PUTRAJAYA, Nov 8 — “Like you”. “For you” (Seperti Anda. Demi Anda) are two phrases on election campaign flyers by Noraishah Mydin Abdul-Aziz, a researcher with spina bifida who is running for Putrajaya in a wheelchair.
In an interview with CodeBlue, the 47-year-old former senior lecturer at Universiti Malaya’s medical faculty turned Pakatan Harapan (PH) election candidate stressed that health and quality of life are everyone’s priority.
“I’m not speaking from an OKU (people with disabilities) activist standpoint. I’ve already mentioned many times, I think, in multiple talks, that the health system is not all-encompassing,” said Noraishah Mydin, who was fielded by PKR in the 15th general election.
“And because the health system is not all-encompassing, even able-bodied – relatively, they should be healthy people with better quality of life – do not seem to be living as long as they should.”
Last Saturday, Noraishah Mydin, during a walkabout to speak with voters, visited the family of a man who recently died at age 59.
The scientist, who has done research on neural tube defects (NTDs), was frustrated by how the man had neglected to take preventive measures to avoid chronic conditions like hypertension and diabetes. He subsequently passed away due to complications of these non-communicable diseases (NCDs).
To properly address her vision for averting such preventable deaths, Noraishah Mydin looks back to her work with her support group, Malaysia Neural Tube Defects, which focuses on helping children and people with the disease attain a higher quality of life.
Noraishah Mydin remembered combing through mountainous records of patient data that had been left to languish in hospitals, so that she could improve the quality of life of children and people like her.
The Putrajaya hopeful said she was able to “quite easily” obtain all the data she needed for spina bifida, a condition that affects the spine and is usually apparent at birth, due to government officers at certain hospitals who had managed to digitise and extract hard copies of anonymised patient data despite poor infrastructure.
“So, what I’m trying to express here is that, if I can improve the quality of life of spina bifida patients, I can very well do that for everyone else, for the whole entire country, not just for people with disabilities,” Noraishah Mydin told CodeBlue.
“But it is inherently critical for people with disabilities because we cannot keep on issuing disability cards without understanding our population better.
“And it’s terrible that it is still classified under these outdated seven classifications of how physically disabled you are, how blind you are, how deaf you are. It cannot be based on that. It has to be based on the medical condition.”
Eliminate Lip Service In Departments, Enforce Existing Laws
PH’s GE15 manifesto proposed setting up an OKU department or agency to coordinate assistance and allocation from various ministries.
Noraishah Mydin stated that if she were to be put in charge of such a department, the first thing she would do is to get rid of the “poyo” (lame) people who give lip service and are “just repeating the same narrative that’s been there for the better part of our lives”.
This, she said, is the first step to creating a fair and equitable country whose riches can be enjoyed by all.
Noraishah Mydin, however, said that setting up a department specifically for the OKU should be addressed at a later time, and that the main issue right now is the enforcement of the existing Persons With Disabilities Act 2008 (OKU Act).
“We should be very grateful that we do have an OKU Act, but we should all start with a very simple thing: that OKU Act needs to be enforceable.
“It needs to be enforceable. There needs to be checks and balances. If it’s not there, what’s the point of a legislation without any bite to it? So, that’s the first thing that Pakatan has to make sure happens. Let’s not talk about departments yet. Let’s just talk about getting the power there first.”
When asked about Universal Design (UD) standards that PH has laid out in its manifesto, Noraishah Mydin underscored the same problem of enforcement of OKU-friendly design for buildings and public transportation.
UD is the design composition of an environment that facilitates the access and understanding of all people, regardless of their age, size, ability, or disability.
Drawing upon her own experiences, Noraishah Mydin recalled the time when she stayed at a certain hotel in Port Dickson, Negeri Sembilan, after the passage of the OKU Act.
Noraishah Mydin remembered how she could not even enjoy dinner with her family, as the hotel was not wheelchair accessible, and how she had only received a response from the hotel because of her “Dr” title and accolades. But even then, the hotel had only called to tell her that it had complied with building by-laws.
In the end, all this meant to Noraishah Mydin was that local enforcement officers had not done their jobs.
‘Kayangan’ OKUs Disenfranchise Their Own People
“The thing is, the people who have made people with disabilities the most disadvantaged in this country are people with disabilities themselves,” Noraishah Mydin said.
