What does 'disability' mean to you?

Shall we take a few moments and think.... what image comes into your mind when you think of the word 'disability'? What do you see when you think of that word? 

Someone who is blind? Deaf maybe. On a wheelchair? (That often comes up doesn't it?) With an illness? Possibly. Someone who probably needs quite a lot help or can't do basic things for him/herself? 

Years ago, a lady said this to me, 'You are a TAP.' 

'What? What does that mean?' I asked. 

'Temporarily Abled Person.'

That was something that started me thinking about how some of us tended to perceive ourselves and people with 'disabilities'. It's something that we don't usually talk about, if at all, because it can make people feel uncomfortable. Also, I guess if we don't see it, we just don't really think about it. 

One of the best, most important things I've picked up in my course is a refreshing, logical and ethical way of perceiving what 'disability' entails. It started with the World Health Organisation (WHO) who established that our old way of looking at 'disability' was way too simplistic at best and completely flawed at worst. We were missing the main idea of what it means for that person who is faced with an impairment - however temporary or permanent it may be. Previously, 'disability' was all about the person with the problem. It's his/her problem - deal with it. You are deaf because you have deafness. You have deafness because you are deaf. This is not only disempowering but it also sets up a consciousness that creates a false dichotomy between deaf and non-deaf; disabled and abled; non-normal and normal; you and us. But something's missing in this equation. What role does society play? Surely, I am 'disabled' as far as society 'disables' me as well? 

I may be say, on a wheelchair. But if no structural provisions are available around me to allow me to be independent (e.g. buses that accommodate me, MRT with lifts, buildings with ramps), now surely that disables me?  Taking another example of a person with deafness. The impairment is that this person can't hear certain sounds at a certain range of frequency. Perhaps s/he was born with a cochlear dysfunction. (FYI, it's very rare for a person to be completely deaf. People with deafness can hear but usually at a restricted range of frequencies and need sounds to be amplified.) But, according to the WHO (and to common ethical sense really), this is only a partial definition of his/her 'disability'. The other half of the equation - i.e. societal barriers - is equally important, if not more so. In other words, if he/she is denied access to a hearing aid or cochlear implant, denied admission to mainstream schooling or equal opportunities at work, then it is not that this person is disabled, but this person has been disabled. It is probably a reflection of social and cultural progress when people within the society are able to see beyond a person's impairment as 'his/her problem'; but to be attuned that 'disability' has many dimensions to it - of which you and I are a part of. 

the diving bell and the butterfly

An ordinary day. At seven the chapel bells begin again to punctuate the passage of time, quarter-hour by quarter-hour. After their night's respite, my congested bronchial tube once more begin their noisy rattle. My hands, lying curled on the yellow sheets, are hurting, although I can't tell if they are burning hot or ice cold. To fight off stiffness I instinctively stretch, my arms and legs moving only a fraction of an inch. It is often enough to bring relief to a painful limb. My cocoon becomes less oppressive, and my mind takes flight like a butterfly. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas's court. You can visit the woman you love, slide down beside her and stroke her still-sleeping face. You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realise your childhood dreams and adult ambitions. 

I've just finished reading this wonderful true life story by a man whose only means of communication is to blink. One blink means no; two blinks mean yes. Bauby had 'locked-in syndrome' since his brain stem stroke, a condition that made him a quadriplegic - trapped in a motionless body but alive with a beautiful mind. For the past two weeks, Bauby was with me as I entered his world on the tube. I read each word in a way I don't usually do for novels, as I realised how much effort it must have taken for him to express each and every letter. This was a young chap (father of two young kids) whose life completely misfired all of a sudden, yet he could reflect all of life's misgivings with such wry humour that made me smile and sigh at the same time. He communicates using an alphabet board. Not a usual ABC sort - but one that arranges letters according to the frequency of its use in the French language. So the 'listener' has to read out each letter on his board and watch out for his blinks that will indicate 'Stop, that's the letter I want'. And together, both Bauby and the listener spelt out and inferred what he wanted to say. 

Humour might get lost through this exchange, but it was the only thin thread through which Bauby was able to maintain his connection to the world that forgot him too easily. It's a Conversation in which was unsaid probably said more. The alphabet board was set up by his speech and language therapist actually. In a lovely way that reminds me of how meaningful my job will be, Bauby blinked:

The identity badge pinned to Sandrine's white tunic says 'Speech Therapist', but it should read 'Guardian Angel'. 

Life's like this

Complaining is silly. Either act or forget. 

Helping other people helps me. 

Organising a charity is surprisingly easy. 

Everything I do always comes back to me.

Overtime I get used to everything and start taking it for granted.

Money does not make me happy.

Traveling alone is helpful for a new perspective on life.

Assuming is stifling.

Keeping a diary supports my personal development. 

Trying to look good limits my life.

Worrying solves nothing.

Material luxuries are best enjoyed in small doses.

Having guts always works out for me. 

- I got these gems of wisdom from a video months ago. (Apologies to the source whom I can't recall...) Took them down cos they resonated nicely with me. One of my positive steps forward into the new year!   :-)

Something begins every Sunday evening

My mind and heart slightly churns

At the thought of you going -

But each passing day brings more light more smiles

It's Friday - My baby is back again! 

Unconditionally.
You are my dearest partner
A hand of beautiful measure
I want to hold until we age

Our lives have undulated
There's no map as there was before
We fum and tum to navigate
Through potholes, bends and hills galore

Your faith is sensed unspokenly
When you hold my hand in yours
Firmly there's such strength conveyed
Through tenderness and thereness

I want to hold your hand as tightly
And hug you close when you feel tired
To face life's uncertainties and fears 
From both within and without

We will seek our paths as a couple
For our simple love's our compass
Wherever it may lead us, I believe
It'll only lead us closer.

What does Singapore mean to me?

Being with my family. The chats, the laughter and the kopi.

The ambiguities of home

Coming home to Singapore has begun to feel slightly uncertain. Perhaps this is due to some of my changing perspectives from living abroad for some time. Being overseas has always been my playground for reflecting and renegotiating my self and cultural identities. After a 13 hours flight from London, I was definitely elated to see all my beloved family members. But as time progressed through the night, I felt a unwelcomed sense of discomfort that pained me. Firstly, things. There were so much of them. I felt almost burdened by all the things that were supposed to make my husband and I happy – they were meant to be presents. This overwhelming presence of material things that I did not need nor want was difficult to bear precisely because I knew they were all given out of sheer love. Giving material presents is a language of love that I know well; I speak it because I know (or had assumed?) it’s what some of my family wants to hear. But should I really when it isn’t consonant with my values or what I believe to be important in life? I was forced to confront myself as well: lovingly and unthoughtfully, I too had bought a lot of ‘things’ for my family from London as a gesture of love. Have I, in turn, become a product of my environment?

Do we really need more ‘things’ in our lives? I felt pained because I knew that if I were to articulate aloud these honest thoughts, I might upset the givers (whom I love). In my mind, I’d already placed a mirror to reflect on myself. There is certainly a space and time for giving presents – there can be much meaning and depth in giving presents. I guess it’s not about the act of giving presents that I am questioning; it is the act of giving presents in a thoughtless or almost irrational way. There are times when the best present to give is to not give. But are we always discerning enough to know when this may be?

My preferred language of love for my family is for us to just Be together. This is ideally in the form of conversation that reveals genuine concern, openness and active listening. Not someone who only cares to talk about what’s overt or superficial. I’d love a conversation in which both persons truly take time and patience to listen to what is said and unsaid because this, for me, expresses mutual love and respect, which are beyond what ‘things’ can ever convey.