KUALA LUMPUR, Oct 27 – PKR is fielding spina bifida researcher and patient advocate Noraishah Mydin Abdul Aziz in the 15th general election, likely the first person with disabilities to run for office in Malaysia.
Noraishah, a 47-year-old senior lecturer at the parasitology department in Universiti Malaya’s medical faculty, was born with spina bifida, a condition that affects the spine and is usually apparent at birth. Spina bifida is a type of neural tube defect (NTD).
The scientist, who said that she is the only person in Malaysia with functioning laboratories on NTDs, after doing a PhD at University of London in medical biotechnology, specialising in developmental neurobiology, and publishing regularly on NTDs.
PKR president Anwar Ibrahim, who announced Noraishah’s candidacy yesterday along with six other PKR candidates, said that Noraishah would run for a parliamentary constituency in the Federal Territories, but did not name her seat.
A man at the press conference, believed to be a party supporter, reportedly heckled Noraishah and PKR, saying; “You’re still taking all these government servants to be politicians again, especially at universities. Go and do research. Don’t be involved in politics.”
Noraishah immediately delivered an impassioned speech on why she was running for public office, as she explained her patient journey.
“All spina bifida patients have problems peeing and defecating. This is not something to be embarrassed about. This is the reality of our daily life,” Noraishah said.
The spina bifida patient advocate pointed out that she was rejected as a child from kindergarten and that until today, she helps families write letters to get their children with spina bifida into mainstream education.
Noraishah – who was supervised by Prof Andrew Copp and Prof Nicholas Green at the University College of London on NTDs – complained that her local cohort of researchers has been denied “every single” Ministry of Higher Education grant for their work on NTD, including grants for fundamental research, prototype research, translational research, and long-term research.
“The only thing I want to do is to help children like me walk. Walk, ladies and gentlemen. All parents want their children to walk, to be independent, to go to school so that they don’t have to answer questions from doctors or those who don’t want to sign their OKU card until when you know your child will be OKU forever.”
She said that even though it’s 2022, her children still cannot go to work and she has been unable to get research funding.
“So, I am willing to let go of my job as a civil servant to be here today,” Noraishah said. “Today is the day people with disabilities in Malaysia get a fair chance.”
PKR deputy president Rafizi Ramli, who was also at the press conference, explained his party’s decision to field not just fresh faces in the general election, but also professionals rather than full-time politicians.
He highlighted increased public cynicism over the past two years towards politicians and political parties.
“Some teething issues in society can no longer be a token discourse, for example, issues of the disabled community in this country. In the past, it’s just about appointing a senator to represent so-called different, different groups,” Rafizi said.
“I can’t remember any major political parties that had actually fielded a disabled person in the mainstream and on the basis of merit. In the case of Dr Noraishah, I don’t think it’s a gamble.
“One thing that I think PKR has been able to do over the past 20 years is that we have always been able to lead in terms of pushing the limits.”
Noraishah, on Twitter today, said she has been working in UM as a senior lecturer since September 1, 2007. According to Noraishah, UM’s Department of Parasitology adopted her and granted her labs as her Master of Science degree from Universiti Kebangsaan Malaysia was on molecular entomology.
“The Department of Parasitology UM is the most inclusive department in all of the Faculty of Medicine at UM. I will miss my department.
“I spent all of my research funding which I obtained during the High Impact Research days of UM on my three labs in the Department of Parasitology. Therefore I have functioning labs on neural tube defects in the Department of Parasitology.
“It is not ideal but I still get work done which are published in respectable journals. My published papers are widely read and are cited regularly.
“I still maintain a fantastic and robust scientific relationship with my mentor @NickDeGreene from UCL. Nick is very much a part of my Malaysian group of researchers. He is my Obi Wan Kenobi. I try very, very hard to champion good science for the benefit of the world,” Noraishah tweeted.
“I am forced to opt for an optional retirement and I cried the day all the way to UM after I expressed my willingness to join Keadilan after being offered by Keadilan that I will be fielded for GE15. It is not easy to leave my labs and my students.
“What I do is for Malaysia. I realise without a shadow of a doubt that political will is needed now not just for Malaysian spina bifidas, but for all of us with serious medical conditions.”
