Avalon's Handbook: How to love and live with someone like me | understanding #disability | #avarecs
How to love and live with someone like me: part two of a series of posts. ICYMI, read part one here.
In order to discuss ableism, and how it manifests in relationships with people like me (see part one in this series) - we must first understand what disability is. According to Defining Disability: Understandings of and Attitudes Towards Ableism and Disability (Friedman and Owen),
Disability may be defined as "preventing or slowing action, as an atypical function, a lack of independence, and as a socially constructed obstacle."
This is just one concise definition of disability explored through psycho-social and sociological aspects. It is by no means the only way to define disability, but for now, simply knowing this fact means becoming aware that disability goes beyond what is visible and easily identified, like in those few examples we had in our civics education textbooks from school: seniors using wheelchairs or walking aids, those who are visually impaired and use a cane, those who are Deaf and use sign language to communicate. Perhaps later textbooks might also include examples of PWDs that have intellectual disabilities and learning disabilities, although those textbooks might be unfortunately late to the game of teaching children about them. But what these standard school textbooks give you are just examples of disabilities, and this list of examples is far from being exhaustive. We need to go beyond textbook examples, and unlearning the assumption that a list of examples - even one that is continually updated as society becomes more sophisticated - is how disability is recognised and understood. This is especially true for Singaporeans: we are taught these examples in school, and then most of the time, teachers have to quickly shift back to academic subjects, which are considered more (and not equally) important. What then is likely to happen is this: if we encounter a person with a form of disability that isn't immediately identifiable by that example we remember from our school textbook, we don't realise we have to equally treat this PWD without discrimination and ableism, and thus make appropriate accommodations for them, and we then pass them by.
In order to truly understand disability - and thereby know how to not be ableist - you need intrinsic skills that allow you to fully put in yourself in the position of the PWD. If you educate someone so that they have the ability to put themselves in another person's shoes, then they are more likely to independently identify disability beyond the textbook illustrations they were taught in school. It involves developing character values such as empathy and compassion; broadening an egocentric attitude into one that is others-centric and non-discriminatory against people who aren't like them, or the people they are familiar with in their own social circles; and cultivating the desire to continually learn how be a better person. All that will consequentially help us learn how to not be an ableist - by viewing the world through the perspective of PWDs, which is then manifested in action - than a list of examples ever will. It will also help us check our discriminatory behaviour towards people in other sectors of society that are considered minorities or different.
It is in effect simply the age-old adage of teaching a person how to fish versus giving a person a fish - or giving the person examples of the different species of fish in a textbook (or blogpost). This is why in part one of this series, I wrote that learning how to love and live with a non-abled person has to come from love itself first and foremost, and not by simply applying static how-to suggestions alone to try and improve your relationship with a PWD. Because that would be doomed to failure: your actions will never seem like enough.
Unfortunately - and bear with me as I explore this culturally - the trend I see is that many Singaporeans generally lack in this innate desire to learn how to truly put themselves in another person's shoes, be they abled or disabled. As kids we were likely often scolded by our well-intentioned parents: "Don't be kaypoh!" or "Why are you such a busybody, do your own thing!" So even if a child has an innate desire to be helpful towards their friends and neighbours, it is often snuffed out, and then redirected towards only doing their 'own thing' - which generally tends to focus exclusively on the academic. Instead of being urged to 'find a need and meet it', we perpetuate the attitude of "don't be busybody". Thus, as adults, we no longer (if we ever did) see that we have to anticipate the needs of others to be a responsible member of society - we just need to focus on whatever obligations of our own, and it ends there. If someone needs help, they will ask for it, so you don't need to bother identifying their needs and offering them help in those identified needs. Otherwise, "don't be kaypoh."
Singaporean society generally tends to value self and family, but nought much more. While growing up, if we wanted to help a stranger, we might have gotten criticised like so: "If you have the time to help other people, why not help [insert family member] with [insert example of family member's need or some other familial obligation]?!" Popular examples include: visiting grandparents more often, help with housework more often, tutor your younger siblings/cousins with their schoolwork, help out in parents' businesses (if applicable), babysit for your infant/toddler nephews/nieces - the list goes on and on. We should be considerate of others, but these 'others' should be family only, even if you are willing to be considerate of both family and other human beings beyond the scope of family, something that young people have the energy and time to actually achieve successfully.
