Flowers for Algernon

I've just finished reading an excellent book - Flowers for Algernon by Daniel Keyes. Thoroughly recommend it. 

Here's an interesting quote before the novel begins:

Any one who has common sense will remember that the bewilderment of the eyes are of two kinds, and arise from two causes. Either from coming out of the light or from going into the light, which is true of the mind's eye, quite as much as of the bodily eye. And he who remembers this when he sees any one whose vision is perplexed and weak will not be too ready to laugh. He will first ask whether that soul of man has come out of the brighter life, and is unable to see because unaccustomed to the dark, or having turned from darkness to the day is dazzled by excess of light. And he will count the one happy in his condition and state of being, and he will pity the other. Or, if have a mind to laugh at the soul which comes from below into the light, there will be more reason in this than in the laugh which greets him who returns from above out of the light into the den. 

Plato, The Republic

The style of writing mirrors the intellectual development of a young man Charlie who volunteers to be the first human subject of a science experiment which was aimed to smarten him up. The scientists believed that their experiment will work following trials on Algernon, a mouse. Their method of testing success of increased intellect was to get Algernon to navigate mazes of increasing complexity, which he did succeed in doing. It was a simplistic assumption made by the scientists that the complexity of mazes could reflect the complexity of life...

Written from Charlie's perspective, we enter his simple endearing world and journey through his mental maze of anguish and perplexity as his IQ accelerates so rapidly that his emotional development could not keep up.

It's a dazzling process with a grey ending. With a capacity to think and feel at levels of complexity, one can't not invite the possibility of dwelling, of interpretation and of sense-making. Can we? 

I think about the athletes whom I used to work with in Special Olympics. Maybe they are the lucky ones to view life and experience the world through unique, simplistic eyes. 

 

Came across this article and developed a new-found respect for this lady. She articulates my perspective on how health care and health care professionals ought to be.

Doing what's right without fear or favour 
Lee Wei Ling
30 July 2008, The Straits Times
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I WAS born and bred in Singapore. This is my home, to which I am tied by family and friends. Yet many Singaporeans find me eccentric, though most are too polite to verbalise it. I only realised how eccentric I am when one friend pointed out to me why I could not use my own yardstick to judge others.
I dislike intensely the elitist attitude of some in our upper socio-economic class. I have been accused of reverse snobbery because I tend to avoid the wealthy who flaunt their wealth ostentatiously or do not help the less fortunate members of our society.
I treat all people I meet as equals, be it a truck driver friend or a patient and friend who belongs to the richest family in Singapore.
I appraise people not by their usefulness to me but by their character. I favour those with integrity, compassion and courage. I feel too many among us place inordinate emphasis on academic performance, job status, appearance and presentation.
I am a doctor and director of the smallest public sector hospital in Singapore, the National Neuroscience Institute (NNI). I have 300 staff, of whom 100 are doctors. I emphasise to my doctors that they must do their best for every patient regardless of paying status. I also appraise my doctors on how well they care for our patients, not by how much money they bring in for NNI.
My doctors know I have friends who are likely to come in as subsidised patients. I warn them that if I find them not treating any subsidised patient well, their appraisal - and hence bonus and annual salary increments - would be negatively affected. My doctors know I will do as I say.
I remind them that the purpose of our existence and the measure of our success is how well we care for all our patients - and that this is the morally correct way to behave and should be the reason why we are doctors. In NNI, almost all patients are given the best possible treatment regardless of their paying status.
My preference for egalitarianism extends to how I interact with my staff. I am director because the organisation needs a reporting structure. But my staff are encouraged to speak out when they disagree with me. This tends to be a rarity in several institutions in Singapore. The fear that one's career path may be negatively affected is what prevents many people from speaking out.
This reflects poorly on leadership. In many organisations, superiors do not like to be contradicted by those who work under them. Intellectual arrogance is a deplorable attitude.
'Listen to others, even the dull and ignorant; they too have their story,' the Desiderata tells us. It is advice we should all heed - especially leaders, especially doctors.
I speak out when I see something wrong that no one appears to be trying to correct. Not infrequently, I try to right the wrong. In doing so, I have stepped on the sensitive toes of quite a few members of the establishment. As a result, I have been labelled 'anti-establishment'. Less kind comments include: 'She dares to do so because she has a godfather'.
I am indifferent to these untrue criticisms; I report to my conscience; and I would not be able to face myself if I knew that there was a wrong that I could have righted but failed to do so.
I have no protective godfather. My father, Minister Mentor Lee Kuan Yew, would not interfere with any disciplinary measures that might be meted out to me.
And I am not anti-establishment. I am proud of what Singapore has achieved. But I am not a mouthpiece of the government. I am capable of independent thought and I can view problems or issues from a perspective that others may have overlooked.
A few months ago, I gave a talk on medical ethics to students of our Graduate Medical School. They sent me a thank-you card with a message written by each student. One wrote: 'You are a maverick, yet you are certainly not anti-establishment. You obey the moral law.' Another wrote: 'Thank you for sharing your perspective with us and being the voice that not many dare to take.'
It would be better for Singapore's medical fraternity if the young can feel this way about all of us in positions of authority.
After the Sars epidemic in 2003, the Government began to transform Singapore into a vibrant city with arts and cultural festivals, and soon, integrated resorts and night F1. But can we claim to be a civilised first world country if we do not treat all members of our society with equal care and dignity?
There are other first world countries where the disparity between the different socio- economic classes is much more extreme and social snobbery is even worse than in Singapore. But that is no excuse for Singaporeans not to try harder to treat each other with dignity and care.
After all, both the Bible and Confucius tell us not to treat others in a way that we ourselves would not want to be treated. That is a moral precept that many societies accept in theory, but do not carry out in practice.
I wish Singapore could be an exception in this as it has been in many other areas where we have surprised others with our success.