Noraishah Mydin, who uses a motorised wheelchair, claimed that some members of the OKU community have self-appointed themselves as the “kayangan of the OKUs”, using a term that is roughly translated in English to “bourgeois”, or upper class.
“It’s so unbelievably stupid having Jawatankuasa Pemandu OKU, for example. Those whom I shall not name are appointed and then they go around at airports and are like, ‘Oh, you know, this wheelchair cannot go up the travellator.’ Like, you know, just because you have a shitty wheelchair doesn’t mean that the rest of us have shitty wheelchairs too. I think my wheelchair is great. It can take on anything, really.”Noraishah Mydin Abdul-Aziz, Pakatan Harapan candidate for Putrajaya
“So honestly, this Jawatankuasa Pemandu is having this extra layer of kayangan lording over the other OKUs does not work. If I get into government, or even if I don’t get into government, don’t think I will, you know, shut the f**k up. I will not.”
For Noraishah Mydin, what Malaysia as a nation must do is “to take charge of our country’s health.” For that to happen, the crucial thing Malaysians need is education.
“Malaysians have to wake up because while we are still busy talking about race-based politics, while we are still busy subjugating people whom we can subjugate, irrespective of who or what we are and bodeking left, right, and centre and kissing arse, and you know, propagating patronage, what is happening? Our people are suffering.”
Noraishah Mydin lamented the lack of public discourse in Malaysia on important issues like a woman’s bodily autonomy and the negligence of the medical fraternity. Abortion access has been a key issue in the United States’ midterm elections, particularly for the Democrats, following the Supreme Court’s decision to overturn the landmark Roe v. Wade ruling on abortion rights.
“Roe v. Wade was reversed, and there was no response from anyone in Malaysia. I haven’t seen even any of the NGOs (non-governmental organisations) or whatever,” Noraishah Mydin said.
“A woman does not have the right to terminate her pregnancy, but what happens when you give birth to a child with birth defects? What happens? Is our country prepared to look after this child born with birth defects? If you cannot look after a person, if you can’t look after the child, shouldn’t you give the freedom to the mother to terminate the pregnancy, if she so wishes?”
“But our people are so poorly educated because — I’ve already published on this – if women can be exposed to antibiotics prior to a pregnancy and after pregnancy from clinics, giving out, prescribing antifolates quite easily, and they are not told what they are taking… they are giving birth to children with birth defects.”
CodeBlue previously reported obstetrician and gynaecologist (O&G) specialists as saying that abortion is actually legal in Malaysia, contrary to public perception that has led to poor access to safe abortion. Section 312 of the Penal Code provides for safe abortion to save a woman’s life and to preserve a woman’s physical and mental health.
Why Focus On My Tudung Instead Of More Important Women’s Issues?
“Do you know what I really want? What I really want is that when I die, I would like all the children whom I’ve helped to gain a better life sing, ‘Hallelujah, hallelujah, hallelujah, hallelujah’ with the angels. That is what I like. Maybe there’s a chorus of ‘meow, meow, meow’ for all the cats I’ve saved along the years as well,” Noraishah Mydin said.
Noraishah Mydin, who wears a loose headscarf, complained about the country’s incessant focus on Muslim women’s tudung.
“The level of intelligence in this country is so poor that the women whom I’m trying to protect, their daughters’, their granddaughters’ wombs, are still f**king busy trying to put my hair back into my bloody f**king tudung,” she said, using swear words.
“This is connected to the dumbing down of the people. Do you see what I mean? It’s the same way as this campaign. Why are people so obsessed about sticking my hair into my tudung when you have so many more important questions to handle as women in this country?”Noraishah Mydin Abdul-Aziz, Pakatan Harapan candidate for Putrajaya
Noraishah Mydin further illustrated her point of how poorly educated the nation is when she highlighted the sad state of affairs for Malaysian nurses and police officers, the two most important frontliners to her.
She lamented that nurses and police officers are paid a “pittance” and are forced to have someone else care for their children because they are too busy caring for other people.
“I hope this country grows up because so many people are suffering.”
Noraishah Mydin is contesting Putrajaya against heavyweights Tengku Adnan Tengku Mansor from Umno, who has held the federal seat for four terms for Barisan Nasional since 2004 when the constituency was created, as well as former Education Minister Mohd Radzi Jidin from Perikatan Nasional. Muhd Rosli Ramli (GTA-Pejuang) and two independent candidates are running as well.