Next step – a nation that cares for all
May 9 should mark the beginning of a new era for every Malaysian, including people with disabilities and rare disorders.
EXACTLY 22 days ago, Malaysia voted for change. Yes, it has been that many days since Pakatan Harapan became the coalition in power – and what a ride it has been so far!
We’re now just over one-fifth of the way into the new government’s first 100 days and we are seeing significant changes as it cleans house and begins setting things right.
Some of the developments were unthinkable just a month ago. Among them are a broad investigation into alleged wrongdoings involving 1Malaysia Development Bhd, liberalisation of the press and the formation of a more racially inclusive Cabinet.
One change I’m really happy about is that more Malaysians are appealing to Deputy Prime Minister Datuk Seri Wan Azizah Wan Ismail for fundamental amendments to the laws that protect women from abuse and harm.
After all, she is also the Women and Family Development Minister, and that in itself is something to be happy about as it could very well give the ministry the punch it needs to put through the right changes.
Having said that, I can’t help but feel that there is one struggle that might be forgotten in the clamour for her attention and support – the fight for a Malaysia that is fair to those living with disabilities or rare disorders that can and do create disabilities or other life challenges.
This concern drove me to speak to friends within the community of Malaysians with disabilities and rare disorders to hear them out on what changes they want to see in the weeks, months and years to come.
The first to share her thoughts was Rachel Siew, who urged the Women and Family Development Ministry to work with the Education Ministry to get children with disabilities into mainstream classrooms.
“Children with disabilities must be mainstreamed with able-bodied children, and I am speaking from experience here.
“It taught me from an early age to accept that I was different when compared to others and to find ways to adapt, overcome and succeed,” said Siew, who lives with Morquio syndrome, a rare genetic disorder in which the body is unable to break down sugar chains that help build bone, cartilage, cornea, skin and connective tissue.
Siew also urged the ministry to work together with the Health Ministry to help those who are fighting Morquio like her, as well as others who are living with similar disorders.
“In Budget 2018, RM10mil was allocated to patients with rare dis- orders, especially those who are undergoing Enzyme Replacement Therapy, which is a lifelong treatment. However, the new government froze the funds when they took over on the basis that they wanted to review the Budget allocations of the previous government.
“It was really painful to hear this, and I ask the new government to maintain the allocation or even better, to add to the funding,” she said.
I can definitely get behind her plea and her work to raise funds for her health, as her treatment costs RM1.6mil per year.
I also spoke to Kuala Lumpur and Selangor Albinism Association founder Maizan Mohd Salleh, who also urged the Government to place children with disabilities in class- rooms with able-bodied children.
“As far as possible, we must include these students in mainstream classes. This can have far-reaching effects, as it can stimulate compassion and empathy among students and create a culture that considers and includes people with disabilities instead of one that looks down on us with arrogance,” said Maizan.
This is a point I agree with completely, as this can help break many Malaysians’ stereotypes about people with disabilities, especially when it comes to how “useful” the community is and how such people can contribute to nation-building.
The third person I spoke to, Phelan McDermid Syndrome Foundation Southeast Asia Regional Representative Nadiah Hanim, also urged the Government (including the Women and Family Development Ministry) to work with all stakeholders when devising concrete plans that truly help Malaysians with disabilities and rare disorders.
“My key recommendation is that all efforts should include engagement with actual stakeholder groups throughout. Plans should be integrated and we should continue to communicate with each other all the way through.
“Be cohesive, comprehensive and work together. We need an integrat- ed intervention approach that gives cradle-to-grave support,” said Nadiah.
She added that any policy to help should be comprehensive.
“There is a lot of focus on early intervention programmes, which is good. But need to also think about adolescent care, respite for caregivers, bridging, community and institutional care,” said Nadiah.
All in all, it looks like the relevant ministries need to put their heads together and get to work to help Malaysians with disabilities.
“And this is something I really think they should so that the Pakatan Harapan government can be a government that truly cares about all Malaysians. After all, people with disabilities are Malaysians too and are as worthy as you or me of being included in the fabric of our nation.
Ultimately, I do hope that we can all rally and support their cry for their needs to be considered, for them to be included as we build a better Malaysia together. Looking at the massive step forward that we took as a rakyat on May 9, I’d like to think we can.
My key recommendation is that all efforts should include engagement with actual stakeholder groups throughout. Nadiah Hanim
Senior writer Tan Yi Liang’s In Your Face aims to prove that people have more positive power in their hands than they realise, and to challenge them.