----------------------------- 

The writer is director of the National Neuroscience Institute. 

Tuitioning in Singapore

Interesting news from the BBC today about struggling readers at Key Stage 1 (5 - 7 years). The U.K. education ministry rolled out a national Reading Recovery Programme which provides children with 30 minutes one-to-one support from a trained teacher for 12 - 20 weeks. These children have been identified as having below-average literacy skills. It costs 2,500 pounds per person but it is well worth it. Increasing research showed that investing in early intervention prevents worser problems  (e.g. behavioural difficulties, crime, mental health problems) from developing, which would have cost the government so much more money and headache. 

Most importantly, the programme has been shown to be effective. The government has decided to continue forward with other schemes such as 'Every Child A Writer' to support the writing skills of children who are performing at the bottom 5% of their schools. 

I think such schemes will be enormously beneficial in Singapore. Four years ago, I was teaching 13 to 15 year old Normal Tech students at a regular neighbourhood school (which I thoroughly enjoyed). I remembered my shock when one of my Normal Tech students asked me, "How to spell 'eyebrow'?" Most of my students had severe difficulties in reading and spelling (i.e. dyslexia) even the most simple words. Whenever they were writing a composition, I acted as their spelling dictionary. 

Looking back, I realised that I did not have the knowledge or skills to help them. During my Postgrad Diploma in Education year at NIE, I was not taught what the processes that underpin basic literacy were. It is only now, having undergone my speech and language therapy course, that I fully comprehend it. Yet in that previous circumstance, as an English teacher for my Normal Tech adolescents, I was expected to teach and assess them reading and writing at text levels. All other subjects (Science, Maths etc) also expected them to function at text levels. No wonder so many of them struggled with academic work! 

Sure, if the family can afford, tuition teachers will be the Singapore equivalent of the 1:1 Reading Recovery helper. But there will always be a population of children / adolescents who can't afford that. We need to think about how they can access support. 

Secondly, although families may pay quite a bit for tuition teachers in Singapore, many are not trained teachers or at least understand the processes that underpin learning. The level of education that a tuition teacher possesses is not a necessary reflection of his or her teaching or 'tuitioning' skills. A due concern is when tuition teachers teach in ways which are inappropriate for the child's development. Having said that, I believe that having a tuition teacher is better than having none but it is important for parents to actively collaborate with the tuition teacher on the best ways to support the child and enhance his/her learning.

