By: Alex Tan (4A), Jasdeep Singh (4A), Matthew Kho (4C), Cheng Yi Ern (15S03B), Joyce Er (15A01A)
‘The only disability in life is a bad attitude. Your excuse is invalid.’
Imagine these words, emblazoned against a picture of a runner in the Paralympics. Now transpose this into a context of reality, in a Tumblr blog or Facebook wall, re-blogged and shared ad infinitum. This is what is called ‘inspiration porn’—images that portray disabled people doing ‘ordinary’ things like playing a ball game or painting a picture.
Inspiration porn functions based on the assumption that people with disabilities lead meaningless lives with crushed dreams, and that they can only be empowered and fulfilled by performing mundane tasks that ‘normal’ people do. It also exceptionalises them as playing the role of inspiring others with their extraordinary positivity and optimism. On the other hand, people with invisible disabilities such as chronic or mental illnesses are inadvertently marginalised, because the nature of their conditions does not allow for such explicit outward manifestations of hope and inspiration. After all, our judgments are primarily based on what we can see.
We live in an ableist culture that is inimical toward people with disabilities, of which inspiration porn is but one example. Seldom do we realise the implications of our remarks and actions. Our lack of awareness sometimes causes us to be complicit in perpetuating oppression and prejudice, which is ultimately pernicious.
The writers decided to interview four Rafflesians with severe medical conditions—Loh Yih Hang (1M), Arivarun Anbalugan (4A), Daniel Hakim (14S06F) and Loh Jia Wei (RI, 2013)—to find out what life is like from their perspective, and how they think we might be able to rectify the false, widespread societal perceptions about people similar to them.
What is your condition?
Yih Hang: Ectodermal dysplasia is a medical condition that affects my sweat glands, hair and teeth. I am born without sweat glands, so I am unable to sweat at all. I also have a higher chance of suffering from heat stroke because my body lacks the ability to reduce its temperature by perspiring. As such, I usually carry my water bottle around and pour water over myself to cool down if I ‘overheat’. I try my best to partake in PE lessons, but there are times when the sun is so strong that I have to sit out. I also have very few teeth—with only two visible front teeth, I have difficulty chewing food. Even though this condition causes me to have less hair, I decided to shave my head anyway as this would keep me cooler, reducing the chance of having a heat stroke.
Varun: Before I start, allow me to clarify that I never use the term ‘disability’; rather, I call it a ‘different ability’, because calling it the former is the first and fastest way for someone like me to cripple himself mentally and emotionally. For the purposes of this interview, I’ll use the term ‘condition’ to refer to my state.
I was born with cerebral palsy—brain damage that can either occur before or at birth. This has impaired my fine motor skills, and it has caused me to be unable to walk. I’m tall, so my bones are weak, and my weak muscles, due to my brain’s inability to keep them active, cannot carry my weight. This has also caused structural misalignments with my bones, so my legs are in that twisted position all the time.
Daniel: I was born without any disorder. It started when I was in Year 1, the morning of May 12, 2009. I was sitting for my Physics paper when I began to feel a sharp pain in my lower back, and pins and needles in my legs. I took a cab home because I was having trouble walking, and by the time I had reached home, three hours later, I couldn’t feel my legs and had lost the ability to walk. My mother called an ambulance, but I was only diagnosed three to four days later, after going through a lumbar puncture. I had contracted the Guillain–Barré syndrome, also known as French polio, a very rare airborne viral infection. Once daily for four days, I had to be given a blood compound, known as IVIG, which reduced the severity of the viral attack. It cost $5,000 a day, or $20,000 in total.
In Year 3–4, an MRI further revealed that I suffered from a prolapsed disc, which doctors had hypothesised was likely because the initial virus attack might have caused my spine to be weakened. They didn’t recommend surgery as they weren’t sure if it was the virus or the slipped disc that caused my leg numbness. Currently, the doctors don’t know what to do, but they still hold on to the primary diagnosis of viral infection and the secondary diagnosis of a slipped disc.
Initially, they told me I’d recover three years after the infection. After the slipped disc, they can only classify it as a long-term handicap. They’re still searching for the cause for numbness, but they think that full recovery is unlikely.
