while the disease is history for most, some are constantly reminded of how it has permanently altered their lives.
Among these are polio survivors Christine Lee Soon Kup and Naziaty Mohd Yaacob.
Lee, who contracted the virus as an infant could only start her education at age eight after being rejected by many schools when she was younger.
“My childhood days were terrible. I couldn’t join PE, I couldn’t exercise, but the worst part was that the school had no accessible toilet,” she told FMT Lifestyle. “So, I couldn’t drink or eat like everybody else.”
Despite her delayed entry into school, Lee quickly caught up, even skipping multiple grades. Still, her education was fraught with challenges.
“After primary school, my parents thought very hard about where to send me next,” she explained. “They managed to enrol me in a school, but it was very far away from home, 28 miles (45 km) away. Buses weren’t accessible at all, so every morning, my mother had to carry me on her back.”
Meanwhile, Naziaty, 61, was paralysed in her left leg after contracting the disease when she was three years old. And just like Lee, Naziaty faced similar challenges during her childhood. However, her primary concern now is the uncertainty about how the illness will affect her physical state as she grows older.
“Polio is a forgotten illness. And so, for survivors, what are we going to do? We find information from others older than us with lived experiences,” said Naziaty.
Naziaty found the pandemic particularly daunting, unsure of how Covid-19 might affect her. That’s when she turned to support from a Facebook group of just a few thousand polio survivors worldwide.
“So, I’ll ask them, what happens when you’re 70? What happens now when you’re 80? At the moment, if something weird happens to me, I go to find out more from these people because my doctors aren’t able to tell me,” she said.
Despite facing numerous hurdles, both Lee and Naziaty did not let their disabilities stop them from living their lives to the fullest.
Lee, now retired, became a remisier. Naziaty, who was trained as an architect, is also a PhD holder.
Yet, their most remarkable accomplishment lies in their activism, as both Lee and Naziaty are prominent figures in the battle for disability rights in Malaysia.
In fact, back in 1994, Lee was one of the few OKU members who protested against the ban on wheelchair-bound passengers from using the new LRT system.
“That was the first LRT system in Malaysia, and everyone was so excited, especially us, the disabled,” Lee shared, adding that until that point, public transport in Malaysia was inaccessible for persons with disabilities.
“We all finally had some hope but, the news of the ban, it just broke our hearts.” Lee added, “This was so important, we had been waiting for this for many years, yet they barred us from using the system.”
However, following the street protests that Lee and other activists participated in, the second phase of the LRT became wheelchair-accessible, leaving a historic mark and ushering in a life-altering change for individuals like Lee and Naziaty in Malaysia for years to come.
“If we don’t speak up for ourselves, nobody speaks up for us. You can wait until the cows come home, nothing will change,” Lee stressed.
While acknowledging some positive changes over time, these women have shown that a simple glance at the cities’ pavements alone explicitly reveals that there is still a long way to go in ensuring equal opportunities for all.
Naziaty shared: “We just want to live independently, like everyone else.”