Person Centred Planning

For a long time, the voices of adults with learning disabilities have been diminished, muted or lost. 

In Singapore, rehabilitation to maximise the skills and quality of life of a child with learning disabilities are not typically considered. There are many possible reasons. One of which may be the lack of or mis-understanding about our brains. Many people assume that we are born with our brains which are static in their growth. ("No point giving therapy to my child with learning disabilities cos s/he has been born with this global developmental delay.") But science has proven to us that this is not true. From the time we are born, our brains are plastic and can continue to develop and learn if the environment is stimulatory and facilitates positive growth. 

Another reason for not providing rehabilitation is probably the lack of it. From all my conversations with health care professionals (i.e. occupational therapists, speech and language therapists, physiotherapists) from Singapore, I know that this is definitely true. We do not have enough therapists in Singapore. Precisely because there is a low supply and high demand, costs for engaging a therapist is pretty high (about $120 and above per hour). Access is inequitable and provision is insufficient. 

The third reason is, I suspect, due to the society's and carer's unhelpful attitudes of persons with learning difficulties. For example, it has been reported that carers tend to underestimate individuals' skills and abilities. As a result, certain assumptions are formulated and these may lead to carers’ use of language that reinforces the stereotypes, constrains opportunities for communication, resulting in lowered expectations of the individual. 

In the U.K., the world of rehabilitation for adults with learning disabilities is currently in a flux of change. There is now an increased recognition of the need to maximise an individual's participation in the process of therapy and to plan intervention that reflects the individual's life aims and priorities. For the first time, we are asking them, "What do you want? What are your dreams?"

I have become a big fan of Helen Sanderson Associates' philosophy and approach called Person Centred Planning.This represents a shift in thinking because now the voice of the client - the adult with learning needs - is sought, heard and considered. It challenges carers' perception (e.g. 'X has always been like this') and invites all stakeholders to consider possibilities (what the individual can do, might be able to do, want to do) rather than limitations (what the individual can't do, will never be able to do).  

I wonder how long Singapore will take to embrace such a philosophy and approach. 

When will our paradigm shift on how we perceive people with learning difficulties begin? Have we began? 

Have you? 

the sandwich generation

The sandwich generation refers to young couples who feel a strong obligation and responsibility to take care of their ailing parents and who also have their own children to take care of at the same time. It can sometimes be a struggle - both emotionally and physically. For people whose parents have dementia, some have described it as parenting two different sets of 'children' because people with dementia may exhibit behaviour that is inappropriate and difficult. 

To get a glimpse of what I am trying to describe, watch this video.

A recent study revealed that for older people, deterioration of cognitive or thinking skills can occur even without dementia. Mental functions may slow down but there are ways to prevent it. Our brains are plastic; this means that its structure and function can be modified or altered depending on how and how often we use its parts. 

In a nutshell: Use it or lose it. 

If we exercise and stimulate our brains constantly through social contact, conversations, reading, thinking, reflecting and combine that with physical exercise of our bodies, we CAN slow down the effects of this cognitive deterioration. Apparently, even doing Sudoku or word puzzles also constitute as exercise for the brain. Brain gym anyone?

Sharing Therapy Moments

I had a couple of very lovely 'therapy moments' today. I am really enjoying my placement - working with adults with communication problems has been very rewarding. 

 

Lovely moment 1. I see a patient with Multiple Sclerosis every day to work on improving her voice quality and self-monitoring of her understanding. She's about 60 and had MS for 40 years of her life. She is such a pleasure to work with - always engaged and motivated during therapy. No matter how tired she is or if she had a bad day, she would always want to do work with me. A dream patient! Well, today she reported that she has been feeling a lot more confident as a communicator and finds that her speech is getting clearer. She said she had a wonderful conversation with the other patients in her room yesterday and not once did any one of them asked her to speak louder or to repeat because she wasn't intelligible, which were frequently what her listeners had to do before we started our therapy. She said she felt good to be part of the conversation and was pleased that she remembered the strategies we've been working on and how well they've worked. 