My financial costs mainly come from taxi fares. My dad fetches me to school in the morning, but it’s hard for him to do so every morning, because he has to get to Jurong Island. I stay in Pasir Ris, and I always have to call for a Hyundai Sonata cab to take home every day, so that my wheelchair can fit. My wheelchair is custom-made, and cost $3,000. One trip from Bishan to Pasir Ris costs $15 during nonpeak hours and $21 during peak hours, so you can see how that quickly adds up.
Thankfully, I qualify for the Independent School bursary scheme, which subsidises 90% of my school fees.
Jia Wei: Spinal Muscular Atrophy (SMA) is an autosomal recessive disorder, which manifests when there are two defective copies of a specific gene. These could have been inherited from the individual’s parents or could have resulted from a spontaneous mutation. (NB: I chose to read H2 Biology partially because I wanted to understand the genetics behind my condition.)
I was diagnosed with SMA Type 3 at three and a half years’ old. Type 3 simply means that I could walk, albeit with a wobbly gait, until I reached my adolescent years. As with people with other types of SMA, I have muscle weakness throughout my body and this includes my heart, lung and eye muscles. The condition is progressive, so my muscle strength deteriorates with time.
There is unfortunately no medication available for SMA at the moment. However, individuals with the condition are strongly encouraged to undergo physiotherapy regularly to delay the onset of the debilitating symptoms.
Growing up, how did these conditions change your life?
Jia Wei: Growing up, I did not have the privilege of remaining ignorant of and oblivious to my condition. I fell very frequently, so much so that my peers found it funny and my teacher declared me a nuisance. My mother would occasionally put me in a buggy to spare me from the exhaustion of walking, but passerbys would invariably point and decry the oversized child who is too lazy to walk. It didn’t take much to know that I was different.
At the age of five, my mother tried to impress upon me the implications of my disability. The jewels in the crown were: ‘life will be unfair’; ‘you have to rely on your mental faculties and work harder than your able-bodied peers’; and, morbidly, ‘you will most probably die from a heart or a lung failure’.
If not for SMA, I think my life would have been very different. For one, I imagine I would be less resilient and more coddled. I would most likely have picked up a sport, learned to dance, and be a guzhen expert. My aspirations might not have been vastly different, but I would have had the option to be an engineer, military doctor or in any physically-demanding occupation if I wanted to.
I suspect I have never come to terms with my condition; every now and then the same spectre would haunt me and threaten to tear me apart. However, I am also too caught up with life and aspirations and nice people to bemoan my condition 24/7.
Daniel: I wasn’t the very active sort when I was younger, but I did like to go out with my mom, and since I’m the only son, I always accompanied her. I loved cycling during the weekends with my dad but now it’s much harder for me. The last time I cycled was last year during my learning journey, when I cycled with my classmate using a tandem bike. To be honest, when I first got the virus I didn’t want to go to school, and I missed three months of it. My parents were my main pillar of strength. They provided me with motivational words of encourage- ment when I just wanted to stay in the hospital bed and stare at the ceiling and do nothing.
There’s a quote that greatly inspires me even now, which I heard back in June last year, when the Raffles Community Advocates organised the Tiltshift Summit. They invited Mr Ray Jefferson, who lost the fingers on his left hand trying to protect his fellow recruits in the marines. He said, ‘The death of a dream is the birth of a destiny.’ When I look back, there were many instances when I just wanted to give up and not do anything, but if I had done that, not only would I disappoint myself, I would also disappoint the people who helped me to get to where I am right now.
What sort of difficulties do you face as a result of your condition? How do you overcome them?
Yih Hang: Many people have laughed at me because of how I look. Some people call me ‘botak‘ (no hair) or a vampire because of my only two front teeth. My parents have taught me to ignore these people and not let it bother me and I have done that for quite a while. Sometimes, I would explain my medical condition to them. Even until now, quite a few people continue to give me derogatory nicknames. The other difficulty I face is the increased risk of heat stroke. As stated above, I always keep my bottle by my side and pour water all over myself when I’m feeling warm.
Varun: In a world where the majority can walk, I’m in a physical environment that is hard for me to move around in. I need help to move, which the wheelchair is helping with. But there are limitations to this intervention, like when it comes to getting into the shower, or dressing up, or climbing stairs.