Then when we grow up and become parents ourselves, our perception of what our child's needs are - they come first and foremost. Nothing wrong with that emphasis of course, that goes without saying. But too often this mindset is limited to the extreme, such that we actually have blinders on when it comes to anyone else besides our offspring. It is as if we think we are the only motorist on the roads and other vehicles do not matter, because all that matters is that we get to our all-important destination. Using a turn signal would cost the driver nothing, but such myopic, selfish drivers are so blinded and consumed by their journey to their destination, using a signal will not be worth the bother because they need to pour all they have into getting to their destination. Swap the analogy of the destination with your child's needs, and the young Singaporean parents I described with those drivers who think they are the only motorist on the roads. This is the cultural phenomenon I am often observing in this generation. We mistakenly see our goodwill as finite, and limited - to an either/or, Us vs. Them situation - instead of seeing our capacity to be gracious and compassionate from a broader perspective. Such a limited perspective causes you to think and believe that the all and utmost that you can ever give to another human being, a complete 100% is already given to your child or your family unit, and you will then have nothing leftover for other sectors of society, not even a morsel which could still make a difference for one person, through simple words and deeds. It may even be taken to further extremes by some Singaporean parents who don't think it necessary to talk to other people in public with any consideration and kindness except when speaking to their child.
But the truth is, goodwill is not finite. Many considerate acts of kindness, and the adopting of non-discriminatory perceptions of other humans - these cost you nothing. That kind act will not deplete your ability to give to your first priority, and your child will not suffer as a result of you being considerate and non-discriminatory towards all the other lower-priority sectors in all of society. We need a perspective that considers not just ourselves and our families, but also other sectors: our friends, co-workers, neighbours, service providers, strangers, and people with less privilege. What you can give to these varying but lower priority sectors is of course limited by what your resources, but these secotrs of humanity should be considered in the first place. From my observation of many Singaporean parents in public, There seems to be no prioritisation of the giving of goodwill according to a set of multiple concentric circles, an internal system that illustrates an all-inclusive perception of society that you can contribute to, where the most important, family, is the smallest centre in the middle, friends in the next bigger circle, co-workers in the next one after that, and so on, like Russian nesting dolls. A limited and finite perspective is of just of two circles that equate to self and family; a Venn diagram without any other circles representing every other group of human beings you will come across in life. If we adopt the limited mindset, we will not be able to even think about marginalised sectors of society such as those with disability. We need the perspective of the concentric circles in order to even get to ableism to begin with.
Getting back to the gist of being able to adopt the perspective of a PWD, of finding a need and meeting it, here is an example how it all that would look like in the real world, versus the flawed mindset that tells us not to be busybody and that our goodwill is finite and should only factor in self and family.
Imagine that you are at the supermarket picking up groceries for the family, after which you are ferrying your kids to their extra-curricular activities e.g. music or gymnastics lessons. Behind you in the queue is someone who is actually a PWD, but they don't exactly look like ones from those school textbook examples years ago: instead, they are young, well-groomed - using a walking stick, yes, but otherwise they look exactly like a 'normal' person. Giving your position in the queue to this stranger behind you will shave five minutes off the buffer of total extra time for transporting the kids, - for instance, from a total of extra 15 minutes - that you had planned, so that you could comfortably ensure your kids arrive at their classes and get ready, before their teachers start class at around 15 minutes after arrival. Being 15 minutes early is more comfortable than being ten minutes early, which is what you will have instead if you gave up your spot for the PWD.
Somebody with the either/or, limited and finite only[self+family] mindset would see that these extra minutes being used for their kids to comfortably get their kids to their lessons before classes start - specifically it has to be 15 minutes, and not ten - this is the only right way to go here. They will not consider another option unless it is an extreme life-or-death situation, and one that successfully takes their attention away from maybe looking at their kids roaming around (or worse, looking at the phone in their hand, the default mode for all other Singaporeans without kids in tow). They wouldn't have even noticed this stranger queueing behind them, in fact, so they would not have then pondered whether this stranger had an actual disability, or whether this stranger could then benefit from being given their spot ahead in the queue - even though it doesn't cost them a cent to make such an offer, but help equivalent to the price of five minutes' worth of comfort.
