The Star - 7-12-2021

‘Cuba duduk atas kerusi roda kami’, OKU harap perubahan dilakukan di peringkat dasar

Ramai yang mulakan hidup sebagai seorang normal namun menjadi orang kurang upaya kerana ditimpa kemalangan atau menghidap penyakit.

Danisyah Dalily Dec 3, 2021 8:01 AM

Jayaraj Santraju memegang buku panduan dan tips yang beliau tulis dan jual bagi menyara keluarga.

Jeyaraj Santraju pernah menjadi jurutera mekanikal di Singapura, namun kemalangan di tempat kerja pada 2006 mengubah hidup lelaki itu buat 

Pada hari kemalangan tersebut, Jeyaraj sedang sibuk memasang sebuah mesin yang berukuran tinggi namun secara tiba-tiba beberapa bahagian daripada mesin dengan berat dianggarkan lapan tan jatuh dan terkena bahagian belakang badannya.

Rakan sekerja cepat-cepat membantu, mereka berjaya mengangkat bahagian mesin yang menyebabkan Jeyaraj tersepit dan kemudian menariknya kira-kira 20m dari mesin kerana bimbang bahagian lain juga akan jatuh.

Malangnya, tindakan yang berniat baik menyebabkan tulang belakangnya rosak kekal – ketika rakan-rakannya menarik tubuh lelaki itu, tulang belakangnya patah dan terkehel, merosakkan saraf tunjangnya sekaligus menjadikannya lumpuh separuh badan.

Jeyaraj akhirnya pulih daripada kemalangan tersebut, namun separuh bahagian bawah badannya tidak memiliki deria rasa.

Kesan daripada lumpuh juga menyebabkan dia menghadapi masalah pundi kencing.

Bagi menyelesaikannya, Jeyaraj perlu memakai lampin sepanjang masa.

Pada tahun itu juga, dia pulang ke Malaysia dan bertemu semula dengan isteri dan anaknya di Rawang.

Awalnya, dia sukar menyesuaikan diri dengan keadaan barunya, namun akhirnya Jeyaraj terpaksa menelan hakikat kehidupan barunya yang berkerusi roda.

Jayaraj Santraju seorang OKU ketika ditemui MalaysiaNow di Kampung Sungai Dua Tambahan, Rawang.

Kesan daripada keadaan barunya itu, dia mula memikirkan tentang hak orang kurang upaya (OKU).

Beliau juga turut berkenalan dengan Francis Siva yang merupakan presiden Independent Living and Training Centre Malaysia (ILTC).

Terkadang, lelaki itu ke ILTC untuk menjadi sukarelawan.

Dia juga turut belajar bagaimana untuk berdikari walaupun mengalami kecacatan selain berusaha mencari pendapatan dengan menjual pen serta buku mengenai cara menguruskan kehidupan dari kerusi roda yang ditulis berdasarkan pengalamannya sendiri.

Selepas 16 tahun menjalani hidup sebagai OKU, dia menyedari perbezaan sistematik yang dihadapi golongan sepertinya.

“Di ILTC, kami mahu memastikan tiada OKU diabaikan,” katanya ketika ditemui MalaysiaNow.

“Jika mereka layak terima dana atau bantuan, kami akan pastikan mereka mendapatkannya daripada kerajaan.”

Sempena Hari Orang Kurang Upaya Antarabangsa yang disambut seluruh dunia hari ini, harapan Jeyaraj agar pihak berkuasa menunaikan janji yang mereka berikan.

“Kami tidak mahu janji manis yang hanya tercatat di atas kertas,” katanya.

“Kami mahu tindakan.”

Beberapa masalah

Satu isu yang sering dihadapi OKU ialah kesukaran dalam permohonan Elaun Pekerja OKU atau Epoku.

Menurutnya, permohonan Epoku perlu dikemukakan tiga bulan lebih awal daripada tarikh akhir, jika gagal, elaun tahunan sebanyak RM450 tidak akan diberikan.

Satu lagi masalah yang dihadapi golongan OKU ialah gaji minimum, di mana mereka hanya memperoleh RM1,100 yang disifatkan tidak mencukupi bagi menampung perbelanjaan.