As for overcoming these difficulties, it starts with a simple desire to want to overcome them. Though when I say this, I must clarify: I happen to fall on the milder side of the huge spectrum of medical conditions that can limit independence. I am able to move around by dragging myself in a seated position and tweak this to use my arms to force myself up stairs. If I can’t use my legs, my arms will double up for them. This is a luxury not every condition provides. Some people with a more severe form of this same condition cannot even sit up or speak. I am lucky.
Of course, wheelchairs and alternative movements are measures that vary from one condition to the next. And in any condition, there is a limit to how independent you can be, given your physical state. To become more independent, the first move is to improve physical fitness as much as possible. But this is a long-term endeavour, and in the meantime, it is absolutely fine to ask for help if it is necessary. I have a helper, a therapist, and many good friends around school to help.
Daniel: I would say that my condition isn’t that obvious to the eye. But as a result, in school and outside, people give me weird looks—‘Why are you in a wheelchair? You look perfectly healthy.’ It’s quite disturbing, the looks and stares that strangers give.
I initially didn’t consider myself to be a positive person. But there’s no use whining about it, and I would rather use the energy to do something more useful, like CCA activities, or academics. In school, the Dean of Systems put Ryan and Mick, who have been my classmates since Year 1, in my class to help me. Initially they were my two main helpers in school but now I also have a lot of new friends who help me out.
Last year, I did have difficulty getting into the lift because some Year 6 students were hogging the lift and would pretend not to see me when I approached the lift to get to class after school. I highlighted the issue to the dean who brought it to the principals, and after that the situation improved. Also, now I’ve made more new friends and if some are at the lift, they or passing teachers will ask others to get out so I can get in.
When it comes down to it, my disability feels like something normal. I feel like everyone has disabilities, it’s just that some people have more defined disabilities than others. I don’t let myself think about it so much that it will affect my life. So what if I have disabilities? I can just get on with my usual life and not be bothered about it.
Have there been cases where you’ve felt unfairly judged because of your disability?
Varun: Yes, I have. Once, I was at a temple in India and the security guard tried to get me out of the central shrine saying I was blocking other people although there was space left for people to come in. I was not obstructing anyone. I was initially not too comfortable with interacting with people because I’m naturally introverted, but seeing me on a wheelchair, some former schoolmates saw it as me being too stupid to mix with them. Others, seeing that there was always someone to assist me, interpreted it as me being snobbish with ‘a better chair and a personal servant to do my bidding’.
I was more angry than upset about this. I used to curse silently at these people’s cruelty, but stopped it after some people told me ‘not to bother with these idiots’. I know of some who would wallow in self-hate and declare themselves disabled. They’re not leading lives as fulfilling as they could be, because self-pity is destructive.
Yih Hang: Not many people have really judged me, to the best of my knowledge. They only make fun of me. Even if they judge me, I am able to prove them wrong quickly.
Jia Wei: Well, most of the time being judged is not ‘unfair’ because my condition is a limitation under many circumstances. I decide whether I want to feel aggrieved after considering whether there has been any attempt to provide special consideration and reasonable adjustments on the other end.
I have encountered many people with dismal pre-conceived notions of persons with disabilities, but I am usually not too bothered by those because I can easily dispel them with my example if I try hard enough.
Do you often encounter false perceptions of disabled people?
Yih Hang: Many people do not think much about it, other than the fact that it is just ‘weird’. Some of my friends first assumed that I had cancer because I did not have hair. Others also believed that shaving their head bald is a sign of rebellion, which is not true for my case.
Varun: I think one big issue is ignorance. Many people do not fully understand people with such differences, who are more diverse than one would think. I forgive these people and I think it is my responsibility to clear any misconceptions people have about such things, at least for those which concern me.
Many people who have not known me for too long often ask my parents if I go to a special school to learn simple vocational skills, since ‘the mainstream will be too difficult’. They’re usually surprised to hear I’m from RI. People think that if you’re physically challenged, you have intellectual problems as well. This is not true. This is a huge spectrum and you cannot put everyone in the same category. We’re unique, even amongst our small community.
