Zhariff Afandi was six years old when he marched into the headmaster’s office and asked that he be allowed into Year One class the following year. This was just after the principal had explained to Zhariff’s parents that the school didn’t have the facilities to cater to “students like Zhariff”.

Zhariff was born without arms but even as a young boy, he believed he could do anything that he put his mind to.

So, he was puzzled when his mother told him he couldn’t go to school.

“I asked the headmaster why he wouldn’t let me in. After all, I told him, I could already read and write. I then took out my exercise book from my bag and I wrote his name and my name. I asked him again why he wouldn’t let me study there? I think he was a little stunned,” shared Zhariff, 36.

The headmaster relented and Zhariff completed his primary and secondary education in mainstream schools in Kuala Lumpur.

“It wasn’t easy as schools were not equipped for students with disabilities. My father made a customised desk for me for school and my parents asked the school’s cleaning lady to help me when I needed to go to the toilet,” recalled Zhariff who overcame his challenges to study at universities in KL and Australia.

When he was six years old, Zhariff marched into the headmasters office to ask to be allowed into Year One in the mainstream school.

His determination also enabled him to scuba dive, participate in marathons, trail runs and a myriad of other activities that most people haven’t tried.

“People always ask me how I do it? How do I manage? We are all different. Whether or not you have arms or legs, whether we have some sort of condition or if we are poor, come from a war-torn country … whatever our limitations, the most powerful thing we all have is our spirit.

“This will allow us not just to be alive but to live and to have a life. We are all capable and we all matter.

“We all have our own set of challenges. Some of us might feel sad or embarrassed by our limitations. We might feel uncomfortable when we go out. But we mustn’t let fear and self-doubt take over us,” said the advocate, who founded the Zhariff Initiative, a consultancy to inspire people to move beyond their limitations,

He was sharing his journey at the #ThisAbility Makethon 2017, an initiative to showcase the creativity of children living with disabilities by challenging them to invent assistive devices which can improve their lives at home, in play or at school.

But Zhaiff’s positive experience of living with disability is not the norm in Malaysia.

At the event, Unicef launched a study on the perceptions and attitudes towards childhood disability among Malaysians, which reveals a strong discrimination against the disabled.

The research, Childhood Disability in Malaysia: A Study of Knowledge, Attitude and Practices, is the first nationwide study on the subject and it reveals a glaring lack of understanding and awareness about disability in Malaysian society.

“Little research has been undertaken regarding children with disabilities in Malaysia. This study provides us with nationwide evidence that children with disabilities are too often hidden, discriminated and left out of society,” said Unicef representative in Malaysia, Marianne Clark-Hattingh.

The lack of knowledge and misconceptions about disability, she said, has resulted in stigma against people with disabilities and limited their access to their rights to be a part of society.

“Because of incorrect and insufficient information, we disable children with disabilities. But we can make the decision to enable them. The biggest barriers are our hearts and minds. With the obstacles removed, children with disabilities have the opportunity to develop and reach their full potential for everyone’s benefit,” she said.

The findings of the study, she said, will be used to advise stakeholders in developing programmes and systems that are more inclusive of children with disabilities.

Understanding disability

A total of 756 participants from Selangor, Kelantan, Sabah and Sarawak took part in the study which was conducted from January to September 2016.

The study comprised surveys, group discussions, workshops and interviews and included children and adolescents (with and without disabilities), government and ministry representatives, community leaders, service providers like teachers, health care workers and caregivers of children with and without disabilities.

Six out of 10 participants (58%) were under-informed or ill-informed about disability; 87% said they wanted to know more. Most respondents regarded children with disabilities with pity and sympathy.

Children with behavioural, mental and intellectual disabilities faced greater stigma. Only 20% of the respondents saw behavioural and mental conditions as disabilities. Most regarded children with learning disabilities, hyperactivity or aggression as being “badly behaved”. Those with mental disabilities were labelled as “crazy” or “stupid” and were often made fun of.

People are more accepting and understanding of children with physical disabilities, conditions which were tangible to them such as loss of vision, inability to walk, total loss of hearing or loss of limbs. About 80% of the respondents recognised these physical limitations as disabilities.

Most of the survey respondents (96.5%) found it acceptable for their child to be best friends with a child with physical disabilities compared to a child with behavioural disabilities (53.1%) or mental disabilities (39.2%).