Contrastingly, someone else who has the concentric circles mindset would have another thought process instead: they would be observant of the actual human beings near them, then automatically, from a force of habit, they would find a need, and - should a need be found - see if they could meet it. This thought process might go like this: they automatically notice the person queue up behind them, then they become aware that this stranger is a PWD who has impaired mobility and uses a walking stick. Their thought response may lead them to consider if the PWD could be helped in any way, such as: help with a shorter wait time (because standing for long might be painful for them), or help carrying their groceries which might be heavy (and then realising they wouldn't need such help because they were using a trolley, and this idea would be eliminated), thus arriving at the thought about giving the PWD their spot in the queue. But not before also weighing whether this was going to cost them a lot of unwanted stress and anxiety for a higher priority of humans to them - their kids - if they were to give up their spot. The effort required to open their mouth and speak to the PWD is not at all counted as an additional sacrifice. The cost is five minutes. And so, if this five minutes could be spared, they would willingly offer the PWD their spot in the queue. (Even if the PWD doesn't accept our offer, we did our part, which is all we can do, isn't it?)
Sounds familiar? Guilty as charged yet? I see or hear of examples of Singaporean self-absorption every time I am in public. If you don't, perhaps you yourself suffer from what I half-jokingly refer to as 'Singaporean Self-Absorption Disorder', of which most of us are unaware, therefore we are likely undiagnosed and untreated. I know all this seems like a digression from the topic of this series, but it isn't - opening our eyes to this issue of ableism in a larger context that we can see every day, through both positive and negative examples, helps us to see it introspectively as well, which we can then inculcate in the next generation. I shall end this observation of contextual perspectives here, with this chart below from SPD - it illustrates how others-centric we are (not), compared to other ASEAN countries, through volunteerism statistics - so as to complete my point on this.
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| Oh yay! We are better than... Cambodia, Vietnam, and ooh! Thailand you guys are catching up! Go Team Singapore! |
So, in a nutshell, this is my take on understanding disability - by first developing intrinsic character values, attitudes, a desire and motivation to be a better person, so as to consequentially learn to fit yourself in the theoretical shoes of a PWD. I shall henceforth assume you have begun to try out putting on such a perspective, and maybe agree with me on this, even if only in part. I will now go into the definition of disability proper.
Using the definition cited in the first paragraph of this post, I am going to pick out just one component of it - that of atypical function - and further describe what it means from my point of view. It is not just for the sake of trying to keep it simple that I only choose one portion of this definition to expound on; I also feel that the definition's other components of limited action and lack of independence are not entirely universal or inclusive. Perhaps it would require that I read the source article in its entirety or learn from an academic well-versed in these theories, in order to change my opinion, but for now exploring that would take me offtrack from writing this. That component of socially constructed obstacles, however, is not untrue, but from my layperson point of view, it is not so much a definition of disability, than it is a form of ableism - discrimination that is applied alongside other forms of ableist obstructions that are a reality for PWDs (like how water can be in three forms: solid, liquid, gas). Again, this is how I understand it, as someone who is but a PWD myself.
So, let's start with atypical function, and what that means. I will not be striving for academic accuracy here, but mere usage of basic logic and simple words as much as possible. That may read like overgeneralisation, but I am writing with the general public in mind, not an essay for a class - especially since my ADHD brain already means I tend to be verbose.