Another misconception is that our situations cannot be improved. Some conditions are difficult to handle, but not all are. There’s therapy for people to take and improve from, if doctors find it appropriate. Having such issues is not the end of the world. People like me can be independent too.
Do you think these incorrect perceptions are perpetuated by the media or society at large?
Varun: There are individuals who are not fully informed of the truth of the nature of such conditions, and who can spread baseless, false ideas to others. And these ideas travel around. Media reacts to society. It draws from society, and then influences society. So I would say that society and media are almost entirely responsible for these false representations. Some people who have these conditions themselves blindly accept the false information and project this image to others, so what people find to be ‘first-hand information’ can be incorrect.
The issue with media is not that it represents the situation in a factually incorrect way. Take inspiration porn, for example. Yes, they come from real photos. But they function in a way that is wrong. It uses pity by highlighting one’s differences to buoy another’s feelings. Pity places the person in question at a lower position that the observer, and this is where people start to misunderstand such conditions and how they affect people who live with them. This is how we end up limiting people with such conditions.
Yih Hang: In Singapore, not many people know about ectodermal dysplasia as it is extremely rare, so you will not be able to find it much on the news. So far, I have been featured on the newspapers for a few times as those articles were trying to raise public awareness about my condition.
Do you think enough has been done to support those with disabilities? What more can be done?
Jia Wei: No, no, and no. We have only started paying attention to the needs of persons with disabilities with the ratification of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) and the implementation of the Enabling Masterplan.
There is a sizeable number of persons with disabilities who spend a disproportionate amount of their meagre wages on transport, medical bills and assistive devices. Can we provide more targeted subsidies for them and improve their chances at gainful employment with more initiatives under the Open Door Policy?
I think the authorities need to consult persons with disabilities more. As an illustration, I find it inappropriate that the government subsidises up to 80% of dedicated transport services and only up to 50% of taxi fares in general. Dedicated transport services are often provided by Voluntary Welfare Organisations (VWOs) and are usually already highly subsidised. On the other hand, taxis fares can be very costly and persons with disabilities often rely on them as the last resort when it is impossible to use other modes of transport due to timings and other considerations.
With regard to a barrier-free built environment, the Building and Construction Authority (BCA)’s Code on Accessibility is a step in the right direction. However, more could be done to enforce these guidelines. Moreover, there are many attitudinal barriers to overcome such as able-bodied people abusing the wheelchair-accessible washrooms and inconsiderate motorists parking their cars in front of ramps.
Varun: I think it’s important to get the facts verified. These start with doctors, professionals and some well-informed people who experience the conditions. The issue now is that some people facing these problems themselves do not fully understand their condition.
A change in mindset is needed, and this is where the media comes in to rectify its mess. We must move away from a mindset of pity, towards one of understanding, of acceptance and of supportiveness. It’s common for people to at times pity or underestimate people like me. But when we are able to do some stuff on our own as best we can, pity isn’t the right mindset we want, or need. Rather, it’s important that people don’t feel that we are disadvantaged, but rather that we are just unique.
Daniel: In school, I think I’m the only guy using a wheelchair on a long-term basis. Even though RI has lifts I wouldn’t say it’s a very wheelchair-friendly compound. For example, to get from the lecture theatre block to the wishing well or library, my friends would have to carry my wheelchair up the flight of stairs connecting the two blocks.
Financially speaking, the government does provide concessions for people with disabilities, such as the public transport concession, though I don’t think it is very effective because it’s very inconvenient for us to travel on public transport in our wheelchairs. How do you expect people to get onto the MRT at peak period? I think people will feel torn between giving way to disabled people and rushing to get home.
Even though there are lifts connecting the gantry and train levels, the wheelchair probably wouldn’t even fit into the sardine-packed lifts during peak hours. For now it’s not very feasible. As much as I want to take public transport, it’s very hard for me as I have poor balance and I’m afraid I’ll bump into people, and it’ll be even more troublesome if I were to go out with my wheelchair. I try to go out on weekends with my dad, but if I have no choice, I try to call a cab.
Have you ever been involved in advocacy for awareness about people with disabilities in general?
