by Alvan Yap
We use fancy words to describe the often-simplistic way we see the world, and our belief of how the complex things in it – such as society, culture, and politics – work.
There is “paradigm”, much beloved by consultants who extort us to “shift paradigms”, thereby increasing profits, productivity and probably perspiration too – it sounds as if it involves much manhandling of furniture. Tiring. There is “framework”, which appears to be some bare, skeletal wooden structure designed by an architect. Boring. And then there is “model”, which reminds one of the skinny, sharp-looking folks wearing strangely-cut clothes and walking up and down strips of carpet. Swell.
Let’s go with “model”.
And of the various models of disability, three stand out and will be the focus of our discussion here. We shall call these “supermodels”. Let’s look at them in turn.
Supermodel 1: Of Charity & Tragedy
aka “O you poor, poor thing! We must help you!”
After you’ve watched a couple of televised charity shows or sat through call-to-action speeches at fundraising events, you can probably memorise the spiel. It goes something like this:
“We should think of the less fortunate, underprivileged, more needy people among us – the pitiful victims of poverty or tragedy or neglectful parents, those suffering from disabilities or illnesses. Come, open your hearts and wallets – please donate generously, and do spare the time and effort to make their lives that bit better. World Peace!”
(Ok, perhaps not the last bit.)
No doubt, such initiatives to raise much-needed funds for charity are often done out of the goodness of one’s heart, and of many hearts. The intentions are gold. The execution is polished to a silvery sheen. As savvy marketers would argue, emotional appeals which prick the public’s conscience also pack the most punch, because they do bring in the donations, whether in cash or kind, and more of it. You can also say it’s about encouraging voluntary sharing and distributing one’s excess wealth to others who truly need it, and who are in dire straits though no fault of their own. The ends justify the means.
The problem with such an approach, especially when it becomes the lens through which an entire community is viewed, is obvious. The donor is placed on a pedestal. What a big-hearted, generous and noble person! (And then we, the big-hearted, generous, noble ones who give, beam and bask in an aura of benign goodliness.) The beneficiaries, on the other hand, are cast in the role of the helpless and hapless, ever so grateful for the handouts. All this reeks too much of a superior-inferior mindset or a colonial-native relationship, which is surely not what we desire in an egalitarian society.
So you can understand why the tendency to lump all people with disabilities as charity cases or tragic tales is plain irritating to them, not to say humiliating. It implies they are lesser beings who are not able to take care of themselves, financially and in other ways.
In general, people with disabilities – and, arguably, other groups on the receiving end such as low-income families and ex-convicts – do not seek charity. They want, instead, an impartial understanding of their condition or circumstances; they want a fair, fighting chance; they want equal access to education and knowledge and information; they want an opportunity, equal opportunities; they want to be treated equally and with respect. And the above, which sounds so simple and logical, are much harder to achieve in reality.
(I am not disdaining all charity fundraising efforts. There are those which focus on the beneficiaries’ talents and abilities to promote or ‘sell’ the event, treat the beneficiaries with dignity and avoid sob stories – these, we should support and encourage.)
Supermodel 2: The Medical & Clinical
aka “There’s something wrong with you. Let’s fix it.”
Another extremely common perspective of people with disabilities is that of them having a medical problem or biological defect/lack. When non-disabled people come across those with disabilities, the former tend to suddenly morph into medical professionals doing on-the-spot diagnoses.
From afar, if we don’t know the person, our thinking, subconsciously or consciously, might go along such lines:
“Something’s wrong with his legs.” (Upon seeing a wheelchair user.)
“There’s a problem with his muscle control.” (Upon seeing a person with cerebral palsy.)
“He can’t hear or speak.” (Upon seeing a person using sign language.)
“Oh, she lost her eyesight.” (Upon encountering a blind person.)
“She has a brain defect.” (Upon meeting someone with autism who manifests it explicitly through her seemingly ‘odd’ behaviour.)
And so on.
This is a natural reaction. We all do it, even people with disability when encountering those with a different disability. (Our impromptu diagnoses can be way off the mark though. I once thought, as many others probably do, that people with cerebral palsy have muscle control issues. The actual cause arises from the brain, hence the ‘cerebral’ part of the name.)
If one is a friend or acquaintance of the person with disability, the conversation usually veers to asking about the many possible cures/therapies/operations the disabled person may or may not have already tried, the fact that one knows of a relative/another friend/a neighbour’s uncle’s boss who happens to have the same disability, and so on and so forth. This is not only tiresome and irrelevant (especially to someone with a disability he or she has grown up with or has for a long time and knows all the ins and outs of it), but also pretty meaningless.
This laser-like focus on the medical aspect of a disability and on a cure or fix – “making the person whole again” – can become misguided at times. Medicine and technology are crucially important – in reducing pain, in prolonging life, in facilitating movement and communication, and so on – but they have limitations too. In the case of many disabilities, there is no cure; these are life-long conditions.
We do what we can with medicine and technology, but when the person with disability still – inevitably – cannot be ‘fixed’, do we then say he is a medical failure and hopeless case? That cannot be. Instead, it is now more important to accept and adapt to the disability. The pertinent questions we must ask have to change too: How can a person with disability be included into the family, in schools, in society? What measures are needed – both on the part of the individual with disability and the society – to improve the lives of the persons with disability? In short, we need to undertake a paradigm shift. (Or, if you like, a supermodel swap.)