I am most certainly not saying that I'm a miracle worker here. This lady's progress is because she has been so 'switched on' throughout the therapy process, making the effort to work on her homework everyday. Such engagement and motivation are key factors for good prognosis during any therapy. 

Lovely moment 2. With a lady with Vascular Dementia. She's 80 years old. Bless her. She also has a gamut of many other medical difficulties. I am currently doing assessments on her to find out what her swallowing and speech difficulties are. Saw her once before and we didn't hit off on a particularly great start. She was a bit agitated and didn't really want to do much with me.

But you need to understand that her behavioural difficulties are partly due to her medical conditions, and not completely due to her trying to be a 'difficult patient'. This is something that not many people comprehend. People who have brain lesions, injury or trauma at the cerebral frontal lobes or at the right hemisphere are likely to exhibit behavioural and cognitive impairments. This second time, I prepared myself that I might need to negotiate with her because I aimed to complete all my assessments. She was great in terms of agreeing to do them with me. During the assessments, she kept saying 'I can't do it' and pushed the booklet away. We had a very good chat at various times and talked about how she feels about her communication. Apparently she feels she can't communicate as she used to and people often say they "don't understand what she is saying". Her awareness that her condition is deteriorating has been eating her self-esteem and it was now clear to me why she was previously unwilling to engage. While she does have significant cognitive problems, affecting her ability to follow and participate in conversations, but if people can slow down or use more simple language, she can and is able to converse.  All I did was to listen to her and told her to be patient and try to focus on the positives. I think when we get ill, it is only too easy to focus on the negatives. Sometimes, when people are feeling discouraged, what they really need is simply active listening. Well, I did just that and felt very nice that I managed to help make her day a little brighter today. 

 

Doing what I do, I've come to realise that one's identity, self-perception and self-esteem can be so tightly intertwined with one's ability to communicate. I quite like this quote from Schiffin, a social psychologist, "Conversation is a vehicle through which selves, relationships and situations are talked into being." 

Schizophrenia

Just felt like writing a bit on schizophrenia today. I've got a patient on my caseload who had a stroke a couple of months ago and has a history of schizophrenia. Before I studied about this psychiatric illness, I remembered that I used to think it was all about having multiple or split personalities. But it turned out that that was more a myth perpetrated by the media than the truth. Schizo is actually more accurately defined as the splitting of mental functions - a discrepancy between thinking and feeling. The jury is still out as to what causes it but there is probably a genetic link to it and relates to a chemical imbalance in the brain. Many suffer from debilitating hallucinations and delusions which could be firm convictions of what they are perceiving even when you show them evidence that indicate otherwise. 

Check out this video:

http://www.youtube.com/watch?v=H_jYqSA_fJk

There is nothing scary about mental illness. I believe there is a continuum running from 'normal people'  (what is 'normal anyway?) to people who have psychiatric disorders e.g. obsessive compulsive disorder, schizophrenia, personality disorders etc. Interestingly (for me), people with mental disorders do develop speech and language difficulties since their communication with people is often negatively affected. They might even be unable to speak or have severely disorganised speech ('word salads'). Next week, I'm going to try to find time to assess my patient to try to get a reliable yes/no response and to assess his level of understanding. Since his stroke two months ago (which appeared to be quite a serious one), he had no spoken output at all and his level of understanding has been a big question mark for the team. So no one really knows how much he really understands since he can't really gesture or talk. Hope I'll get somewhere with him next week!

Ah! Brits!

I have been reading an interesting book about British behaviour and conversation codes. It tickles me because for the past year and the half, I've experienced all their quirks but was not always quite quick enough to discern their meaning between the lines. Sometimes they annoy me because I don't 'get' precisely what they are saying; but at most times, they leave me with a one of those inexplicable silent smile or smirk. 

1. Brits love irony

Irony means saying the opposite of what you mean. The British may not always do that, but as a non-Brit, you really gotta be alert to the possibility that they will be! I've long learnt to never take what they say at face value. 

E.g. when you ask them a straightforward question such as "How are the children?" Be equally prepared for a straight answer "Fine thanks", and for an ironic one, "They are delightful - charming, helpful, studious, obedient through and through." To which the reply should be, "Oh dear... one of those days aey?"