Jayaraj Santraju menunjukkan buku tulisannya mengenai garis panduan dan tips kepada pengguna kerusi roda terutamanya golongan OKU cacat anggota.

Dan jika seorang OKU mendapat gaji lebih dari RM1,500 sebulan, dia tidak lagi layak untuk memohon Epoku.

Bagi Jeyaraj, semua ketetapan itu adalah tidak adil bagi golongan OKU.

“Saya mahu bekerja dan dapat gaji yang baik,” katanya.

“Saya juga ada keluarga untuk diberi makan. Jangan layan kami seperti kanak-kanak.”

Presiden ILTC Siva berkata masalah itu timbul kerana kurangnya pemahaman di pihak kerajaan mengenai masalah yang OKU hadapi.

“Kami sudah minta menteri pembangunan wanita, keluarga dan masyarakat untuk bertemu bagi membincangkan isu di lapangan, namun selepas lapan bulan, kami tidak terima jawapan,” katanya.

“Di Parlimen, timbalan menteri berkata pekerja OKU tidak hadapi sebarang masalah semasa pandemik. Apa yang boleh saya katakan, ada sesuatu yang tidak kena di sini. Mereka jelas tidak memahami masalah yang kami hadapi.”

Pada usia 29 tahun, K Ilavarasi benar-benar memahami masalah yang dibangkitkan Jeyaraj dan Siva itu.

Sewaktu usianya masih kanak-kanak, Ilavarasi didiagnosis memiliki jumlah sel darah putih yang berlebihan.

Sepanjang tempoh itu, bapanya sentiasa membawanya ke janji temu doktor dan mengambil ubat-ubatan.

Bagaimanapun, pada 2006, bapanya mengalami kemalangan dan tiada orang lain dalam keluarganya yang tahu cara menjaga Ilavarasi – bahkan ibunya sendiri.

Dengan keadaan bapanya tidak dapat melakukan apa-apa, dia tidak dapat mengambil ubatnya bagi tempoh yang lama.

Keadaan penyakitnya semakin merosot dan dia akhirnya terpaksa menggunakan kerusi roda.

Ibunya meninggalkan mereka sekeluarga pada akhir tahun itu, dan ibu saudaranya datang untuk tinggal bersama mereka.

Kini, tinggal bersama wanita yang digelarnya sebagai “ibu”, Ilavarasi belajar bagaimana untuk berdikari dan menjaga diri sendiri.

Sesuatu yang lebih baik

Siva yang mengenali keluarga itu, berkata Ilavarasi adalah antara mereka yang kurang mendapat sokongan daripada pihak berkuasa.

“Ketika saya mula-mula bertemu dengannya untuk memberi sedikit sumbangan makanan, saya lihat dia menggunakan kerusi roda yang sudah lama, lusuh dan koyak.

“Saya perlu bantu, jadi saya memberinya kerusi roda baru dengan kusyen yang lebih selesa,” katanya.

Siva turut menyuarakan kekecewaan ekoran tiada sebarang maklum balas daripada kementerian atau kehadiran wakilnya untuk datang menemui mereka dan mengetahui isu-isu di lapangan.

“Jika mereka tidak datang berjumpa dan bercakap dengan kami, mereka tidak akan tahu masalah yang kami hadapi.

“Jadi bagaimana mereka boleh berikan kehidupan yang lebih baik untuk golongan ini?”

K. Ilavarasi meminati bidang jahitan, namun beliau masih belum menguasai kemahiran menjahit, beliau ingin menyertai kursus kemahiran jika diberi peluang supaya dapat berdikari.

Dia juga berkata sesebuah sistem tidak semestinya sesuai untuk semua orang, dan sumbangan sekali setahun tida dapat membantu OKU menjalani kehidupan yang lebih baik.

Ia turut dipersetujui Jeyaraj – apa yang dia mahu ialah pekerjaan yang sesuai dengan gaji yang setimpal, selain menggesa agensi kerajaan meneliti data tentang OKU dan bantu dengan menyalurkan bantuan kepada yang memerlukan.

Harapan Ilavarasi pula sempena Hari OKU adalah memiliki mesin jahit supaya dia boleh bekerja dan menjadi lebih berdikari.

“Hasrat saya adalah keadaan akan menjadi lebih baik,” kata Siva.