Of course, if one’s disability has life-threatening consequences (such as the need to take pills regularly or else..) or could cause harm to oneself or others (being prone to seizures or fits anytime, for example), then it is reasonable – and even necessary – for friends and co-workers to be informed, aware and to take precautions.
Otherwise, it makes as much sense to see people with disabilities purely in medical terms as to regard a Catholic solely in terms of her religion or describe an Aboriginal Australian only in terms of his skin colour. We are, all of us, first and foremost, human beings.
Keeping that in mind, let’s move on to the last supermodel.
Supermodel 3: It’s All About The Social, Stupid
aka “The issue is not in the persons with disability. It is your attitude and the environment which disables them.”
Here, I’ll like to borrow and adapt (and embellish) one of my lecturers’ stories from seven or eight years ago, when I was doing my diploma in special education at NIE. It has stayed with me all these years because it changed the way I myself perceived disability.
In a primary school class, among the 40 students, there’s one student who is wheelchair bound. Let’s call him Ah Beng. One day, the teacher arranges a class outing to a park some distance away. There is no school bus for the handicapped available. So the teacher tells Ah Beng he is excused from the outing.
His parents kick up a fuss over this trivial matter. Oh well, the teacher concedes, he can join the class, but the school would need to book a special cab for him. More under-the-breath grumbling about the hassle and added expense. So Ah Beng has to go to the park in a cab by himself, while his classmates are together in the school bus. After they reach the park, Ah Beng finds out there are stairs and steps and grassy paths galore leading to the park; in his wheelchair, he can’t even reach the park entrance. He is stuck.
Everyone looks at Ah Beng. The teacher heaves a sigh of exasperation, while Ah Beng gazes at the ground and seems to sink slightly into it.
But this is the story I dearly want to tell:
In a primary school class, among the 40 students, there’s one student who is a wheelchair user. Let’s call him Ah Beng. One day, the teacher arranges a class outing to a park some distance away. A wheelchair-accessible school bus is booked, and Ah Beng and his classmates and teacher board the bus together to get there.
After they reach the park, Ah Beng and his classmates, guided by their teacher, visit all the interesting spots in the park. There are ramps, wheelchair lifts and gentle inclines over all the park, so Ah Beng has no problem wheeling himself around, his teacher and classmates helping whenever needed. They explore the flower gardens, the lily pond, the pavilions. Everyone has a really grand time.
Can you see the difference?
In the first scenario, Ah Beng is ‘disabled’, not because he is a wheelchair user, but in the sense that he cannot join his classmates on the outing because of the lack of accessible facilities. He is also ‘disabled’ and excluded by his teacher’s and classmates’ downbeat attitudes – they see him as a nuisance who only gives them trouble. (Note, too, the language used to describe him and his needs.)
In the second case, Ah Beng is no longer ‘disabled’. No, I don’t mean a miracle has occurred and he gets off his wheelchair and starts walking and jumping about. It means he is able to go where his classmates go, conveniently and easily; he is able to take part in the activities his classmates take part in; and everyone welcomes him and helps out the few times it is required, and treats him no differently otherwise. Ah Beng, in his own eyes and in others’ minds, is not disabled.
The social supermodel of disability says that disability does not lie in the person, but outside of him. It is, simply, about enabling the person with disability. How? Via reasonable accommodation. By removing the barriers or plugging the gaps that exist in the physical environment around the person with disability, and by cultivating the proper mindsets and attitudes of the people around him.
For example, I was able to understand lectures during my NIE course, for the first time in my life, because a sign language interpreter was provided for me (a service I lacked during my pre-tertiary education years and which resulted in me missing out big chunks during lessons). Likewise, a person with autism will benefit from and perform to his full potential with a structured regime in place for him at the workplace. And those with physical disabilities, such as wheelchair users, will not be deprived of learning trips to places of interest with accessible transport and facilities to allow them to join in. People with intellectual disabilities can be gainfully employed and as productive as anyone else, and get fair pay too, as long as the job scope is tailored to their capabilities. Can we still call them ‘disabled’ then? They can study, work, make a living, be independent, just the same as non-disabled people.
Once such a view takes root, there should be less people inclined to look at it the other way – that folks with disabilities are a drain on public resources which could be better utilised, that they are unproductive, long-term welfare/charity cases, and all the countless other negative and false stereotypes foisted upon them for far too long.
Catwalking Our Way To Equality
The social model of disability also finds expression in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which Singapore has signed and ratified (it comes into effect on 18 August 2013).
As I read through the fifty articles of the UNCRPD, a realisation smacked me in the face, as if I’d walked into a clear glass pane. It was so transparent and right in front of me, but I didn’t see it till then. Contrary to what I had perhaps been unconsciously expecting, the convention isn’t asking for more or special or extraordinary rights for people with disability.
It is actually asking governments to adhere to something commonsensical – that people with disability are entitled to the same rights and benefits and privileges already enjoyed by the non-disabled in society. When we adopt such a mindset, the abnormal thing to do would be to discriminate against people with disability or regard them as inferior merely because of their disability.
So let us cast off the rusty clanking chains of disability as tragedy and victimhood and inferiority. Let us look at it afresh, with open minds and without constraints. Let us see disability for what it truly is – a normal and common part of the human condition, and just one more facet of the wild and wondrous diversity of humanity itself.
The writer regrets he is not dating any supermodel at the moment, but he is sure he has the right philosophical model in mind.
A shorter version of this essay appeared in the Commentary & Analysis section of TODAY newspaper on 25 July 2013. It can be read online here.