Atypical simply means that which is 'not typical'. It is a more equitable term than 'abnormal', which has more negative connotations. Referring to us using words like 'abnormal' impacts those of us who live with disability negatively, because it implies that there is something broken inside us, in our minds and/or bodies; therefore using that word is an assault on our sense of self. If we are 'abnormal', it means that there is something 'wrong' with us that needs 'fixing' - or worse, is irreparable. It isn't just about our self-esteem: the usage of negative wording in describing PWDs in turn affects how we try to live our lives, and how others treat us if they perceive us as deviant from the norm. We will spend a lot of effort trying to adapt to a so-called 'normal world', which in reality is simply a standardised world that is not made for us. If we strive to achieve standards that are supposedly the 'right' ones but aren't adapted to our capabilities, then we will encounter failure far more often than our otherwise 'normal' peers. Thus, 'normal people', meaning all human beings who are not 'broken' like we are, are actually better than us, because you can achieve success by said 'normal standards', and you aren't deficient in any way. We cannot match up to your standards of success, thus we are sub-par and not your 'equals'. Therefore we do not deserve equal rights like you do, or to be given resources and accomodations that help us access those equal rights. If we want what you have, that is to say, to have - equally - in all measures, as you do, then we should just fight for these rights, fight to change ourselves so that we can fulfil the impossible task of not being disabled, and if we fail it is just our own shortcomings and character definits to blame, not due to any medical conditions that we have. A pervasive misconception throughout society will exist, because through casually repeating inequitable words, we perpetuate attitudes and actions that stigmatise us. So this isn't about us being so sensitive about our feelings and feeling hurt by small things like incorrect words being used. This is not about us being pussies who cry foul all the time about how life for us is so unfair. We know that life is unfair for you too. But even if we were devoid of feelings, the usage of words like 'abnormal' that denote a quality of 'less than' cascades into real world applications. Every time we describe disability as abnormal or deviant, we then perpetuate the stigmatic perception by society that there is something less-than in those of us who live with some form of disability. Simply because what is repeated through word of mouth and in the media gets reinforced and popularised with each repeat. Hence the usage of the more neutral and thus equitable term 'atypical', as opposed to words such as 'abnormal'. Being typical means you conform to the general - agreed-upon, widely accepted, or proven by research - characteristics of whatever you are describing, such as typical functions of the human body - which brings us to the second half of the definition.
The term function in this context can be further divided simply into to two forms - function of our bodies, and function of our minds - within the context of our health. Bodily or physiological functions are manifested in our physical bodies: be they external and visible to the naked eye, or involving our internal organs and their systems. To make it straightforward for any layperson to understand, think of common medical specialties that would have clinics in an outpatient medical centre, all displayed on a directory mounted on the wall of the centre's lobby. Specifically, think of medical specialties that directly refer to the main parts of the human anatomy - examples such as cardiology (heart), respiratory (lungs), and so on - these are examples of our body's physical functions. The function of our minds, by contrast, relates to our mental health, primarily psychiatric conditions. These conditions usually involve differences in brain chemistry or structure. But that does however make things a bit complicated for someone who is not medically trained: what category then, physical or mental, does neurology actually fall under? I often joke with doctors that patients whose symptoms cannot be explained by all other specialists will end up being referred to neurology or psychiatry. Again, my lay explanation for this is generalised for basic understanding, like so: conditions not found in psychiatry's manual (the DSM), but are neurological in origin or have symptoms relating to the brain or the central nervous system (nerves in our body), they all generally go to neurology, which would then mean they are conditions affecting our physical bodies, because the brain is a physical part of the body. And so, function refers to both mind and body, mental and physical. The key similarity in both, which is really important to note, is that whether it a physical or mental condition, it is an actual medical condition that is diagnosed and treated by a doctor. Both will translate to specific differences in the way their body or mind functions, because of the medical condition that a patient has, and these differences are not a personal failure of the patient.
Back to simple logic (which to me often means something that can be explained with pseudo-math):
atypical × function = disability
Where:
atypical = not typical, AND
function = (body, mind)
Therefore:
Disability = (function of the body and/or mind) that is (not typical)
In the next part of this series, I hope to build upon the definition of disability further in order to explain ableism in my own words. We used to simply term it as discrimination towards people with disability, bringing to mind how we shouldn't treat PWDs negatively. But we use ableism now. Is there a difference? To be honest, just looking at popular definitions of ableism online - instead of reading academic articles and such - I find the present general understanding of ableism rather incomplete, if not inaccurate. This is what I hope to write more on in my next post. For now, I shall end this wall of text.