Jia Wei: I am only beginning to become an advocate for the rights of persons with disabilities.
The media is a powerful platform to spread awareness, so I generally try to be forthcoming during interviews when quizzed about my condition, the emotional ups-and-downs, and concerns of persons with disabilities in general.
I have also written about the pressing need for disability rights legislation in Singapore, and contributed my two cents’ worth to publications like the Muscular Dystrophy Association Singapore (MDAS)’s Sophie, why can’t you walk? and Asian Women’s Welfare Association (AWWA) TEACH ME’s Hey Listen! We’ve got more to say!, which is a collation of the experiences of persons with various disabilities meant for the public.
Channel News Asia (CNA)’s ‘SG+’ did a feature on what persons with disabilities think about the new Enabling Masterplan back in May.
Do you have any advice for others who have similar disabilities?
Daniel: I would tell them the quote I shared just now. Also what I said earlier—instead of whining about your disability, channel it towards doing something more positive and useful, which can improve your life. A person can be physically perfect but there will still be flaws in character or life. Disability is something people create. Everyone is able in their own way; it’s just that the term ‘disability’ is created as a label.
Jia Wei: It is tempting and easy to wallow in self-pity, but that is self-defeating and has an adverse impact on your self-esteem in the long run. Think about how you can be useful as a person instead, and how you can pursue your dreams even with your limitations. You are the steward of your life. Also, for the children: don’t give up on your studies because you have a disability and school is no fun. Your education will define you.
If you were offered a treatment for your disability tomorrow, would you take it? Why or why not?
Jia Wei: Yes, of course I would. It’s high time for me to be fully independent, and for my parents to leave my orbit and enjoy their lives. I would still advocate for the welfare of persons with disabilities.
Ableism, also referred to as disability discrimination, has been overlooked time and again. The invisibility of many disabilities, however, is not an excuse for insouciance. Most of us benefit in institutionalised ways because of our able-bodied privilege. In Singapore, deaf and blind children are automatically prevented from access into elite schools, which is but one isolated example of how people with disabilities are, by default, excluded from gaining socio-economic power and status. In 2010, the Singapore Mental Health Study found that 65 to 95% of mentally ill patients will not seek medical help because they fear social stigmatisation. The continual oppression of these minorities will not end should we hold fast to our preference to turn a blind eye and ignore this issue.
Yet, the search for feasible and effectual solutions is not without complication. In the process of raising awareness and the amount of attention paid to the disabled community, one might inadvertently further encourage the social rift between able-bodied and disabled people. The very act of making people conscious about their privilege paradoxically emphasises the differences that separate us.
In our opinion, it is therefore important to give especial focus to our remarks in casual conversations and, if we know of people with disabilities, in our day-to-day interactions with them. More than anything, our words reinforce pervasive ableist, discriminatory attitudes. These comments and actions of non-physical aggression are known as microaggressions.
Microaggressions, no matter how minor and inconsequential they might appear, contribute to marginalisation and oppression. An example is telling disabled people that they should not take ableist comments and remarks personally. The denial of the existence of ableism within our culture invalidates the structural difficulties that disabled people have had to face since birth, implying that their inability to gain socioeconomic power and status or be on an equal footing with able-bodied people is entirely personal and not systemic. It is an erasure of their lived experiences. Silence and ignorance, denial and deferral—these are but pervasive ways through which systems of marginalisation and oppression are reinforced. As Marianne Kirby, a resident columnist on the xoJane website, writes, ‘When you tell someone that they should stop choosing to be offended by something, you are suggesting they erase a lifetime of cultural messaging.’
A further example is in a disabled person’s choice of identifier. For example, someone might prefer the term ‘disabled person’ to ‘person with disabilities’ so that the label doesn’t define them completely as a human being. Both of our interviewees have stated their preference of the word ‘condition’ to ‘disability’. Things like these are highly localised and specific, differing from individual to individual. Hence, it is important that we be mindful and accommodating, and clarify right from the outset what disabled people are comfortable with being associated with.
After all, as Marianne asserts so succinctly in her essay, ‘If I refuse to respect someone else’s lived experience, I’m just perpetuating a system in which oppressed populations aren’t regarded as qualified to speak for themselves.’