One respondent, a mother from Selangor, said that she felt “lucky” that her child with cerebral palsy was “cute” and did not have behavioural issues because people were more accepting of him.

The study also examined the language on disability and found that many participants referred to children with disabilities as “cacat” which they defined as “blemished”, “flawed” or that they were “less of”.

One government official concluded that: “Society consists of two parts: one is normal and one is abnormal. That is why people with perfect bodies are called normal”.

The findings, said Clark-Hattingh, bring to light the many misconceptions about disability in Malaysian society.

Stakeholders must not just take note of the data but create an environment that allows and encourages children with disabilities to be part of active society.

“We say our schools in Malaysia are inclusive but they are not, really. Zhariff’s story clearly shows us that. Most schools say they cannot cater to children with disabilities and don’t ask how they can modify things just a little so that children with disabilities can go to school. It’s a question of adapting and these are the key lessons we hope could come from this,” said Clark-Hattingh.

Shahratul Azmah Shamsudin couldn’t agree more, sharing the many challenges she and her husband Amali Mat faced in trying to enrol their daughter, Aina Farhanah Amali, in a mainstream school.

“We were always asked why we didn’t just send her to a special school. But we refused. When she was in primary school, Ainaa could walk but she needed assistance. We asked the teachers to help her when she needed to move around or go to the toilet but they asked us to hire a maid to be with her in school. It was challenging,” shares Shahratul.

Living with disability

Ainaa, now 22 and a graphic designer, has learnt to ignore the stares she receives in public for being in a wheelchair.

“I just don’t care. In college, nobody made a big deal about me being in a wheelchair. In fact, nobody asked me about it either. Everyone was very accepting and I had many friends.

“But when I am in public, people stare. Most people assume that I’d been in an accident which is why I’m in a wheelchair. If they ask me nicely, I will explain my condition. But many times, people just come up to me to say “ What’s wrong with you?” I just tell them there is nothing wrong with me and smile,” she says.

Aina suffers from Spinal Muscular Atrophy (SMA), a recessive disease that progressively affects a patient’s muscle control, leaving them unable to walk, talk, swallow, cough and eventually, breathe on their own.

Ainaa started using a wheelchair when she was 10 but she refuses to let her disability limit her. She loves art, photography and design and dreams of becoming an entrepreneur. She has started an online shop, Conteng by Ainaa, through which she sells canvas bags and pouches with her hand-drawn designs.

Ainaa with her parents Shahraful and Amali at her graduation.

“Living with SMA is a challenge. I cannot sit for long because of my scoliosis and I don’t have that much stamina. I need to wear a body brace and I am prone to catching viruses which can affect me badly. But these are not excuses. I went to mainstream school and college, and I submitted all my assignments on time. I also participated in activities in college. I don’t say this to get sympathy but I want people to know what it is like living with SMA.

“I dream of becoming an entrepreneur with my own design studio and I am preparing for my future now,” says Ainaa who graduated with a degree in graphic design at First City University College in Petaling Jaya last year.

Ainaa and Zhariff are proof of what children with disabilities can achieve when they are given opportunities to succeed, said Clark-Hattingh.

“We are proud when we see the achievements of people with disabilities like our paralympic athletes but really, there is no reason why they should not achieve success. In fact, so many more can achieve and be in the public limelight if they are given equal opportunities.

“It is time that parents stand up, and for society to let these children participate in daily life as is their right,” she said.

According to the World Health Organisation, the survival of persons with disability is threatened by attitudes, prejudices and beliefs, common among non-disabled people.

The findings in the national study reflect this and should be taken seriously by parents, society and the stakeholders, said Clark-Hattingh.

“The lack of knowledge, misinformation and misconceptions about disability lead to discrimination. About 30% of the respondents felt that children with disabilities didn’t need as much food as others. A significant number believed that disabilities in children were caused either by something their parents did, a punishment for something done in the past or simply because it was fate.

“These misconceptions lead to fear and we know that fear is the biggest barrier preventing parents from registering their children or taking them out. Parents don’t want their children to be labelled or made fun of or embarrassed by their peers or the general public. It is time that we break down these misconceptions and truly allow children with disabilities to access their rights,” she said.