2. The understatement rule

Apparently, most Brits frown upon earnestness, gushing, boasting, expressive zeal and emotion. (Just remember they are the opposite of Americans!) They would rather feign and go for deadpan indifference or calm understatements. I remembered that I was really grateful to my Phonetics tutor for being such a supportive tutor and was openly expressing my appreciation to her. She ended up looking stony as if I had hit her handbag on her head. There was a very awkward silence. Later my Brit friend said, "Ermm... you just did quite an un-British thing there, which probably embarrassed her [the tutor]... um Brits tend to say 'thank you' with a bit of wry humour and try to keep it understated." Alright then.  

So a debilitating, critical illness may be described as = "a bit of nuisance"

A truly horrific experience = "not exactly what I would have chosen"

A sight of striking beauty = "quite pretty"

An outstanding performance = "not bad"

An act of abominable cruelty = "not very friendly"

An unforgivable stupid misjudgement = "not very clever"

A disgustingly filthy restaurant with unbelievably rude service = "I wouldn't recommend it"

To be able to discern what is between the lines, you really have to watch their facial expressions (especially that raised eyebrow!) and tone of voice. These are the betrayers. Now I know what my classmates mean when they say "I've barely started my revision." Hmm. 

3.  The self-deprecation rule

This goes hand in hand with their tendency to understate. This is customary and is always done so subtly, you really have to catch it when it happens! How many times I must have taken what my friends said at face value and didn't realise that I had completely misinterpreted them! 

Here's a good example from the book: 

So you meet this man and find out he is a brain surgeon. When you ask him why he chose this profession, he might say, "Well, em, I read PPE (Philosophy, Political Science, Economics) at Oxford, but found it all rather beyond me. So er, I thought I'd better do something less difficult."

You laugh (of course), saying that brain surgery surely couldn't be easier. He then quickly enters into another self-deprecation, "Oh no, it's nowhere near as clever as it's cracked up to be. To be honest, it's like plumbing with a microscope - except that plumbing is probably more accurate."

Then when you later find out that he had a scholarship because of first class honours at Oxford, he says, "I was a dreadful little swot." 

The Brits are a quite funny sort, aren't they? 

Finding Hope and Focus

Day 5: Neurological Ward

I am at another placement now. This time - a hospital. I have been observing therapy sessions of my clinician with a lady  who recently suffered from a hemorrhage (vessel bleed) on the right side of her brain. She is a young mother with a 4 year old child. Her hemorrhage is related to other cardiovascular and neurological disorders that she had since young. Very sadly, the part of her brain that is most severely damaged is the hippocampus. (The hippocampus plays a critical role in the storage and encoding of memory.)

As such, she now has severe amnesia which affects the storage of new events in her long term memory. New events that we perceive or experience may be coded into our store of long term memory with the help of the hippocampus if our brains deemed that should be so. This lady would say something and forget that she said it within 5 minutes and repeat it again. She is often disorientated as she can't retain the memory of what she did that morning, what day it is, and what she did during therapy yesterday. This makes learning and recovery difficult. The prognosis for such memory disorders is often poor and it is possible that she may need 24 hours care for some time to come. It is obvious that she used to be a very articulate and intelligent lady before the incident. Like the tide, the memory loss ebbs and flows. The knowledge of this loss may be temporarily forgotten but when the memory of it returns, it hits her hard. And her cycle of grief begins again. How does one get over a grief that refuses to be remembered to be stowed away? 

Neurological (Brain) disorders express themselves in an incredible number of ways. Patients may be diagnosed with multiple sclerosis, traumatic brain injury (e.g. due to car accidents), brain tumors, stroke, meningitis, motor neuron disease, arterial venous malformation, etc. I meet pain and loss at this ward. I sense them sometimes when patients lower their heads down as they pass me, when their smiles betray a brave front, and when a young 30 year old man (with multiple sclerosis) asked me, "So what's it like out there?" The Buddha said suffering is a part of life. Suffering is a language every human being speaks. The Buddha also said cessation of suffering can come with mental discipline (the right mindfulness). But if a person's brain (of which the sense of mind and self originates) is damaged, how might this "right mindfulness" be cultivated in order for suffering to be ceased? 

