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
-------------------------------------------------------------
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?