“Kami mahu turut serta dalam proses membuat dasar negara.

“Buat masa ini, kami hanya mempunyai beberapa wakil OKU dalam perbincangan dasar. Itu tidak mencukupi jika kita mahu menyediakan golongan itu sebuah kehidupan yang berkualiti.”

Jeyaraj bersetuju bahawa orang normal sukar memahami masalah yang dihadapi masyarakat OKU.

“Sebab itu kita perlukan orang kurang upaya untuk turut berada dalam perbincangan,” katanya.

“Cuba duduk atas kerusi roda kami – barulah anda faham.”

Embracing life from a wheelchair

Embracing life from a wheelchair

The story of two individuals who do what they can to continue living life to the fullest despite their disabilities.

Djohan ShahrinDec 3, 2021 8:00 AM

K Ilavarasi lost the use of her legs as a child. Now at 29, she is working hard to overcome years of disappointment and regret over her condition as a disabled person.

She lives with her father and younger sister in a small red house in the industrial area of Sungai Bakau in Rawang.

She enjoys sewing although she only knows some basic stiches, and hopes to one day own a sewing machine of her own.

Her father, Kalaiyarasu, also has impaired movements as he was involved in an accident in 2006, the same year Ilavarasi contracted a chronic neurological disease that left her hospitalised for months.

Ilavarasi spends most of her time at home and finds joy feeding the pigeons outside her house each day.

She and her sister also love spending time with their pet dog, Boy Kutty.

Each day, Ilavarasi prays for herself and her family.

Elsewhere, Jayaraj Santraju also struggles with life as a disabled person. He used to be an engineer in Singapore but lost mobility from the waist downwards after an accident where a piece of machinery fell on him.

Now, he sells ballpoint pens along the sidewalks in order to support himself and his family.

He is also the proud author of a book on how to adjust to life in a wheelchair, based on his own experience.

It is filled with useful tips and guides on how to achieve everyday activities.

Each day, Jayaraj prepares packets of pens to sell with a little help from his son.

Accompanied by his son who goes out to the porch to see him off, he puts on his shoes and heads out to do what he can to earn a living for his family.

It’s a tricky process getting into the car and folding the wheelchair to be kept at the backseat, but Jayaraj is used to it by now.

His son waits until he is ready to go, and then waves good-bye as he leaves the compound.

When he arrives at his usual spot, Jayaraj parks the car and wheels himself up the pavement.

He is often met with polite rejection although he works hard to joke and hold friendly conversations with passersby.

He is always glad when someone stops to chat and to buy a packet of pens or book.

He stays at his post all day until he has finished selling his wares.

Go a mile in our wheelchairs: A message from the disabled community

Go a mile in our wheelchairs: 

A message from the disabled community

Many began life as able-bodied people but met with accidents or illnesses along the way.

Danisyah Dalily

Dec 3, 2021 8:00 AM

Jeyaraj Santraju manoeuvres his way from his wheelchair into his car before heading off to work in Kampung Sungai Bakau, Rawang.

Jeyaraj Santraju was once a mechanical engineer in Singapore, but a workplace accident in 2006 changed his life forever.

He was working to assemble a high-stand machine that day when part of it weighing an estimated eight tonnes fell and landed across his back.

His colleagues who rushed to help him managed to lift the part that had him pinned down and pulled him some 20m away from the machine as they feared that the rest of it would collapse as well.

Unfortunately, their well-intentioned act left permanent damage to his spine – as they were pulling him away, his backbone fractured and became dislocated, damaging the inside of his spinal cord and causing partial paralysis.

Jeyaraj recovered but was left without sensation in his lower body. He also suffers from bladder problems which require him to wear a diaper at all times.

Former engineer Jeyaraj Santraju speaks in an interview with MalaysiaNow.

He came back to Malaysia that year and was reunited with his wife and son in Rawang.

It took him a while, but he eventually accepted his new life in a wheelchair. It was then that he began thinking about the rights of disabled people.

He also became acquainted with Francis Siva, the president of the Independent Living and Training Centre Malaysia (ILTC).

Every now and then, he visits the centre to volunteer. He has also learnt how to be independent despite his disability and earns a living selling pens as well as a book on how to manage life from a wheelchair which he wrote based on his own experience.