But you should not think that all's gloom in the ward. I derive immense deep pleasure and learn a lot from supporting, interacting and working with them. Also present and revealed in gentle beautiful ways is beneficence. I meet her when I notice my bed-ridden patient (with a degenerative disease) holding hands with her blind and deaf husband, when I observe the dedication of the therapy team and nursing staff, and when I see the 71 year old mother of a patient sitting by her daughter every single day for hours.

"I find hope in the darkest of days and focus in the brightest. I do not judge the universe." Dalai Lama  

Clinical Enjoyments

It was a good day. I ran two sessions today. Both were successful, from my perspective. Of course there are always points for improvement (and I definitely take them onboard seriously) but in terms of the objectives I had set for each session, I was quite pleased at how they went. 

My first session was a speech intelligibility group, with three clients. In this group, there are two gentlemen - one is 73 years old, the other is 38 years old. I also have a lady, who is 50 years old. All of them had a stroke and consequently now have varying severity of language and speech disorders. As you might know, for most people whether you are right or left handed, the left side of our brain is the side that processes language and speech. All three of them encountered a stroke on their left hemisphere. Because their language and speech processing systems were damaged, they have both aphasia and speech apraxia. 

Both conditions are probably very unfamiliar to most people, unless you have them or have family members/friends who have them. Just to set the context, maybe I should explain a bit about the conditions most of my  clients have...  Aphasia is a language disorder that affects every aspect of language - understanding of spoken words, talking, reading and writing. E.g. my client might have trouble spelling at a one-word-level; or difficulty comprehending what someone is saying. Or reading might be very effortful at a paragraph level. The key thing to understand here is that aphasia is not just a difficulty in using language but it is also a difficulty in thinking. We might not realise this but we usually think in terms of language. Some of my clients reported that their ability to plan/reflect/know what they want to say or are saying is diminished. Their mind becomes somewhat 'blank' - languageless in an isolating sense. Almost as thought someone erased the blackboard in their minds. Or when someone says something to them, it simply doesn't quite register or click in their minds. 

Speech apraxia is a difficulty in planning and sequencing speech sounds. It is due to brain damage in the speech motor area. E.g. my client might say 'loung' instead of 'young', 'buflaytter' for 'butterfly', 'hhhhhandy' for 'handy'; 'defli' for 'definitely'. People with apraxia have difficulties initiating speech and in controlling sounds within words. Errors are very unpredictable. One moment it might be a bit better, in another moment, the sounds might not come out at all. E.g. sometimes if they want to say 'vest', the 'v' sound just doesn't roll out exactly when they want them to. But when they are not thinking about producing that sound, or if they are not trying hard to say that sound, the 'v' in 'vest' might come out smoothly and clearly. 

As you might imagine, aphasia and apraxia can be very isolating and frustrating. Relationships change. Work may no longer be possible. Communication becomes so difficult, it's tiring. To say that they make everyday, basic communication difficult is to understate the impact of their impairments on their daily lives, their self-identities and their loved ones. 

During our group sessions, we often discuss about issues surrounding coping and living with aphasia and apraxia. Today we spent two hours discussing strategies they could use to increase their listener's comprehension of their speech. Naturally, it led to a discussion about everyday barriers they face. These barriers may be external (e.g. strangers who interrupt them and do not give them time to speak; people who pretend to understand them when they obviously didn't, etc.); or internal (e.g. choosing not to talk to strangers due to low self-confidence; choosing to keep quiet during conversations for fear of judgement; embarrassment in stating upfront that s/he had a stroke so as to request for patience when communicating, etc.). We shared such a fruitful and engaging conversation. We laughed, shared, and listened. I was so pleased to see them spontaneously offering suggestions and being supportive to one another. Today, one of them said that the group sessions have helped him to feel more confident as a speaker outside of the clinic setting. :) In a way, over the past 12 sessions, I've seen them develop as a group. It's a lovely feeling being their therapist. 

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!   :-)