After 16 long years of living as a disabled person, he has come to realise the systematic disparities with which others like him struggle.

“At ILTC, we want to make sure that no disabled person is left behind,” he said in an interview with MalaysiaNow.

“If they are entitled to receive funds or aid, we will make sure they get it from the government.”

Today, in conjunction with International Day of Disabled Persons, his request is that the authorities fulfil the promises which they have made on paper.

“We don’t want it to be beautiful only on paper,” he said. “We want real action.”

Some problems

One issue with which disabled people often struggle is the application for the People with Disabilities Workers’ Allowance or Epoku. This needs to be submitted three months in advance of the deadline, failing which the yearly allowance of RM450 will not be given.

Another problem is the minimum pay for people with disabilities, which at RM1,100 is not often not enough for them to cover their expenses.

And if a disabled person is paid more than RM1,500 a month, he or she will no longer be eligible for Epoku. This, to Jeyaraj, is unfair.

“I want to work and get paid well,” he said. “I also have a family to feed. Don’t treat us like children.”

Siva, the president of ILTC, said the problem was a lack of understanding on the part of the government about the issues faced by people with disabilities.

“We have asked the women, family and community development minister for a meeting to discuss the issues on the ground, but after eight months, we haven’t received a reply,” he said.

“In parliament, the deputy minister said that disabled workers don’t face any problems during the pandemic. All I can say is, something is wrong here. They obviously don’t understand the problems we face.”

At 29, K Ilavarasi is well acquainted with these problems.

K Ilavarasi is helped down from a van specially designed to accommodate her wheelchair.

As a child, Ilavarasi was diagnosed with a condition which sees her suffer from an excessive amount of white blood cells. During this period, it was always her father who took her to her doctor’s appointments and picked up her medication.

In 2006, though, her father met with an accident and no one else in her family knew how to take care of her – not even her mother.

With her father out of action, she went without medication for a long time. Her condition deteriorated and she eventually wound up in a wheelchair.

Her mother left her family later that year, and her aunt came to stay with them.

Now, living with the woman she calls “mother” instead, Ilavarasi has also learnt how to be independent and to take care of herself.

Something better

Siva, who knows the family, says Ilavarasi is among those who lack enough support from the authorities.

K Ilavarasi sits with her father who is also disabled in the living room of their home in Rawang.

“When I first met her to give some food donations, I saw that she was using an old wheelchair that was worn and torn. I had to help her so I gave her a new wheelchair with a cushion that is way more comfortable,” he said.

He voiced disappointment that no one from the ministry had come to see them and to learn about the issues on the ground.

“If they don’t come to see and talk with us, they won’t know the problems that we are having. So how can they give a better life for these people?”

He also said that a single system will not work for everyone, and that one-off donations will do little to help disabled people live a better life.

This rings true for Jeyaraj as well – all he wants is a proper job with a good pay, and for the government agencies responsible to sort through the data on people with disabilities and help channel aid to those in need.

Ilavarasi meanwhile dreams of a sewing machine so that she can work and become more independent.

“My wish today is for something better,” Siva said. “We want participation and inclusion in the national decision-making process.

“Right now, we have only a few people with disabilities included in discussions. That is not enough if we want to provide the community with a quality life.”

Jeyaraj agreed that able-bodied people would find it difficult to understand the problems faced by the disabled community.

“That is why we need disabled people to be there,” he said. “Try to fit in our wheelchairs – then you will understand.”

Household gift packs for 20 poor people with disabilities

Madam Saraswathy

Brickfields, Kuala Lumpur,

On behalf of all members, I express our sincere thanks and appreciation for your kind contributions of household gift packs for 20 poor people with disabilities towards Independent Living & Training Centre Malaysia.

Each household receives two gift packs, one with basic necessities such as Oil, Sugar and Rice, etc.... for this festive Deepavali.

We do appreciate your noble gesture to help our organization. Because of the liberal donation in kinds and cash from kindhearted person like you good-self, we are able to manage the various activities in our organization efficiently.

We appreciate the promptness from you and your team. 

Wishing you and your family very happy and prosperous Deepavali.

Kind regards and best wishes to all those who helped us.

Your Truly,

G. Francis Siva

President of ILTC Malaysia